Pituitary macroadenoma / quality of life - sweet Louie has passed

[Louie's Mom]

For those who don't know our story, Louie was diagnosed with Cushing's disease about a year ago, but his diagnosis was somewhat borderline and I've never really considered him a Cushing's dog, because he never behaved like one.

His is a very long story, but the short version is that Louie has several other conditions which would normally be treated with steroids and, therefore, he is not a good candidate for treatment of Cushing's. That's a big piece of the reason I haven't more aggressively pursued this diagnosis, as it's kind of a moot point for us, anyway. He either has it, or he doesn't, and if he does there's not much we'll be able to do.

I'm noticing lately that he is drinking more water, and I am starting to suspect that the borderline diagnosis was just an early diagnosis. It matters little, really, since I can't treat him, but I'm wondering if others here have had similar situations and, if so, could give me some advice regarding what we can expect over these next few years-- assuming that Cushing's is indeed one of his problems.

Thanks for any thoughts and/or advice.

Laura (with Louie)

[gpgscott]

I'm noticing lately that he is drinking more water, and I am starting to suspect that the borderline diagnosis was just an early diagnosis. It matters little, really, since I can't treat him, but I'm wondering if others here have had similar situations and, if so, could give me some advice regarding what we can expect over these next few years-- assuming that Cushing's is indeed one of his problems.

Thanks for any thoughts and/or advice.

Laura (with Louie)

Hi Laura,

I don't know where you are located but summer is upon most of the country (New England excepted) and is it possible the increased uptake of water is due to elevated temps. And have you been measuring the amount over a period of time so you can compare?

You might want to consider the UTK panel, if Louie has hormones other than cortisol out of range a treatment for those hormones could help his condition.

Scott

[Squirt's Mom]

Hi Laura,

Here is a link from our Resources section on complications with untreated Cushing's -

http://www.k9cushings.com/forum/showthread.php?t=195

With Louie's lymphangiectasia, I can understand your priorities for treatments. Upsetting his balance could be catastrophic!

Having said that, you might talk to your doc about Anipryl. It will help control the signs but probably won't address the elevated cortisol, tho it can in a small percentage of pups. Anipryl does have the capacity to cause some digestive upset and can cause anorexia according to the manufacturer.

http://www.pfizerah.com/PAHimages/compliance_pdfs/US_EN_AR_compliance.pdf

Percentage of Dogs with Adverse Events Reported in Clinical Field Trials
Adverse Event Anipryl (n=404) Placebo (n=67)

vomiting 26% 21%
diarrhea 18% 10%
hyperactive/restless* 12% 6%
anorexia 8%

Just a thought as it may not be an option for Louie at all.

The treatments for the other hormones Scott mentioned would be melatonin and lignans, but I would have the UTK panel done first, and be sure Dr Oliver at UTK knows all of Louie's problems and current meds.

He is such a sweet little fellow, it is a shame for him to be so ill. You do an great job with him, tho, and he is so lucky to have you as his mom.

Hugs,
Leslie and the girls

[lulusmom]

Hi Laura,

I could not remember the circumstances surrounding Louie's cushing's diagnosis so I went looking for your old thread on cc.net. I found a few pages so far and saw that you asked this same question a year ago. I'm still looking but in the meantime, here is Alison's response to you:


07-03-2008, 11:17 PM
AlisonandMia
Senior Member Join Date: Nov 2007
Location: Brisbane, Australia
Posts: 3,010
Images: 16

Re: Not going to treat (at least for now)

--------------------------------------------------------------------------------

Sorry to hear that Louie has so many problems and it does sound like he possible "needs" his Cushing's at the moment - or at least doesn't need his cortisol level messed with right now.

The two year thing with treated Cushing's dogs is not really true. It comes from the fact that many Cushing's dogs are already quite old and/or have other conditions, some are terribly compromised by the disease before they start treatment and sometimes the treatment is not administered properly either. Many, many treated dogs live for years - one member is here with her second Cushing's dog and her first one lived for 8 years on treatment before dying of something unrelated. Well managed, an otherwise healthy Cushing's dog can be expected to live out is normal life span and some even exceed it.

Untreated, however is a different story but it seems to depend on just how severe the Cushing's actually is and probably how well the individual dog handles the cortisol levels. Things like diet may play a small part too. Two years seems to be around how long many of them last, however. It sounds like Louie, because of the lymphangiectasia, would very likely be on corticosteroids if he didn't have Cushing's and so you would be facing the same situation.

One thing you could consider down the track if you can get him somewhat stable and feeling well day to day is to treat the Cushing's - maybe just reducing his cortisol level to a level a bit higher than is usually desired for a treated Cushing's dog and be prepared to step in and give him some steroids occasionally if his lymphangiectasia flares up. That way his total corticosteroid dose over time could be kept to a minimum which is usually what is attempted with steroid therapy.

Good luck and please stay in touch and let us know how you and Louie are getting along.

Alison

[jrepac]

Certainly, get the testing done for Louie.
But, anipryl might be of some help....even if it does not fully control cortisol levels.
It would not interfere w/any exiting corticosteroid (sp?) based treatments, I suspect...but confirm w/your vet.

A few of us have had some luck with it ....I've been using since sept...mine was a 'borderline" case as well...but we may be crossing the border shortly.....

Jeff

[lulusmom]

Dang it, I couldn't find all of your thread but enough to get the general gist of things. Louie was diagnosed by UC Davis a year ago this month. Alison and I both had some questions as to the validity of the testing given the multitude of issues that Louie was having at the time. We had asked you to post the results of the tests that were done by your vet to confirm the diagnosis; however, I don't believe you ever did. Is there any way possible that you could do that now?

You mentioned in one of your post on 7/4/08 that a lot of the symptoms that you attributed to Cushing's appeared to resolve after a regimen of cyclosporine. On 7/21/08 you were questioning the diagnosis yourself and mentioned that it was possible that test results weren't really clear, the vet was on the fence and it wasn't until an LDDS was done that the diagnosis was confirmed. That raises my eyebrows because at that time, any number of Louie's problems could have caused a false positive result LDDS result. With all his problems, I would imagine that an abdominal ultrasound was done. If so, can you check to see if there was any mention of the adrenals?

Louie's cushing's symptoms seemed to have come and gone in the past, depending on what other condition was being treated. That in itself is suspicious as he's never been treated for cushing's since being diagnosed over a year ago. The progression of cushing's is a very graded process but I would certainly think that you would be seeing more symptoms by now. It is also quite possible that the increased water intake you are seeing is due to other factors. Polydipsia is not a symptom that is exclusive to cushing's. Urinary tract infections, kidney disease, liver disease, diabetes mellitus and even high blood calcium concentrations (hypercalcemia) caused by dehydration can increase a dog's thirst.

I'm not sure I've ever told you this but I think Louie is absolutely adorable with those amazing ears. I should have such good hair days. :D His little face never fails to make me smile. I'm so glad you found us and are posting once again. I'll be looking forward to hearing more about Louie's test results.

I've pasted your two posts from last year below.

Glynda


07-04-2008, 01:00 AM


:Laura:
Member Join Date: Jun 2008
Location: Sacramento, California
Posts: 41

Re: Not going to treat (at least for now)

Thanks, Alison. I envision something along the lines of what you suggest, where if we can get him more stable with the lymphangiectasia and other inflammatory processes then we can try to get his cortisol levels down somewhat. I hope that will be possible.

I am a bit intrigued, as he did initially improve quite a bit on the cyclosporine and many of the improvements were in areas where we see Cushing's symptoms-- the dark spots on his skin, the cysts, the lesions on his skin, his energy level-- all of those things were dramatically improved for a time. So it's possible he'll feel quite a bit better at the increased dose.

Thanks, by the way, for merging these threads together. It has been a while since I posted and I thought you all might have forgotten all about Louie by now!



07-21-2008, 12:37 AM


:Laura:
Member Join Date: Jun 2008
Location: Sacramento, California
Posts: 41

Re: Not going to treat (at least for now) - Louie - Chinese Crested

Hi,

I just posted but don't know what happened to my post. It's late, so maybe I hit the wrong button.

Thanks for your replies. I don't yet have his actual test values in hand. I am fairly certain that the ACTH stim test was done at least once before the LDDS was administered at Davis but do also recall that the vet was on the fence for a while about his results until the LDDS was done, so the earlier results were likely not all that clear. I do know that he had concentrated urine once, then dilute, and so on.

Up until now I've pretty much been trying to let the experts do their jobs, as there are plenty of them and that's what they are trained to do. But I do have to wonder to what degree its possible that this diagnosis of Cushing's disease isn't firm. I will see if I can get all his test results faxed to me this week so that I can get more detailed opinions here. Was really just looking to answer the general question tonight about how strong an indicator of Cushing's the appetite really is.

Thanks again,

Laura

[jrepac]

Ah if only Cushings were easy and clear cut to diagnose...it is not...multiple vets and multiple tests are par for the course

[Louie's Mom]

Thanks, everyone. It makes me happy that so many here remember us.

Indeed I did ask a similar question a year ago and I hope you will all forgive me, as we have had so many other things on our minds with him that Cushing's just had not been front and center, so there's much I don't remember about this disease at the moment.

I will try to get the results of Louie's Cushing's testing from the vets at UC Davis so that I can post them here. It was quite a while ago and I'm sure things have changed since then, however we did have enlarged adrenals on ultrasound at the time-- bilaterally, which would point toward pituitary involvement, if I remember correctly.

I don't plan at the moment to have him tested again, as it's likely to be an academic exercise, given that we have no plans to treat for it, and with all of his health problems we really have to be judicious about where we spend money on testing.

I am, though, interested in hearing more about anipryl and will be doing some research via google and pubmed to see what I can find on that.

Glynda, thank you for your kind words about Louie's ears :) Sadly, his ear fringe has taken a bit of a beating from the rabies vaccination induced immune-mediated disease that he suffered, which caused quite a bit of necrosis at the ear pinnae. However, his ears have stopped bleeding and his skin has begun to heal, so all the fur that's left to grow back is growing in again. The avatar pic of him was taken in December 2007, just a few months before he really started to decline.

Will be back when i get the Cushing's test numbers. Thanks all.

[Louie's Mom]

Hello all,

I have not visited this board for several years, so I doubt anyone will remember me. My Chinese Crested, Louie, was given a tentative diagnosis of Cushing's Disease about five years ago. He also has a number of other problems, most notably a chronic intestinal disease which would normally be treated with steroids, and so we decided then to let his Cushing's remain untreated in order to "treat" the other problems which were more life threatening at the time.

It's been something like five years and I'm quite pleased to say that Louie is still with me. His Cushing's has progressed quite slowly, up until the past few months. He's now fifteen years old.

Lately, however, he's become quite fragile and seems to be exhibiting a lot of the symptoms of macroadenoma-- pacing, confusion, ataxia-- along with a general worsening of his overall condition with pronounced hind end weakness. I can no longer keep him in the bed with me at night as he gets up in the middle of the night and wanders around, falling off the bed (he is nearly blind). So he now sleeps in the kitchen where I have a little blocked off area for him.

I know that, as he progresses, his "time" is coming. What I don't know is how to make the determination that his "time" is here. He enjoys eating (like any Cushing's dog) and seems to enjoy snuggling with me for periods of time, but more often than not when I leave him in the kitchen I will come back to find him just standing there, seemingly unaware of his surroundings. He has his crate, he has two other beds on the kitchen floor to sleep in, he has a heater to snuggle next to, but he seems oblivious.

I have no real idea whether he is suffering. Because we were never going to treat his Cushing's, I have not done a lot of research on Cushing's like I did with his intestinal disorders. I'm not asking you all to tell me whether it's his "time," as I know you can't do that, but I'm hoping maybe someone here can provide some insight into what his quality of life might be like at this stage, and whether he is in significant pain, and what I can look for in the future.

Thanks for any insight you can offer.

Best,

Louie's Mom

[mytil]

Hi Louie's Mom,

I do think I remember you (back in 2008). I sent you a message - look at the upper right hand corner of the menu bar and click on Private Messages.

I am glad you found us. Your question is a tough one but it seems to me that, at this point, Louie seems to be having enjoyable moments and is well taken care of. I would say that if as he starts not to eat or drink, and the muscle weakness effects his mobility and no longer stands easily or walks and is unable to do the things he enjoys, then it could be time.

Terry

[lulusmom]

Hi Laura!

Of course we remember you. Who could forget little Louie? His adorable face with those awesome ears always melted my heart. :D

I've merged your post with your original thread and only wish I could have included your thread on cc.net.

Glynda

[Squirt's Mom]

Hi Laura!

Yes! I remember you and sweet Louie! In fact, I often went to read his blog for a while then let that slip away as he improved and other things got my attention. :o

I just went through a similar situation with my Boston, Tasha, who had breast cancer. I was so afraid of missing "the" sign and equally afraid of taking a single good day away from her before it was time. Her cancer spread to her brain and she started having seizures. I knew then that was "the" sign I had asked for. In her case, there was no hope it would get better; they would only become worse as would her cognition. She was so full of love and life I just couldn't ask her to face her last days in confusion or contorted in seizures.

You know Louie better than anyone and I am sure your love will lead you in the right direction. These days are so very difficult and I understand too well what you are feeling that lead you to talk to us. Laura, you are still not alone. Your family here is still by your side and we will remain right there as long as you need us.

Hugs,
Leslie and the gang

[k9diabetes]

Hi Laura,

I remember you and Louie as well! Quite an accomplishment for him to have reached such a senior age.

I think we wind up relying on our gut instincts at times like these, and by weighing whether they have more good days / moments than bad ones.

There are some guidelines I have used in the past to try to objectively look at the situation.

http://www.veterinarypracticenews.com/vet-practice-news-columns/bond-beyond/quality-of-life-scale.aspx

http://www.pawspice.com/qualityoflifescale.html

They don't answer all of your questions, certainly, but give you a framework you can work from.

Natalie

[frijole]

Hi from me as well! I remember that sweet adorable little face. Welcome back. Kim

[Squirt's Mom]

Thinking of you and Louie this morning, Laura. Sending strength, hugs and belly rubs flying your way. Cherish each moment, make lasting memories that will bring you peace, and know that your sweet boy knows just how much you love him.

Hugs,
Leslie and the gang

[Louie's Mom]

Thanks to you all. Louie is still with me; I've set up an area where he can stay in the kitchen that will be a little easier for him to walk around in. I imagine this will buy us a few weeks or so, and then we will be facing The Decision again. I really appreciate all the kindness extended here, even though we have not been frequent visitors. It does make this a little easier, knowing we aren't alone.

(((hugs)))

Laura and Louie

[Louie's Mom]

Louie left us yesterday morning at about 6:00am. He had several brief seizures the day before and was unable to walk or stand as a result. I was planning to call in the morning and have someone come out to send him off painlessly in our home.

Sadly, I awoke at about 5:30 to find him seizing violently next to me. He would not stop, and we took him to the emergency vet clinic nearby. He received a shot of valium, which calmed him some, but he never came out of the seizure. At around 6:00 the emergency vet gave him the injection that ended his suffering.

I am heartbroken beyond measure. Even though I could not convince his regular vet that these seizures were related to a macroadenoma, the emergency vet said she suspected a tumor in the brain. Not much we could have done to help him, anyway. He is gone now, and pain free.

For those who are on Facebook, you can see his picture and my memorial post for him here: https://www.facebook.com/photo.php?fbid=502329343160117&set=a.105823312810724.9265.105757646150624&type=1&theater

He was beloved by many and his legacy lives on. He will be forever in my heart.

[Squirt's Mom]

Dear Laura,

My heart is broken to hear of Louie's passing. He fought so hard for through so very much, it is hard to believe he is gone. Louie's story has touched folks all around the world and I am sure he will live on in the memories of each of us.

Your sweet boy will now watch over you just as you did him for so long. I have no doubt that you will know he is near, feel his love warming your heart and lifting your spirits. When it comes time for you to cross The Bridge, you will see those fluffy ears bouncing at the end as Louie excited waits to fly into your arms once again.

Please know we are here anytime you wish to talk. Louie's name has been added to the In Loving Memory thread for 2013 where he will always be honored as a member of our family here.

Our deepest sympathies,
Leslie, Squirt, Trinket, Brick, Sophie and our Angels, Ruby, Crystal and Tasha


An Inseparable Pair
Anonymous

I miss you so much, my four-legged friend
I ask myself each day, if the pain will ever end
Your loss is so hard, for one person to bear
Because we were a team, an inseparable pair

You were by my side, when I got up each day
Waiting so patiently, to go out to play
You were there each night, when I got home
Waiting to go to the park, where you could roam

You always knew, if I was having a bad day
So you'd snuggle up close, and try to get me to play
If that didn't work, you'd put your head in my lap
Then make yourself comfortable, and take a nap

One way or another, you would brighten my day
Like only you could, you had a special way
You gave me a lifetime, of memories to hold
Through all the years ahead, till I am gray and old

I promise I'll see you, again one day
When we'll be together again, to go run and play
Your loss is a cross, I will just have to bear
Because you and I know, we were an inseparable pair

[jmac]

I'm so sorry for your loss.

Julie

[Barb]

So very sorry for your loss. Louie was a very special boy. RIP sweetheart.

[scoora]

Laura,
I am so very sorry to hear of your sweet Louie's passing. My thoughts and prayers are with you.

[Mel-Tia]

So sorry to hear of your precious Louie's passing

I lost my sweet girl just over a month ago to a macro

May little Louie roam free in doggie heaven, knowing his family loved him dearly. I will light you a candle little fella x

Mel and my Angel Princess Tia
Xxxxxxxx

[mytil]

Oh Laura,

I am so very sorry! My deepest condolences!
Terry

[Harley PoMMom]

Dear Laura,

I am so sorry for your loss of sweet Louie and my heart goes out to you. I do realize that there are no words to ease your pain but please know we are here for you.

With Heartfelt Sympathy,
Lori

[frijole]

So sorry to hear this news. Your dear little boy is no doubt free of all pain at last. May all the wonderful memories of happy healthy times sustain you as you heal from this loss. Sending love, Kim

[milosmom]

also sending you healing thoughts and prayers for your heartache.know that you litl one is pain free and always in your heart...patty(mlio)meka xoxox

[Bo's Mom]

So very sorry to hear of your sweet Louis' passing. I know the pain as I just lost my sweet boy also. But, I do know that they are running free of all the pain they suffered here. Their angel wings are wide to carry us all up to join them again one day.
Healing prayers of peace and strength be sent to you in the days/months/years to come.

[molly muffin]

Laura, so sorry to hear of sweet Louis's passing. I know your heart is breaking but as you said, he will live on forever in Your heart. What a great guy he was. I love his Facebook pages.
My heart is with you.
hugs,
Sharlene

[Simba's Mom]

Aw, so sorry for your loss, what a cute little angel Louie is and will always be, bet he's trying out his wings already..sending hugs your way, take care and know we are here for you...

[doxiesrock912]

I am crying as I read your posts.
Daisy Mae, Gracie, Chris and I send our deepest sympathies!!!!
Louie will be in your heart forever and his picture on FB is adorable!

[Roxee's Dad]

Dear Laura,
I am so very sorry for your loss. Sweet Louie knows he was loved.

Rest in peace sweetie, You are our newest and brightest star in the sky......

[Sabre's Mum]

Dear Laura,

I am so sorry for your loss of sweet Louie. RIP lil one.

Angela

[bgdavis]

Laura,

I'm so very sorry. To have had Louie with you all those years and be left behind must be heart-breaking. Just remember the love you two shared.

Bonnie and Angel Criss Ann

[Boriss McCall]

so sorry for your loss.. RIP sweet little Louie..
hugs