07/05 Shmee - Replys from other day about Acro

[Amanda & Shmee]

Previous condo
Reduced again as of this morning He did not get below 50, but I could tell he really wanted to last night so I followed Wendys advice for higher dose cats which was to decrease when I think he needs it. We shall see.

Ok I finally had the time today to research and try and sort this all out.

@Wendy&Neko, @LuvinThisPig, @Sienne and Gabby (GA), @Ana and Frosty, @Pamela & Amethyst, @Maverick's Mom, @JeffJ and everyone else that has weighed in - thank you all SO much for the helpful information, links, and vines.

I just looked at the Acrotracker google doc link from the Acro sticky, but there aren't many updates from people. I would have loved to see who had the SRT and other treatments, but people seemed to just stop adding to the document a few years ago. I wish this data was all in one place for us to see how many people have got the SRT as well as the Cabergoline all in one spot, to see if the tumors were eliminated / if they went OTJ / how much insulin they dropped to.

@Wendy&Neko @JeffJ - I know the amount of insulin you were using dropped significantly, which is amazing! Do you know what exactly happened to the tumor? Was it eliminated? If so, how do you know? Do they do a final MRI after the treatment?

While researching the past threads I saw Jessica was going to get an echocardiogram before going to CSU for the SRT. But I am confused - an echocardiogram is an ultrasound for the heart. I also saw you also mentioned this in the comments above, that Neko had a heart block during anesthesia. So the echocardiogram is basically a way to be sure the heart is functioning properly before the procedure?

I see that people that have chosen to pursue SRT had high dose cats that were not able to be decreased / were not getting regulated until after SRT. Since Shmee is reacting to insulin well so far, I am wondering if SRT is the right course of action. Yonkers and Pittsburg are both $10,000, Red Bank in NJ is calling me back (I assume also $10,000), and @Ana and Frosty Garden State would not quote me and said I have to bring him in before they talk about any kind of treatment. That is not possible since I am so faraway. If I did do SRT, my only option would be CSU or WSU, which I honestly do not see happening. As much as I wish I could (and I see Wendy and @LuvinThisPig did day long road trips which is amazing!) I cannot imagine doing this with Shmee. He freaks out on the five minute trip to the vet, and HATES the vet. Did you guys give them meds, or were they generally a calm kitties in the car and at the vet? I was freaking out thinking about driving to CO, I can't imagine WA...

Honestly I do not know why I am even thinking about SRT... as much as I would LOVE to get this done for him, I do not have this money by any means. If I really truly needed it done for him, I would try for a bank loan but since he has such a small dose of insulin and it is currently going down on dose, I am leaning towards not getting it done. Which pains me to even say since I know it is the best option, but the Cabergoline seems promising as well so I am torn.

From what I understand = The goal of SRT / stereotactic radiosurgery is to eliminate the tumor / get on a lower dose of insulin / hopefully remission.
Versus Cabergoline which is pain management / get on a lower dose of insulin / hopefully remission.

I didn't realize Cabergoline was so incredibly new. It sounds so promising, especially from experiences on this forum. But it does scare me because even if their insulin needs get lower/down to nothing, what about the tumor? It is still reeking havoc on their bodies? It is so scary to think about! I wish the study from RVC that everyone was anticipating was done better. I don't really even understand why they would go ahead with a study that only involved three cats, but at least they did what they could. The Argentina study of the six cats was very promising too, since it lowered insulin in all six cats. I tried to see if there are any more studies out there yet and I came across this one - Cabergoline in the Treatment of Acromegaly: A Study in 64 Patients. It is for humans and to my surprise was completed in 1998. Is this why RVC wanted to try it in cats, because it was successful in humans?

Final question - what is the significance of the Insulin Like Growth Factor 1 (RIA) number? Shmee's is 369 nmol/L. Does it being higher or lower change anything? I see Wendy said in one of the threads I came across that the number had nothing to do with the size of the tumor but that is the only thing I could find.

Lastly,

Are you seeing your regular vet, or an internal medicine vet?

I definitely understand the feeling of devastation and disbelief. I cried for like 3 days after we realized Frosty probably had Cushing's. The worst was when a fellow PA asked me about how Frosty is doing (he follows his page on Instagram), and I started crying at the nurse's station. About my cat (baby though). I was like "There's probably people here who are dying, and I am crying about a cat!" LOL! Life....

Ana, I swear I am so nervous for this same thing to happen to me! I texted a few close friends on purpose, so I do not have to explain it to them in person and I start crying.
Also, I am just using a regular vet, Tracy (Tracey & Jones) had suggested getting an internal medicine vet before he was diagnosed acro, and I didn't fully understand why since he didn't have other conditions. Now that he has this, I should probably consider looking into an internal medicine vet, right? I am scared of the cost difference would be, and why it would be needed. Other than maybe they will be more on board with this Cabergoline treatment... because my gut feeling is that my vet will not be on board with it. She hates that I follow TR, I can only imagine this possible Cabergoline conversation.


Again, thank you all so much I really appreciate all the kind words and advice. I tell everyone I cannot imagine my life now a days without you all. ​

 

[Amanda and a Loudogg]

Hiya Amanda. I've been thinking about you and Shmee the last few days. Obviously I have nothing to contribute as far as your questions, but I wanted to say hi and send you hugs. Shmee has really been looking fantastic, hasn't he?!

 

[Olive & Paula]

Amanda, I'm in the same boat you are. Just can't afford the SRT. And I don't think Olive would be accepted for it because of her abdominal mass as well as hcm.

I did not find the study from Argentina on 6 cats. Can you provide the link to me? My vets are not going to script cabergoline based on 3 cats. I doubt they will on 6 cats. But I feel cabergoline is worth trying. There just isn't enough evidence to persuade them. It certainly can't hurt. My understanding is that cabergoline can slow down the growth of the tumor, slowing the secretion. In turn can lower insulin dose and possibly the need for insulin. I don't think it eradicate the tumor so it holds it at bay if you will IF cabergoline works.

 

[Tracey&Jones (GA)]

scared of the cost difference would be

Jones IM costs $30 more for a visit versus his regular vet, but mine works with a ton of other IM's and surgeon's and other specialist as they tend to group together in a clinic. So that $30 is more then worth the other expertise I can tap. Also I lucked out as that is all part of a 24 service facility and is where Jones ended up in September when he couldn't breathe. So he got ER care plus his IM was there and took over the case!

I only use the IM when needed and run all the usual stuff through his regular vet.

 

[LizzieInTexas]

I am scared of the cost difference would be, and why it would be needed

Cost runs just a bit more but not a huge jump. The IM I am taking Gizmo to is wonderful. I took Gizmo in for a follow up exam, in-house bw. He spent almost a full hour with us. Cost was $197.50 total. The consultation was $68, the rest was the bw. I suggest you start your research, find one, get a referral from your vet (usually required) and get an initial visit with all Shmee's records on file with them. Then you have established a relationship if/when you may need it. The IM will be more specialized for things like ultrasounds, anesthesia, dental, xrays, etc and also more current with available treatments for issues that are out of the "norm"

See if there is a Blue Pearl hospital close (that is where mine is located) but there maybe other offices that have IM's. Blue Pearl is a 24/7/365 emergency hospital too and is very close to my house.

 

[Wendy&Neko]

I did the same as you, retreated for a while after the diagnosis.

Let's see if I can answer some of your questions. Sorry if it's long. I moved to the computer from the iPad.

I know the amount of insulin you were using dropped significantly, which is amazing! Do you know what exactly happened to the tumor? Was it eliminated? If so, how do you know? Do they do a final MRI after the treatment?

The tumour did shrink. No, there was no MRI at all. Neko's tumour was seen with a CT scan. No follow up CT. I wasn't $1200 curious cause it wouldn't have changed anything I did. The reason I knew it shrank is because Neko went back for a second SRT when the tumour started coming back, hence a subsequent CT scan. So I have a side beside image of the tumours, one 3 years later that was smaller. Let me know if you are curious enough to see the pic. CSU (Colorado State University) told me it could take up to two years after SRT for the full effects to be seen. Having said that, we had one cat here who took 3 years post SRT to go OTJ.

As for facts and figures, the cost of SRT has really slowed the pace of people getting it. WSU's cheaper cost is a fairly recent option. The cost doubled from when I first went (a stretch but doable), to the second time. The second time we only had one day of radiation, which pulled the cost down a lot. So there haven't been a lot of people on here in the time I've been here, that have had SRT. Of the lot, one went OTJ after 3 years. All went to lower doses. Some, just because they are older cats, passed from other things like cancer. At the first time I was there, CSU folks said the average life span after SRT is two years. Remember, they were doing cats as old as 15, so they are mostly older cats. They did do one that was 4 years old not long after I was there. I too wish the Acrotracker was more up to date. Cabergoline usage just started last year. It's really recent.

While researching the past threads I saw Jessica was going to get an echocardiogram before going to CSU for the SRT. But I am confused - an echocardiogram is an ultrasound for the heart. I also saw you also mentioned this in the comments above, that Neko had a heart block during anesthesia. So the echocardiogram is basically a way to be sure the heart is functioning properly before the procedure?

Kitties undergoing SRT have 2-4 days of anesthesia. That's a lot and risky if they have a heart condition. Acromegaly changes can impact the heart (organ growth), so the place doing SRT wants to make sure it's worth your while travelling before you leave.

I see that people that have chosen to pursue SRT had high dose cats that were not able to be decreased / were not getting regulated until after SRT. Since Shmee is reacting to insulin well so far, I am wondering if SRT is the right course of action.

Size of dose or response to insulin is no indicator that harmful excess growth hormone is not still being output. Neko had her first reduction a couple days before we hit the road to Colorado. She had IAA too, making life a bit more complicated. I could have waited until she got better regulated before doing SRT, but in the mean time, growth hormone damage was happening. One kitty that went 3 weeks before Neko was at 17 units before SRT, got up to 50 units in the next 3 months, before he started turning it around. Who knows how high Grayson would have gone without SRT.

As much as I wish I could (and I see Wendy and @LuvinThisPig did day long road trips which is amazing!) I cannot imagine doing this with Shmee. He freaks out on the five minute trip to the vet, and HATES the vet. Did you guys give them meds, or were they generally a calm kitties in the car and at the vet? I was freaking out thinking about driving to CO, I can't imagine WA...

Oddly enough, the first day of our trip to CO we stayed a very short distance from WSU. But they weren't offering that service then. Neko used to freak at the 10 minute trip to the vet. Both DH and I knew it could have been a nightmare, but we couldn't see an option. She calmed down after the first hour. She got Rescue Remedy drops in the AM, and I sprayed her carrier with Feliway spray. Did I mention that Neko's regular vet admitted she was not Neko's favourite person. I saw towels and muzzles go into the room when they wanted to take her blood. Second time around, I flew with Neko. Honestly, it was a long day but so much easier. Of course, my luggage took a later filght. Thankfully Neko's essentials were in my carry on, along with her.

From what I understand = The goal of SRT / stereotactic radiosurgery is to eliminate the tumor / get on a lower dose of insulin / hopefully remission.
Versus Cabergoline which is pain management / get on a lower dose of insulin / hopefully remission.

Not exactly for cabergoline. It's not pain management. The goal is to reduce the amount of growth hormone output, similar to what SRT does. For human acros, medications are a large part of treatments. However, the ones that have been tried to date with cats are either horribly expensive, or just plain haven't worked. Cabergoline is the first relatively affordable one that has helped. But because it's new, there is no long term data. And it doesn't help all as well as SRT generally does.

Final question - what is the significance of the Insulin Like Growth Factor 1 (RIA) number? Shmee's is 369 nmol/L. Does it being higher or lower change anything? I see Wendy said in one of the threads I came across that the number had nothing to do with the size of the tumor but that is the only thing I could find.

There is no assay to test growth hormone output in cats. Plus it's output is variable during the day, so there is no way to measure it accurately. The absolute best way to check tumour size is by CT or MRI, but that's out of my pocketbook. The growth hormone does trigger IGF-1 production in the liver. It's number being higher or lower has nothing to do with size of tumour. There were a few kitties that had SRT just before Neko, all with much larger tumours, and smaller IGF-1 numbers. I asked CSU folks, and they said there is no correlation and hadn't found any significance to the IGF-1 number, other than saying yes to acromegaly. They also said not to bother retested IGF-1 after SRT, because there might not be a change. Julie's punkin's number actually went up after SRT. Rather disheartening.

As for IM vet, I didn't right away. When I got the acro/IAA diagnosis, my vet wanted to refer me to an IM vet for a diagnosis and treatment plan. Well, I knew the diagnosis and my treatment plan involved going to CSU which had the researchers which knew more about acromegaly than anyone else in North America at the time. And I was going to pay a couple hundred for the local IM to tell me what I knew. Once Neko got more complicated, I agree that an IM vet would help, and he did. They are great at managing multiple conditions or conditions the regular vet doesn't know about. Having said that, what I've seen here is that not all IM vets know what to do about acromegaly.

 

[Ana & Frosty (GA)]

Great question about why see an Internal medicine (IM vet) vs a regular vet! As you saw, your regular vet didn’t know much about the condition, and said s/he did some research. That’s very commendable, but an IM vet has a lot of hands on experience and knowledge with (relatively) rare conditions, such as Acromegaly. My (old) regular vet looked like deer in headlights when I mentioned Cushing’s in a cat, and flat out said she had no clue about how to dose a cat on the medication. Even the ER vet , although she recognized frosty’s condition, didn’t even know if there were medications for cats. The IM vet was like a breath of fresh air! Not only did she know the treatment, she knew all the dosing AND the differences between treating dogs and cats (and they are significant). She was able to give me treatment options, other possible diagnoses (before we did the work up), and prognosis information. She was also really thorough and supportive. I didn’t feel like I was being rushed out the door.

Cost is double for an IM consultation vs. regular vet visit here in NJ. BUT, worth every penny! I only had 1 consultation with the IM vet, and then we just scheduled needed tests, and talked on the phone. I paid hundreds of dollars on my regular vet visits when I knew something was wrong, and they couldn’t figure it out. I wish I took him to the IM vet sooner.

I hope this helps!

 

[Wendy&Neko]

Of course I forgot something. The original goal of the cabergoline research was to reduce the IGF-1 output. SRT or any other radiation does not do that. The testing of IGF-1 during the cabergoline study did not show a decrease, so in that respect it failed. However, the dose going down does mean the growth hormone output is being reduced.

 

[Chubba (GA)]

Just to add onto Wendy’s comment ... We had Gizmo’s IGF1 retested as his insulin needs were dropping and his IGF1 number actually rose.

 

[Ana & Frosty (GA)]

Oh, Garden state told me around $6,000 for the radiation treatment if Frosty had Acro. I can’t remember if it’s including the MRI (I want to say yes?). I’m under the impression that they are slightly cheaper than Red Bank, which is why I took my other cat Bella there for her back problems, and now Frosty goes there. I really trust them too bc they talked me out of getting a back MRI for bella (twice). She’s alive and well over a year later, with a slight limp. So they saved me like 2 grand.

I work right near the animal hospital, and one of the nurses I worked with told me to go to GS bc it was cheaper. I think even their consultation is $10 cheaper than RB. I know that’s a minute difference in the grand scheme of things, but at this point with our special needs pets every dollar counts.

As for car anxiety, Frosty is a BEAST in the car, and GS is an hour drive! Screaming, peeing immediately all over my seats, pooping, and panting. I keep forgetting to ask dr Demarco for some kitty Xanax or something. He’s completely out of control, but he’s a pretty high strung guy due to the Cushing’s (I think he has steroid induced psychosis. LOL) so I kind of just deal with it. I also listen to a lot of hard rock. Hahaha.

 

[JeffJ]

There are a lot of answers already. With Leo, his Acro tumor has like gone away or receded. Like Wendy, I do not intend for another CRT just to find out.

Leo's SRT was Sept/Oct 2016.
He was 18.0 units/dose, and not even regulated at that.
He is 3.0 - 4.0 units/dose last month.
He is in the 1.5 - 2.5 units/dose range this week (1.8 years post SRT). I hope that continues. Who knows, he may have pancreatic diabetes as well. And he gets daily prednisolone (gluticosteroid). So that causes sugar imbalance.

Cheapest SRT is WSU like Wendy said. By the time you fly there, etc - it will probably cost you $3,000. So it is expensive.

 

[Amanda & Shmee]

I did not find the study from Argentina on 6 cats. Can you provide the link to me? My vets are not going to script cabergoline based on 3 cats. I doubt they will on 6 cats. But I feel cabergoline is worth trying. There just isn't enough evidence to persuade them. It certainly can't hurt. My understanding is that cabergoline can slow down the growth of the tumor, slowing the secretion. In turn can lower insulin dose and possibly the need for insulin. I don't think it eradicate the tumor so it holds it at bay if you will IF cabergoline works.

No problem Paula, see attached. I came across it from one of Wendy's threads she gave me from my previous condo.

Size of dose or response to insulin is no indicator that harmful excess growth hormone is not still being output. Neko had her first reduction a couple days before we hit the road to Colorado. She had IAA too, making life a bit more complicated. I could have waited until she got better regulated before doing SRT, but in the mean time, growth hormone damage was happening.

This was a little confusing to me but I am not really sure why. I will try to explain.
So with cabergoline, the insulin levels are dropping which is good but the cat is still getting harmful growth hormones which is not good... I was under the impression the tumor was being affected negatively in some way with the cabergoline. I guess it is, just not as much as one would hope, like with the SRT? That seems to be the major difference between the cabergoline and the SRT - the SRT eliminates the growth hormones, but we aren't sure exactly what the cabergoline is doing to the body/tumor, other than lowering insulin levels?

Jones IM costs $30 more for a visit versus his regular vet, but mine works with a ton of other IM's and surgeon's and other specialist as they tend to group together in a clinic. So that $30 is more then worth the other expertise I can tap. Also I lucked out as that is all part of a 24 service facility and is where Jones ended up in September when he couldn't breathe. So he got ER care plus his IM was there and took over the case!

I only use the IM when needed and run all the usual stuff through his regular vet.

Cost runs just a bit more but not a huge jump. The IM I am taking Gizmo to is wonderful. I took Gizmo in for a follow up exam, in-house bw. He spent almost a full hour with us. Cost was $197.50 total. The consultation was $68, the rest was the bw. I suggest you start your research, find one, get a referral from your vet (usually required) and get an initial visit with all Shmee's records on file with them. Then you have established a relationship if/when you may need it. The IM will be more specialized for things like ultrasounds, anesthesia, dental, xrays, etc and also more current with available treatments for issues that are out of the "norm"

See if there is a Blue Pearl hospital close (that is where mine is located) but there maybe other offices that have IM's. Blue Pearl is a 24/7/365 emergency hospital too and is very close to my house.

As you saw, your regular vet didn’t know much about the condition, and said s/he did some research. That’s very commendable, but an IM vet has a lot of hands on experience and knowledge with (relatively) rare conditions, such as Acromegaly. My (old) regular vet looked like deer in headlights when I mentioned Cushing’s in a cat, and flat out said she had no clue about how to dose a cat on the medication. Even the ER vet , although she recognized frosty’s condition, didn’t even know if there were medications for cats. The IM vet was like a breath of fresh air! Not only did she know the treatment, she knew all the dosing AND the differences between treating dogs and cats (and they are significant). She was able to give me treatment options, other possible diagnoses (before we did the work up), and prognosis information. She was also really thorough and supportive. I didn’t feel like I was being rushed out the door.

Cost is double for an IM consultation vs. regular vet visit here in NJ. BUT, worth every penny! I only had 1 consultation with the IM vet, and then we just scheduled needed tests, and talked on the phone. I paid hundreds of dollars on my regular vet visits when I knew something was wrong, and they couldn’t figure it out. I wish I took him to the IM vet sooner.

I hope this helps!

Having that "community network" of IMs seems wonderful and totally worth the money, as well as just someone that understands these conditions better. I remember my vet consulting an IM around here when Shmee needed the bloodwork for the IAA test, because MSU told her we needed to fast for 12 hours and I was not going to. The IM told her there was virtually no need for the IAA test, so I kind of lost faith in her IM colleague at that point. I wish I could be like "I would like an IM referral, but not the same guy that said my IAA test wasnt needed"... haha. And Shmee doesn't have other conditions (that I know of), so he only gets "usual things" done. Other than this acro dx now. Unfortunately there is not a Blue Pearl around here, the closest is two hours away.

Did I mention that Neko's regular vet admitted she was not Neko's favourite person. I saw towels and muzzles go into the room when they wanted to take her blood. Second time around, I flew with Neko. Honestly, it was a long day but so much easier. Of course, my luggage took a later flight. Thankfully Neko's essentials were in my carry on, along with her.

Haha same for Shmee, he would not let them take blood so I had to stay back there last time to help hold him down. Ugh it was horrible.
Oh no of course you didnt get your luggage on time! After all that hassle... I cannot imagine. I am glad you brought up the plane ride. DH and I were talking about that. I think a plane ride would probably be less stress for him, but I also have no idea how the logistics of that would go. Did she get to stay with you in the seat? I am not familiar with how cats fly. Do they have to be area underneath where the dogs go? Was she on medication to knock her out at all or just groggy?

Of course I forgot something. The original goal of the cabergoline research was to reduce the IGF-1 output. SRT or any other radiation does not do that. The testing of IGF-1 during the cabergoline study did not show a decrease, so in that respect it failed. However, the dose going down does mean the growth hormone output is being reduced.

Just to add onto Wendy’s comment ... We had Gizmo’s IGF1 retested as his insulin needs were dropping and his IGF1 number actually rose.

What is the difference between IGF-1 and the growth hormones? Forgive me I am still a little confused about this part. I thought you said before this that the specific IGF-1 number didn't really matter? And since Gizmo went OTJ it seems like the IGF1 number rising didn't really have an affect?

 

[Olive & Paula]

No problem Paula, see attached. I came across it from one of Wendy's threads she gave me from my previous QUOTE]

The attached is the 3 cat study. Do you have the 6 cat study.

 

[Wendy&Neko]

For flights, there ar a few airlines that let you bring a pet in a carrier into the passenger cabin. Neko was under the seat in front of me for the flight. The airlines usually limit the number of pets per flight. Book a middle seat if you can, more room. Airlines also limit the size of carriers as it has to fit under the seat. I got a soft sided one. The only meds for Neko was Rescue Remedy in the AM, and Feliway sprayed in her carrier. Plus I put a catnip toy in the carrier with her.

The growth hormone production is from the pituitary gland. It controls a number of things in the body, including increasing blood glucose. It also stimulates IGF-1 production by the liver. Both cabergoline and SRT lower growth hormone output. But IGF-1 output does not seem to be impacted by either. IGF-1 is involved it cell growth.

 

[Marje and Gracie]

Amanda

Sorry to just get to you now, I’ve been away from the board on a family emergency. If you still want me to look at labs, please just let me know. Just tag and I’ll check back later. If you got the info you needed from other members, awesome!