Experience in Lysodren or Trilostane? (for Jack Russell w/ Adrenal Cushings & Tumor)

[For Pete's Sake]

This is my first post...

Our 14.5 year old Jack Russell Terrier, Pete, was just diagnosed with Cushings, caused by an adrenal tumor. (First clues were an elevated platelet count and a UTI, a few months back, which was treated with antibiotic.) This time, we took him in because he was drinking more, leaking urine both at night, and when he would run/play. He had also gotten a little heavier over the past several months...(which now we know was a clue too.)

The doctor first performed a Dex Suppression Test last week. Then, based on the cortisol levels, and the results (could not suppress), recommended an ultrasound. The ultrasound confirmed he has a tumor on his right adrenal gland, and it has wrapped around the vena cava. In compensation, his adrenal gland on the left side has shrunk significantly. Because of the location, and the risk, no aspirates were done to send out for a pathology.

Also, due to the tumor's location, we are advised surgery is a very risky option. The Doctor indicated there might be specialists, e.g. at the University who would possibly consider performing the surgery; but, not likely. And, I think given the location, and Pete’s age, we would not opt for any type of surgery regardless. (Though, no known heart problems.)

We also got information about the drugs Lysodren and Trilostane. The Doctors experience was more extensive with Lysodren, but he also felt there were good reasons for us to consider the Trilostane as well, and the Clinic does work with both medications. The Vet gave us a life estimate of 3 to 6 months :( and, honestly, beyond that, I was in such a daze over the diagnosis, I do not remember clearly about the descriptions of the drugs. And, while our clinic is certainly available to ask questions of, I want to gather some independent information to share with my husband, before we meet with them again in a couple days…so we can make an informed decision on how we want to proceed.

First, I cried so many tears…but, now I’ve joined this site, and I've also connected with two friends who are Vets (one of which was Pete’s Vet before we moved to FL) and am reading online as much as possible. I also met today, for an in-home visit, with with a Vet, licensed DVM, who is also trained in Eastern/traditional Chinese Medicine, acupuncture treatment, and Herbal Medicine. -- I'm not expecting a 'miracle' cure...but I am definitely keeping an open-mind. Because...I think I've got to be as aware of the likelihood that this is cancerous, which could be more life threatening, faster, than anything else diagnosed. Our first goal is to keep Pete comfortable, no pain, and then any longevity of life we can attain is a plus.

So, re: Lysodren vs Trilotsane, for treatment of an adrenal tumor…I am going to search the past discussion threads here for comments, and would also ask for anyone here now, reading this, to share their decision process and their results with either drug? (And with any other treatment experiences as well.)

Pete still gets excited about going for rides, plays with his toys, etc. I’m walking him and he seems much like himself...though he does seem to tire more easily.

Thank you, sincerely, for any information and experiences you can share with us.

[goldengirl88]

So sorry for Pete's problems. I too have a Jack Russell with an adrenal tumor, but it is on her left adrenal. I know the vet told me that they are not always cancerous, that more aren't than are. I will be going to the hospital where they use a high resolution Ultra Sound to check if Tipper's ahs grown. The last 2 times it had not. I am praying against all odds that it is still the same. My Tipper is 12, but also developed a heart murmur from the Cushings, so be careful of that happening. Her is slight , but still another problem. I amusing Vetoryl and Tipper had done well on it so far, but is having problems with focal seizures while sleeping. I believe it is due to the meds. She needs them to live so there is little I can do, but I am seeing a neurologist on Wednesday about the situation. It is a pity these babies have to get this when they are older, but I would not want it when she was younger either. I am hoping you find a good treatment for your Pete. I know there are some on here who have had the surgery when the vena cava was involved, but I do not think any of the surgeons I have read about here in the U.S. are qualified to do this surgery. It seems we are not up to par with this as other countries vets are. I am sorry this is happening to your baby, but you are not alone and we all came here crying and we all lean on each other for support. Hope all works out well. Blessings
Patti

[labblab]

Welcome to you and Pete! Like Patti, I am very glad you've joined us and I am sure that other parents who have been confronted with adrenal tumors will soon be chiming in with their thoughts and their experiences.

As far as selecting trilostane vs. Lysodren for treatment of adrenal Cushing's, I will try to be short-winded (which is very hard for me!) and cut to the chase. From our experience here, it seems as though specialists are increasingly prescribing trilostane for treatment of adrenal Cushing's. I believe this is because it often takes higher doses of Lysodren to suppress symptoms resulting from adrenal Cushing's than is the case when it is used for PDH. As a consequence, there is a greater likelihood of associated unwanted side effects. Having said that, Lysodren does offer one advantage. Due to it's cytotoxic action (it physically erodes adrenal cells), there are a few adrenal tumors that are actually reduced or necrosed by the drug. Trilostane does not have any physical effect on the tumor itself. However, I doubt whether anyone can predict in advance whether Pete's tumor might physically respond to the Lysodren. So that may not render it a reason to select it over trilostane, but still something you could discuss further with the specialists.

Again, I hope others will soon be stopping by to welcome you, as well.

Marianne

[Trish]

Hi

Welcome to you and Pete :). Sorry you had to visit our forum but I am very pleased you found us as there are a few of us that have had to face adrenal tumours. My Flynn being one of them.

He also had a right adrenal tumour that was invading the vena cava, it had travelled along a blood vessel from the gland into the lumen of the vena cava. He is a fox terrier mix so similar breed to your boy. He was 11 at diagnosis so a bit younger than Pete, but he had successful adrenalectomy and removal of the thrombus from the vena cava. He is now 12 and doing really well apart from needing liver surgery in November and he has come through that like the trooper he is!

I have a lot more faith than one of the previous posters here regarding the expertise of veterinary surgeons in the US. I live in New Zealand so while any major surgery is risky in our pups the board certified surgeons are truly excellent and their expertise and knowledge is invaluable when surgery is appropriate for our furry friends. I know the two specialist surgeons I have dealt with here in NZ have saved my dog's life three times now and they did part of their specialist training in the US. I just do not want any readers (you included) thinking veterinary surgeons operating on adrenal tumour's in the US with or without vena cava involvement are not qualified to perform this surgery, because they are. Vena cava involvement certainly makes it more risky, but sometimes surgery may be a risk worth taking. But that is a decision you make with your own veterinary team. But I would hate for any hope to be taken away about surgery in this type of problem for anyone who ends up here researching adrenal tumours.

That being said, we have to look at Pete's case as an individual! Is the vet you have seen up until now a specialist or your local one? I really think in a tricky case like Pete you need the advice of those who are experienced in dealing with this type of tumour as it can sometimes be out of the comfort zone of local vets. Unfortunately, it is practically impossible to biopsy the adrenals because of the position of the gland. They often get a good idea of the type of tumour based on the ultrasound. For example Flynn's tumour arose in the medulla (middle) of the gland, his was diagnosed after removal as a pheochromocytoma. This type of tumour secretes catecholamines like adrenaline, this affected Flynn by raising his BP. Has Pete's BP been checked, as I would advise that.

I am sorry I am not much help with advice on the cushings drugs, my dog had two LDDS tests and suppressed both times so we did not have to go there, but other posters here will be helpful if you choose to go down that path.

My uncle's JR died earlier last year and he was nearly 19, so these dogs can live long lives being a smaller breed. We have another poster on here whose dog Snuggles has an adrenal tumour and is considering surgery but they are currently waiting for the next ultrasound to see if there has been any progression in tumour size before making any decisions. Her dog is 14 too so you may want to check out her thread, which is under her poster name beaglemom3.

I so know how you are feeling having faced similar myself, it sucks!! But I think if it was me I would take Pete to either a teaching hospital or a specialist only veterinary private practice for a consult with IMS and surgeon to get their opinions. If surgery is not an option for Pete they will be able to best advise on conservative treatment to help Pete stay good for as long as possible!

If you have any questions I will keep an eye on your thread so ask away :)

Trish

[molly muffin]

Hello and welcome to you and Pete. Isn't that an adorable picture. :)

I agree, that I'd want a consult with a good board certified surgeon who had done lots of these surgieries with a good success rate to evaluate and give an opinion on surgery evaluation, risks and best treatment plan if surgery is not an option.

It will be a decision that you'll make with your team based upon the facts available in Pete's case. Every case and dog is different, so this is all about Pete and you and your family.

I think that Marianne gave a good run down on trilostane vs lysodren if surgery isn't an option and the factors that you would want to discuss with your specialist.

Whatever you decide, we are here and have a wonderful group of members with varying experiences to help give feedback, answer questions and provide support.

Welcome again
Sharlene and Molly Muffin

[littleone1]

Hi, and welcome to both of you.

My Corky also had a right adrenal tumor that was invading his inferior vena cava. Because of his age and his other medical issues, he was not a good candidate for surgery. He was successfully treated with Trilostane for several years. He outlived his expected life span. He had a good quality of life. When I had to let him go, it was not because of cushings.

If he was able to have had the adrenalectomy, I would have had it done. As others have said, you need to have a board certified surgeon if you choose to have the surgery done. Discussing all avenues with a vet or IMS with experience in this area is very helpful.

Corky's dosage had to be increased as time went on, but even though the dosage seemed to be on the high side after starting where it should have been, he didn't have any problems with it.

You will know what the right decision is. I wish both of you the best.

[goldengirl88]

My intent was never to dissuade you from surgery. That will be a decision you and your Dr.'s make. My only comment was from my personal experience, that is all I can speak to. I am praying that whatever you decide all goes well. I know how it is to have to make these hard decisions so I feel for you. Luckily you came here where there is lots of help and support to get you thru this. Just remember we are all here for you so you are not alone. We all started out at the same place here, so we know how hard it is. Blessings
Patti

[For Pete's Sake]

Wow. I am almost in tears at the beautiful, thorough, and hopeful responses and words of support and encouragement, re: our Pete and his recent diagnosis.

Because my husband had been out of town last week for work, and didn't get home til late Friday night, we had very busy & too short of a weekend...including meeting with our Vets, follow up phone calls with a couple of good friends, who are also Vets...and spending time with Pete, and our other Jacks...Jane (who will be 19 in June!) and Mickey (14)...so, I wasn't able to be online yesterday, or today...until now. When I saw and read all your responses, I was overcome with emotion. How truly revitalizing to my soul!

Tomorrow I will review each of your posts again in detail, and respond with questions about your individual experiences, as they all seem to have a relevant connection to our circumstances. And, I'll also have some updates then too re: where things our at with our next steps and decisions.

Again, wow. Thank you, thank you, thank you, and, did I mention...THANK YOU, ALL...I feel SO much better now.:)

K

[doxiesrock912]

K,
it's called "paying it forward". We've all been where you are/

[goldengirl88]

Just checking in to see how Pete had been doing? Hope all is well. Blessings
Patti