Altira Breast Cancer [Archive] - Canine Cushing's Information and Support Forums

Altira

10-12-2013, 03:58 AM

Thank you Stormee for allowing me to invade your thread. And due to the fact that this is a dog forum I will tell you that my Kira was aware of a problem from the beginning. When my Mira got cancer that killed her 22 days later.... My Kira knew first. My normaly good Kira started distorying things. She had my earphones on the floor several times. Finally she distoryed them. This was so totaly unlike her. A few days later Mira was diagnost with deadly massive liver and lung cancer. I always had this feeling that Kira was trying to tell me something. Now I know she wAs. In the last several weeks again Kira has been distorting things. Panting and been anxious. She has over turned my dirty cloths basket many times. Ripped up a pair of my underwear. Last week she threw up a pair of my underwear. They weren't chewed up at all but rather swallowed whole. Last night while on a walk she stopped to poop. It got stuck. Great so I put a bag over my hand and helped her pass whatever it was. When I got home I dumped it in the toilet. Swished it around with a stick and discovered another pair of my panties. Swallowed whole. Kira has never done this before. I had a cat scan done a month ago for possible kidney stones (which I also have). There it was noted that I have an inlarged cervix. I have yet to have that checked out. But my right breast is well the lump is massive. The first place said it was just a calcium deposit. Come back in six moths. But it keeps getting bigger. So I expited a recheck and now her we are. Iminate biopsys chemo to start post haste and surgery. I supost I should her that Pap smear soon too. It's not looking to good. I can think of nothing worse then chemo. I always said I'd rather died then throw up all the time. But here I am. Thank you all for your prayers. But since loosing Mira my look at life has all changed. And bless my Kira for being so in touch with me. For her desperate attempt to warn me. To all the angels for your suport and most of all to Stormee for her devoted friendship and her darling husband. Cindy I hope you see this and can offer me guidance throw this dreadful chemo that I fear even more then death.

Budsters Mom

10-12-2013, 04:37 AM

Janis,
I have a friend who is one of 7 sisters. 4 of them have had various stages of breast Cancer. All four are still doing well after many years. They felt exactly the way you do about Chemo. It is the reason they are alive to share their stories today. My thoughts and prayers are with you. Many healing hugs for you and your wonder dog. Xxxx

Squirt's Mom

10-12-2013, 09:16 AM

Aw, Janis, I can relate to a small level with what you are going through. But I've been very, very lucky. My OB/GYN found pre-cancerous cells in my cervix and uterus - both were removed immediately and the surgery got all the cells so no chemo was required and testing through the years has come back clean. Then almost 20 years later, a tumor was found on an ovary. They whisked me into surgery that day and removed a 20 lbs ovarian tumor, intact, benign. So again, no chemo required.

The tumor story is kinda funny - I noticed it when I lay on the floor to get something out from under the bed. It felt like I was laying on a basketball and I called my hubby in to see. I could lift my shoulders and legs off the floor and roll around on my belly! I knew I had been gaining weight and knew I was miserable - I had reached the point I couldn't stand to be hugged or wear clothes that were the least snug, but I put it all down to getting fat. When I went to see the OB/GYN and told him the basketball story, his comment was, "Well, I've heard that before and am willing to bet you are full of crap!" And he meant literally! :p

And I'll be honest - after finding the tumor, I begged to have both breasts removed asap since they had already found 3 issues in my female organs. They refused. I've since had two scares on mammograms that turned out to be nothing...yet I again begged to have them removed and again was refused. Made so sense to me - I have absolutely no use for them at all and consider them a nuisance! :D Yeah, I know - weirdo, huh? ;)

I hope and pray some of my luck will fly your way and you will sail through chemo with minimal discomfort....and that when all is said and done, you get clear reports for years to come, too. You will remain in my prayers and thoughts, and will be named when I light my candles in the mornings, honey. I have full faith the little things like this have great power.

Many hugs dear lady,
Leslie

Squirt's Mom

10-12-2013, 11:17 AM

Folks from all over pulling for you, Janis!

http://i752.photobucket.com/albums/xx168/girffie/BreastCancerAwarenessmonth-Oct_zps16bebd37.jpg (http://s752.photobucket.com/user/girffie/media/BreastCancerAwarenessmonth-Oct_zps16bebd37.jpg.html)

Trish

10-12-2013, 04:16 PM

Hi Janis
Thoughts are with you as you fight this, chemo is not as bad as it used to be either! I always say to take all the meds they prescribe, especially the nausea ones as it is easier to keep it at bay than tackle it once it sets in. I look at how strong you were in fighting for your doggies so you can now harness that strength on yourself! Your Kira is an amazing instinctive girl and I am sure she will be right by your side fighting and cheering you on as we will all be as well. Your a good friend Stormee xxx

Altira

10-13-2013, 12:26 AM

October 12, 2013

To my friends and family,

Warning… this is very personal, (not that it bothers me) and rather graphic… and contains probably a lot more then you ever wanted to know.

In 2012, I was diagnosed with Glaucoma, which was no big deal cus it can be controlled with daily eye drops now. On Feb 1 2013, I noticed I had blood in my urine. I went to the doctor immediately and it was confirmed. From there I had an ultrasound, which confirmed kidney stones. I was sent to a urologist who ordered a cat scan that found a fractured back, liver cysts, kidney stones in both kidneys, enlarged cervix, hardening of the arteries, osteoporosis and aorta blood flow problems. Then I had a bladder scope (camera) thing done and no problem was found there. From there I was sent to a kidney doctor.

In the mean time, my GP (general doctor) ordered a mammogram. I got a call back from them telling me they found something and I needed to come back. It was then that I noticed there was something hard in my right breast. I went back and they did an ultrasound. The attending doctor said it was just a calcium deposit. They weren’t concerned about it but said I could have a biopsy done if I wanted. But I do need to come back in 6 months for sure for a recheck. Well I’m TERRIFIED of needles so I opted to come back in six months. But almost right away, I’m noticing that whatever is in my right breast is getting bigger fast and my nipple has disappeared.

I had a consultation with the kidney doctor and he ordered further tests and told me to stop taking calcium. I was no longer showing blood in my urine though. About two weeks later, I ended up in the hospital with extreme kidney pain. The worst pain I’ve ever had. A constant pain that just would not let up. You can understand why they say it’s worse then child birth because that comes in waves and this pain is constant. I had to sit in the waiting room for at least 30 minutes with my hand covering my face and my body constantly moving trying to push away from this pain. By the time the doctor came in to see me, the pain was suddenly gone! I had brought all my medical records with me. I demand that all doctors give me reports of everything. This is my legal right. She looked though it and determined that it must have been kidney pain. This was in mid July.

I still had another appointment with the kidney doctor but you know this thing with my breast seemed to be getting worse and at this point was scaring me worse then the kidney stones.

One breast felt like a normal 57 year old and other felt and looked like there was a half of a baseball inside of it. The whole thing is hard as a rock! I had three referrals from the GP for another breast exam. But my HMO which is through Orangeland, changed companies and none of those referrals were any good.

I called and tried to make an appointment anyway but they told me that it was too soon. I had to wait the six months and it had only been about 3 ½. Something about too much radiation too soon. Then we discovered that due to the change in insurance companies I couldn’t go back there anyway. Then Bud had a world horseshoe tournament in Utah that lasted two weeks. Then he wanted to go to Borrego for a while. And all the while, I am thinking I am being silly. They told me it was just a calcium deposit. I had asked them if it was urgent and the attending doctor said no it wasn’t.

Come mid August and September I have free time and I’m leaving messages for my GP telling him the referrals are no good the insurance has changed and I need a breast exam NOW! But for weeks, I hear nothing.

Now my Kira is acting very oddly, I’m worrying that she is trying to tell me something. Being distructful, which is so unlike her.

Finally, the GP'S office tells me the GP is away on a family emergency. But an assistant does manage to send me a copy of a second ultrasound done concerning the kidney stones. Upper belly one. Nothing wrong found there.

By the end of September, I hear that my GP is back in his office so I make an appointment to go there! I tell him I need a breast exam right now. Something is trebly wrong! So he sets me up with a place my insurance will cover and a referral to the best breast specialist in the area. I had to wait for all my records to be sent to the new mammogram place and the referrals.

I was terrified about having this painful rock hard breast smashed. I asked my mom to take me cus I planned to take a fist full of valium. But as it turned out the lady was so gentle and hardly smashed me at all. They also did an ultrasound. The attending doctor said go to the specialist and have a biopsy RIGHT NOW! A few days later, I was there and the specialist seemed very up set. This was to be just a consultation but he wanted to the biopsy right then! But it could not be cleared by insurance that fast. It was done three days later. Three days after that breast cancer was confirmed, which was yesterday. He asked me to come back for another biopsy in three hours . Checking to see if it is spreading. We do not know yet.

To me all this seems like gods will. The misdiagnoses, all the things preventing the second opinion. And other things I didn’t mention. Now I’m stuck with chemo and surgery. I almost died when I was four or five. I was throwing up constantly for a week. I remember it like yesterday. Chemo was the single most thing I prayed I would never have to have. I am beyond terrified of it. Not to mention loosing my hair.

The breast specialist is a great guy. Mom kept telling him about my brother Steve and he says… Well he is welcome to call me anytime. I would be happy to talk to him. So right then and there, I asked Steve to call him. Doctor Steve liked him very much.

I have a couple quick tests then I imagine the chemo will begin in the next week or so. And the surgery soon after. He wants to make sure the chemo will shrink the tumor first. I have had about five or six blood and urine tests too this year. For various things.

So now, on to the reason my Kira is acting so oddly.

She did this only once before which was just before we learned our Mira had cancer. She was messing with the earphones on my iPhone and finally just chewed them up. Mira was diagnosed with liver and lung cancer like a week later. I have always had a feeling she was trying to tell me.

So now, for the last month Kira does odd things. She chewed up my earphones again and has been eating my underwear. Either throwing them up or pooping them out last night. So I look it up. Can dogs sense cancer? It says yes, they can. I ask Steve about it and he says yes but normally its lung cancer. They can smell it on the breath. So now, I'm sitting here remembering that CT scan that mentioned an enlarged cervix. It was the only thing the doctor who read the scan seemed concerned about. It said please have this evaluated. I didn’t. Too much else to deal with right then. A few weeks ago, I get a letter from the insurance company telling me it has been way to long since my last pap smear. God forbid if my 13 ½ year old Kira is right. I will have this done as soon as possible too now.

So there you have it. Probably way more then you ever wanted to know. But unbelievably I did not mention a lot of it. LOL

2013 has not been a good year for me.

doxiesrock912

10-13-2013, 02:29 AM

Janis,
At 78 my father was diagnosed with stage 3B lung cancer. His treatment was aggressive, 7 weeks of chemo with radiation once each week. Honesty, until the 5th week he did really well and you wouldn't have known that he was ill at all.

He's 80 now and is still cancer free.

Chemo is so different now. Much better and they can target specific areas too.

We'll be praying for you sweetie.

labblab

10-13-2013, 06:52 AM

Oh Janis, I am so grateful you've started this thread so we all have a place to talk. But OMG, what a year you have had! Starting right this minute, we are moving forward, though -- and taking care of what needs to be done one step at a time. We are here for you, girl! Every minute of every day and night. So I am starting out with a gazillion healing hugs beamed your way.

We love you -- don't ever forget that!!
Marianne

Altira

10-13-2013, 07:21 AM

Mariane, Thank you my faithfull friend. Your love and concern has always held a soft spot I'm my heart. I hope you are doing well.

Altira

10-13-2013, 07:32 AM

Thank you Stormee for passing along information that at the time I was too devastated to do myself. Your love and devotion has helped me thru more things then I can count. That Portrait of you and your precious Shysie cost me a fortune and still falls way short of my Gratitude!

Altira

10-13-2013, 07:58 AM

Leslie, I have so many comments to your story I hope I can remember them all. For starters thank you for making these desasters seem so funny. You have always been so good at that. Boy you have had it all. And not to tell stories un Authorized but I am. Strormees stories are not much different then yours. My grandmother died of breast cancer one year after being Diagnosed. She was 36. So my mother at age 80 was so certain she was a time bomb ready to go off (because she felt so soar all the time) that she demanded they give her a double Mastecomy Immediately. They too told her NO. They would not do such a thing just because she thought she might get cancer. But my mother being who she is would not take no for an answer and dealing with her is not a place one would like to be. So at 80 years old she got her wish. Both were removed. She certainly had never been thru what you have. But more then anything I loved the doggies with all the boobies. I mean how cute is that? Love you

Altira

10-13-2013, 08:07 AM

Trish and Valerie... I can't thank you enough for your input. Boy that is so much what I was hoping to hear. That this chemo thing my not be the hell I'm expecting. Even if its not true it still gives me courage that others may have breezed through it. But really I'm more concerned that the doctors will be honost with me. So far this breast specialist has held true to all his promises. But he won't be doing the chemo. So thank you for giving me some hope.

Squirt's Mom

10-13-2013, 08:44 AM

Dear gods, Janis. :(:mad: I am so hurt for you and mad for you. How in the world could the insurance companies and your doctors ignore that breast for so long because of TECHNICALITIES?! Every single day we hear about how important it is to do our own breast exams and to have mamos and to follow up but the very ones who are supposed to support you during all this - failed. When those things happened to me, my docs moved so fast it made my head spin; I didn't have time to think about much of anything before it was done and over. When he found the uterine and cervical issue, he told me would all he could to help me have another baby if I wished and that the baby would not be likely be affected, it would be healthy....but I would probably not live long beyond the birth. When I said I didn't want more children, he moved like greased lightening. I am just crushed you were treated the way you were and hopping mad the doctors didn't step up and fight the insurance company on your behalf. :(:mad:

I know you are absolutely terrified of what is to come and I wish I could sit with you and hold your hand during all of this. Just know that you are never alone; you have so many people surrounding you with love and hope and faith of all kinds. So when those times come, and they will, when you feel you can't go on, remember that we know you can and we will be here to help you along in any way we can. Reading all you have been through this year already, and knowing some of what you have been through in the past, I have no doubt whatsoever that you are as tough as nails and that you can beat this. It's time to fight like you've never fought before and I, just for one - there are many others - will be swinging for all I'm worth right along with you.

As for Kira, oh yes, dogs can and do detect cancers of all kinds. Some dogs are just born with this ability and are being used to help find cancers early by smell alone - they think it's smell anyway. I watched a video or news story, something (my poor memory!) a while back about a Schnauzer who had this ability. They had several folk laid in the floor, already knowing which ones had cancer and where, and this pup hit every one of them PLUS a new patient that was undiagnosed at the time. That pup would put his nose down on the body of the person where the cancer was. It was amazing to watch! So it is entirely feasible that your sweet Kira is gifted with this ability, too.

Many hugs and much love,
Leslie

Altira

10-13-2013, 09:16 AM

Oh dear now that this has all been moved over here I realize that I missed a whole lot. Please forgive me but I'm just to tired to go back now but each is so Appreciated.

Leslie. You can't blame the doctors Entirely. I'm a believer in fate which is not a good thing I'm sure. When something gets in the way I tend not to fight it. It's sort of like an Omen. Don't get on this plane because its going to crash. Don't go to the store something bad will happen. All these silly notions I get do sometimes led me to some pretty strange things sometimes. Like dashing to my dads house and ending up being the last person to ever see him open his eyes again. It was just a silly notion that sent me there. Insurance regulations here in California at least for HMO's are dreadful. Referal consents can easily take ten days to process. And I'm a GAINT Scaredy-cat that finds it difficult to leave the house at all sometimes. Anyway most of the delay was their fault but not all of it. But here again I was not expecting cancer. I was told there was no giant urgency. So. Well I'm angry too about that part. Angry at fate. Maybe I better leave it at that for now. A lot in me has changed since loosing Mira.

Oh yes my brother read all the complicated reports I got and said something to the effect that what was mentioned was a beatable type of cancer. I don't have that in writting but I think that is what he told me over the phone. So we have reason to belive at least at this moment that all will be well. Providing it hasn't spread and Kira is wrong about the cervix. Oh yes I did read that dogs can detect breast cancer too. So hopefully that's what was upsetting my Kira. Sweet thing is certainly not trained for this the reaction just came naturally to her. Kira is the dog pictured in my avatar for those who don't know.

molly muffin

10-13-2013, 12:50 PM

Janis, things have come so far now than back when my mom had breast cancer and did the mastectomy, that it didn't seem near as scary when my sister had breast cancer and then had the lumpectomy. The chemo (targeted as others mentioned) shrunk it down to a manageable size. The most important thing is of course the lympth nodes and whether or not it has metastasized at all. That determines what the recommended treatments end up being.
I do believe you can knock this thing out of the ball park. (hey you referenced a baseball!) :) So, home run time, just give it a good swing and out there!

hugs,
Sharlene and Molly muffin

doxiesrock912

10-13-2013, 03:50 PM

Janis,

My father was almost at death's door. There's no pain like hearing the doctor say "I'm sorry. It's stage 3B lung cancer." I truly believe that a combination of excellent medical care and my father's will to live got him to where he is today.

Where are you located? My father goes to Smilow Cancer Hospital in New Haven, CT. They are phenominal!

I'd say it's a good sign that your brother likes the doctor and that he was more than willing to talk with him. I have found through experience that good doctors tend to refer patients to others just as capable.

If for whatever reason, you don't like the specialist, please DO ask the referring doctor to send you to another. I have done this myself.

We're not seeing them because it's fun, they must be knowledgeable, compassionate, and willing to answer any and all questions honestly.

Please keep us posted and if you need to bounce anything off of me, I'm here.
I know how scary this is.

Altira

10-14-2013, 02:47 PM

Hi. I'm just here because I need to talk. I just braved it and listened to the recording I did of my doctors visit on Friday? Reading my scribbles and many missing words he said
It's a very aggressive cancer. The good thing is many of these lesions they tend to respond well to treatments. You will need surgery, chemo and possibly radiation. With tumors this large you will need chemo before surgery to make sure it works. Sometimes adjustments have to be made. And a catheter will be put in place. (You can hear me crying now.) (good god i can think of nothing worse) We need to see what the other side is doing. And check for tumors elsewhere. So we need to do those scans and see how big they are. We will make you an appointment for the MRI and with an oncologist. I told him I just had a lower cat scan done in May and no tumors were found. He did seem concerned about the liver. I told him about all the bad stuff they did find but I failed to tell him there were cysts in the liver. He said he will get me the refurals then I'm to come see him again on the 18th. Then he started examining me and says he needs to do another biopsy under my arm. Which he goes to get started on.
I didn't have the courage to ask if I would be having a full Mastectomy. But I'm guessing probably so. In fact I'm wondering how much time I have left. After Mira died I told Kira I wanted to go too when she goes. So maybe I will. I also made the giant mistake if reading about other people's experances with chemo and it was just one horrific nightmare after another. I once said a long time ago I sure hope I don't get cancer because I'm not doing chemo. I'd rather be dead. I really don't have THAT much will to live. Believe me ill be drilling the hell out of that oncologist. And I want the truth. I think a gun is going to be more appealing. I didn't put my Mira through it. I just let her go in peace with as little pain and terror as possible. Sorry for all the negativity but what I say here is the honest truth. I'm not afraid to die but I don't want to do it in pain. We treat our pets so much better then we do our humans. Do you think god is pissed at us for putting our dogs out of thier misery? I think not. Boy I'm having a bad day. I will likely be ranting a lot.

Altira

10-14-2013, 03:08 PM

Valerie, I was born in Waterberry Conn. how about that. Such a tiny state that is too. I now live in Orange California. That's southern calif five miles from Disneyland. I have lived here in orange for 55 years! I love it here.

Roxee's Dad

10-14-2013, 06:33 PM

Dear Janis,
I am so sorry for what you are going through :( Please know you can come here and rant or vent anytime. We will always listen. Get mad, get angry and beat this thing!

Keeping you in my thoughts and prayers.

Keep Strong!

(((HUGS)))

Altira

10-14-2013, 06:33 PM

I just received the Schedule.
This is scary...

15th MRI at 1:45

16th ct scan at 3:00

17th oncologist 11:00am

18th breast specialist at 11:30

Breast specialist is going to call me later today too

He said YES STOP PREMPRO. Great now I get hot flashes too. Makes me want to crawl in corner and tell everyone to leave me alone!

How much you want to bet chemo starts on the 19th?

Well at least none of these tests hurt. Physically anyway.

molly muffin

10-15-2013, 12:06 AM

Oh Janis, hugs. You will have some bad days, some depressed days, and then you will have some fighting days. It's a huge emotional roller coaster from my experience.

You are probably right, they will want to start chemo soon as possible to get as much shrinkage as they can as soon as they can. It doesn't make sense to wait, you've already waited, now is time for action.
The chemo does target the area they want it to which is a big help. As to whether or not you will throw up, each person is affected differently. Some do and some don't, depending on how your body handles the chemo, how much chemo is needed.

I am trying to remember and I don't remember my sister needing radiation afterwards. My mom had radiation though. Several times in fact, as she had another cancer later that radiation was used on. I will say this, my mom beat the cancer each and every time. It was not cancer, nor anything related to cancer, when she passed in her 80's. You can do it too. It's aggressive, so Probably a mastectomy, although I wouldn't say for sure, as they have made great improvements. If so and you are uncomfortable, you can have breast reconstruction surgery. My mom said no to that, but my sister said she would do that if she ended up with a mastectomy rather than a lumpectomy. (she ended up only needing the lumpectomy as the tumor shrunk well and there didn't appear to be any spread).

Until you know the whole picture, it is hard to make decisions sometimes. Adjust as needed based upon facts. This is the worst and scariest time when too much is known and yet unknown.

You have your own personal vent, cry, rage, laugh, scream site, right here, where you can say anything and you'll have the most warm hearted loving support coming your way. We live on hope here, every single day with our furbabies.

hugs,
Sharlene and Molly Muffin

Trish

10-15-2013, 03:26 AM

Hi Janis

Once you have a treatment plan in place it won't seem so daunting, its the same with our doggies when we are in the limbo diagnosis stage it is always scary. I am pleased to hear it is all proceeding quickly now for you.

On another note, funnily enough I went into town tonight with my two best friends for a walk supporting breast cancer awareness. There were hundreds there all dressed in various shades of pink, what a fabulous night and there were a ton of survivors celebrating their recovery!! Flynny came of course, he is an expert charity marcher now and there were lots of dogs today, I only had a pretty girly pink scarf for him to wear but he wore it with pride :D I thought of you while we were walking and we are sending you our very best as you take this battle on, you have people all around the world cheering you on! We took some photos, so here is me (with pink hair, by gawd that better wash out by work tomorrow morning) and my friends Christine with Flynny giving her a lick and De!! Hope it comes out here, otherwise I will put it in Flynny's album for you xx

ETA I cannot get the pic on here so it is in our album... x

Squirt's Mom

10-15-2013, 08:04 AM

Mornin' sweetie,

Just bare in mind that those things you read folks saying on line is only a small portion of the whole picture. For everyone who had something to say about how bad chemo was for them, there are others out there who had few problems and so didn't feel the need to talk about them. It's just not in our human nature to vent when things are better than expected but boy do we when things are worse than we expected! :D So all those horror stories you read online are only a small portion of the whole...and among the worst portions of the whole.

I remember when I was first learning about Cushing's and was so happy there were places for us all to gather.....only to learn we on the forums are only a very tiny portion of the whole cushing's scene, that there are many, many folks out there with cush pups who feel no need whatsoever to talk about this with anyone other than the vet and those in IRL who are part of their world. So we don't know their stories nor how their journeys progress. The same is going to be true of the things you read online that others have written about their chemo treatment. ;)

The goal is for you to be one of those few who does go online in time to let others know that chemo may not be as bad as they fear, that it can be dealt with, and that it can work. So you go find yourself a pretty pink flowery puke bucket just in case, and I'll make you a deal - if you do lose your hair I will shave mine and join you in the bald and breezy world, ok? And we have to show pics of our new doos. :D

Hang in there, sweetie!
Hugs,
Leslie

spdd

10-15-2013, 12:18 PM

Hi Janis. I don't know you and you don't know me, but the Cushings forum is what brought me here.

I have sat with my best friend through every single minute of her excursion with breast cancer. I also have been with my Dad during and after his chemo treatments.

I sincerely believe you will beat this and that you will find the chemo is not as bad as you thought. My girlfriend had a great attitude and when she lost her hair actually went wig shopping, and completely fell in love with a style she wears to this day, and she doesn't need a wig anymore.

The scariest is the unknown, but once your itinerary is complete, go into it with guns blazing. You can do it.

Altira

10-15-2013, 10:48 PM

Thank you so much to those of you who here with me. I means so much. And hello Anna Wilferth if you are visiting. Roxees Dad. wasn't it you who had the dog with the adrinalectomy too? so nice to see your name. Leslie my precious, why am I not suprzed you would chop off your hair for me! But don't you dare do it silly girl. I chopped off my very long hair for the first time ever when Mira died. I told my mom I would never let it grow long again. Now three years later Just a month or so ago I desided to let it grow again. Figures huh? However yesterday I hacked it way short again, did the worst job i could on purpose and I have stopped blow drying all the wild kinks out of it. It looks dreadful. I figure when it falls out I won't care so much. I hope to go shopping for wigs real quick. I hope i can find one that looks real and suits me.

And yes you are right, most of the stuff on line is written by people with dreadful experances. We humans are experts at complaining. Lord knows I am! But it is the stuff written by like "The Mayo Clinic" and other lagitamate medical sites that's really teriffing me. And the thought of having to stay at the hospital for days sometimes is unbarable.

Today I nearly missed my MRI appointment. My alarm was going off but it did't wake me. My husband woke me 15 minutes before we had to be there. I forgot my glasses and I didn't know where to go. I couldn't even see my sister across the room. What a horribly confussing setup they have there too. But there was no waiting.

As the tech walks me down the hall she tells me they will be using dyes (IE needles) I didn't know that but I've had so many blood tests this year I wasn't overly upset about. Well not about that. Cus about three minutes after the cathiter was in I was starting to cry. I wasn't frightened by the MRI at all. It was just that fact that all this was happening. I managed to keep still during the test. but the second it was done I was really crying. I cried getting dressed and my eyes were beat red when I walked out. My husband, my mom and my sister all waiting for me. Now talking is impossible. My mom said ...did it hurt? and I shook my head no. and chocked out... "its just everything." As we walked off tears were flowing freely. My sister crept up beside me and asked... can i hug you? I stopped and hugged her and we both cried. My sister is 13 years older then me. Christ I cried the whole way home. Bud was so sweet, he held on to me.

Tomorrow we do the CT Scan. I'm not afraid of that one either. But I bet you I'll be crying again. It so embarising. I can't beleive this is happening. Its all too much to except. And the urgancy is frightening. And YES the not knowing is a killer for sure. The fear of the unknown. Except for dentists. I know what happens there and it is still terrifies me.

Thanks for listening.

Altira

10-16-2013, 10:21 PM

Was a much better day. No tears. Had a full body CT scan followed by a JET (?) scan. Its from the same machine. After testing my Glucose They injected me with radio active stuff (sugar stuff?). Had to wait 45 minutes in a tiny private room which had a reclining chair and another chair and a TV. My gosh. Bud stayed with me there. I chated with mom and sis via iphone text. I wasn't wearing any metal so I didn't have to take any cloths off at all. I was the only patent there.
The machine was perfectly quiet. The table was the only thing that moved. The Jet scan part moved the table several inches every four minutes. CT part just a quick in and out.

Then they take those two scans and put them together and the whole thing is now in 3D.

If there is any more cancer in there anywhere I believe this process will find it. Sounds like its better then MRI. I know there are many other problems in there that will show up again too. Like blood flow problems, fractured back, kidney stones blah blah. All discovered eailer this year.

I got a copy of the final breast exam report that my GP got from the April 1 breat exams this year. In six places it states calcuim deposits and probably benine. Recheck in six months. They were wrong! My big mistake was the nearly four years between monograms. But due to my grandmother dying from breast cancer I had been getting checked every year for so long with perfectly clear results I had slacked off on this damn smashing thing they do! The thing in my breast feels nothing like I had been told cancer would feel.

I spent last night making a long list of questions which hopefully will answer important questions.

I can tell you that prempro that I took for five years for life disrupting hot flashes at least contributed to this cancer.

Tomorrow we see the Oncologist. By Friday I should have all the findings from all the scans and biopsies.

Lastly i just have to tell you... My friend Stormee's husband "Zack" is wearing a pink band around his wrist on my behalf. A picture of our sleeping beauty wearing this band on his wrist is now my iPhone wallpaper. My gosh. Thank you Zack.

Squirt's Mom

10-17-2013, 09:07 AM

You have every right to cry, sweetheart, every right in the world. For most women - sane women, not ones like me :D - the very thought of losing their breast(s) is devastating. Add the fear of cancer and treatments for it - yeah, you have every right to cry your eyes out.

Those CT machines are amazing to me! I had to have CT scans every 3 months a few years back on my lungs - they found several spots they wanted to watch but they are apparently scaring from the several bouts of pneumonia I've had as the nodules didn't change. They would check my creatinine before injecting the dye because I have one kidney then start the pics. That machine took several hundred pics in slices per second with the final count in the thousands of pics of the lungs each time. And the whole procedure took less than 30 minutes - from testing the creatinine to unhooking the IV, 30 minutes. Amazing!

About the hair....I've been thinking. We can make this fun. ;) If we do end up among the bald and beautiful, before we share our pics we need to find someone who can do fantastical make-up and have our faces and heads painted! :D We could be a Faberge' egg or a field of flowers or any number of wonderful, beautiful things! So think about it and what you would like to be for your pic, ok? This is something fun and whacky we can look forward to.

Hugs and love,
Leslie

Altira

10-17-2013, 10:07 AM

Oh Leslie dearest you have truly lost your mind. There is no way any one will ever see me without hair. You silly darling female. Easter egg in deed. I was looking at wigs again tonight. Even desided to measure my pea brain head. Seems i Can't even fit a hole lot of peas in there. The only thing that's going to fit me is a childs size. Even the petite women's would be to big. I was so delighted that that I threw out all my notes and calculations and gathered up my dogs and went to bed. Which is where I am now unable to sleep of course. Gosh I go see the CANCER doctor in four hours. This will prove to a joyious day I'm sure. Thanks ever so much for chiming in and giving the Opportunity to vent. Had a couple sharp pains on both sides a it ago. I better try to sleep. Love you dearly.

molly muffin

10-17-2013, 10:15 AM

Lol Leslie. What a neat and interesting idea. Maybe Just for a picture though.

I think it is a PET scan along with the CT scan. Wonderful machines. My sister had a couple before and after to make sure everything was gone.

You are doing amazing Janis. There will be ups and downs. The emotional roller coaster you never wanted to be on.

Hugs
Sharlene and Molly muffin

Altira

10-18-2013, 08:48 AM

All the test results from this week and the last are in. I have stage 3 cancer in my right breast and it is spreading down my arm. This is very serious. The oncologist Dr. Huang said if it were stage 4 he would not be able to help me. This is a very aggressive cancer. (My Mira was a stage 4.) I probably have cancer in my left breast too now. I will get that biopsy post hast. I will loose my right breast for certain. My head is swimming. Oncologist Dr. Haung spoke to us for 90 minutes and answered pretty much every question I had written down before I had time to ask them. I recorded the whole thing and will pass along to you the technical stuff that I do not understand. But for now I will tell you what I believe I understood. What we believe… my mom, sister and husband. After hearing the grim truth above, from there I was hit with nothing but blessings after that.

First off, this facility is a product of the cancer comition my grandfather once was a part of in the 1930’s. We have pictures of him sitting with the American Cancer Institute board of directors. So already, I feel like my grandfather is looking out for me. So blessing number 1. Next and most importantly Dr. Haung tells us that just 3 weeks ago the FDA approved a new cancer treatment. It is not a test, it is an approved treatment. This center that I’m now at is a research center (At the Saint Josephs Hospital Complex in Orange California) with many doctors interacting, determined to make this thing work. We get the impression that I may be one of their test models and their hopes are high that it will work. Blessings 2 and 3 really.

We will start out with chemo first. Now some of the drugs used are new and less evasive, less side effects, it still involves chemo but less of it. I will get the treatments at the doctor’s facility across from the hospital. It takes four hours each treatment. And I will be monitored by him personally. I have no hospital stays in the works right now until surgery, which I think maybe 18 weeks from now. He says of his current five patents he is treating right now none are having a problems with nausea or vomiting. He has allowed me 500 nausea and anxiety pills that I am allowed to use at will. He encouraged me to try it out and I was able to get four hours of sleep last night...That’s a whole mess of blessings right here. All this has reveled 50% of my fears.

The bad part is this treatment may not work. But that is my take on it. 39% chance which in his opinion chances are I will end up cancer free. I’m not giving this a blessing yet. And I will loose my hair. Not the end of the world but I will get a wig. This new treatment is also hard on the heart.

At this point, I will tell you we are seeking breast reconstruction. Today we go see the breast specialist (I call him “can of Juice’ because that is sort of what his name sounds like). He may do the left biopsy. Dr Huang wanted it to be MRI guided and can of juice does not have that capability. (BTW, all these doctors are within short blocks of each other. And three miles from my home.) but since I told him I liked can of juice so much he has allowed can of juice to decide if he thinks he can handle this biopsy or not today. I’m not sure what else dr can of juice will want to discus with us. He is to be the surgeon. But we will be asking him a lot about what reconstructing options we have. My mom and sister seem to think insurance will cover it. Because I’m not asking for an enchantment but rather to just look normal under my cloths again. Which is something that I do not have now because of the extreme cancer on the right side.

That’s about all I can tell you right now. Dr. Huang is meeting with five other doctors on Tuesday to discus my case, I have other tests to do before that. And hopefully chemo will begin next week.

Thanks for listening.

Stormee is red hot mad at the doctor who 6 months ago told me this was probably begein. The word benign was written in the final report many times. When I asked if it was urgent she told me no. This was done in another facility. I have felt all along that this thing has been gods will. I have no wish to blame her. I only wish that she would know of the mistake and use this information in the future. We learn from our mistakes and this one was a giant one. She was not concerned by what she saw in April of this year at all.

molly muffin

10-18-2013, 09:55 AM

Well I don't blame Stormee for being red hot mad at that other doctor. pfffttt anyway. However, I do think that while the diagnosis is not what we were all hoping to hear that the treatment does sound like a greater hope today, than there would have been even 4 months ago with the same diagnosis. That has to be good right.

I like the American Cancer Institute. The one in Orange County has an excellent reputation. I've had family go there in the past.

Now to be a bit more light hearted, what kind of style are you going for with the wig? The possibilities are limitless and you can do anything you want. Even have several. :) My sister was a big fan of the head turbans for around the house, she had several in different colors and styles to match her outfits and moods, also loose maxi dresses were comfortable for around the house too.

Hugs Janis,
Sharlene and Molly Muffin

Altira

10-19-2013, 06:09 AM

Oh I like the thought of a lighter side. To much glom and dome these days. Yesterday after having a bleed hole poked into my left side we went wig shopping. Mom talked me into a scarf and topi sort of thing that looked ok on the store but i couldn't duplate at home at all. Then we ordered a thin mid length one I hope will be better. I bought a thing on crocheting hats. The doc didn't feel too much like taking about breast reconstructing today. I hate to speculate why. He said there were two others deeper in the left that didn't and said if the upper one on this side is begin the the lower ones would be too.
Monday I have a heart ultrasound. Tuesday Haung mets with his colleges and Thursday I meet with him again.

BEFORE I FORGET , I WANT TO SAY HAPPY BIRTHDAY TO MY LITTLE NEEKA "Karamads Auntie Mira's Neeka"who turned three on the 18th. We bought her four pounds of lean hamburger and her daddy cooked it for all of us. And I sang to her over and over while her daddy cooked. Then I fell asleep in my plate. 3 am I just woke up.

Squirt's Mom

10-19-2013, 09:31 AM

:):) Happy 3rd Birthday, Neeka! :):)

But I really think you are supposed to be the one to fall asleep in your plate, not Mom! :p

infoviewer

10-19-2013, 09:59 AM

Altira

10-19-2013, 10:06 AM

Leslie. Neeka says WHOOFF. thank you.

Joanne. So far I think you maybe right. There has defintly been an advancement in the last three weeks alone. I hope it works for me. And other trails being run at this facility right now.

labblab

10-19-2013, 10:27 AM

Oh, tons of Happy Birthday Wishes to Neeka from me, too!!!

:D :p :) :D :p :) :D :p :) :D :p :) :D

And I continue to send huge healing hugs directly to you, Janis. Hope you can feel them every single day!

Marianne

frijole

10-19-2013, 10:35 AM

Me too! Following along and sending much love and birthday greetings. Strength and healing thoughts - Kim

molly muffin

10-19-2013, 12:33 PM

Awww, Happy Birthday Neeka.

Things seem to be moving right along. That is good to hear.

hugs,
Sharlene and Molly Muffin

Trish

10-19-2013, 06:57 PM

Hi Janis

Glad you have had a bit of fun shopping, go look at youtube I bet they have a ton of helpful videos about scarf tying!! Happy Birthday to Neeka too... hopefully this time next week your plan is in place and we can concentrate on sending good vibes to help you beat this!!

Trish and my adrenalectomy pup Flynn! xxx

Altira

10-19-2013, 08:18 PM

Thanks for all the birthday wishes for my Precious Neek. The one who sleeps right beside me on the floor quietly till I wake up. Wish it was easier to post pictures here.

Anyway, I'm working on writing up a transcript of what Dr. Haung said to us, all the technical stuff too. It will likely be 17 pages long. Maybe ill be able to post it some where else with a link to it. It's rather interesting.

Altira

10-20-2013, 10:15 AM

Can I scream and cry now?

Squirt's Mom

10-20-2013, 10:24 AM

Yes, honey, SCREAM and cry your heart out!

molly muffin

10-20-2013, 12:08 PM

What?! You haven't already? You're behind on screaming and crying in that case. Go for it. Just let it all come out.

hugs,
Sharlene and Molly Muffin

Altira

10-21-2013, 12:17 AM

I did for an hour. Well the crying anyway. Then I took a lorazepam. Thirty minutes and twenty kleenex later the tears stopped and I went to bed. Depression is going to be a killer. Waiting and not knowing. Thinking that at any moment it could be pushing past the point of no return. And you know what, I still don't think it's as bad as loosing a dog. At least I have a chance, with dogs you will loose them. Ill feel better when the chemo starts. Gee never thought I would be thinking that.

Altira

10-21-2013, 01:32 AM

You seem to have very good and thorough physicians to take care of you Janis and you are at the best place for all the new treatments. They have made so many advances in cancer treatment now. I think soon it will just not be with us any more and I think California is at the forefront of the treatments. I will be thinking of you. My husband had cancer many years ago and he did fine and he is now 75. Love, JoAnne

Well you know JoAnne my family owns an RV park in the city of Orange. Which is about one mile from St. Joseph's Hospital. Over the years we have had many people come stay at our park because they claim they have the best doctors there. Our insurance has just changed to St Joseph Affiliated. And I'm thinking that statement might be correct. Furthermore. My grandfather was on the board of directors at the American Cancer Institute in the 1930's. one of the high ranking members. This Facility where my oncologist is was funded and constructed by the American Cancer Institute. My grandfathers wife Anna died of Breast cancer when she was 47. My grandfather could not save her. My sister is going to have a picture of him sitting in a meeting room there with his Colleagues imprinted on a shirt for me to wear to my chemo sessions. He couldn't save Anna but maybe he can save Janis Anna.

scoora

10-21-2013, 01:56 AM

Happy birthday Neeka

Hope all goes well for you Janis
Big hugs!

molly muffin

10-21-2013, 05:21 PM

I am sure that your grandfather is watching over you. :)

Sometimes a good cry just does wonders, then it leaves you exhausted. At least it does me. I just want to sleep afterwards.

I am sure there will be many days of ups and downs and I'm just as sure that you can get through them. Keeping as positive of an attitude as you can is very important I think when fighting any health battle.

Another day forward!
hugs,
sharlene and molly muffin

Trish

10-21-2013, 06:04 PM

What a great history your family has Janis. That is so interesting how your Grandfather was so active in health way back in the 30s. I am sure he will be sending you his strength and fighting vibes while you fight this battle. Yep, you are one day closer to get rid of it!!

Altira

10-22-2013, 04:01 AM

I know I fail to respond to you all but just as I did with those in the past I won't forget your names. Ill be there.

Sporadic update:
First off we are all moving as fast as possible to get the chemo going. I even dashed down there just to sign a paper today. Something to do with the new drug Pirjeta i think it was. I don't even know what it said I just signed it and dashed off for the heart ultrasound.

When they told me how much I owed I turned to Bud and said Please come scrape me up off the floor! $969.00! They offered me a payment plan. Oh geez thanks, that just means I have to pay more plus remember to pay them every month. I just paid it in full.

The US took about ten minutes. A cute oriental kid discribed what we were seeing on screen. This organ faithfully working away. I told him he better not find any hands or feet in there! Then he showed it in a differant view and I could see all the verticals. It looked like a heart. Somewhere within it it looked like two arms where clapping together like clapping hands. To me it looked like a happy heart keeping bet to a happy song. I asked if it looked ok to him but he just smiled and said... I'm not allowed to say. But what saw was My heart cheering me on. All is strong here. He said I would need to be checked again in six months. The drugs they will use are hard on the heart. I think I will opt for a good old fashion EKG at this price.

My brother in law said he'd pay the $969 himself next time. On the way home I'm thinking this whole thing is going cost me $100,000 at this rate.

After being home for a while I got smart and got out my insurance policy. The first item says Maximum cost to me is $6,000. Then I'm remembering buds hip replacement. We reached a certain amount and then stopped having to pay anything. You know co pays. Then the hospital charged $2,500. So I think you are right, we are just paying the deductable right now. How they got off charging me $969 today I don't know.

My sister is going to Orangeland tomorrow and she's going to find out if that $6,000 truly is the max out of pocket. She's also going to see if breast reconstruction is covered. My mom insists it is. I'm thinking its not. It's cosmetic thing and not life threatening. I hope she's right. Ill be damned if I'd pay $100,000 for them. BTW to those just reading this, the right side has to go completely and the left looks Suspicious at the moment. What a shock.

Then my mother proceeded to piss me off. My brother and his wife are coming out here for Xmas just to see me. Urged by her im sure. Well the first thing in my list of concerns with all of this was loud and clear.. I dont want visitors!!! Nobody! So to my mom I said... Wonderful, I should be in a real FESTIVE MOOD at Christmas time!! About 3/4 ways through this. The last thing I want is the most stressful thing possible to me... VISITORS! Email and texts yes. I love that. I need that. I'm just weird I know. Well the last thing mom texted me tonight was Steve and Cheryl are coming to see you at Xmas and if I don't want them to come youll have to tell them yourself. Well fear not, I will tell them but certainly not in the way she see it but rather that I have no idea how I'm going to be feeling then and I'm not making any promises , then spend now tell then worrying that I probably will fail them. Anyone who truly knows me, all this is really no big superize to them. I remember telling my neighbor Sharon who I had only ever talked to via email for the first ten years that we lived here. That I'm just no good face to face or talking on the phone. When I leave the house I make sure no one is out there first. I'm the worst possible friend. But my niegbor Sharon she said to me she was going to be my friend weither I liked it or not. And if that just meant just by email that was fine. And so it has been for the over thirty years now. The only other one is you Stromee. It's really something specail to have someone love you just the way you are. I'm well aware how lucky I am to have them.

ANYWAY!!!!!

As of today I have completed all the things I needed to do.

Tomorrow Dr Haung will hopefully met with the cancer board and get his treatment plan approved. The cancer board only mets on Tuesdays. I hope they have time for me tomorrow. Maybe he will just go with it. The plan can be changed. Then it has to be cleared by insurance. Maybe three days to get ins approval.

As he put it, he would rather have had all this done yesterday. Sounds just like what my dad would say.

I agree I am most Anxious to get this going as is Bud. It came on so fast and if it goes one step farther 100% cancer free will be impossible. Dr huang is concerned but he's not panicking. So I try not to either.

I have an appointment with the breast specialist on Friday. I think that is just to tell me if there is cancer in the other side too. We already know its in my right arm pit. Although I got to tell you all I can feel there is my ribs. Both doctors said they could feel something there and biopsy proved them right. It is spreading.

molly muffin

10-22-2013, 04:55 PM

Okay so it's aggressive and spreading, but the doctors think that this new medication will eradicate it and a 39% chance of complete recovery?

I have to say, that if that is what they are going with, then I am very impressed with this new drug and Hopeful that some day, maybe we won't have to fear cancer as much as we do today.
I'm so glad that you are in a place that has access to the drug and a full staff of knowledgable people. Go granddad! :)

Well, you Don't know how you will feel at christmas, that is the truth. It sounds like your personality though is that you will not want company, period, until this is over and done with and life is moving on. They know you, this is your family, so just say it as you feel it.

hugs,
Sharlene and Molly Muffin

Altira

10-22-2013, 08:42 PM

Haung left message this morning he couldn't fit me in with the Board. Knaijiou says don't wait just get started then I hear nothing more all day. I just keeping feeling its already too late.

Altira

10-23-2013, 03:27 AM

Roller coaster rides are so much fun. Dr. Huang called back at 7pm and said that Dr. Khanijou is urging him to just get started. So tomorrow morning I go to Dr. Huang office and talk to his girl about getting the ins thing cleared pronto. And hopefully chemo will start on Thursday without the boards Approval. I faxed him the copies of my last two blood tests from June and July because he hasn't done any and I was concerned about the low platelets I've been having lately. He also said while I'm there I can get copies of all his notes. He said I have to sign for them. That's fine. And lastly an probably the happiest thing today is that the left breast biopsy came back begien. Dr. Khanijou siad there was another right below it but if the upper one is ok so is the lower. Sounds like he sparse me that farther push inside. Bless him. So with any luck well be off to the races by Thursday.

Squirt's Mom

10-23-2013, 08:21 AM

OH, I am so glad the left came back clean and that the heart looks good! :cool::cool::cool: You need, we all need, some good news in all this. ;)

Skye

10-23-2013, 12:33 PM

Hello my sweet beautiful friend...........I love you more this moment than the last moment, i think your more beautiful than any sunrise or sunset, and I think your stronger than any fear.
Sweetheart.....not to sound selfish, but allow me to sound that way okay? I need you in my life, the girls...all of our girls need you in their lives. To have your love and care seeing us through each and every day, knowing some one is thinking of you, that you are really part of their lives i cant even begin to express what this means to my every breath. You accept my silence when words cant flow which we both know that is not often...lol.......you accept my ranting spitting stomping, you know just the touch to stop the tears from flowing and filling my heart with the most beautiful love by the gift of your friendship. Were always connected you and I. 24/7 365!!! Sharing, laughing, strengthening. You have just got to fight with all you got for all of us. Do you hear me????? (rocky I theme song playing, everyone hum along....) so you get ready, your in training and YOU ARE GOING TO BE CHAMPION of this.
If I am not going to be allowed to contact that so called doctor who i repeatedly keep requesting contact information on, address, etc, to inform them of my heart felt thoughts................then all this is being used in training ring to condition you to be come the world champion. Kira, Neeka, Shysie, Shaddix, and you know all the angels and their babies are here to. (music building) (were all starting to bounce and do little air punches) AND when this all over..........zack will deck out head to toe in pink for you! (trust me, he doesnt look like a man to ever consider glancing at pink even...LOL) but for his Janis..........i wouldnt be surprised if he didnt paint his entire body pink. He even blew Janis kiss with me in photo.....and he has NEVER blown a kiss before....uhm, if you see the photos you can tell that. LOL (they are on shysies face book page, lol) Janis we love you, we need you, you are strong, beautiful, and i know without a doubt your stubborn, LOL!!!!!!! get focused girlfriend.........were on a mission to kick some ass.

infoviewer

10-24-2013, 09:50 AM

I agree with Stormee. Already good news, only one side. You can do it Janis. You have the best doctors and best place in the world for treatment. All will be thinking of you on your journey. Love, JoAnne

Squirt's Mom

10-24-2013, 10:27 AM

Today's the day, huh? All the fun stuff starts that WILL lead to you being cancer free. I believe this and want you to believe it, too. ;)

I'm gonna start sending you some links and info on foods and things that can help you fight the cancer as well as help with some of the side effects of the chemo via email very soon. I've been reading some and want to share what I've found with you. There are several mushrooms that have been shown to have strong abilities to kill cancer cells, in particular in breast cancer. They can't hurt and could help so I want you have the info just in case you want to look into some ways to help yourself during this via foods, herbs and supplements.

You are in my thoughts and prayers constantly, darlin', especially today as you start this scary journey.
Hugs,
Leslie

Squirt's Mom

10-24-2013, 11:27 AM

I have an appt to get shaved today so I'll be bald before you are! :p

Squirt's Mom

10-24-2013, 12:32 PM

Stage 1 DONE. I have chopped the hair off with scissors and the rest will be done this afternoon by a friend. Still looking for an artist, tho.

Trish

10-24-2013, 02:54 PM

Ohhh Thursday is here, hope it is going ahead Janis and your treatment is underway!! So pleased to hear the left side biopsies were benign, great news!! Heart ticking good too, that is so cute how you saw it clapping and cheering you on!! Very pleased to hear it is in good shape :)

I saw on FB on one of Stormee's posts that must have showed up on my FB timeline after I posted and you got a comment from Sandi. She is a good friend of mine who had chemo and mastectomy I think it must be about 8 years ago now, she had a few positive lymph nodes in there too. I just thought I would point that out in case you saw it and wondered who the heck is she?!? She was where you are now and kicked its butt just like you are going to do!

Stormee - I love your fighting spirit for your good friend, what a champ you are... I was humming the Rocky theme while I read your post :)

Leslie - kudos to you... by crikey you are awesome!! I have seen some pics of amazing body painting by artists and I am sure you will find someone to paint your pretty head :) :) :)

Let the battle commence!! WE ARE ALL ON YOUR SIDE JANIS!!!!!!!!!!!!!! XXXXXXXXX

molly muffin

10-24-2013, 06:26 PM

Doing a quick check in on you Janis to see how today went. :)

hugs,
Sharlene and Molly Muffin

Squirt's Mom

10-24-2013, 07:05 PM

Stage two - DONE! Slick as owl...well, slick! :p

molly muffin

10-24-2013, 07:11 PM

Slicked up!! Now on to painting!! :cool:

Sharlene and Molly muffin

Altira

10-24-2013, 09:51 PM

Glanced thru some of the above.... Leslie put that razor down!!! :p

Sorry I’m so very tired today. Went to Dr. Waungs office today and discussed the chemo process. I will have my own small room with everything possible I could want. I’ll be there for about half a day once every three weeks. For 18 weeks. (Then surgery, then maybe radiation). Interesting he says to drink tons of water to get the drug out of my system as quickly as possible.

The first treatment is on Tuesday October 29. Anyway… I’ll write more later. Love you guys

apollo6

10-25-2013, 01:29 PM

Dear Janis
Know that we are all praying and supporting you in this fight.
You are not alone.

May God heal your body and soul.
May your pain cease,
May your strength increase,
May your fears be released,
May blessings, love, and joy surround you.
Amen.
Love Sonja and Angel Apollo

Altira

10-30-2013, 12:59 AM

I took one lorazepam before we got there. We didn't wait long. She hocked me up to salin and something like ZOFRAM for vomiting. Then she hooked up Perjeta. The new drug and i drank a ton of water. Bud an i figured out how to get the chair to lay back and I pro exceed to pass out for about four hours. Slept right thur the next drug. When the third drug cam I had to pee. Bud bless his butt was still there and he helped me out of the chair and down the hall. I barely made it. By the time we got back and settled again I had to go again. I didn't do so well on my own. Did not
Quite make it there. So when I got back the next time I had t go again ten minutes later, I didn't wait.

Then I tried to do some crochet but got in trouble for that because it hindered the I v flow. Then about twenty minutes mater they said all done. Was easy ,the worst of it was fear itself and making it to the potty room. They said the side effects normally come in the next days after. I'm tired. .
Janis

Squirt's Mom

10-30-2013, 08:40 AM

It's good to hear from you. Yesterday you were on my mind very close as I knew that was the start of treatment. I'm so glad Bud was with you and stayed to help. Since they won't let you crochet while on the IV, have Bud read to you next time - or you could teach him to crochet. ;):p:eek: I gotta say, if I ever have to have chemo they will have no choice but to hook me up while in the restroom 'cause I'd be making a trip there every 15 minutes! :D:o

I'm LOVING my head! It has almost a week's growth on it and it feels soooooo cool! I keep telling folks to feel my head, which results a very weird looks until they touch it :p, and find myself at night laying in bed, my fingers stroking my head because it feels so freakin' good! I wish I could keep it at this stage from now on. :) It looks a bit strange, kinda like an old man with a 10 o'clock shadow, but it feels so COOL! I've found one negative so far for me - the sympathy given. Folks assume I'm undergoing chemo or something has caused my hair loss and they feel sorry for me, which made me very uncomfortable at first. I would automatically start explaining when I realized what they were thinking but I've stopped that. IF they ask, I tell them about you. If they don't, and most won't say a word, I just let them think what they will.;)

Oh! There is another negative for me - my head is not shaped right to keep a scarf on it, they slide up the back of my head, over my ears, and fall off. :p And I love a scarf tied on the head in a cool way but that's not gonna happen with my head! I have held on to one of Gia'a hats for some strange reason and a friend gave me a knit cap so those are what I wear when it's a bit cool for a bare head but most of the time I just let it do whatever it wishes. :D:p:p:D

I hope you are ok today and in the coming days. Hang in there, honey. I wish I could come sit with Bud and hold your hand but since I can't be there physically, please know I am with you in spirit every second. You remain in my thoughts and prayers always.

Hugs,
Leslie

molly muffin

10-30-2013, 02:25 PM

Other than the bathroom problems it doesn't sound too horrid. Takes a long time I guess to go through everything.

Hope you are feeling okay today

hugs,
Sharlene and Molly Muffin

Altira

10-30-2013, 11:18 PM

So far so good. Took doggies for short walk. Feeling a little kidney pain. And a abscessed tooth coming on. But it could be so much worse. Tired. Thanks for asking.

Oh my Leslie ,what to say? What can I say? Ill have my hair for at least several more weeks. I have bought two wigs already and I have found that those really long scarfs like Muslim women wear work pretty well. You can pin it under your chin and wrap it around your shoulders. You silly women. :-). Love you. I'm doing well. Just hope this newly aproved thing works. This non chemo PROJECTA. We may not know until like April.

Altira

11-05-2013, 08:54 AM

Well since this is a doggie forum afterall I thought I'd share a cute doggie story.

I told Bud many days ago I wanted us to start taking the dogs for a short walk after dark. So he comes in tonight and says you want to take the dogs for a walk? Oh man I just only got up and I slept like shit! I frowned and said maybe later. He comes in a little later and says you want me to take Neeka for a walk? I grown again and said yes but it really is KIRA that needs it most. Immediately he growns and says but she always shits! He's right, she always does. Even if she goes at home first she still does! I said well ok ill take kira a little later. About five minutes later he says ill take them both. I don't think he's ever taken them both!! I jumped up and said well Neeka must wear the pinch collar so she will behave. Bud gets up to prepare while I get Neek into her pinch collar and safty chain. I asked do you want the pepper spray. He said no I have a knife. =8-0
He leaves the room. I go to his cell phone and remove the heavy charger. When he comes back I siad take this it has a flash light. He HATES carrying his phone but he took it. I'm more worried that he might get into trouble and need to call me. He could get tangled in the leashes and hurt himself or one of the dogs.

All ready to go I handed him the leashes. Amazingly he manages a controlled Manover to the door. Kira manages the slick floor without falling down. Then Bud stops at the door and waits for the dogs to go to their proper spot to exit the door. Human always goes out first! They have to wait on the carpet until you tell them to come out. That's always quite a trick. Bud normally just barrels out the door!

Someone is always trying to jump the gun. Bud just stood there CALMLY and I ordered them into position. Then he slowly opened the door. Kira took a step forward. Bud stopped and I ordered her back. Then he took one step out and the other foot out. Then he said lets go. Which was the wrong word. I said OK and both dashed out. And of course there is Chaos. Bud says they are waiting for you! So I closed the door. I looked out the window and off they went. I'm so pleased with Bud and scared too.

About twenty minutes later they come back. All looks amazing well. I Asked did Kira poop? He says I don't know, I didn't look. Oh well can't have everything. He said they did good. Neek is so much easier to handle on the pinch collar.

I was so proud of Bud. All night I'm saying to the dogs. Did you get to go for a walk? Wasn't that nice? What a nice daddy.

Squirt's Mom

11-05-2013, 09:07 AM

awww....how nice of Bud, and brave! :D Of course, I think you are brave to walk two Husky's at once. I'd be on my face in 3 seconds flat with two dogs running wild! :eek: Little 20 lb Sophie is a challenge on a leash for me but she's figured out how to work around that. She just whirls around backward, straightens her front legs out, and backs out of the harness! :rolleyes: Little turd! :p So her exercise consists of running in the yard and house fetching babies and playing Tug-of-War. :D

How are you feeling? Tired, I guess?
Hugs,
Leslie

molly muffin

11-05-2013, 06:06 PM

Go Bud!!!! So glad that he was able to take them both for a walk.

Hope you are able to get some better sleep tonight.

hugs,
Sharlene and Molly Muffin

Altira

11-07-2013, 09:18 AM

I was teaching kira and mira urban mushing. I ran around the Neighborhood with them tied to my waist. We did it a lot. It's how I trained them to stay in place out front. After a year of that we were doing it for real. Them pulling me on a scooter. We did it about four times and Kira's knees gave out. We had to stop. She had two knee surgeries after that. She couldn't do it any more. I'm a real bitch walking both dogs. I'm mean to them. I have to be or they won't listen. Neek has to be on a punch collar. I used to walk them everyday for years. Bud had a bad hip he couldn't go at all. Now in the last year I hardly ever walk them. Kira has a hard time walking and I'm. Well I don't know. Burned out I guess.

It was all I could do to hang on to that scooter. Zero to sixty in no time!

Squirt's Mom

11-07-2013, 09:30 AM

Sweetheart, you are overwhelmed and have been for some time with worry - even tho you may not have voiced those worries they were still eating at your Soul, draining you. :(

Squirt's Mom

11-08-2013, 02:53 PM

Got an email from Janis today and she asked if I would pass this on to her family here -

I just got before and after chemo blood test results.
All the odd values that have been with me all this year are
now within normal limits. All three of them. I'm most
incouraged! My doctor brother said it looks great to him
too. He also said my heart US was really good too. Mom said
that was from walking the dogs so much. Ha ha.

She's tired but very encouraged and elated at these reports! WOOHOO!! :cool::cool::cool::cool::cool::cool::cool:

molly muffin

11-08-2013, 09:29 PM

That is wonderful news. :)

hugs,
Sharlene and Molly Muffin

mypuppy

11-09-2013, 06:38 PM

That is truly the best news ive heard in quite a while. How awesome for you Janis, and your loved ones, and us too of course. Thanks for sharing this Leslie. Hope this finds you and the gang doing great as well. Love and tight hugs to all of you.

And Janis, you keep it up lady. You are getting there. Xo
Jeanette

addy

11-11-2013, 01:27 PM

Dear Janis,

I am so happy to read the news, I have been following along sharing your journey but found myself at a loss for words.

Now I found my voice- you go girl!!!

Skye

11-21-2013, 11:55 PM

Hello Beautiful Family here.....
I would like to clear my weakness...I have not been on forum much...I get so flipping emotional every time I come to this thread. I love each of you so very dearly, and Janis, you have come to be part of our daily lives for years. The girls and I speak of you...I let them sniff letters that I have saved that you have sent, and yes...i still carry one with me every where I go. i know...I am your goober friend that sought you out on here, and permanently adhered to your hip. LOL, sniff, snot, tears.....lol.......I am so very proud of you Janis, you amaze me in your strength, in your ability to find courage that could fill all of the seas. your inner and outer beauty is that only few posses. You know me well, and you know without me saying, I am scared, I am worried, and I am angry (especially at the doctors) (which you still will not release the names of to me as you know I will go all ninja on them) and you know that when I am that way i get soooooo emotional and cry. One teary snotty angry worried mess, that is extremely protective of you. Because I love you my dear friend. I need you. The girls need you. i have saved every email we have written, lol. Its our entire friendship written out. You give me strength so often to face each day, and now I step up to plate to give my dear beautiful friend strength to face each day and fight. I just want to pick you up and RUN and place you in safety....so with that said....I know amongst all these angels here, you are amongst all the best of security love care...the angels here, your friends and family. If God wears a cowboy hat, I believe He would even tip His hat to the army you have and smile upon that.
I heard from Janis today, she had her second chemo yesterday...
Her mom who is so beautiful and dear, is of course beside of herself as she watches her baby girl fight this battle, she never lets on to Janis, she is one strong woman, she keeps it together for her baby, so lets be sure to keep her wrapped in our arms as well. If you could see a photo of her you would just want to wrap your arms around her anyways, lol, she is precious. She is by her little girls side always, and Janis says she just chatters away, lol, driving her nuts, lol, janis describes herself as not a real friendly person in person or on phone, i find that hard to believe. At the doctors today, as they were getting ready to examine her, her sweet mom was right there and in on the all the action and exam, being every part of everything she possibly could as she takes this journey with her daughter. Janis's mom....lost her mom to breast cancer, so this journey is familiar to her...HOWEVER this time....no one is losing anyone. Can i get an Amen??? AMEN
the mass in Janis's breast may be shrinking which nearly had her mom dancing a jig right there in exam room, lol, I would have joined her.
I love you sweet beautiful friend.......and i love your darling mother, I am grateful to have such beauty in my life with you.

Squirt's Mom

11-22-2013, 07:12 AM

AMEN! We are holding Janis, Mom to Janis, siblings of Janis, hubby to Janis, babies of Janis, medical team of Janis - we hold you all in our thoughts and prayers, wrapping you in our wings, lending our strength, hope, and faith...all the way.

I am very happy to hear the tumor is shrinking with the treatments and hope this makes the upcoming surgery much easier. You are never out of my mind, out of my thoughts, nor out of my prayers, Janis.

Hugs and much love,
Leslie

Altira

11-22-2013, 07:44 AM

Thank you everyone one. My brain is pretty muddled right now. Full of meds and not thinking straight. But I've had no problems from this last treatment at all this time yet. Except for frustration. Can't think straight. Ith doc offered to let me go to the hospital and get my head shaved. My answer was to cry. But tonight I got out the electric shaver and me an Bud tryed to even it out a little. It's about an in blog. 18 weeks and I can start growing it back. Wish it was easier yo show pictures here. Anyway. So many have been so kind to me. And thank you Stormee. Don't worry you won't loose me. Emotion had been the worst of it so far. Love you dearly angels.

Squirt's Mom

11-22-2013, 09:00 AM

I let my hair get too long before I worked up the courage to shave it myself. What a MESS! :eek: It took 4 new razors and three days and I STILL had a mess! I looked in the mirror to find all these little tufts sticking up that I had missed and could feel two strips up the back of my head that I had totally missed. If they had been connected and centered, I could have claimed it was a mohawk and intentional but nooooo....they were separate and running in different directions! :p I scraped on the back of my head so much it got raw and sore....but finally down to the skin. Of course that means that the back is now shorter than the rest and it's too sore to shave again so I can even it out. A friend came over after work last night and finished trimming the tufts off but we can't get the neck line cut because I have these little dips there so I have two longer patches on either side of my neck. :rolleyes: I won't wait that long again to shave it!

I have several warm hats that I wear and am trying to learn how women wear scarves on their heads that look so cool. Mine end up looking like I tied a bright colored rag around my head and they won't stay on! Nothing cool about it! :D I'm thinking about getting a burqa! :p

molly muffin

11-22-2013, 03:43 PM

LOL Leslie.
How is your head gear experience going Janis?
Fuzzy sounds pretty normal for all you are going through. I think you are doing really well and are an inspiration to others who will go through this.

hugs,
Sharlene and Molly Muffin

Trish

11-23-2013, 04:30 AM

Hi Janis

18 weeks will fly by!! I bet it feels like it won't right about now but soon that new hair will be coming through. I wonder if it will look the same as I have seen some changing colour or going a bit curly when it was straight.

Ohhh I just remembered I wanted to tell you that you are setting a good example for us... my routine mammogram appointment arrived in the mail couple of weeks back. It was going to be a nuisance to attend but I thought of you and off I went and got it done. I must say they had a nice shiny new mammogram machine and it honestly hardly hurt at all, they do not have to squeeze it so tight anymore so I was pleasantly surprised. When you talk about breast cancer it does raise awareness and helps others to get tested, so thank you for that.

Hope your weekend is going well and your not feeling too yuck, try get a little fresh air to blow out the cobwebs, keep going.. two down! x

Altira

11-27-2013, 08:18 AM

I miss my Mira. And my hair. My life.

Squirt's Mom

11-27-2013, 09:36 AM

Be strong, sweetie. Mira is watching over you and I am sure you feel her close by; your hair and life will return and when they do they will have so much more value. I can only imagine what you are going through and wish I could take it from you. :(

mypuppy

11-27-2013, 03:36 PM

Dearest Janis,
I am thinking of you and your precious Mira.

We will surrly miss our babies always and agree with Leslie Mira is at your side and sustaining you every step of the way.

God loves you, Mira, and so do I.

Tight hugs. Xo Jeanette

molly muffin

11-27-2013, 07:04 PM

Baby steps. :)
Happy Thanksgiving. :) You're making progress remember that when it is tougher days!
hugs,
Sharlene and Molly Muffin

Altira

12-13-2013, 09:11 PM

Just had my thrid Chemo treatment yesterday. Seems like the lump is quite a bit smaller. the side effects aren't so bad. Loosing my hair is still the worst of it. Wigs suck. And my nose drips like rain. No vomiting. Just a whole lot of crying and unhappy thoughts and a bad case of chemo brain. Feeling really sad today. This certainly isn't the horror stories you have heard about in the past. My blood tests are all reacting as expected. Nothing worrisome in there at all. my Platelets had been low for about a year and that seems to be holding right as rain now. And the 500 pills he gave me for anxiity work real well.

Squirt's Mom

12-14-2013, 06:46 AM

Sounds like physically things are going well and I'm so glad to hear that! I'm glad you haven't had to deal with the nausea! :cool: Even without the effects of the chemo, your emotions are bound to be raw and always on the surface, honey. That is to be expected. I firmly believe you have the strength, courage, and determination to get through this tho - I truly do, sweetie. I can only imagine how hard that is to see in yourself and how hard it is to believe but it's the truth - you are amazing and I, and others, can see that clearly. So when those sad thoughts come, just remember there is a crazy old broad in ARK who has complete faith in you - so just believe that I believe in you when you find it hard to believe in yourself. ;)

Wigs! ugh I just can't do them! They are hot and uncomfortable. But I am really enjoying HATS! :p When I was young I loved wearing hats and had all kinds. I was yet again an oddball because hardly anyone wore hats but there I would be in a big floppy brimmed hat or derby or some other adornment on my head. :D I have kept a very old hat that is round and covered in bird feathers. I don't wear it but it is lovely! Still can't get the hang of wrapping scarves tho. There is some trick there I am totally missing. :rolleyes:

Shaving is still not working for me at all either. I "accosted" a bald doctor in the Kroger parking lot a few weeks ago and asked him how he kept his head so nice and slick. He said I shave it. I said HOW? He just laughed and told me mine was too long to shave - I needed to get a Poodle clipper to take it down then shave the nubs. :p Who knew the hair on our legs was so different from that on our heads?! The hair on my legs comes right off with one swipe - the hair on my head just lays down and lets the razor slide right over with very little effect. :rolleyes: So a Poodle clipper is on my wish list now. :D

When is the surgery scheduled or do you know yet? It sounds like the treatment is shrinking things so I hope that means the surgery will be much smoother.

You are always on my mind, in my heart, thoughts and prayers.
Hugs,
Leslie

Altira

12-15-2013, 07:32 AM

Ah you know I love that crazy old lady from Ark! Surgery sooner? That would be nice. So far I think it will be some time in feb.

Altira

12-18-2013, 03:18 PM

I hoped and prayed I would not loose my Kira during this time. But when is there ever a good time to loose them? Not ever. I love you Kira. And it will kill me no mater when it is. All I asked was you stay with me for 13 years at least. And you past that by 9 months now. Just please when you go tell me when. Please go peaceful and not suffer or make me feel it was too soon. Don't die like my daddy did. Please. Tell me when I die if you suffered. I love you so much. My beautiful Miriaskimas Kira Katrina. Even at a distance I knew your name. And you legs wrapped around me so tight I could never let go. Never wanted to let go. Never let go

Altira

12-22-2013, 11:36 AM

Kira seems to be holding her own. I'm going to get a new CBC and talk to a IM tomorrow.
Chemo side effects. The horrors we have all heard of before don't seem to be that bad now. But I got to tell you there are a lot if things they don't tell you about. Like Possibly Permanent damage to your body that's no the end of the world but are still life changing. And far too embarrassing to mention. I won't be me when this is all over. Oh well maybe it want happen to me.

addy

12-24-2013, 08:43 AM

Janis, I am sending huge hugs and saying prayers for you and precious Kira.

You are one brave, super couragous lady, I could only hope to have your strength.

Thinking of you and Kira

doxiesrock912

12-26-2013, 05:55 PM

Janis,
Medical science has come so far with chemo especially. I'm glad that you don't have the nausea. Yeah, wigs do suck but it won't be forever. Great news that the tumor is shrinking!

Altira

01-01-2014, 07:09 AM

I have chemo again on the 3rd. I think they are going to give me something to keep my WBC from going so low. I think the tumor is a lot smaller now. I'm worried about my Kira.

molly muffin

01-01-2014, 12:24 PM

I'm glad the tumor is smaller. That is good. :)

I'm sorry things are so hard right now with Kira.
You are both in our thoughts and hearts.
hugs,
Sharlene and Molly Muffin

Altira

01-03-2014, 05:47 PM

Janis update:

After three chemo threatments all blood values are ALL WITH IN RANGE. One of the CA COUNTS is way down and the other is clear. Doc thinks by the end of the next three treatments I will be cancer free. Ill still loose my breast no mater what. Thank you for all the prayers and careing. A month to go before surgery. I will have a Brest MRI in a week or so.

Blessed are the angels and pixxy dust girl who blessed be so well! The will and the power of our minds.

Trish

01-03-2014, 05:59 PM

What awesome news Janis, so pleased to read this... be gone evil cancer :D xx

molly muffin

01-03-2014, 11:22 PM

Janis, this is great news! :)

And you can discuss having the reconstruction before the surgery is scheduled right? Maybe they just wanted to see how treatment was going to go before talking about it.

My neighbors niece has been diagnosed with stage 2-3 breast cancer, 5cm tumor and I told them about the treatment you are having and what good results. They are going to look into it for her and see if it is an option. She is in her 40's I believe.

Even now you are helping others.

hugs
Sharlene and molly muffin

Altira

01-08-2014, 03:29 PM

Perjeta
Herceptin
Taxotere

May wipe out breast cancer completely? As long as it hasn't spread. And that can be hard to Determine. All these fancy tests can sometimes not see it all.

Altira

01-23-2014, 05:08 AM

FROM RECORDING….
Dr Khanijou Breast doctor 1-22-14

He’s reading MRI
How far are you with your chemo? (#5 on Friday) So you have had 4 cycles. (He examines me) Looks good to me. I have just seen the MRI report it says it’s smaller, and it feels smaller right? It doesn't feel as hard as it did when we first saw you. So here's the plan, we will continue with your treatment. Then we will talk to you about surgery. Based on what we originally seen, the surgery will definitely be a Mastectomy on the right side. Both sides will be your call at that time. How about the pet scan, did we do a pet scan? At the beginning right? So the only thing they found on the pet scan was a rib fracture. It's probably an old thing. So the thing would be to complete your treatment then talk about surgery somewhere in February. Wait about three weeks or so after the last chemo. Given the fact that you had a very large tumor on the right side you will in addition to surgery, you will need radiation on that side alright?( How is radiation done?) Radiation is done from the outside over 4, 5 or six week’s period. You are not the candidate for short radiation; it will depend on how much of the tumor is left behind. Hopefully we will only have to radiate the breast tissue itself. The fact is to consider when we do surgery most people will opt to reconstruction, so the issue with the reconstruction it makes the radiation a little more difficult. However it's not something that can't be done. We can have you see a plastic surgeon, so when you're ready to do the surgery he will get through the process of talking to them and trying to get things organized. I will see you get the authorization to see a plastic surgeon. While you are going through your chemo treatment right now. Our step will be, finish up the chemo, do the surgery, radiation will follow afterwards. So by the time you see the plastic surgeon we arrange the time for the surgery and operating will take a couple of months, we’ll get started after couple months from the time you see the plastic surgeon… before we can schedule the surgery…. so we need you to see somebody so when the time comes for surgery we wont have to go thru the process. They will put in an implant but first a plastic expander in there to begin with, then eventually switch to an implant. (Do you recommend her taking the other breast too?) That's your personal call, even through all the tests we have been negative, a lot of people do, so they don't have to face another operation. Especially if I make a recommendation that she should have mastectomy it's your personal call, talk it over with the plastic surgeon. As far as your breast is concerned we don't have issues that will be larger than the other. You don't have to do it if you don't want to. You can leave the other breast alone. Whatever you decide will be your call whatever, it's not going to be an issue. Her insurance will cover whatever; it's not going to be an issue. So she says one side, or two sides, they don't have a problem.
Alright you're doing good I'm glad you're responding well. (The MRI shows no cancer is that what you see?) The MRI shows that significant resolution of improvement, that’s what we do, the MRI for it's just to see. And it's shrinking in response to the treatment. The only way we can see if there isn't any cancer is to do another biopsy which sometimes we do if the tumor has not come down. I would say we do another biopsy and see if we are really making any impact on that. But here there has been an improvement so we really don't have to do a biopsy on you. Alright very good I will go get the authorization we will see you in two months, you should be done with your treatment then and onto surgery okay?

Janis

Trish

01-23-2014, 05:22 AM

Sounds like good progress is being made Janis, you're getting through that chemo now and that tumour is shrinking down, that's awesome news to read! So pleased for you :) x

Squirt's Mom

01-23-2014, 06:30 AM

Wow....that sounds so good, Janis! I so happy the chemo is working so well for you! This new treatment may bring many women more hope and you are helping pave the way. ;)

What do you think about the other breast? That would be a difficult decision for some....for me, not a problem - GET THAT MOTHER OFF! :p I so admire Angelina Jolie for the step she took. What bravery and strength she displayed and continues to display for the whole world to see.

And it's GREAT you have such good insurance! Take full advantage of everything it can offer you. It sounds like you have a great medical team too.

Keep your chin up and know your Angels here are always hovering.
Hugs,
Leslie

molly muffin

01-23-2014, 09:44 AM

It sounds like a good report Janis and a firm plan going forward. The only real decision is whether to do one or two and the consideration of reconstruction with the radiation.

Hang in there! You're doing awesome
Sharlene and Molly Muffin

Altira

01-28-2014, 02:20 PM

Transcript 1-24-24

You got a copy of the MRI report Janis? What did you see? (What I saw was it was greatly reduced and the other side is completely clear.) Yeah, so here is the national guide line at the moment. You are getting two drugs that are not chemo and one drug that is chemo. You’re getting Taxotere the one that makes you loose your hair. That’s the one that’s chemo. You’re getting what is called Perjeta-Pertuzmab which is not chemo and you’re getting another medication called Herceptin and that’s not chemo.

From the very beginning I still try to challenge everybody, but there is no wrong or right answer. The Perjeta-Pertuzmab with this chemo got approved back in October was recent by the FDA for people who have her2 + breast cancer. Primarily before we used to give people Taxotere Carboplatin along with Herceptin, they called it TCH that used to be the standard of care before November, since November there has been a lot of questions about what is the standard of care. Now that Pertuzmab can be used together with the chemo do you really need to have the Carboplatin? Well the more chemo you get the more toxcity there will be. So the reason you have been able to tolerate so well, I think primarily is because I give you only one chemo drug and 2 non chemo drugs, which is based on a study called Neosphere …… Neosphere is a study that people use the protocol your on right now, Pertuzmab, Herceptin, and Taxotere we use three drugs, two of them are not chemo and one is chemo they say based on that study you have about a 39% chance of getting complete remission at the time of your surgery.

Now and days if you go to most oncologists in the community, they actually use what used to be TCH Taxotere, Carboplatin, Herceptin and they add Pertuzmab so you still get your two chemo therapy drugs plus the Pertuzmab and they give that for six cycles. So what I told Dr. Khanijou is that instead of giving the two chemo therapy drugs Herceptin and Pertuzmab you’ll just have one chemo drug Taxotere, Pertuzmab and Herceptin were going to give you that for six cycles. Ok because if it is working so well … again at the time of your surgery we do not want to see any cancer. Ok so, basically we are using what most people are using except minus the Carboplatin. Is that ok?Well nobody can say which one is better which one is not but we already show you after three cycles yours is responding so well. The reason I wanted to do this MRI is if for some reason you’re not doing so well I would have to add the Carboplatin. Ok so, the bottom line is it looks so good were just going to continue with this for up to six cycles. Like everybody else is doing except we aren’t doing the Carboplatin when we don’t have to. Ok? Questions? Concerns? Where is your list?

(My main concern right now is the radiation. I don’t really understand what that is.) What radiation? (Khanijou said I have to have it for 4, 5, 6 weeks.) Cus your thinking about mastectomy or lump ectomny? (He said he is going to recommend mastectomy.) Yes. ( So he says in that instance he wants radiation for 4, 5, 6 weeks.) Ok so this is what’s going to happen. Janis. They used to say that if you have a tumor bigger then 5cm in size for sure you have to have radiation. Ok? But if we were to give you neoadjivin chemo like we are doing right now, and lets say you get a totally complete remission the question is do you really really need to have radiation to follow? I’m not that kind of doctor or Khanijou…. that’s likely going to end up being a tumor bard discussion. Ok? Because if we give you totally complete remission and you take out the whole breast anyway, at the end of the day is radiation absolutely necessary? Is it going to offer you any benefit? At that peculiar point. We are not there so we are not discuss about that. (But I want to know about it now just in case it does happen. Because I have heard that it burns the skin and it’s itchy an a horrible thing.) I’m going to thank Dr Khanjio for bringing this up. (everyone laughs but me) Now Janis again we do that primarily …. (You didn’t answer my question…) I know. We do that primarily I’m saying that it might be some people might tell you that it’s really not necessary, and that might not even be an issue but the answer to your question is yes it cause radiation burn, so I cannot refute that. I’m just saying that at the moment I’m not even sure that the reason we do radiation is that primarily is somebody has a 5cm tumor when they go for surgery it’s 5cm cancer they give radiation to decrease the risk of local recurrence. Weither you have surgery or not whether you have mastectomy or not when the tumor is that big you try reduce the local reacourance. But what if you get nemoadrifin chemo and you have an absolute complete remission. (So at the time of the surgery if they find no cancer at all then there would be no radiation.) Well again that would be a tumor board discussion.

at the time of your surgery we do not want to see any cancer so we are doing what most people have been using except for the coboplsin is that ok, well no one can say which is better, or not but we already know that you are responding so well. The reason the I wanted the mri was that if your not doing so well I would need to add the casapltion chemo. So the bottom line is it looked good so we are just going to to go with continue with this for 6 cycles like everyone else is doing except the cabbplotend when we don’t have to question or concerns … What’s on your list? (My main concern right now is the radiation. I don’t understand what that is.) For what radiation? (Khangus says I have to have radiation because he is going to suggest mastectomy.) Yeah. (And so he says that he wants radiation for 4 5 or 6 weeks.) Ok so this is what’s going to happen Janis. They used to say if you have a tumor that’s more then 5cm in size for sure you have radiation but we keep it’s been going down steadily. So im following it. When at the end of the day is radiation absolutely necessary?. Is it going to offer any benefit.? But we are not there. (I want to know about it now, just in case it happens) But why? (Cus it burns the skin and it’s a pretty itchy horrible thing.) I’m going to talk to khanjio for bringing this up. (he laughs) Ok Ok now Janis we do that primarily (You didn’t answer my question) I know I know some people might tell you that it’s really not an issue. But in answer to you question yes it does cause radiation burn. Ok I cannot refute that. But if I tell you that radiation is not a burn then I would be lying to you. (Course he said he was going to absolutely do it!) I think when the time comes we will go thru the tumor board and discus it. About your case. Ok. I told you it’s going to burn and you may not know about the burn until 3 weeks.. Some people have no problem. Again I think it’s going to to be the out come of the surgery will be incredibly important and your prognosis depends totally upon ????? Studies have been done the ones that surgery that don’t have evidence of any cancer ?????????????? (damn) I’m talking about your survival. There was a study done in December for her2 positive and you ??????????????????????????????????? (Radiation is something done every day?) Yes every day for the course of 5-6 weeks. Ok? and he is right when you first showed your entire breast was covered with tumor. Ok? But if we cannot find anything at the time of surgery we will talk about it at that time.. Come on Questions! (What else don’t I know?) What you mean you know more then me! Why doesn’t the MRI show that she doesn’t have any cancer?) The MRI shows that she does have something but there is a significant improvement... She is a 56, she was a 77 and started out as a 319. We got two more chemo’s to go. But that has no value as far as the survival Ok? Or anything like that. The whole right breast did not feel right to me. That’s why we can’t say it. But since you are progressing so nicely I’m not going to change anything. I have never felt the urge to give you 2 chemo’s. If we don’t have to we try not to. With chemo you could end up with alkemea 20 years from now. You have other questions for me? (Does radiation affect your hair?) Only where it is used on your breasts. But your hair will come back in thicker and curler. (Are you serious?) Huh? (Are you serious?)Most of the time it’s going to be a little curly. uh ho... It’s the least of your worries. (I’m crying) (My mom is laughing – she hates curly hair!) (Thicker is good Bud says.) Janis it might not happen. I’ve upset you, if I’d known that I would have lied to you (He laughed) (I’m still crying) I’m sorry I upset you. He goes looking for tissues.

Note MRI’s aren’t very accurate. Nor are the CA blood tests...

Altira

02-04-2014, 11:05 PM

BELOW....This is just part of my recorded conversation with the Plastic Surgeon...
Its not all that interesting.
But my last chemo is on Feb 13 and surgery hopefully will be a couple to three weeks later. Full completion maybe as long as six month from then.

Dr. Turpin Transcript:
Let me get these numbers down I'm not good at remembering things anymore.. They are taking care of you and your getting chemotherapy now. (I have one left to go to next week.) You got the chemo first instead of second that's good. Is the Cancer getting smaller. (The whole thing was hard it's about half the size of that now.) So its softening up now it's getting smaller good. There was cancer in lymph notes that means they want to radiate to correct sometimes they do sometimes they don’t. I hate to see them do it collectively I'm not a fan to radiation. Because it changes your tissues. Are you going to have mastectomy correct one or both sides.? (He says it's my choice he didn't find anything malignant in the left side but suggested it might be a good idea but it was up to me. I figured we'd just got head and have it done.) He says yes most gals do. Those MRIs are not perfect they miss a lot. That's the best thing we've got that I still have missed things. If you take them both off it's easier for me to make you symmetrical. Plus you don't have to worry about it anymore. (How many surgeries does take?) That can depend sometimes things aren't quite right and I have to go back and do them over again. the bottom line probably is three. I make a lot of adjustments. (Take the breast off with or without the nipple?) Khanijuo you will have to tell you that for sure because if there's anything near too it will have to go to. Since one of your nipples is drawn in and possibly you will want to do both. Usually they know before surgery whether or not they're going to take them both. I think with you he'll probably want to both take off. It will take Dr. Khanijuo a couple hours to do what he needs to do. Then I'll put in tissue expander in it's basic great implant but it has a blow on it. It's a silicone bag that I can pump up to so when you wake up you're not completely flat or concave. Put a little bit in during surgery and then we will Bit more after three weeks. Maybe two or three total times and within three months you're pumped up to about to the size you want to be. We fill it with saline. (Can you feel the stretching a lot?} No more than you would say like with braces. The pad is a little rough inside so it doesn't always feel so great sitting there. Then after about five months they replace it with a normal implants. with a normal breast implant. They're two basic types of implants thinking putting in. All these implants fail eventually they don't last forever, maybe about fifteen years. We replace the stretcher with the implant and let it rest in there for a while and then later on down the line we put the nipple in. There are lots of things it can require more work but you will probably stay overnight in the hospital and go home in the morning the first time. (Khanijou was saying I was going to get radiation for sure, it is possible to do this and radiation at the same time?) yes I just put some structure in at the time of surgery and it just stays in there doing the radiation treatments. It's much better than trying to do it afterwards where you would have to use skin laps instead. Sometimes there could be trouble with the radiation and flaps from either the back of the belly. So after surgery they'll get together get into Wong and the radiologist and they decide what has been taken out.

Altira

02-05-2014, 07:38 AM

Just wrote this letter to the breast guy

Hello Doctor Khanijou,

I hope you don't mind me communicating with you this way. We just met with Dr. Turpin yesterday. And I have been reading up on the effects of radiation on breast reconstruction. And on radiation it's self. I know that you are very adamant about it being done and to its full extent. Huang is in the mind set that possibly it’s not needed and Turpin says he doesn't like it cus it messes up his work. So here I sit seeing the whole idea in four ways. I for one have a hard time believing I had cancer at all. Or rather that it was really as bad as it looked. Because the first place said it was just calcium deposits. It's hard to believe they were that wrong. It was really your reaction that impacted me the most. One minute from calm and then one look at me that all changed. And you found what you expected. Then I was sent on to Huang (a really great guy) who tells me about this new treatment. And every thing he said about it seems to be true. He's saying that radiation shouldn't be needed. And somehow that seems possible. But you said quite matter a factly, that I will need it without out a doubt. Now Turpin I can see his side as that he doesn't like all his handy work messed up. Then there's me. After you told me radiation was needed my questions about it grew fast! So I have been studying it and I really ran Huang over the coals about it. I don't see how that kind of thing could not do some great damage, not to mention pain to me. My skin used to be like pure white. We would go to the beach when I was a kid. We never used sun screen back then. I'd come home bright red. I couldn't take a shower and I couldn't sleep for days. I couldn't even stand any sheets on me at night. The rest of my family were fine. Then when I was a teenager I got burned so badly on my legs that I couldn't stand up to two days because of

this painful pounding in my legs. And blisters. And I had only been in the sun for a couple hours. I'm no stranger to fierery burns and blisters. Over the years those burns turned into a mass of freckles. So I'm in great fear of the damage and pain this radiation could actually do. Never the less.

But the bottom line is your assumption. And I agree, Radiation seems like very needed part of my treatment. I think you are right. That lump was huge. It was beginning to feel hot and hurt. And believe me Dr Khanijou.... I was doing my damnedest to get rechecked a lot sooner then I managed too. It was so odd, I had come to the conclusion if I died from this then it must have been Gods will, cus an awful lot of odd things kept happening that prevented me from getting rechecked. I'm a very fanciful thinker so I'll spare you my silliness. A lot of odd things happened in my life, I'm a very strong believer in fate.

I do hope that you and the other doctors can get together and talk about it first. And consider that maybe the chemo treatment I got could have made me cancer free. I'm thinking what is left is possibly this calcium thing they were talking about. But as much as I don't want to see my reconstruction get messed up I don't want to die or get cancer again either all because we skipped the radiation. Maybe you'll get in there and you'll find that just radiating the tissue will be enough. But I have read about it and it seems that it's a pretty important thing. So maybe I got lucky with the Perjeta thing but it might not turn out to be as great as we hope. So maybe I end up being the first statistic in Perjeta without radiation. Hell I'm ok with that too! Dr. Burris said you were the best doctor ever and I think he was right. He's not the only one who said that either.

(Oh.... I want to mention that both my dad and my brother had Prostate cancer. Both had an operation and neither of them had it reoccur. PSA always came back "0" after that. My dad lived to 95. My brother had Prostate cancer like when he was my age. He's 66 now. Huang thought that was significant.)

So please talk to the others and especially Huang and consider what has happened with this Perjeta. And when you get in there... you just do whatever your gut tells you. That's my two cents anyway. I'm in your hands.

My mother asked me to make a list of the actual CA blood test figures as they came down and I wondered if maybe you had time to see them for yourself. I don't know how much faith you have in this but bellow is the list I sent my mom.

QUEST DIAGNOSTICS

1010 LA VETA

Pre-Chemo

Oct/29 CA 15-3 49 (H) ref range <32

CA 27.29 319 (H ref range <38

Nov/15 CA 15-3 41 (H)

CA 27.29 214 (H)

Dec/4 CA 15-3 32 (H)

CA 27.29 137 (H)

Dec/30 CA 15-3 30 (within normal limits!)

CA 27.29 77 (H)

Jan/21 CA 15-3 26 (within normal limits!)

CA 27.29 56 (H) (needs to drop below 38)

Feb/11 CA 15-3

CA 27.29

Mar/3? CA 15-3 ? If it’s done

CA 27.29 ?

CA 27.29 needs to drop 19 counts with 2 chemo's to be "within normal limits"

Note: CA27.29 levels should not be interpreted as absolute evidence of the presence or absence of disease:

Neither are any of the other mechanical tests it seems

Altira

02-25-2014, 07:06 AM

Well chemos all done. But not its effects. Some of my toe and fingernails are lifting off. No hair and some other Embarrassing stuff. And im in a real crappy mood. Just waiting on a Surgery date.

HA! My husband did the dishes and cleaned the kitchen the other night. Hadn't been cleaned in days. That's a first. I didn't even ask. There's good in everything I guess.

molly muffin

02-25-2014, 07:19 AM

The main thing is that the cancer is shrunk enough that they can get it all. The hair, the nails and the other embarrassing stuff will resolve and come back.
So this stage is over with and now moving on to the next, forward and up as they say. :)
Soon this will be, one hopes, a thing of that past that happened and you survived.
Yay on hubby to do the dishes and kitchen cleaning. That is a good thing. :)

You can do this!! Look how far you have come already,
hugs,
Sharlene and molly muffin

Squirt's Mom

02-25-2014, 08:59 AM

YAY! This phase is over! And based on the reports, it did a good job. THAT is all that matters, my lovely friend. Take a moment or two today to look back at the beginning of this journey and see just how far you have come, how strong and brave you have been. And whether you see it or not, you have been and remain beautiful through it all. Take a few moments to honor yourself, to reward yourself. You deserve it, darlin'.

While I was so sick a couple of weeks ago with an abscessed tooth that went septic, you were on my mind (when it was functioning) as I lay in a pool of drool and bile on the bathroom floor. I couldn't help but wonder if this is how you felt, or worse, much of the time lately and my heart was wounded that you should have to face any of this. I whined and moaned and groaned over a tooth, and you have handled so much more for much longer with a grace and courage I can only aspire toward. I am not sure you realize how you lift us up as we see you walk this path before you.

It is eye-opening for me to see the way people treat me differently because my head is shaved. They automatically assume I am sick and treat me with deference. I have been encouraged to move up in long lines at the stores; allowed to use bathrooms in places that have signs posted saying "NO public restroom!"; strangers come up and hug me, telling me their stories or stories of those they know and love or offer to pump my gas or carry my groceries to the car. The feelings these experiences bring are hard to define - hope for mankind, embarrassment, anger at perceived helplessness, frustration, determination, sadness, gratitude....a mesh of emotions that don't always sit well side by side, causing a great deal of confusion. But with every experience, I get to tell them about my brave friend, a lady who loves with all her being, who has suffered enough loss and grief in her life, who did not deserve this in the least but is facing it with a strength I can't fathom. You will get through the next phase just as you have this first one - with flying colors.

And if I could give you my boobs I would do so gladly. Goodness knows, I have no use for the things! ;):p But given a choice, I would go for high and perky not low and saggy! :D:p:D:p

Many hugs and much love,
Leslie

Altira

04-02-2014, 06:58 PM

Thank you angels!!!

I'm one of the lucky 39 out of 100. I am now cancer free with this new drug. Perjeta. No radiation needed. No cancer was found. Still have reconstruction and 9 months of Herceptin to go. But I'm ok with that!

Wow never thought I'm be this lucky!!!

molly muffin

04-02-2014, 07:23 PM

Whooo hooooo!!!! It's a celebration!!!! Congratulations!!!

hugs
Sharlene and molly muffin

Trish

04-03-2014, 06:35 AM

Hi Janis

Wow what awesome news!! So thrilled for you, that drug has worked so well for you!! You deserve to be this lucky sweet, you have got through this like a champ!! A big pat on the back, a high five and a big ol hug coming your way!!! Ohhhh are we allowed a glass of champers as Sharlene is right, it's time to celebrate!! xxxx

Altira

04-03-2014, 07:51 AM

OK HERE IT IS HOPEFULLY THE BEGINNING OF A LONG LINE OF SUCCESS STORIES:

I first got sick on Feb 1 2013, blood in urine, which was never really solved. I spent one evening in the hospital with what was believed to be kidney stone pain. Wow. But as we perused the cause of this, something else bad was happening in my right breast. Finally I said forget the kidneys we got a real problem here. And in Oct we found out I had stage 3 breast cancer. Her 2 positive cancer and very aggressive. I ended up at the oncologist who told me that the FDA had just approved a new treatment three weeks earlier exactly for what I had. They had pushed it thru quickly because it seemed to really be working. Perjeta and it would be given along with Herceptin and Taxotere chemo once every three weeks for 18 weeks. It was said that I had a 39% chance of being cancer free before surgery. I had a double mastectomy on March 20th.. I cried the whole way to Khanijous’s office today, cried in the waiting room and cried while I waited for him to come in and give me the bad news about what the pathologist found in what was removed from me... Would I have radiation? I was certain I would. When Khanijou first saw me 18 weeks earlier he said radiation would be a must, no way around it. But after seeing what this new drug could do he began hinting that just maybe it was doing exactly as it said it would. Today 13 days after surgery, he tells me I am cancer free! Tells me radiation will not be needed.Well my tears stopped just as others in the room begain.

I walked over and hugged Dr. Khanijou and thanked him. Cus to me radiation seemed the worst of all the things they wanted too do to me. He said if the radiologist says I need radiation to let him know cus he will argue that notion with him. That says a lot because I know Dr. Khanijou holds a lot of respect for his opinions. I still have 9 months of Herceptin (Chemo) and more breast reconstruction surgery to do but as of today I am feeling a whole lot better. I had begun to wonder if things would ever look bright again...

There are so many of you out there that held your faith in God for me, prayed for me and or gave me constant support for my endless questions and complaints. I don’t know what to say. Thank you doesn’t seem good enough. So many cards and heart felt gifts. I’ve never felt so loved. From the bottom of my heart I thank each and every one of you for caring about this oddity I call myself.