Buddy, The Mighty Lizard Hunter - Suspected Pituitary Macro Tumor

Aw Buddy you are so cute and always the hunter, I still think there should've a book series called "The adventures of Buddy the Lizard hunter" take care Kathy, glad you can relax today!

Kathy:
I have emailed back and forth with Dr. B. I am under the understanding this method does not give them much longer, and is really a tuff surgery, as it is brain surgery.I emailed him when my Tipper was first diagnosed and I was scared to death of this disease. I am glad that you decided to give Buddy the Vetoryl and prednisone. That is what my choice would have been also if it were Tipper. I think you are making well informed smart choices. I also think you are a lot stronger than you give yourself credit for. To add to Letti's comment I think Buddy should do a reality t.v. series, then come out with the book. That way when he gets better, he could go on a book tour, and take his mom. God Bless You Both. Special prayers are going out for Buddy.
Patti

Maybe that's why Dr. B said he didn't think surgery would be an option for Scoop. With all his problems and if the surgery is tough, it might be too hard for Scoop.

Kathy, I sure hope Dr. B can help Buddy. Prayers and best wishes to you both.

Good morning angels,:)
I have been thinking about Trilostane dosing. In the case of a suspected macro, I would think that once a day trilo dosing would be better than twice. Trilo is supposedly out of their system within 12 hours. That would give the cortisol time to rise to some degree before the next dosage 24 hours later. That could help the growth of the macro a minute amount. Anything being better than nothing. I will be emailing Dr. B soon to ask him about adding Prednisone to Trilostane. I also want to ask him about Buddy's head tremors and a few other things. Poor man. I am bursting with questions!:confused: Now that I've moved from devastation mode, there is no stopping me! I am a mother on a mission, so watch out!!:D

Patti - Buddy's not likely to get better, so we move on to what's next. Unless Mel works her magic of course.;) She has a direct line to Mother Nature herself!:) I have the number too, but always end up as the 50th call waiting. I wait longer than trying to talk to a live person at the DMV. LOL!:D

Hugs,
Kathy

I have prepared a rather lengthy email for Dr. B. Below are the questions that I am asking.
My questions...
I would like to know if head tremors are a macro-tumor symptom

What is the best drug protocol available when surgery is not an option?

What is your take on continuing Trilostane while adding Prednisone? The trilo would hopefully keep the Cushing symptoms under control while the Prednisone attacks the tumor, hopefully slowing down it's growth. Have you heard of this combination? Is it viable and what are the dosages?

I'll let you know if/when I hear from him.
Hugs,
Kathy

I would come right out and say "here is the testing I have had done and the docs I have seen (specialists)" and they believe it is a macro tumor. I cannot afford a $3500 MRI. Is there any other way I can be 100% sure it is a macro? What are the key signs of a macro and how can I tell if it is progressing?

Heck get as much free advice from this expert as you can. Make sure you let him know you are a school teacher, single and that Buddy is your world. Don't laugh but he does have the ability to do procedures for free. :o:D:o

Kim

Thank you Kim. I added those things to my email. ;):). I will send it after I get home from work. I would feel more comfortable sending it from through my home wi-fi. By the way, I am sleeping somewhat better. :)

Hugs,
Kathy

Great news. You keep on sleeping so you are awake and better able to cuddle that cute dog of yours! :D

Kathy, I think it's great that you are emailing Dr. B.

FWIW, though, I don't think there is any way to know for certain that it is a macrotumor without either a CT or MRI. At least, that's what we were told with Barkis. You can make an educated guess on the basis of symptom progression, but you can't know for sure without the imaging.

Also, just to clarify what I think I know about the prednisone, I don't think it directly attacks the tumor itself. I think it may help relieve swelling and inflammation of the tissue around the tumor which can help blunt the tumor's impact on the brain. It also may have some beneficial effect on altering the ACTH-feedback loop which is the thing that may keep the tumor from growing as quickly. I do not understand the ins-and-outs of that feedback loop, but that is the issue associated with Cushing's treatment and pituitary tumor growth. I'll try to come back later and add some more info about the feedback loop (or you may already have read about it yourself during your own searches...).

Marianne

Here's the quote I was looking for:

Quote:

---

Because most chemotherapeutic agents have no effect
on the pituitary itself, they do not inhibit ACTH secretion,
which may actually increase with therapy.This phenomenon,
known as Nelson’s syndrome, has been well
documented in humans with pituitary tumors treated
with bilateral adrenalectomy. Nelson’s syndrome refers
to rapid enlargement of a pituitary mass that occurs after
loss of negative feedback from adrenal cortisol production,
which has an inhibitory effect on ACTH release...

---

http://www.k9cushings.com/forum/showthread.php?t=229

So what I don't know is whether, in this regard, adding a controlled amount of prednisone would be better/worse than discontinuing or altering the trilo and letting the cortisol naturally elevate. But I'll bet Dr. B will have an opinion.

Just nipping into say hello

Hope you are both ok?

Mel
Xxxxx

Marianne,
I cut and pasted your quote and question to my email for Dr. B. I'll let you know if/when I hear anything. If I don't get a response in the next week or so, I will try calling. Thanks or your help once more.
I am hoping I hear something from my vet this week too. Thanks!:)

Hugs,
Kathy

Hi Mel,:)
Yes we're okay! Thanks for checking:);)

Hugs,
Kathy

Yes Marianne you are right.:) The neurosurgeon told me that there was no way to determine 100% the presence of a brain tumor or Macro without imaging tests such as an MRI or CT. That has not changed. I was just hoping that Dr. B. could tell me something that would help. We'll see if he responds.
Hugs,
Kathy

Hey Kathy,
Your questions sound like good ones to me, along with Marianne added in, it has to get Dr. B at least thinking about possibilities. Did you mention the hypoglycemia too? That this is another thing they think Buddy has, what those symptoms were and his response to the sugar? Just so he has a completely clear picture. Oh and tell him how Buddy runs around chasing lizards like there is nothing wrong and just being his happy self, except for you know, when he's not. Just so he can see a complete picture of that activity too.
A mom on a mission is nothing to be messed with!!! Go Mom!!

hugs,
Sharlene and Molly Muffin

Sharlene,
I didn't want to overwhelm Dr. B with too many details, but I think he'll get the gist of it. I'll fill him in on the reactive hypoglycemia in my next email, if I get a response at all. I think I filled him in on just about everything else.

Hugs,
Kathy

LOL Kathy, Okay, no overwhelming the good doctor. :)
I think he will respond though, he seems to have responded to others, so why not. :) I have high hopes anyway.

hugs,
Sharlene and Molly Muffin

After my day at my mothers I am catching up on posts. I love it that Buddy was out doing his thing with the lizards as usual! :) I am glad to hear you have gotten at least a little rest now too. ;)
Was just reading about Dr. Bruyette..he surely sounds like the guy with all the info. Glad someone is trying to find some cures for this lousy disease. I hope you hear back from him. If you can tell anything by someone's photo I would say he looks very kind! Will be interested to hear any response you get.
Barbara

Praying the good vet will help little Buddy, and you will better know how to treat the "Mighty Lizard Hunter".....

I got an answer from Dr. B already. It is cut and pasted below.....

Hi

I do agree that its very suspicious that you are dealing with a large pituitary tumor. You would need a MRI but I dont understand the costs as it should be much less than 3,000.

At this time we dont have any drugs to use that would not involve a clinical trial and that would mean your dog would have to be in LA for the duration of the study (6 months).

I would stay on both trilostane and prednisone. The prednisone really only works to decrease swelling in the brain. It wont have any effect on tumor size but it is helpful none the less.

Dave


David Bruyette, DVM, DACVIM
Medical Director
david.bruyette@vcahospitals.com

We invite you to provide a testimonial or review about your experience with VCA West Los Angeles Animal Hospital at:

VCA West Los Angeles Animal Hospital

Kathy,

I am happy that he responded so quickly. I think that he is correct that the price of the MRI, is not in line with what others have paid.

hugs,
Sharlene

Wow he's fast! Imagine how many emails he gets too. Way to go.

OK so based on what he was told he agrees with what your vet is telling you re the problem. He agrees with your thoughts on staying on the trilo/pred combo. He feels the MRI cost is out of line and says an mri is necessary if you want to know for sure.

How do you feel? It was short but he seemed to address alot of your questions and give you honest answers. Kim

Buddy is not on the Trilo Prednisone combo yet. He is only getting Trilo at this time. I decided that keeping Buddy on the Trilo and adding Prednisone would be the best course of action for Buddy after researching numerous articles. I am still waiting to hear from his vet. He was going to contact the neurosurgeon that did Buddy's consultation to get her input and review all of Buddy's tests. Buddy's appointment was last Tuesday. I just forwarded my email to Dr. B and his response on to my vet. I want to get the prednisone started ASAP. Reducing brain swelling could help with the tremors making Buddy more comfortable. You asked how I am feeling. I am relieved to get some honest answers from an expert such as Dr. B. I am sad that Buddy's prognosis is grim, but I would rather know. I am thrilled that Dr. B responded so quickly. I just emailed him this afternoon! I am feeling a mix of emotions right now. I wish I could do more. Ask me how I'm feeling tomorrow and it will probably be something entirely different.;)

Hugs,
Kathy

Kathy:
I am glad to hear you are breathing a sigh of relief after talking to Dr. B. At least you know where you stand. I just really can't believe the price of that MRI. Tipper and I are still praying for a miracle to come thru for your precious Buddy. He is too cute, I wish Tipper could meet him as I talk to her about Buddy quite often. I still believe in miracles so maybe God will have mercy on Buddy ad grant him one. God Bless You and Buddy
Patti

Patti,
I am sure that Buddy would love to meet Tipper.;):) He loves everybody! The mailman, UPS delivery man, salesman, etc., all his very best friends. Buddy loves company, the more the better! He is a very friendly chap!:D

Hugs,
Kathy

Kathy
So pleased that you heard back from doc so quickly.At least you have prob THE BEST opinion of how to treat at this point.I would be very anxious to start the prednisone as well.You and Buddy have been in my prayers and I hope that you hear back from your vets soon enough so that you can start him on the new medication.Hope Buddy is having a good day and the lizard hunting is plentiful today.:)
Patty

Kathy, I'm really surprised and pleased that Dr. B replied so quickly, too! :)

Dang, I just wish he'd gone into more detail, though. Like, what would be the best dosing formula for the supplemental prednisone? But I guess you can always ask follow-up questions once you've heard back from the neurosurgeon. ;)

Marianne

P.S. Somehow I had missed that $3,000 quote for the MRI. That does seem exceedingly high. I think we were quoted no more than $1,000 and maybe even less. FWIW, I think a CT is even less expensive for people who mainly want confirmation of the presence or absence of an enlarged tumor. My impression was that the radiation oncologists would have wanted an MRI if we had pursued radiation treatment. But solely for the purposes of diagnostics, a CT may be a cheaper alternative. We didn't even pursue a CT, though, ourselves.

So glad you got a quick reply. Well if this vet thinks the fee for the MRI was inflated then it must be. Certainly it would be most expensive in a city like L.A. and if it's less there it should be less everywhere.
It will be interesting to hear what your vet and the neuro suggest now. The Trilo/Pred combo sounds like a good way to turn so Buddy can remain comfortable. Hopefully you will hear from your team soon.
Glad your summer break is in sight!! :D yay!
Barbara

Marianne,
I cut and pasted part of the email that I sent to Dr. B. .....

Quote....
They recommended a $3000 MRI. If he had a or tumor or a stroke, it would probably show on the MRI. The other option was to test for Cushings, start treatment if found and wait for more neuro symptoms to appear. I had already spent more than $1600 the previous week on vet bills and did not have an additional $3000 for an MRI. I chose the second option and Cushing's testing was started the next day.
End of quote....

The Vet specialty hospital where Buddy had his Neuro exam game me a quote of over $3000 for an MRI. I don't have the exact amount with me. I think it was actually something like $3200. I remember feeling devastated at that moment, knowing that I didn't have the money. Now that the general consensus of all the docs including Dr. B is the presence of a macro tumor. I am satisfied with that. I don't need to beg, borrow or steal to come up with that kind of money. I would prefer to go ahead and start treatment knowing that a macro tumor is highly suspicious (per Dr. B). Starting the prednisone might help reduce inflammation which could minimize Buddy's head tremors. It is all about making him comfortable for as long as possible. This morning he was telling me off because he thought his breakfast was late and he was having none of it! Still spunky, eats well, poops are good, Cushing symptoms controlled (except for rear leg weakness), still an opinionated little busy body, has to be the center of attention, Knows that the world revolves around him, is smarter than all of my family put together and forever the hunter! :);) As long as he's happy and doesn't seem to be in pain, we'll continue on. The journey continues......

Thanks for all the love,
Hugs,
Kathy

I looked up the quote from the vet specialty hospital for the MRI when I got home. It is $3147.29
The price includes:
MRI Imaging
MRI Interpretation fee
General Anesthesia technician
Anesthetic protocol and induction of drugs
Catheterization – intravenous
Day case/nursing care

This is the actual quote that I was given at the time of Buddy's neuro consultation. :(

Hi Kathy,
Is that the same place as the imaging center of san diego? I was looking for another option in the area, and that was the only one that kept popping up. Seems they try to get all the local GP's to send to them for imaging. Suppose to be a great place, but yowser, that is pricey. I say that based upon just looking at another thread, who had a macro and imaging done for 1,322.85, also in California, Fountain View maybe. So I think they are out to lunch with this 3147.29 pricing. Also, that dog, Tessie had radiation therapy and went on to live for gosh, quite a bit longer, passed at age18 years from kidney problems. (common once they get up to that age I think).

Yes, I'm going through reading threads on macro tumors, etc. We actually have quite a few on here and I thought maybe some would give ideas of what has worked, what hasn't, etc. I've only gotten through a couple, but that is because I'm starting at the beginning and reading all the way through.

HUGS,
Sharlene and Molly Muffin
So, pffffttt..on that price. hmmph too.

I am with you guys ridiculous amount of money!

That's what I love about this place, Sharlene you rock for doing that for Kathy and buddy

Hope you guys are ok? Did any lizards dare to come in the garden?

Mel
Xxxxx

Sharlene,
I don't think there's much point in getting an MRI done at this point. I wouldn't be opting for radiation therapy anyway, as I wouldn't want to put Buddy through that and it's too expensive. So there is no point paying for an expensive imaging just to verify what the docs already suspect. Would have helped to know a couple months ago before the neuro symptoms started to escalate. Now, I just want the docs to start treatment by adding the correct dosage of Prednisone, and we go from there. I called my vet's office to see if they received the email that I forwarded from Dr. B last evening. I haven't heard back. I am not asking for a response yet, I just want to know if they got it. If I don't hear this week, I'm going to run copies of all of it and hand deliver a written copy to them early next week. I can certainly be a squeaky wheel when I have to be.

Hugs,
Kathy

Kathy
I was just going to add my 2 cents worth but as I went back and read your last post,you pretty much summed it up the way I felt as well.But I love Sharlene's pffttt!:).I felt the same as you when my Golden Kelsey was suspected of having a brain tumor.She had been hospitalized,bill was already up to 5000 and they wanted to do an MRI to confirm tumor which at that time was a few thousand.She was recieving prednisone while hospitalized.I really struggled with having it done vs not but it was my friend who talked me throught it and asked if I had it done and it did confirm a brain tumor,what would I do differently?And the answer was nothing,I would continue with the prednisone.Awful that everything is so expensive but sometimes you have to pick and choose what's really needed and how necessary it is to have it done.I know I'm probaby stating the obvious,but just make sure they add some sort of an antacid to proctect his GI tract.The genius's at Angell did NOT have Kelsey on one and she had a GI bleed.I'll insert one of Sharlene's pfftt here!:D.

I knew you had basically ruled out an MRI and radiation already.
Think of it more as an indignation on the behalf of pet owners in your area, who are faced with difficult decisions that should not be compounded by outrageous price gouging on top of everything else. :mad:

hugs,
Sharlene and Molly Muffin

Sharlene,
You Go Girl!
I would have tried to figure out a way to pay for an MRI at the time of Buddy's neuro consultation, if the cost wasn't so high!!

Neurosurgeon/Vet Update....
My vet just called. He received the email that I had forwarded to him with Dr. B's recommendation. He had just talked with the neurosurgeon from the specialty hospital that had done Buddy's neuro consultation and was faxed her evaluation. She is still recommending an MRI, but realizes that isn't going to occur. He asked her about the Trilo/Prednisone drug protocol for treatment of Macro-tumors. He had heard of it before, but did not know the protocol or dosages and had never tried it. She advised him to put Buddy on a two week trial of Prednisone while monitoring symptoms, then re-evaluate at that time. I will be picking up the RX for the Prednisone tomorrow at my vet and taking it to Walmart or Costco. I get Trilo from Diamondback, but don't need to order such a small amount on-line. The dosage is something like a half of a 5 mg tablet twice a day for a week, then a half of a 5 mg tablet once a day for the second week. I will post the exact dosage after I get the pills tomorrow. My vet is going to be gone a couple weeks in July, so he wants to start the trial right away so he can find the dosage that works the best for Buddy. We might have to tweak it a little until we find the correct dosage. It is a little like trilostane in that way. He said that he wouldn't feel comfortable attempting this at all if I wasn't so knowledgeable. I am knowledgeable because I have all of you!;):)

This is great news, we are so glad you did all that work and follow up :D

We will be keeping everything crossed, fingers and paws that this works out for you and Buddy. :)

You are a wonderful mom :D

I'm glad your vet is on top of everything Kathy. I hope the med combo works out just right for Buddy. I bet your vet is impressed by your knowledge!
:) Barbara

Kathy:
I am so happy that the Dr. is working with you to help Buddy. We are saying prayers that this helps Buddy, and that he has no more tremors. God Bless
Patti