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View Full Version : Nellie-newly diagnosed cushings (adrenal tumor, trilostane treatment)



nelliesmom
08-15-2009, 10:15 PM
I just found your site. Everyone seems to be so helpful & supportive. My Nellie was just diagnosed with an adrenal tumor & is taking Trilostane. She is on day 4 & not yet showing any changes. Any ideas on how long it will take?

Roxee's Dad
08-15-2009, 10:36 PM
Hi Nellie's Mom,
I'm sorry that Nellie was diagnosed with cushings but I am glad you found us.
You will recieve alot of help here but we do tend to ask alot of questions.

What were the circumstances that led to the cushings diagnosis? What test were performed? Do you have the results of the test and could you post them?

The others as I affectionately call them will be along to help you sort thru this. Looking forward to hearing more about Nellie and her diagnosis.

BTW can you tell us more about Nellie? Age, weight, breed, mg's of Trilostane etc...

PS - Did your vet tell you what signs to look for while you are treating with the Trilostane and when Nellie should be going back for a follow up ACTH stim test?

frijole
08-16-2009, 12:09 PM
Welcome from me as well. There is tons to learn about this disease. I will link you to our resources section. You might start with the intro thread for new members then read a bit on adrenal cushings as well as trilo.

http://www.k9cushings.com/forum/forumdisplay.php?f=10

Did your vet do an ultrasound? Did he/she discuss surgery as an option? Tell us as much as you can about Nellie's story. We are eager to learn. :p Glad you found us. Kim

SaxLady
08-16-2009, 02:43 PM
Hi NelliesMom,
It's generally not advised for a dog with an adrenal tumor to be treated with Trilostane. It can cause an increase in the hormones that were responsible for creating the tumor in the first place. This is what happened to my little Dixie, Katrina. She just had adrenal surgery on July 28th to remove the tumor. If surgery won't be done, Lysodren would be indicated as a treatment.
How was Nellie's tumor found? Was a ACTH done? Did she have an ultrasound on a high resolution machine? How large is the tumor? Did Nellie have blood drawn for an Adrenal Panel to be sent to doctor Oliver at the University of Tennessee? The people on this site are very knowledgeable. Please post all your furbabies test results so we can help.
Hugs and a heart welcome!
Candy, Katrina, Joe and Heidi

gpgscott
08-16-2009, 02:51 PM
Hi NelliesMom,
It's generally not advised for a dog with an adrenal tumor to be treated with Trilostane. It can cause an increase in the hormones that were responsible for creating the tumor in the first place. Candy, Katrina, Joe and Heidi


Welcome to Nellie and her mom.

I just need to clarify this point a bit.

Elevated hormones do not cause an adrenal tumor, an adrenal tumor causes elevated hormones. There is a school of thought that medical treatment of adrenal tumors is better accomplished using Lysodren. This is due to the fact that Lysodren actually errodes a portion of the adrenal glands and by doing so may shrink the tumor.

Adrenal tumors can be cancerous or benign and in both cases can involve major blood supply networks.

We have a number of members who have had successful surgeries to address this form of the disease.

As has been asked please let us know more of Nellie's general history, age, breed, wt. symtoms etc... and all of the tests and results.

Best wishes. Looking forward to hearing more. Scott

nelliesmom
08-16-2009, 09:49 PM
Thank you all so much for your info. We think Nellie is a corgi mix. She is 8 yrs old & now weighs 35 lbs, down 3 in 3 mos. Her case seems to be unsual because she had a rapid onset of symptoms. The week of 7/8, we noticed she seemed to always be hungry. Also, one of our dogs was wetting in the house, we just didn't know which one at the time. The next week, she was drinking about 1 1/2-2 gallons of water a day & wetting 4-5 times a night plus whetever she did during the day in the house-which she never did before. I took her to the vet thinking she may have diabetes. The vet did a bloodwork & ua. UA was fine, ALB was 4.1; ALT-294; ALKP-1455; CHOL-338; HGB-19.6. Everything else was normal. The vet supected cushings & sent me to another because he wasn't very familiar with it. One week later, this one did a LDDS, CBC & Xrays. LDDS baseline was 8; 4 hrs-11.8 & 8 hrs-10.1. AST-75; ALT-505; ALKP-2534; GGTP-39; SODIUM-138; CHOL-417; TRIGL-337. X-ray showed large liver. Then we brought in an internist who did an ultrasound which showed a tumor on the right adrenal gland-about half the size of the gland, but the other was normal size. This led the internist to believe she has both adrenal & pitutary cushings. Because of this, she felt trilostane would be the better choice. Also, the kidneys & liver appeared normal (except for being large). As for surgery, we are not able to afford surgery now. I lost a job & we've cut expenses as much as we can. We have already spent $1300.00 figuring this out & her meds will be close to $100.00 a month. Thanks again! Mary

Roxee's Dad
08-16-2009, 10:17 PM
Hi Nelliesmom,
Thank you for posting that information. I was wondering if an ACTH stim test was done previous to administering the Trilo. This test is usually performed to monitor cortisol levels and used to adjust the trilo dosage so Nellie cortisol doesn't go to low.

What is the dosage of Trilo you are giving Nellie?

Regarding symptoms, you may see Nellie's apetite and excessive thirst start to decrease within approx 10 days. Could be more or less as no 2 dogs are the same.There should be another ACTH stim test already scheduled to check Nellies progress. It is very important that her cortisol doesn't go too low which could result in an addisonian episode which if not treated quickly and properly could have fatal results. Most of the time just stopping treatment will bring her cortisol back up but you have to know what symptoms to watch for. Did your vet give you any pred in case she does go too low?

Here is a quick link in our resources section for treatment with Trilostane:
http://www.k9cushings.com/forum/showthread.php?t=231

Vetoryl (Trilostane) Website with treatment and monitoring information:
http://www.dechra-us.com/File/vetoryl_Treatment_and_Monitoring_Flowchart.pdf

We are here to help, the others with much more experience than I will be along. Weekends can sometimes be kinda slow, so keep checking in.

nelliesmom
08-16-2009, 10:36 PM
Thanks John, Nellie is scheduled for an ACTH stim test in 2 weeks. She did not have one before starting treatment. My vet did give us pred to have on hand if she developed symptoms over night or over weekend so we would not have to go to an ER vet. She is on 60mg a day of trilo. He is more familiar with Lysodren-has prescribed it often. I guess since Trilo is so new in the US market, he researched it because the internist recommended it & changed his mind to use it instead for Nellie. He seems to think the main thing to watch for in checking progress of treatment, is a change in the verocity of appetite. Has anyone else experienced the rapid onset of symptoms that Nellie has??? Maybe this doesn't bode well for the tumor.
Mary

Roxee's Dad
08-16-2009, 10:53 PM
Hi Mary,
Just a quick note. Many here get there meds from an on line pharmacy. Diamondback seems to be used quite frequently. Are you using the Vetoryl brand or a compounded Trilo. I would guess if your using 60 mg it is probably the Vetoryl brand.

AlisonandMia
08-16-2009, 11:18 PM
Hi Mary,

I would be worried (like you are) that the rapid onset of symptoms may mean that the tumor has got going pretty rapidly and so could be quite aggressive - although that may not be the case. It is possible, I think, that the reason that the other adrenal is normal sized is that it may not have had time to shrink yet rather than necessarily that she also has pituitary Cushing's. I believe that the non-affected gland shrinking is something that takes place over time and is caused by the large amount of cortisol being produced by the tumor suppressing the other gland and it shrinking as a result of the principle of "use it or lose it". Are any follow-up ultrasounds planned to see how it is going? That may give you a good idea of what to expect.

My dog had pituitary Cushing's and her Cushing's seemed to be of fairly rapid onset compared to many, too. It is something that seems to vary and may depend as much as anything on perception - how much particular symptoms bothers you and the dog rather than how rapidly the disease actually got going. Some dogs just seem to have some symptoms more severely than others, too - a dog that has a big problem with urination and thirst and/or voracious appetite will seem "worse" than one that is more lethargic and weak and a little pot bellied and "old looking" but is only drinking and eating a bit more than usual. Both may be equally as "sick" but one has far more noticeable and problematic symptoms than the other.

Lysodren is the traditional treatment for adrenal tumors as it can (if the tumor is the right sort) actually shrink the tumor, or at least inhibit its growth and it also helps to reduce the amount of hormones that the tumor produces. The other reason that Lysodren is often preferable to Trilostane with adrenal tumors is that a great many adrenal tumors not only over produce cortisol but also other steroid hormones and, unfortunately, Trilostane can actually increase the levels of these hormones as it reduces cortisol - so the symptoms can continue or even worsen. Some tumors are not particularly responsive to Lysodren however - it must depend on the type of cells making up the tumor although most seem to respond well. Another drug called Ketoconozole is sometimes used to give symptom relief with adrenal tumors. Like Trilostane it doesn't do anything to the actual tumor but it does have the advantage of lowering the level of all the steroid hormones rather than lowering some and raising the level of others. It does have some drawbacks that neither Lysodren or Trilostane has in that it can be tough on the liver and in some cases it is not well absorbed so isn't always effective.

Treatment with any drug is aimed at improving quality of life rather than curing the condition and it is first and foremost a matter of getting good symptom management - hopefully Trilostane works well for Nellie.

Good luck and keep us posted.

Alison

gpgscott
08-17-2009, 10:55 AM
Hi Mary,

It sounds like you have been through a very thourough diagnosis, the only thing I see missing is a full adrenal panel.

The panel done at UTK (university of Tennessee@Knoxville) is the only way to know if hormones other than cortisol are out of range. We have a member Ken, who's pup Shiloh, had successful adrenalectomy over two years ago. He has stayed in close contact with the treating Drs.. Some of the things Ken has told me about a medical treatment of adrenal Cushing's are;

" to give the adrenal dog the best chance to relieve the symptoms and return to a good quality of life, the full adrenal panel is essential. At any given time, my surgeon and his in-house internist are treating about five dogs medically for adrenal tumors. They always do the ACTH/adrenal panel before starting treatment and usually (I think) at least once during the treatment. Actually, my surgeon told me there are 4-5 different things they look at before deciding which medicine is best for a particular dog. But I'm pretty sure the situation with the intermediate hormones is at or very near the top of the list."

I agree with Alison that the rapid onset combined with the U/S make this look like an agressive tumor.

Very best to you and Nellie. Scott

Buffaloe
08-17-2009, 08:39 PM
Hi Mary,

I'm sorry Nellie has an adrenal tumor. My dog had a very large adrenal tumor in her left gland surgically removed almost three years ago and is doing real well. I completely understand your decision not to have an adrenalectomy. Tumors in the right gland are certainly more difficult to remove.

It is very common for the unaffected adrenal gland to be of normal size and shape. Shiloh's right gland was of normal size and shape and she had her tumor for a long time. Just because Nellie's left gland is normal size, that does not point toward a diagnosis of pituitary cushing's in any way, shape or form.

The lessening in appetite is the #1 thing to look for when medically treating an adrenal tumor. You also want to watch for her drinking less water and signs of increased lethargy. These are all signs she has had too much Trilostane. Adrenal tumors often need higher doses of Trilostane or Lysodren and/or for longer periods of time than pituitary tumors. It may take a while before you see any changes in Nellie but keep your eyes on her.

Many internists prefer Trilostane over Lysodren for adrenal tumors and many prefer Lysodren over Trilostane. Many people in your position try one and if it doesn't seem to be improving the symptoms, go to the other after a wash out period.

At some point, I strongly encourage you to have the ACTH/full adrenal panel done at the U. of Tennessee. It's not that big of a deal. The only downside is that it takes 8-10 days to get the test results and it costs a little more than a straight ACTH test, maybe $50-$75 more. Not much. This is a little tricky but most adrenal tumors secrete excessive amounts of some of the intermediate (sex) hormones. These are not good and can be very bad for the dog. Long term use of Trilostane has been shown to increase some of these intermediate hormones whereas Lysodren will decrease most of them. There are 5 of these intermediate hormones. If Nellie is secreting excesses of some of them, that would be a significant factor in taking a good look at using Lysodren.

Now I'm going to take it a step further. One of the 5 hormones is called aldosterone. If the adrenal tumor is producing excessive amounts of aldosterone the dog will suffer from hypertension and electrolyte imbalances (low potassium and high sodium). Low amounts of potassium can be really bad for a dog, as is hypertension, of course. Neither Lysodren nor Trilostane will effect aldosterone. But, a drug called spironolactone will very effectively counter-act the damaging effects of the high aldosterone. I'm sure there are so many dogs out there suffering terribly from high aldosterone when all they need to do is take the above named anti-aldosterone drug. Hey, I told you it is a little tricky. But all you need to do is have the ACTH/full adrenal panel done (at some point) and then work with somebody who really knows about medically treating adrenal tumors.

You have done a great job with Nellie. You went above and beyond in your diagnostic process and you have her on Trilostane. But I hope you will consider having the adrenal panel done, then you will really know what you are dealing with. Good luck to you and Nellie.

Ken

nelliesmom
08-17-2009, 10:26 PM
Thanks to all of you! You've given me alot to think about. I will be talking to Nellie's Dr. soon & will address the full panel with him to see what he thinks. He seems to be very open to hearing my input & encourages me to educate myself. I will keep you updated!
Mary

nelliesmom
08-26-2009, 09:56 PM
Update on Nellie....After 2 weeks on Trilo, Nellie is eating & drinking normally again (also not urinating in the house!!!:D). It kind-of lulls you into thinking maybe she is ok after all, maybe she really isn't sick. Then you really think about it & know that a tumor doesn't just disappear! I have to make the appointment for her next ACTH test next week, so I guess we will see where we stand. I will let you know when we get the results.

Roxee's Dad
08-26-2009, 10:16 PM
Hi Mary,
Very happy that you are seeing improvements in Nellie. I'll bet she is happier too.:)

Just wondering if you still plan to discuss the UTK panel with your vet. It would be a good idea to at least get the discussion on the table in case the trilo eventually does raises some of the other hormones secreted by the adreanals and is often raised as a result of trilo.

wishing you and Nellie well in the ACTH stim testing. Hope she passes with flying colors.:)

Buffaloe
08-27-2009, 01:09 AM
Mary,

That is great news that the Trilostane is alleviating Nellie's cushing's symptoms. Thanks for letting us know.

Of all the adrenal dogs treated medically in the three years I've been on this website, the one who lived the longest was treated with Trilostane. Her name was Lottie and she lived about 1 1/2 years after her diagnosis of an adrenal tumor.

Yes, the tumor is still there (probably) but who is to say it's not going into remission or some such thing. You just never know....and hope and faith go a long way.

Ken

nelliesmom
08-27-2009, 10:32 PM
John, yes I do plan to discuss further testing with my vet. I tried to copy & print one of the above posts to take with me but it started printing all posts so I am going to copy & paste to a word document so that I will make sense to the vet.

Ken, thanks for the reminder that miracles do happen! Nellie does seem happier. She is still panting & I need to research trilo side effects because she seems to sometimes be a little weak in her hindquarters. Any info on that?

Thanks for the support!
Mary

AlisonandMia
08-27-2009, 10:44 PM
The two most likely reasons for the hindquarter weakness are either that the dose is a tad high and her cortisol is a little too low or that her cortisol is not actually too low but that she has got used to having a very high level of cortisol and now it has been lowered to a more healthy level she is feeling a bit of "cortisol withdrawal". The only way to be absolutely sure is to do a stim test and check the electrolytes.

I think you should mention this to your vet ASAP as, if her cortisol is actually going too low, then it is likely that it will continue to drop and could well go dangerously low in the next few days. Do you notice the weakness is worse at any time of day and, if so, how does this relate to the timing of the dose?

Alison

nelliesmom
08-27-2009, 10:57 PM
Alison,
It seems to be more noticeable when she jumps on or off the bed. She can jump up but seems to think she can't. Before she started treatment, sometimes she couldn't quite make it up. When she jumps down, sometimes it looks like her leg may give way a little. It's one of those things that you wonder if it's really happening or if you are imagining it?

I've been keeping a close watch on how she is eating. I also have presnisone on hand to give her if she does seem to go too far down. Of course, I would always call her vet first! He gave me his cell # to call after hrs if necessary. I think I will call him tomorrow.

Thanks! Mary

Buffaloe
08-28-2009, 12:28 AM
Hi Mary,

I just noticed that Nellie is only eight years old! And she is a beautiful girl. I really think she may very well live and live very well for many years with the good medical treatment you are providing for her.

I absolutely believe miracles do happen. How many times have we heard of someone diagnosed with terminal cancer, given 3-6 months to live and then they're doing great five years later?

The weakness in the hind legs is most likely due to her decreased cortisol level. That is pretty common. Just really watch for signs of decreased appetite, decreased water consumption and increased lethargy. Those are the signs that she's had a little too much Trilostane. I've never used Trilostane but if you are in doubt, IMO, there's nothing wrong with witholding a dose. You don't want Nellie's cortisol to go too low, that opens up a whole new can of worms.

That's really good that you will be having the ACTH test soon. Shiloh is almost 15 and I get her in my pool (in Phoenix...hot), hold her and make her doggy paddle to exercise her leg muscles. She doesn't like it but I think it keeps her legs strong with no impact. All the best.

Ken

nelliesmom
08-28-2009, 11:22 AM
OK, so I was just reading a post on another member's pet & realized that my baby was doing the same thing!!! Panting, licking & swallowing during the night!!! Drives my husband nuts, I can tune it out but he can't seem to.

Nellie gets her 60mg dose of trilo in the AM. Should I discuss breaking it up into AM & PM dosing with her vet? She weighs 35 lbs &, so far, is improving on that dose.

I love the info I get on this site!!!:)

Squirt's Mom
08-28-2009, 11:46 AM
Hi Mary,

We have seen several Trilo pups here that experience a sort of withdrawal from the cortisol soon after dosing has begun. Trilo seem to lower the cortisol very quickly at first for some pups, and this could easily be what Nellie is experiencing. Like Alison said, it isn't a case of the cortisol getting too low, but rather the body reacting to the suddenly lower level. You should see this start to improve as she in on the Trilo a bit longer, however, if it seems to continue to worsen, then you might want to call your vet and check her level just to be on the safe side that the dose isn't too high for her. All pups are different and each one writes it's own book on treatment, so just keep on watching her closely as you are.

When Squirt does that licking thing at nite, it is usually due to a bit of nausea which a light snack and Pepcid or Tagamet take care of. Some pups, like some humans, just have more digestive issues at nite...something I understand. :rolleyes:;) And she seems to have more panting episodes at nite.

You're doing a great job, Mary, so keep up the good work!
Hugs,
Leslie and the girls

nelliesmom
08-29-2009, 12:31 PM
I have a call in to the vet but I need reassurance while waiting for a call back!

Nellie seems to be having weakness on her left side. This AM she fell down the stairs (we are out of town & the steps are more narrow than ours at home). She is walking fine but something just isn't right. Does anyone know if this may be an overdose of trilo?

Squirt's Mom
08-29-2009, 03:19 PM
Hi Mary,

Usually weakness due to the treatment dose being too high or cortisol falling too low, is in both sides, tho I guess it is possible it could show on one side only. Weakness on one side only led me to think stroke first. Is it in both front and back legs on that side? Does she show any other signs like walking to one side, holding her head to one side, or circling? Any confusion?

Please let us know what the vet has to say!

Hugs and prayers,
Leslie and the girls

nelliesmom
09-01-2009, 10:34 PM
I talked to the vet & he is at a conference until Thursday. He said from what I describe, it sounds like Nellie has the canine version of vertigo. She acts okay & it doesn't seem to bother her that she sometimes doesn't run straight or falls down. I will be curious to see what he says when he examines her on Thursday!

AlisonandMia
09-01-2009, 10:37 PM
Is she carrying her head tilted to one side? This usually happens when they are having balance problems.

Alison

nelliesmom
09-01-2009, 10:48 PM
She is; that is why the vet decided it was balance. He had me check to see if her eyes were flickering-they weren't.

nelliesmom
09-03-2009, 09:45 PM
We saw the vet today for the acth stim test. We should have those results in a couple of days.

After doing several basic tests, Dr Epstein determined thet Nellie's other symptoms are neurological. She actually has very little feeling in the left side of her face. She cannot blink her eyelid and her ear droops down. We have to make an appointment with another specialist! :(

He was also concerned about some bruising on her belly. (I assumed it was from falling down the stairs on Sat, & it still could be) He did a stat CBC so we should have those results tomorrow.

I told Dr Epstein about this site and he was impressed with the depth of knowledge here & likes the fact that it is moderated so that information is accurate!:p

Squirt's Mom
09-04-2009, 11:08 AM
Hi Mary,

Please keep in touch and let us know how Nellie is doing and what the specialist has to say...and of course the CBC and ACTH results when you get them. We want to know all about Nellie...and we're getting to know you well enough now that we can start to get a bit nosy about you as well! :p

Keeping you both in my thoughts and prayers,
Leslie and the girls

nelliesmom
09-09-2009, 10:01 PM
Hello all! Nellie had her first ACTH stim test and the results were "satisfactory" according to her vet. First number was 3.9 and after 1 hour it was 8.8. When she was first diagnosed, they were 11-12. He would have preferred it to be lower but said we will leave her meds the same for now.

Her CBC came back completely normal. :D The bruising must have been from her fall.

Regarding her neuro symptoms: After much soul searching & discussion with my husband, we've decided to hold off on any consult for now. It doesn't make much difference because almost anything they could tell us would not be good & we couldn't do anything about it. She seems to be improving in some ways & we felt the limited resourses we have would be best spent on managing her cushings.
Please keep her in your prayers.

Thanks to all!
Mary

PS Leslie, You can be as nosy as you want. I tend to tell more than people really want to know anyway!

We have one other dog, Fraley. She is a 12 yr old rat terrier who is spoiled rotten. We have 3 "grand-dogs" who came to visit this past weekend. One is a 101 lb rottie pup, one a beagle & the other is a beagle-bassett mix. I love them all but I was very glad to see Mon come-haha.

Buffaloe
09-10-2009, 08:38 PM
Hi Mary,

I understand your decision to hold off on the consultation about Nellie's neurological symptoms. 'Nothing wrong with that. You are doing alot for Nellie as it is.

I suspect that post # of 8.8 may work its way down some more with additional time on the Trilostane. It has already dropped significantly. :)

These dogs go with the flow so well, Nellie's balance problems probably don't bother her much at all. She is a beautiful, beautiful girl.

Ken

Harley PoMMom
09-10-2009, 08:58 PM
Hi Mary,

I agree with Ken about the Trilostane bringing that 8.8 down more with time...so just keep an eye on Nellie so that she doesn't go too low...which we know you will, you're such a good mom. :)


Her CBC came back completely normal.YOOHOO!!

I understand too about holding off on the consult for now, this cushing disease can get pretty costly and time consuming in itself. One thing a at time.

Give Nellie and Fraley a gentle belly rub from Harley and me and of course we will keep you all in our thoughts and prayers.

Love and hugs.
Lori