New member diagnosed with nonfunctional pituitary macrotumor

[arockkid]

I am new here and actually came to ask my own questions, but your dog sounds so similar to my situation I thought I'd respond...

Everything sounded the same, the drinking/peeing, looking at food and not eating, low thyroid....
We did every test known to man, and it turned out via MRI to be a non-functional pituitary tumor....it can mimic hypothyroid, many (but not all) symptoms of Cushing's, and a little diabetes insipidis....but is actually just a large benign tumor that was causing pressure in his brain...

so he is now on prednisone, primor, doxycycline and an herbal combo called 'statis of the mansion of the mind' and is doing a lot better.

The difference (as is my understanding) is that functional tumors (that cause Cushing's) can be tiny, but secrete hormones, making everything go awry, where the non-functional tend to be large, putting pressure on important things, causing everything to go awry.

Other people here will be able to steer you better, as I don't know much about the lab results, but this is maybe worth considering and asking about.

[labblab]

Welcome to you and your dog! I saw that you had posted this reply on another member's thread. But since the topic of nonfunctional pituitary tumors may be of great interest to many here, I've taken the liberty of making a copy of your reply and posting it here so as to start off a brand new thread. This way, our members can talk with you directy about your experiences.

I will lead off by saying that I had not previously given much thought to nonfunctional pituitary tumors. I have been much more aware of nonfunctional adrenal tumors. And from the little that I've had time to read this far, it sounds as though they are not very common. In other words, most pituitary tumors do have hormonal involvement and endocrinological consequences.

From my own experience, though, I have been aware that pituitary tumors that grow to a large size (macrotumors) can cause a number of neurological and behavioral abnormalities. Although we never had an MRI to confirm the size of his functional pituitary tumor, my husband and I do believe that we lost our Cushpup to an expanding tumor that was placing pressure elsewhere in his brain.

My first thought is that I can see where a functional microtumor and a nonfunctional macrotumor could share certain symptoms such as excessive thirst and urination (as you say, macrotumors have been associated with diabetes insipidus), lethargy, loss of coordination that might look like muscle weakness, etc. But one big difference as you've pointed out, however, would likely be the issue of appetite. Cushpups typically exhibit excessive appetite, whereas dogs with macrotumors often exhibit decreased appetite and even anorexia.

Anyway, we are glad you have joined us, and I look forward to learning more about your dog and the treatment that has been prescribed for him. Have you given any thought to more invasive treatment to reduce the size of the tumor such as radiation therapy? I know it would be a major undertaking. It is not an option that my husband and I decided to pursue.

Marianne

[Somesie]

I, too, would love to hear a bit more about your pup, arockkid. I'm now googling like crazy, but it would be great to know the specifics of your story, as our boy Jordan has many (most) of the classic Cushing's symptoms but his cortisol is not elevated. We've had a borderline ACTH stim, and negative everything else (UCCR, ultrasound, LDDS). I would really appreciate if you would share a little about the diagnostic process you went through, as well as the details of your pup's recovery thus far, if you have the time.

Did your vet give you a prognosis? How old is your dog, and how long has he been symptomatic? Also, I looked up the meds (I'm new to this game) and it seems several are antibiotics...are those to treat the tumor itself, or symptoms (and if so, what symptoms)?

Sorry to be so nosy, but your situation is very interesting to me in how it might relate to our situation. We still don't have a diagnosis, which I'm guessing you can imagine is frustrating, to say the least. Any insight you can offer would be greatly appreciated. Meanwhile...back to google!

Best,
Jenn

[arockkid]

Thanks for moving this and getting me started.
My 9y.o. great dane/mastiff mix was the picture of health until around January, when we noticed his appetite had decreased, and he'd been drinking quite a bit, but all around the same time, he had an accident in the house (NEVER happened before), and his coat seemed dry and thin....he'd get very cold when he'd go outside, and he was sleeping....a lot. He would occasionally vomit out of nowhere (no gagging, food would just come out) and he would drool as if he were slightly nauseous all the time. We started the normal battery of tests, blood work showed all normal except his thyroid levels were on the low side. So we started soloxine for that....a month later, he was not getting better, so we did an abdominal ultrasound and chest xray....all were perfectly clear.
He'd also had one episode where his back legs seemed weak, might be related, may have been something else entirely, and only lasted a day. At this point, at my insistence, we started all tests from scratch. With the thyroid meds, everything came back perfect.

That was the first mention that it could be a brain tumor of some sort, and I was told the testing was expensive and I'd have to drive to Cornell...but I'm a person that likes answers so within the week we were down there having an MRI, and it was determined that he did have a pituitary macroadenoma, but not diabetes insipidis (he can concentrate urine) and another test....what is it? The ATHC or whatever? Anyway, it showed that it was a nonfunctional tumor, which I believe account for about 10-15% of pituitary tumors.

I've been in some contact with David Bruyette about a surgical approach, and in the meantime, as I stated, he is on a combo of the doxycycline, primor, prednisone and "statis of the mansion of the mind". This combo was recommended by my vet, with the hope that it will shrink the tumor. It has only been a week or so, but the prednisone has reduced the brain swelling enough to have him return to near normal, and the doxycycline (he's been on that about a month) has resolved his appetite issues. The herbal combination, I'm on the fence about, but it can't hurt.
I'm waiting to hear from Dr. Bruyette on whether his surgical approach has even been performed on dogs with non-functional tumors, but at least in the meantime he's feeling good, and acting relatively normal. I'm sure I'll have more to post after the weekend, when we speak again.
The only good news is that all the tests have shown that he is in otherwise remarkable health, which I pretty much already knew, but good to have proof of.

[labblab]

Thank you so much for this additional info!! I'm not sure if you already know this, but one of our members was Dr. Bruyette's very first surgical patient :) :):

http://www.k9cushings.com/forum/showthread.php?t=4207

Lucy was a true pioneer, in every sense of the word. Here's a link to the thread that documents her pretreatment and surgery:

http://www.k9cushings.com/forum/showthread.php?t=1009

Ever since you posted your own reply this morning, however, we staff members have been discussing nonfunctional pituitary tumors among ourselves. We are astounded that this is something that we know very little about, even after all our combined years on the forum. For the benefit of our other members, here's a link to the Merck Veterinary Manual that discusses the causes and symptomology associated with some of these tumors (thank you, Glynda!):

http://www.merckvetmanual.com/mvm/index.jsp?cfile=htm/bc/40505.htm

It has certainly been the case that, over the years, we've encountered at least a few other dogs with similar symptom profiles. But we were unaware of the diagnosis. And unfortunately, as you've already discovered, I believe that definite diagnosis is dependent on imaging of the head via either MRI or CT scanning. Both of these tests are expensive, require specialized equipement, and general anesthesia.

Anyway, thanks so much for sharing your experience thus far. I'm so glad to hear that your dog is showing a positive response to his therapy thus far. And we'll definitely be interested in any additional info and updates!

Marianne

[arockkid]

I don't know if I was clear, we had an MRI done, and it did show a tumor approximately 1.5x2cm (keep in mind, this is a 150lb big boy). I found Lucy's thread, and read through the entire thing, when I started researching last month. Dr. Bruyette has been out of town much of the last month, and returned the 15th, and will call over the weekend. He's already indicated that my dog is a candidate (he has the cd of MRI images, and all other pertinent info). A big issue is that I am in Buffalo, and he is in LA, and it's very difficult to fly in the summer months with a dog, so a road trip would be most likely.

[arockkid]

Sorry I wasn't very thorough, as I didn't read through the whole post.....
Here are some answers for somesie...
I have not been given any kind of real prognosis, though I have to say since I noticed the onset of symptoms (it was really like night and day) back in late December, while none of the meds we tried before the most recent ones, I also hadn't noticed much of a decline in those 6 months....he was my regular boy in the fall, and then just kinda switched off. What I seemed to find online was that, via a study, dogs with pituitary tumors had an average of 140 days with no treatment....radiation added about a year to year and a half....and surgery seems to be a near-cure. We're past 140 days, and on the new meds, he's kinda like his old self. I think a lot of it has to do with the type of tumor, and I think things like this are just impossible to predict because most people never get the MRI for a diagnosis, or the symptoms are much more severe (I got pretty pushy from the minute I noticed he wasn't 'quite right')

I looked into radiation, specifically cyberknife, and it is just not reasonable....at $8500 to just 'buy some time', and then have him go through the entire thing all over again when it grows back didn't seem fair, and there is a chance that it either won't work fast enough, and a 5-10% chance that it's a type of tumor where it would have no effect at all.

The meds he is on....prednisone is to reduce pressure immediately. If I'm correct, it is not applicable when there is a functional tumor, and can even cause Cushing's....but for this type, swelling is reduced and subsequently (and rather quickly) neurological symptoms are reduced....
The herbal combo "stasis of the mansion of the mind" is a pretty solid list of herbs that my vet (who is definitely 'outside of the box') says has shown to actually reduce tumor size. It's still early, and I'm not easily sold on alternative medicine....but she works closely with a neurologist and neurosurgeon (who I will also be speaking with soon about this approach).
The doxycycline was a fluke....after his MRI he had blood in his urine, and was put on this....
(I'm sorry I'm jumping around, I hope you can follow it all)
Step back....after he had the MRI in early April, we were sent home with a script for gabapentin (which is for pain of neurological origin), and the next day the doxycycline for a suspected UTI from the catheter. He REALLY REALLY perked up, which I assumed was the gabapentin, but when we stopped the doxycycline he went back to being lethargic and 'off'. I asked my vet whether I was losing my mind that the doxycycline could have actually been what was helping, and she indicated that it has properties kinda....well, I don't know if it defies logic, or whatever....but that...it is far beyond just a typical antibiotic. We put him back on it....and he was back to normal.
After she spoke with her neurologist collegue (I think it is actually her acupunture professor in FL), turns out the doxycycline is part of this 4 script combo that has shown to be helpful for brain tumors....
Which brings me to the primor....my understanding on that is that it is able to pass the blood-brain barrier...

Argh....now on top of jumping around I may even have myself confused....but I believe it kinda works on the notion that the 'tumor' is not unlike the other cysts that tend to accompany it (I also forgot to mention that he had developed a number of subdermal cysts, one that even burst through the skin)...so if I am remembering correctly, it could, in essence, kill some of it off?

It's my understanding that this therapy combo is new and pretty progressive, but nonetheless right now I have my old dog back...and I'm keeping surgery as an option.

Was that even coherent? Sorry.

Leslie

[Somesie]

Leslie,

Thank you so much for taking the time to provide another level of detail. At the very least, it's interesting for me and others to learn something new, but you never know...it could end up really helping somebody's pup, now or in the future. I didn't have any problem following along, by the way, so no apology necessary! I am in the fourth month of what feels like a zillion tests, so I know how you feel...it all gets a bit overwhelming.

I'm curious about a couple of things, if you don't mind? First, you mention a test (and thought it might be the ACTH stim?) that was done to show that his tumor is non-functional. If you can track that down to be sure of what test was done, and maybe even post the results, that would be very helpful.

More importantly (selfishly) for me, can you expand a little on the subdermal cysts? Where were they on his body, how big, did you have any of them aspirated and if so, what were the contents? Not sure if you've read mine and Jordan's thread, but he has several hard bumps on the back of his neck, so your mention of cysts definitely piqued my interest.

Again...I so appreciate your taking the time to share your story. It sounds like you've been one heck of an advocate for your boy, which I know from experience can be a challenge. This medical 'cocktail' he's on...is this prescribed by your local vet, or are you now working with specialists at Cornell? Just curious, because like you mentioned, it sounds pretty progressive (I think I might be having a case of vet envy!).

Jordan's symptoms are not entirely consistent with the story you've told, but there are enough similarities that it at least gives me another avenue to pursue in the event that we hit another brick wall after his next round of thyroid testing. Please do keep us posted on your progress. I hope he (what's his name?) continues to do well on these meds.

Again, thank you!!
Best,
Jenn

[arockkid]

http://s28.photobucket.com/albums/c223/arockkid/?action=view&current=ollie2.jpgI know it was the ACTH stim test....I just wasn't sure if I got the letters in the right order ;) I do not know the actual results, just that it was shown there was no Cushing's. He also has dilute urine, but can concentrate it, via a water deprivation tests.

The cysts are all about dime sized, none were aspirated, but the one on his back that burst was larger, and I can tell you what came out was gray nastiness.

I had attributed them to just him getting old and lumpy, as lots of dogs get them, but it is pretty common with the nonfunctional tumors.

His name is Ollie, and he's awesome.
http://i28.photobucket.com/albums/c223/arockkid/ollie2.jpg

[labblab]

AWWWW, Ollie is such a handsome boy!!! Leslie, thank you so much for all this additional time and info that you have been sharing with us. Like Jenn, I've had no trouble at all with following what you've written. And it is all enormously interesting and helpful. As I've said earlier, you've opened up a whole new door for us here! I hope so much that you'll remain with us throughout the course of Ollie's journey so that we can share in the learning and most importantly, join together in support of your wonderful boy.

Marianne

[Somesie]

Ha! What a good lookin' dude! He looks like a friend that Barkley and Jordan used to play with when we lived in SC - her name was Angel and she was such a doll!

Thanks for the additional info about the cysts...and yeah, that does sound gross! Interesting, though. Jordan's are such that I can't imagine one actually bursting - it's underneath the skin deep enough that I can't imagine how it'd get through. So, maybe it's not the same thing. Who knows?

Regardless, thanks for the info. Please do stick around here and keep us posted! I hope Ollie continues to improve on the meds you're using, and that surgery won't be necessary. Give the little man (I know he's not little...neither is Jordan, but I call him that anyway, too) a scritch between the ears for me, and be well...the both of you!

Best,
Jenn

[arockkid]

The one that burst I would NEVER have imagine would come through the skin....it was deep....and the hole it left was disgusting.

[Somesie]

You crack me up. We seem to have similar sensibilities regarding the gross-out aspect of some of this stuff! I think I might have them aspirate one of Jordan's when we take him in for his thyroid check. I had the other vet do a couple of them, but at this point I don't trust anything she did on him, due to all the mistakes I now know she made.

I shall keep you apprised if anything icky comes about! :p

Best,
Jenn

[arockkid]

I decided, for Jenn, to list a few more symptoms I could think of, that might help to see if it is similar.

His eyes got clouded up, which was attributed to slightly raised cholestorol, and his third eyelid on one side started to partially cover his eye, due to pressure on the optic nerve, I believe....I forgot these, as they are nearly resolved on the new meds!

He also developed a weird sporadic cough, very dry-sounding, and it'd be just one or two coughs, maybe hourly....again, resolved!

The nausea was pretty intense, and his mouth always dripped drool (I also have a neapolitan mastiff....one drooly dog is more than enough for me)....and he'd leave wet spots wherever he was sleeping, and also began getting car sick. Not anymore! I also think this was seriously affecting his appetite, it was like he kinda wanted to eat, but then would just delicately pick at his food, and even treats....so much that our vet also checked his teeth thinking maybe he just had an abcess or something.

I tried to find a pic on my phone of the hole that was left after the cyst burst, but I think it's on my old phone....it was about the size of a quarter and probably at least a half inch deep.

He had about 10 or so of these, and as of yesterday, with a thorough pat-down, I could only find two! And their size seemed reduced as well.

I am not working with Cornell, even though they were great with the MRI, and we were there two days, they gave me very little information as to the next step, barely knew about Cyberknife, and nothing about Dr. Bruyette and his surgical approach. Just gave me the gabapentin and sent me home.

Luckily, our hometown vet is a friend of mine, and jumps through hoops for us (though I know she does this for EVERYONE....I don't know if she EVER sleeps)...

She is very into holistic approaches, accupuncture, herbs, etc., but also uses her resources to look into every strange case (like Ollie) that she may not be totally familiar with.

I'm sure, if you were interested in speaking with her, she wouldn't mind me giving you her info...she may be more coherent in explaining the meds Ollie is on. Then maybe you can explain it back to me :)

[Somesie]

OK, it's official: I have vet envy. ;)

It's really interesting to see the list of symptoms and how they've improved with just these medications. So, if he stays at this level of improvement, or gets even better, do you just sort of back-burner the idea of surgery? Or is there a specific thing you're waiting on seeing, to know whether surgery is a preferred avenue to pursue? Just curious. Ollie's case is really interesting, even if it doesn't end up relating to Jordan.

Speaking of which...it seems like he has the cysts in common, but not a lot else. His cholesterol wasn't elevated in any of our blood tests, and his appetite is the typical voracious Cushing's variety. He does sort of have a weird cough every now and again, but I've attributed that to acid reflux more than anything. Still, you never know. After we get his thyroid tested (not until 11 June now, Dr is on holiday :mad:), we'll see where we go from there.

I lived right across the street from Delaware Park for a few years, btw, and Buffalo is one of my favorite cities - I have quite fond memories of my time there. Spot Coffee still around? I was a regular there!

Thanks again, Leslie. This is both helpful, and interesting!

Best,
Jenn

[arockkid]

The last week has been a whirlwind....we leave for Yonkers today, and start Ollie's Cyberknife Tuesday....

He's still acting fine, but after talking to Dr. Bruyette about surgery, and that even with that there is a good chance of recurrence, and given a 3-month prognosis, I got the show on the road.

Wish us luck!

[labblab]

So you've decided on cyberknife, after all? Earlier it sounded as though you had ruled that out as an option... Which facility will be performing the procedure?

Most definitely, you'll have a ton of us riding along with you "in spirit" on Tuesday!!! I so hope you'll have access to a computer so you'll be able to report on your progress. Sending tons of well wishes and prayers both to Ollie and to you!

Marianne

[Squirt's Mom]

Most definitely, the k9cushings Angels will be hovering over the both of you as well as Ollie's medical team. Do keep in touch as you can and let us know how things are going. Our very best wishes go with you Tuesday.

Hugs,
Leslie and the gang

[Somesie]

Good luck to you today! I hope all goes well! Keep us posted when you get a chance...we'll be thinking of you.

Jenn & Co

[Squirt's Mom]

Thinking of you and Ollie today. Our thoughts and prayers remain with all.

Big hugs,
Leslie and the gang

[arockkid]

I'm here! And bare with the typos....I only have my phone with me.
Like I said, it was a whirlwind and I don't know if dr. b was trying to scare me or what but basically didn't believe the meds could help him and when he gave me a 3 month prognosis...I knew that wasn't enough....so even though I had said I didn't want to just buy him some time....I am too selfish to let him go in three months!
In hindsight I think that might just be what he tells everyone because he gave another dog on here the same prognosis....though the tumor was larger and it was a yorkie. So...whatever.
The cyberknife is in Yonkers....about a seven hour drive for us....and it happened so fast because one of the docs is going on vacation next week for a few Weeks. I didn't want to waste another month waiting while he got worse.
The good news! His tumor was imaged again and seemed just about the same size..he also said his lack of any neurological symptoms make him the best case scenario as far as candidates for the surgery. I tools him his was a healthy dog!

So we are done with day 1 of four. The gold seeds are implanted and the rest should be a cakewalk. We are going back to the hotel shortly to RELAX!

The bad news? Yonkers smells like hot garbage and i'm pretty sure someone thought I was a hooker.

[Somesie]

So glad to hear that things are moving in a positive direction! Aside from the stench and 'mistaken identity,' that is! (Good to see, also, that you're able to keep your sense of humor!)

Hope you are all able to relax and rest in the hotel, and that the next few days go as well as today did. Forgive my ignorance...but is this procedure such that they will actually be able to tell by the end of it, with another image, if the tumor has shrunk? How do they measure success, I guess, is what I'm asking?

Keep us posted! Jordan and Barkley are sending sloppy Boxer smooches, as always, and I will keep y'all in my thoughts!!

Jenn

[Squirt's Mom]

Sounds good so far stink and all! BTW, are there really hookers in Yonkers???? :p

[Somesie]

I hope everything went well and things are looking up for you and Ollie! Just wanted you to know I'm thinking of you.

Jenn

[arockkid]

Sorry I've been a slacker since we've been home....just playing lots of catch up and enjoying the weather.

First, the answer to the question 'how do they figure out if it works"...they don't do another image, as that is way too soon to see any results. In an ideal world, he'd have another MRI in six months. By ideal, I mean ideal to the research world....not my bank account. And since the results won't make much difference to his well-being, we'll probably not do it.

Now, Ollie. I'll annoy you with him giving me a run for my money on our last day of treatment (go in on an empty stomach for anesthesia)....well....put a dog on high doses of steroids for a few days, leave a half a pizza in the hotel room while you go make a cup of coffee and come back and see what happens! They went through with it anyway, just monitored him more closely.

The total treatment cost ended up being $7800 for the Cyberknife, and as far as I know this place in Yonkers is the only place in the WORLD that does it on animals, and one of the people that performs it has been using the machine for YEARS AND YEARS on humans and let me know I was doing the best possible thing.

He handled every day like a champ and even went to Times Square for some good photo ops (plus, I had to bring my daughter back something from the Disney Store)...

We've been home for 2 weeks, and he is down to one prednisone tablet every other day (remember, he was on about 12 pills a day before we left). And I know I kept saying he was his normal self before we did this, but every day he has been getting closer and closer to his REAL normal self. He is up and around all day, and if he is sleeping, he's cuddling on the couch with us instead of heading to bed upstairs. He is eating ravenously, his eyes are SOOO big and bright!

And my two favorite weird markers of things he used to love to do and hasn't done in over 6 months.....the first is a weird quirk where he loves to eat his toenails. And not just his, but my other two dogs, too. Like, I clip them and he crunches them like disgusting little popcorn kernels. BUT, it's his thing! And he does it again!

The better one was that yesterday we went on our first hike again....our first REAL hike in a LONG time, to the lake...He hiked, he chased fish, and best of all went after his all time favorite thing...skipping stones. I nearly cried, and kept telling my husband "Worth every penny!"

I'll try and keep you more up to date on him now....the next thing I'm hoping is that he gets back his thick soft coat....but obviously that'd take a little more time.

Thanks for thinking of us, guys!

[Squirt's Mom]

What a wonderful update! :) I am so, so glad to read that Ollie is doing so well with his recovery AND that you are seeing some of his traits you so love coming back. I will never forget Squirt picking up a toy to play with for the first time in years after we started her on the Lysodren - so I understand the pure, consuming joy you felt watching Ollie chase stones. I am so happy for you all!

Please do stay in touch - not only are you part of our family and we want to know how he is doing but you can teach us "old dogs" a thing or two about this surgical approach Ollie underwent. ;)

Hugs,
Leslie and the gang

[Somesie]

Wooooo hooooo!!!! Such excellent news! I hope the trend continues! Best to you both...enjoy the summer!!

Jenn