Nola - macroadenoma / now Angel Nola

[hollyb]

Hello,
I finally figured out how to start a new thread. Nola, our ~10 yr old pit bull, was diagnosed today with a macro which I had been suspecting for a while.

It all started early last year when I noticed she was no longer able to keep up with me on longer walks, where in the past she would walk 8 miles and then come home and want to play ball. In May, during her checkup, I requested a senior blood panel which showed high ALT. We proceeded over the next several months with liver supplements, bile acids tests, ultrasound and finally biopsy which indicated Cushing's as a differential diagnosis. This was the end of August. Nola's energy level was lower - she didn't like to go on walks much, didn't get excited over seeing other dogs much, but still went nuts over her frisbee and ball.

We started going to the IM doc who proceeded to treat the liver symptoms, thinking there was some inflammation that was taking time to resolve. Late 2015 Nola started excessive drinking and urinating and we noticed she seemed out of it. She started thryoid meds. She enthusiastically loved all people but now seemed to care less when she saw them. We also noticed her normally ravenous appetite diminishing. She stopped eating some of the things she used to like. Of course, her shaved hair areas have not grown back. She was officially diagnosed with Cushing's via LDDS about a month ago. She has been on Vetroyl for 3 weeks with some minor improvements in her energy level. Her appetite is worse. I know this sounds familiar to many of you.

I am interested in knowing more about experiences with radiation. I've read through most of the posts here, but it's a lot of info. I'm curious about tumor size, types of radiation, costs, number of treatments, duration etc. I have a consult in to CSU, per the reco of the neurologist. We live in Washington so would be more likely to travel to UC Davis, if cyberknife radiation is an option. The neuro doc also mentioned a clinic in Portland, OR that does fractionated radiation. He mentioned CSU & Davis being the gold standard.

Thanks for any information.
Holly (& Nola)

[Harley PoMMom]

Hi Holly,

Welcome to you and Nola, and she is such a pretty girl! Gosh I am sorry that sweet Nola is going through so much and it's always worrisome when they lack an appetite, which is common with macros. Prednisone is generally given to help with the inflammation and it may even perk up the appetite. Was Nola's macro diagnosed by a MRI or CT?

We do have members with dogs that have macros, and I'm sure we even have a designated thread in our forum for macros, let me go find that....found it...http://www.k9cushings.com/forum/showthread.php?t=3567&highlight=macroadenoma

Here's a link to this member's thread whose dog did have Cyberknife: http://www.k9cushings.com/forum/showthread.php?t=6383&highlight=cyber+knife&page=41

I have no first-hand experience with macros, I so wish I could of been of more help. I am sorry for the reasons that brought you here but glad you found us, and please know we are here for you and Nola.

Hugs, Lori

[molly muffin]

Hi Holly and Nola. So glad you found us. I'm Sharlene from the Facebook group. I posted Buttercups link to you there, but here it is again here:

http://www.k9cushings.com/forum/showthread.php?t=5850&highlight=buttercup&page=4

So it looks like Buttercups tumor was 2.5 cm and was pressing on an optic nerve. Have you had imaging done to determine the size of Nola's?

It looks like she had 3 treatments instead of the 2 I mentioned originally.

less the 10 percent will experience side effect and of the 10 percent only a few really got sick, no deaths. Dogs really do well going through the process.
On average they see tumor reduction around 40% by month 2, and then gradual reduction for another 4 to 6 months. Each case is different of course. Tumor will never disappear.

I don't see where she says what the cost of the radiation treatment and all the consults were, but I feel pretty safe in saying several thousand dollars.

Some of the others will be by to say hello too.

Welcome to the forum.

[labblab]

Hello and welcome from me, too. I am especially sorry to hear about Nola's diagnosis, because my husband and I lost our own Cushpup to what we believe to have been an expanding macrotumor. The diagnosis was not verified by imaging, but his worsening neurological symptoms were consistent with a macro. We did not pursue treatment because at the time he was diagnosed, the only option was conventional radiation performed during a dozen sessions spaced over a month. For several reasons, we did not feel as though that was a good choice for him. But as you already know, there are now additional options and we have indeed had members who have experienced success with both conventional and more innovative radiation techniques. Unfortunately, there have also been some sad stories, as well. So the risks and benefits need to be weighed, of course.

In addition to radiation options, I do want to mention that one of our members was actually the pioneer for experimental surgical removal of her pituitary tumor. The procedure was overseen by Dr. David Bruyette and performed at UCLA. I am not sure about the current status of the surgery there, but here is a write-up of "our" Lucy:

http://www.dogaware.com/articles/newscushingssurgery.html

Dr. Bruyette has remained available to our group for emailed questions, so if this is an option about which you have any interest, I can easily supply you with his contact information.

In the alternative -- if no direct intervention is planned -- as Lori says, it seems as though supplemental prednisone is often prescribed in order to reduce inflammation in the brain. As paradoxical as it may seem, the pred is sometimes prescribed in conjunction with trilostane. Our understanding is that the goal is to keep the Cushpup's natural cortisol production under control so that the effect of the supplemental prednisone can be kept as consistent and uniform as possible.

We will certainly be anxious to hear what you find out from your consultations. And once again, we are really glad you've found us even though we realize that this is a very difficult time for you and your girl.

Marianne

[judymaggie]

Hi Holly and Nola! My knowledge about macros and related treatments is very limited but I did want to welcome you to the forum. You have great support from our admin staff. Rely on them as much as you need to!

[hollyb]

Thanks everyone. Nola had an MRI yesterday. Her tumor is top>bottom 1.6 cm, front>back 1.7 cm, widest 1.4 cm. The neurologist told me that CSU has the gold standard cyberknife treatment. UC Davis offers stereostatic radiation and that those are the two best options if she is a candidate. I've contacted both of them and hope to hear back soon.

She currently doesn't have any brain swelling and her neuro symptoms are not super severe at this point. We did get an appetite stimulant prescribed, though she ate pretty well last night after getting home from the MRI. So far she is eating some kibble mixed with rice & tuna. Fingers crossed that this keeps working!

I did send a private message to Dawn with Buttercup. Reading her posts definitely gave me some hope!

[molly muffin]

Oh hopefully Dawn will see the message and get back to you. Buttercup really did come through well and had the worse case of cc imaginable.

That's great that there is no swelling currently and the neuro symptoms are minimal.

Do let us know when you hear back and what the next step will be.

[hollyb]

Hello everyone,

Nola completed 3 treatments of sterotactic radiation at UC Davis (California) this past Wednesday. I never did hear back from anyone on the forum who had been through this so wanted to post in case I can be of help in the future.

We had a very difficult month of waiting, as Nola's appetite became rather non-existent due to the tumor and the Trilostane. She was down to 43 lbs (should be at least 50 lbs) when we arrived at Davis. Nola had her initial exam and CT scan on 2/24, and started the radiation on 2/29.

The vet initially didn't want to change any meds, but I mentioned that our local IM vet had suggested we might want to stop the Triolstane. When I spoke to the UC Davis vet on 2/26, they had spoken and we took Nola off the Triolstane. They also started her on Pred for any inflammation in the brain/tumor area.

A week ago today we were syringe feeding Nola (a challenge in a hotel room), but by Monday she started eating again which was such a huge relief!

She did well with the anesthesia and radiation and now we will wait to see how things progress. We will see our local specialist about 2 weeks out from radiation to start weaning her off the Pred. She's eating like a little piggie and, of course, also drinking and peeing like a racehorse. She's also wagging her tail again and starting to seem more like the exhuberant, happy dog she was before all this started.

I suppose the change in meds is the cause of the changes (maybe too soon for radiation though it does vary dog-to-dog) but she also seems much more like her old self, so we are hopeful the positive progress will continue.

[judymaggie]

Hi! So glad to read that Nola is enjoying life again!! :D Whether it is the change in meds or the radiation treatments, it is good news. I know you are relieved to see her eating again -- for me, that is the hardest part of dealing with a pup who is not feeling well.

[scoora]

Hope things keep going well and Nola keeps improving!

[molly muffin]

It's always wonderful to hear of successful treatment. Let us know how she continues to do!!!

[Harley PoMMom]

Hi Holly,

I see that you posted on another member's thread that Nola is 6 months post radiation. How are you both doing?

Hugs, Lori

[hollyb]

Hi there,
We are doing well. Nola seems to be doing great! She's on thryroid meds but nothing more (other than DES once a week). She will go in November for bloodwork and a urinalysis. We've been very pleased with the results - our friends were all shocked at the transformation which started within days after the radiation.
Thanks for asking.
Holly

[Harley PoMMom]

Oh Holly, this is great news!!!!! I am so happy to hear that Nola is feeling well!!! YAAA!!!!! Please do keep us updated and give some belly rubs to Nola from me.

Hugs, Lori

[molly muffin]

Whooo hooooo!!! What fabulous news!!! I couldn't be happier for you!

[hollyb]

Update:
In early October, Nola began to drink more water again. In our hearts we knew...but the consumption level was within the normal range until December. In the meantime, she was also beginning to show less enthusiasm for life in general. In December her cortisol levels were once again high and we knew the macro tumor was recurring.

We were away over the holidays and were fortunate to have several friends visit and check in on Nola with our house/pet sitter. By the time we returned Jan 4, it was clear that Nola was losing her vision. Her appetite had also started to diminish some. Our acupuncture vet suggested some supplements and Chinese herbs, which we then started.

I was not interested in using trilostane again due to the inappetence issues we'd experienced before. And, some of the reading I did suggested that the tumor could grow faster if the dog is on the drug.

In the meantime I contacted Dr. Bruyette who was very helpful. It's very difficult finding DVMs who know much about macro tumors. Our local IM doc was unsure about treating with prednisone, though the local neuro doc did concur to move forward with that plan. We wanted to hold off as long as possible since we felt like the pred was "the beginning of the end".

Dr. Bruyette suggested DDAVP (vasopressin) to help control the PU/PD and it was a godsend. Nola did have to have her electrolytes tested once to ensure there was no water intoxification.

We finally started the prednisone in early February, though our local docs said if the neuro symptoms worsened they would want to reimage. How ridiculous. I was determined not to have Nola poked, prodded or put under anesthesia again...

She continued to see our very caring acupunture vet, who suggested gabapentin for nerve pain which we also started to use. And Dr. Bruyette coached me via email as to prednisone dosage increases.

Nola's appetite remained good but she eventually would only eat chicken, bread, and few types of junk food dog treats. You could tell that her mouth didn't work as well as it once did, due to the tumor.

Nola overall did very well on the prednisone though it was taking its typical toll on her body. Her neuro symptoms were pretty well controlled, and were different that those we'd seen pre-radiation. She was up to 30 mg b.i.d.

Last Wednesday, though, she had some atypical reactions with my husband - fear, yelping when touched and then Thursday morning I walked in to see her having what I believe was a seizure. She'd also had an accident overnight which had become very uncharacteristic.

It was obvious to us that she was ready to move on.

I wanted to post this update in the hopes that our experience and the information I've gathered can help someone in the future. I won't be monitoring the list but will watch for private messages. Like someone on another thread said, if you dog has Cushing's symptoms but is not hungry be sure to consider a macro tumor...

**********
Heaven has gained its newest angel, Nola T. (Turbo) Granola, ~1/1/2006 – 3/30/2017. We certainly had hoped that this very special “larger than life” girl would be with us longer than just over 8 years after her adoption, but we are grateful for the time we had and the memories that we will cherish. And…we know that time will mend our broken hearts.

[judymaggie]

Holly -- my heart goes out to you with the loss of Nola. Your family did a wonderful job of providing her with the very best care you could find and I am glad that the radiation gave you more time with her. Thank you for coming back to let us know of Nola's passing. I am certain that the information you have provided regarding macro tumors will definitely help others in a similar situation.

[Joan2517]

I'm so sorry also...sending hugs and comforting thoughts to you and your family.

[labblab]

Holly, I want to thank you so much, too, and also to tell you how deeply sorry I am for your loss. We hope it may give you some comfort to know that Nola has now been added to our special memorial thread of honor.

http://www.k9cushings.com/forum/showthread.php?t=8383

She was such a brave girl, and you were such wonderful parents to give her every possible chance to enjoy those extra months of quality time. I am sure your journey will be a help to other members who are facing similar issues in the future.

Again, thank you so much, and our family here will always remember and honor your angel girl.
Marianne

[Budsters Mom]

I am so sorry for you loss.:o

[Squirt's Mom]

Oh Holly,

I am so sorry to hear this about our sweet girl, Nola. She, and her family, fought the good fight for so long and as difficult as it was I know your decision was made of love and therefore right. Today she is whole and strong physically and mentally once again. She will watch over you with the same dedication and love you did her.

Thank you so much for coming back to let us know. We will be here anytime you need to talk.

Our deepest sympathies,
Leslie, Trinket, Sophie, Fox, Bud, and all our angels



The Way
Author S.Long

In the darkness I turned to go; my last day's done, I'll miss you so.
No time even to say goodbye or lick the tears spilling from your eyes.
That's when I heard you call my name; I knew then I must ease your pain.

Since I've no voice with which to speak,
Its whispers in your dreams I'll make.

Ease your heart and rest your mind, my time with you was the best of kind.
I couldn't have asked for a better friend, we've shared our journey to the very end.

There's one final thing you need to know, I'll whisper in your ear before I go...
"I'm leaving first to find the way- I'll lead you there on your last day."

[molly muffin]

My sincerest condolences on the loss of your beloved Nola.