Questions about Cushings - Charlotte has crossed the Bridge

[LaurieS]

We have an appointment for Charlotte's next ACTH Stim test on 1/23 but I have a message into her Davis vet to see if he thinks we should come sooner. She is with me at work today and acting very lethargic. But yesterday she had a pretty good day out and about with my husband. He said she was very attentive and more active than she had been the day before. So she obviously has good days and bad days.

One thing I have noticed is that they want to do her ACTH 3-4 hours after she gets the Vetoryl. I have seen it posted here, and also on Dechra's website, that the test should be run 4-6 hours after medicating. I have confidence in Davis but I think I should still ask why they want to test her a little sooner than recommended.

Laurie

[LaurieS]

I just heard back from Charlotte's Davis vet and he thinks it's ok to wait for our scheduled appointment on 1/23. In addition to the ACTH stim test he wants to recheck her chemistry panel also (electrolytes, kidney values, liver, etc). As for the continued trembling/tremors he said he would have expected those to get better by now and thinks we should see a neurologist. He said he would have expected some improvement by now if it were just related to muscle atrophy from cushings. I did read that "shaking" was a symptom of addisons disease and if her cortisol levels have fallen in the past couple of weeks could this be what I'm seeing? Not sure what they mean by "shaking". What is going on with Charlotte is the same as what she was doing before she started on the Vetoryl. Mostly trembling over or shoulder area and front legs when she is at rest. But I do believe it is worse now than it ever has been. Thoughts?

But I have a big problem. I'm out of money. I have just enough to pay for her ACTH stim test but nothing more. I feel sick because I want to do everything possible for Charlotte but I have run out of resources. I have maxed out the Care Credit card and my personal credit card. How do all of you pay for all these tests? I've spent over $3000 and if she hadn't been in the UC Davis diagnostic study it would be a lot more. I'm on a very tight budget and don't know what to do.

[Joan2517]

Call Credit Care and see if they will up your credit limit. Or see if your vet will set up a payment plan...can't hurt to ask.

[LaurieS]

Call Credit Care and see if they will up your credit limit. Or see if your vet will set up a payment plan...can't hurt to ask.

I'll be calling Care Credit tomorrow morning. I don't know if Davis has a payment plan but I will ask them tomorrow as well. Thanks Joan!

[Carole Alexander]

Have you considered setting up a "Go Fund Me" page? I don't know how much it would raise but I will contribute. Since I am going through nearly the same process with Skippy, I am painfully aware of how expensive this is. Also, UC Davis may be able to help. Charlotte is in their research study; certainly that benefits you and Charlotte, but it also benefits Davis. Someone (maybe Drecha?) funded them to study Cushing's treatment. Their research will bring prestige and credibility to them. It will also bring additional research dollars and new patients to their clinic. My experience with Purdue X 2 is that they are very firm in their payment policies and people who look as if they ill prepared for the exorbitant costs somehow raise up the money. But, these are not clients whose pups are in research studies. I am also aware that Purdue offers deeply discounted rates to veterans and their staff and students, as they should. I would discuss this first when you meet with them as it is clear that many issues are yet to be determined regarding Charlotte's conditions. Let us know how this goes and hang tight.

[labblab]

Hi again, Laurie. First off, I want to address your earlier question about the timing of Davis' monitoring ACTH testing (3-4 hours after dosing). For quite some time now, Davis has advocated for a testing window that is a bit earlier than Dechra's. I can only speculate that perhaps Davis thinks it is more likely that they are catching the cortisol at its absolutely lowest point by testing within that window. Regardless, as long as all of Charlotte's monitoring tests take place within the same time frame, I don't think that should present any problems because you will be comparing apples-to-apples, if you will.

As far as the tremoring, since it started even before the trilostane treatment, it does seem as though something other than low cortisol is likely involved. Coupled with Charlotte's lethargy and lack of appetite, one disconcerting possibility is that the pituitary tumor that is causing the Cushing's may be enlarging and putting pressure on other areas of her brain. Given the shape of a boxer's skull, I believe that she may be at a heightened risk for this problem, and that may be one of the possibilities that is prompting the Davis internist to suggest a neurological consultation. Unfortunately, neurological diagnostics and subsequent treatment can be quite expensive. I know this personally because my husband and I opted out of pursuing neurological imaging or treatment for our own Cushpup, partly due to the expense. We ultimately ended up losing him to what we assume were the effects of an expanding tumor.

Under your current circumstances, I believe I would just try to hold tight until the ACTH is performed, and if at all possible, it would be great if your vet could also run at least a very basic blood chemistry panel. Those tests alone may provide you with some answers, especially if it appears as though a dosage change is warranted. However, if Charlotte's cortisol level is optimal at the same time that the tremoring and other problems worsen, then some other decisions may need to be made. I don't want to worry you unnecessarily about an enlarging pituitary tumor, but I do feel compelled to mention it because I do think it is a possibility.

I surely understand your frustration and sorrow over these medical costs. In a perfect world, we'd hope to be able to opt for any treatment or any test that's necessary. But very few people are lucky enough to be able to do that, and the rest of us have to choose whatever will deliver the best hope for the least cost. I do think the money spent on the next ACTH will be worth it. And then, as I say, you may have a better idea as to whether there is value in looking elsewhere for the source of these problems.

Please hang in there, Laurie. You've done a great job of advocating for Charlotte, and she's very lucky to have you as her mom.

Marianne

[LaurieS]

Hi again, Laurie. First off, I want to address your earlier question about the timing of Davis' monitoring ACTH testing (3-4 hours after dosing). For quite some time now, Davis has advocated for a testing window that is a bit earlier than Dechra's. I can only speculate that perhaps Davis thinks it is more likely that they are catching the cortisol at its absolutely lowest point by testing within that window. Regardless, as long as all of Charlotte's monitoring tests take place within the same time frame, I don't think that should present any problems because you will be comparing apples-to-apples, if you will.

As far as the tremoring, since it started even before the trilostane treatment, it does seem as though something other than low cortisol is likely involved. Coupled with Charlotte's lethargy and lack of appetite, one disconcerting possibility is that the pituitary tumor that is causing the Cushing's may be enlarging and putting pressure on other areas of her brain. Given the shape of a boxer's skull, I believe that she may be at a heightened risk for this problem, and that may be one of the possibilities that is prompting the Davis internist to suggest a neurological consultation. Unfortunately, neurological diagnostics and subsequent treatment can be quite expensive. I know this personally because my husband and I opted out of pursuing neurological imaging or treatment for our own Cushpup, partly due to the expense. We ultimately ended up losing him to what we assume were the effects of an expanding tumor.

Under your current circumstances, I believe I would just try to hold tight until the ACTH is performed, and if at all possible, it would be great if your vet could also run at least a very basic blood chemistry panel. Those tests alone may provide you with some answers, especially if it appears as though a dosage change is warranted. However, if Charlotte's cortisol level is optimal at the same time that the tremoring and other problems worsen, then some other decisions may need to be made. I don't want to worry you unnecessarily about an enlarging pituitary tumor, but I do feel compelled to mention it because I do think it is a possibility.

I surely understand your frustration and sorrow over these medical costs. In a perfect world, we'd hope to be able to opt for any treatment or any test that's necessary. But very few people are lucky enough to be able to do that, and the rest of us have to choose whatever will deliver the best hope for the least cost. I do think the money spent on the next ACTH will be worth it. And then, as I say, you may have a better idea as to whether there is value in looking elsewhere for the source of these problems.

Please hang in there, Laurie. You've done a great job of advocating for Charlotte, and she's very lucky to have you as her mom.

Marianne

Thank you Marianne, as much as I don't want to think about it I do realize the tumor could be enlarging and causing these additional problems. I appreciate your encouragement and understanding. I'm so sorry you lost your cushpup to this. I will wait and see what the ACTH test and blood panel reveal and go from there. I'm calling first thing in the morning to see if I can move up her appointment.

I think I've gone through a whole box of tissues tonight. I'm not ready to lose her. She has been with us less than 3 years. I got her the day after I lost my beloved dog Tanner who most likely had a brain tumor. I truly believe he left this earth when he did so we could rescue Charlotte. As she lays here in bed with me I'm trying to be strong and positive.

Thanks to everyone for sharing your knowledge, advice and stories. It's been so helpful and I don't know what I'd do without all of you!

[LaurieS]

Have you considered setting up a "Go Fund Me" page? I don't know how much it would raise but I will contribute. Since I am going through nearly the same process with Skippy, I am painfully aware of how expensive this is. Also, UC Davis may be able to help. Charlotte is in their research study; certainly that benefits you and Charlotte, but it also benefits Davis. Someone (maybe Drecha?) funded them to study Cushing's treatment. Their research will bring prestige and credibility to them. It will also bring additional research dollars and new patients to their clinic. My experience with Purdue X 2 is that they are very firm in their payment policies and people who look as if they ill prepared for the exorbitant costs somehow raise up the money. But, these are not clients whose pups are in research studies. I am also aware that Purdue offers deeply discounted rates to veterans and their staff and students, as they should. I would discuss this first when you meet with them as it is clear that many issues are yet to be determined regarding Charlotte's conditions. Let us know how this goes and hang tight.

Thanks for the suggestions. I may try a Go Fund Me page once we know more about what's going on. I will also check and see if Davis has any sort of help or payment plans available. One day at a time I guess. I will keep you all posted.

[molly muffin]

One day at a time is the only way to go. You just never know how things are going to progress.
Just wanted you to know that we are all here with you.
I really think all forum members should just invest in Kleenex stock. Obviously we would keep the market value up by our use alone!!!

[LaurieS]

One day at a time is the only way to go. You just never know how things are going to progress.
Just wanted you to know that we are all here with you.
I really think all forum members should just invest in Kleenex stock. Obviously we would keep the market value up by our use alone!!!

Yes for sure on the kleenex comment! Sad but true.

Charlotte has an appt at Davis on Friday for her ACTH stim test and a chem panel. I never thought id say this but i hope her cortisol levels are low because maybe a medication adjustment will help her. She did so well for about a week or so then back downhill again. The trembling is so bad. Its so sad to watch. I hope she isnt hurting. I made an appt with the neurologist already because they are booked about 6 weeks out. Our appt isnt until March 6th! I may have to go to VCA if she gets worse and it doesnt seem to be related to the meds or cushings.

Ill post again as soon as we get her results.

Laurie