Skippy has passed; 12 y/o Yorkie with likely pituitary tumor (Trilostane)

Welcome back, Carole, and thanks so much for this update. I'm glad to know that you are seeing improvement in Skippy's thirst and urination. Unfortunately, improvements in some of the other symptoms such as skin, coat, muscle weakness, etc. usually take a significantly longer time, even when cortisol levels are optimal. I tell you this, actually in the hope of offering encouragement. I know how upsetting and frustrating it is to await positive changes, but I want to reassure you that it is not abnormal to have to await some of these improvements. It doesn't mean the medication is not working, just that it will take some time.

Having said that, I am thinking you could ask to push up the date of Skippy's next monitoring ACTH if you are feeling really impatient about his results. It looks as though Purdue is waiting for a full 30 days after the first monitoring test (which was done at the two-week mark). Perhaps they feel this will give Skippy a better chance to stabilize on his current dose before assessing the need for a dosing change. But many clinicians follow Dechra's published recommendation to retest when the first 30 days of treatment has been completed. So that would be in just one more week for Skippy.

Personally, I might go ahead and wait until the 23rd myself, especially since you are indeed seeing some outward improvements. But I just wanted to mention retesting sooner as an option for you to consider if you become too worried about some of Skippy's symptoms.

Either way, we'll remain anxious to read your updates!
Marianne

P.S. You'll see I've edited your thread title to reflect Purdue's revised diagnosis and Skippy's treatment. ;)

Thanks Marianne, I am going to wait until the 23rd for the second ACTH test. I just read some research out ofa Davis study that said they used a standard of a 5 or less cortisol level as their standard for effective treatment' I think waiting longer will secure a more accurate assessment of how Skippy is responding to the 20 mg Trilostane.

I am concerned about the tumor on his anus as it began bleeding again last night. I have been treating it as if it is a wound but it does not seem to be healing. (Maybe the Cushings is causing slow healing.) He really, really doesn't want me to touch it so I'm spraying with a medication that is supposed to be healing and non-stinging. If anyone else has experienced the anal tumor condition, that was determined to be Cushings related, I would welcome hearing more about your experience. Purdue said that external anal tumors are common in non castrated males, but Skippy is castrated. They suggested that treating the Cushings might shrink the tumor.

Anyway, again and simply, thank you for sharing your knowledge, experience and support.

Hello Carole. high cortisol can cause healing to be slower. I don't know that I've ever heard of a tumor shrinking as cortisol gets to more optimal levels. What it does do is make it better for surgery to remove the tumor, which is probably what will need to happen. This is just a guess on my part and is something that you should probably discuss with the vet. Any risks to having it removed, etc. Did they biopsy it to confirm it is benign? I think I would want to know for sure.
I think that we are thinking the same thing, that bleeding tumors are not good and cannot be comfortable and there is a high risk of infection due to the location and fecal matter getting into the tumor.

In reading through the threads I observed that many of us are struggling with the lack of improvement in symptoms after beginning Trilostane treatment. After 35 days of twice daily treatment with 20mg of the drug, Skippy continues to show minimal improvement. While peeing/drinking are reduced, all of the other symptoms, lethargy, bloating, trembling, hair loss, weakness in his back legs are unchanged. It would be wonderful to hear from others of you whose dogs have responded/or not to treatment. When did you begin to see changes? Are some of the symptoms permanent? What kind of quality of life does/did your dog have? I feel like I am torturing Skippy right now. This drug must work for some dogs or everyone would not continue to subject their dogs to it. Thanks in advance for your feedback.

Hello! :) My dog has probably been on vetoryl for 5-6 months. I have not noticed much change at all in his belly, but one doctor told me in his experience their bellies dont reduce in size much, if at all, and another told me it takes time and is different with each dog. He has continued to lose hair. He is pretty lethargic as well. His legs will sometimes tremble as well and there does seem to be muscle loss. At times, I wonder what I'm spending so much money on medicine and testing for...however, I know it's the right thing to do. He's had very good ACTH numbers so he is responding to the medicine well. It's just kind of disheartening. I know I should probably get diabetes and thyroid testing (but those were fine when we last got him tested for it), but I don't have the money.

I want to add that hes either 14 or 15+. I think a lot of this has to do with age. Probably slower recovery just like a person since he's older and also just general decline in health. Not to say that he's not happy; I truly believe he is. He plays and eats and drinks and does all the stuff he is supposed to do, but I sometimes have to remind myself he is a very old dog and it can't all be because of the Cushings. Sorry for the disjointed thoughts! I just wanted to chime in because you asked and give my perspective. It's a long, weird, uncertain journey, but you've taken the right steps and are doing everything you can. I'm praying for you and your dog and hoping for the best! :)

My dog never lost her belly, she always had a round, rubbably belly. Her rear leg weakness never really got better either, but we adjusted by putting doggie steps up to the window seat and lifting her to the couch when she wanted up and she'd bark if she needed a lift down. If she didn't feel up to a step, she'd stop in front of it and wait for her "lift" (yes she got to know that word well) and if she felt good, she bounce right up the stairs no problem.

I think that the adjustments we made for her gave her a good life for several more years and that the medication (she was on trilostane) helped too in that her liver didn't get worse. She managed to rule out world like the diva she was with no problem till the very end.

Hi Sharlene,
Thanks for replying to my questions. I posted in response to Jane and Jess and will post Skippy's numbers from the ACTH tests tomorrow. Purdue aspirated Skippy's perianal tumor in December - no biopsy. They suggested I just remove the thing then as it is likely benign. Today, they were suggesting that I consider Mitotane instead of Trilostane as it might "shrink" it. Also, the Resident was going to consult with their expert in-house at Purdue as she had not seen this problem. Their estimated fee for removal is a hefty $1,500 and the Resident said that if it were her dog she would want a Board Certified Surgeon to do the surgery. I must be brain dead as I had not considered the possibility of infection, duh! I will follow-up tomorrow. Thanks so much, Carole

Hi RandomGuy,
Your reply is very helpful to me and I thank you. Skippy just turned 12 and before diagnosis was very active, if not wild. I too wonder how much is age, maybe some neurological changes, etc. The suddenness of the changes in his personality and physical condition are startling and saddening. But at least you help me undestand what I may be up against. Thanks again, Carole

I would Only ever want a board certified surgeon, as there are risks with any surgery so anything that can lower the risks is good.

Skippy was seen on 1/23 and I finally received the results today. Also, I secured a copy of his 12/19 results. Here's the update:

12/19/16
Pre Test Cortisol - 2.2 (Reference range 1.0- 6.0) Marked Lipemia
Cortisol (1hr post) - 10.8 (Reference range 7.0 - 17) Moderate Lipemia, Slight Hemolysis

1/23/17
Pre Test Cortisol - 6.3
Cortisol (1hr post) - 16

I haven't actually spoken with the Dr.; the student relayed this info and as I expected they want to increase the Trilostane dose from 10mg morning and evening to 15mg morning and 10 in the evening. Additionally, we discussed the perianal adenoma at length. They think Skippy may have Atypical Cushings in addition to Pituitary Cushings and are offering to run a panel to assess. I have stated pretty firmly that I'm not prepared to switch Skippy to Mitotane at this point. So I asked if there are other treatments (in addition to surgery, which may lead to the return of the tumor) to address the Atypical symptoms. The student didn't know. In respect to the tumor bleeding and the possibility of infection, the best she could offer was that it is not currently infected. I did ask about supplementing Skippy with Lignans and Melatonin but she didn't know about that either.

Clinically, Skippy is barely improved by my assessment and greatly improved by theirs, mostly because of the reduction in PU/PD. He continues to be extremely lethargic, barely interacts and this morning refused to walk and ran back home in fear. Yesterday and several other times he turns around and falls down; he stares off in space sometimes like he is disoriented. Except for his ravenous appetite I could be a lamp post or fire hydrant.

I will schedule the surgery because I am terrified that the tumor will become infected. However, I feel that my interaction with the staff at Purdue is troubling. On Monday, I waited four hours to complete the Stem test; the vet was to call me yesterday with results, but no call; I called them at noon today and was told the vet would call me back shortly but that Skippy was "fine" . I called again late this afternoon and spoke with the student who couldn't answer many of my questions. They were supposed to have a surgeon look at Skippy's tumor on Monday; it didn't happen. I am losing confidence that they are sufficiently professional and knowledgeable about Cushings to appropriately treat Skippy and he continues to suffer. I know that they have senior staff there who are endocrinology experts but I don't know how to get to them. So frustrating and scary.

Molly, I get it about the Board Certified Surgeon. Skippy has enough problems! Thank you.