New member

[lizd]

Hi, This is Lizd owner of Abbey Rose who is about 11 yrs old. She was diagnosed with Cushings (pituitary tumor) about 3 years ago. She has been on Trilostane (and currently is) and had two cyberknife treatments in Yonkers, NY. The first cyberknife tx lasted for abuot a year and then she decline markedly. The second treatment was about 7 months ago. She is still eating and drinking, somewhat active. She has had one seizure and one eye has a swollen optic nerve and the eye has a dilated pupil. I just started her on pred eye drops today. I wanted to ask the forum about effects of this disease late in the course. What should I expect to see in the way of clinical signs. I would appreciate your knowledge. I am going away for a week in early March and am worried about her while I am gone. Thanks all.

[lulusmom]

Hi Lizd and welcome to the forum.

I'm sorry for the need to find us but glad you found your way here. It would help us provide more meaningful feedback if you could answer a few questions. I apologize for answering a question with a lot of questions but it's necessary.

Can you tell us approximately the timelines for everything such as when did she start trilostane, when did she have her first cyberknife procedure? Did you discontinue trilostane after that? When you say Abbey Rose declined, do you mean she had a return of symptoms? Was she on trilostane at that time and did your vet do a stim test to determine if the cause was high cortisol again?

You mentioned that Abbey Rose is currently taking Trilostane. How much does she weigh, what dose is she taking and if she is still taking Trilostane, can I assume that's because her symptoms never resolved with the second procedure? When was the last stim test and can you post the results here?

To give you a general answer to your question, cushing's is a very slow progressing disease and can take years to actually completely obliterate the immune system, leaving a dog open to massive bacterial infection which usually ends in sepsis and death. Internal organs can fail before that time, especially if additional contributing underlying conditions are involved.

Again, welcome to the forum. I'm sure other will be by to welcome you and give you their own feedback and maybe even ask more questions. :o

Glynda

[lizd]

Glynda,
Thank you for responding. I don't mind questions. I hope I can remember the timeline. Abbey's first cyberknife was June 2009. We did do stim tests but I have to look them up. Prior to the cyberknife, she started on triolostane and I would say was on it for a year before she started to get lethargic, not moving very much. We didn't really see an increase in drinking and desire for food, it was more of constant sleeping and not really active as she had been. I think the trilostane kept those signs under control. After the cyberknife (about 1 month post), she started to show signs of normality, going for walks, running after deer. We continued her on trilostane. 30 mg per day. She weighs 40 lbs. A year later, she started to decline, eg, not walking, lethargy. We debated about trying a second cyberknife bc it had not been done very often. So the time is now June 2010. We had heard about a doc associated with the U of PA who actually did surgery to remove pituitary tumors. He had trained in Europe. Unfortunately, since she had radation already she was not a candidate. SO if anyone out there has a dog with a pituitary tumor, it would be worth calling U of P about it.
We decided to try the cyberknife in July 0f 2010 and continued her on trilostane. Dosage now is 40 mg bid. We are not doing any more stim tests because the doc doesn't think it would be worth it. About 3 months ago, she had a seizure and she is now on low dose of phenobarb and steriod. the results of the second cyberknife were very good and she became active. But as of today, almost 8 months post cyberknife, she has one eye which is dilated and the optic nerve is enlarged. I suppose it is the tumor pressing on the eye. She is now getting pred drops in that eye. Not sure if this will really help or not. SO I think she is getting to the end stages but perhaps it would take some time. She sleeps all the time, but still has a great appetite. I would say that her drinking is not that increased. I think she is blind in one eye and has lost some hearing.
Sorry for the length of this response. Its been a long long journey but well worth all of the time and effort for a memnber of the family.

[Squirt's Mom]

Hi Liz and welcome to you and Abbey! :)

I wish I could offer some insight but all I have are questions, none of which are particularly pertinent at this point. :o

We have one member who's baby has had the hypophysectomy performed by Dr. David Bruyette, but I think it was done at UC Davis in CA. It is good to hear that others are working in this area and I hope in the future pituitary tumors can be successfully removed and affect a cure as is so often true with adrenal based Cushing's.

The best thing I can offer is to let you know that you are not alone. Regardless of what the days ahead hold for you and Abbey, we are here with you all the way.

Hugs,
Leslie and the girls - always

[lulusmom]

Thanks for responding, Liz. Unfortunately, cyberknife is relatively new and we here on the forum don't know much about it so unfortunately I still have more questions than answers. Please refer to my text in blue below:


Glynda,
Thank you for responding. I don't mind questions. I hope I can remember the timeline. Abbey's first cyberknife was June 2009.
We did do stim tests but I have to look them up. Prior to the cyberknife, she started on triolostane and I would say was on it for a year before she started to get lethargic, not moving very much. We didn't really see an increase in drinking and desire for food, it was more of constant sleeping and not really active as she had been. I think the trilostane kept those signs under control.

Okay so at this point, Abby had been treating with Trilostane for a year but after getting extremely lethargic you took her to the vet and he did what? Did he do a stim test at this time and determine that cortisol was within the therapeutic and therefore suspect it had to be something else? Did he suspect Abbey had an expanding macroadenoma and perhaps suggested an MRI to confirm?

After the cyberknife (about 1 month post), she started to show signs of normality, going for walks, running after deer. We continued her on trilostane. 30 mg per day. She weighs 40 lbs.

Did the oncologogist or your vet tell you that the cyberknife procedure would shrink or eliminate the tumor so as to actually cure the cushing's, eliminating the need for trilostane? I'm confused because through all of this, it seems you continued to give Abbey Trilostane. Perhaps Abbey's procedure was done to shrink the macro enough to eliminate neuro signs but not enough to eliminate cushing's symptoms???

A year later, she started to decline, eg, not walking, lethargy. We debated about trying a second cyberknife bc it had not been done very often. So the time is now June 2010.

Was this because the tumor had grown again?

We had heard about a doc associated with the U of PA who actually did surgery to remove pituitary tumors. He had trained in Europe. Unfortunately, since she had radation already she was not a candidate. SO if anyone out there has a dog with a pituitary tumor, it would be worth calling U of P about it.

Thank you for passing on this information. I think most of us are hoping that this procedures becomes the norm in the near future.


We decided to try the cyberknife in July 0f 2010 and continued her on trilostane. Dosage now is 40 mg bid. We are not doing any more stim tests because the doc doesn't think it would be worth it. About 3 months ago, she had a seizure and she is now on low dose of phenobarb and steriod. the results of the second cyberknife were very good and she became active. But as of today, almost 8 months post cyberknife, she has one eye which is dilated and the optic nerve is enlarged. I suppose it is the tumor pressing on the eye. She is now getting pred drops in that eye. Not sure if this will really help or not. SO I think she is getting to the end stages but perhaps it would take some time. She sleeps all the time, but still has a great appetite. I would say that her drinking is not that increased. I think she is blind in one eye and has lost some hearing.

I am still very confused. Two cyberknife procedures have been done and you've never been able to eliminate trilostane and are actually dosing at a high dosage BID after the second cyberknife? Unless Abbey is taking Trilostane for something else, I am totally confused as to why your vet thinks no more acth stim tests are needed? I am guessing that Abbey still needs Trilostane to control symptoms because even though the pituitary tumor is smaller, the adrenals are still producing too much cortisol?? If yes, then how does the vet know that cortisol (too high or too low) is not the current source of Abbey's problems?

Sorry for the length of this response. Its been a long long journey but well worth all of the time and effort for a memnber of the family.

I couldn't agree more and I'd really love to help you but as you can see, I am still not putting all the pieces together. When you asked the original question regarding the progression of the disease, were you asking about progression of a macrotumor or progression of cushing's in general. I ask that question because if Trilostane is being given to Abbey to control the cushing's and her cortisol is being maintained within a therapeutic range, there should be no progression of the disease. Perhaps more information will help me understand Abbey's medical history and your vet's rationale.

I ran into a blog when researching cyberknife radiation and I'm sure you've probably seen it already but other may find it interesting.

http://dogblog.dogster.com/2008/09/08/cyberknife-radiation-for-dogs-the-story-of-ginger/