Sticky Note Overhaul - Need your feedback

Wendy&Neko

Wendy&Neko

Very Active Member
Moderator
images


It's time I finally bit the bullet and did some overhaul of the Sticky Notes in this forum. I need your help telling what you'd most like to see. Besides fixing broken links and updating to reflect current knowledge, I am planning on expanding the Dosing Sticky and adding a lot of information on treatments. Tell me what else you'd like to see.

I'm debating organizing information by condition, acromegaly, IAA or Cushings, or by process - description, diagnosis, treatment. What would work best for you?
 
Thank you so much, Wendy! Is there a way to do the breakdown by condition and then within each do the description, diagnosis, treatment? When Howie first had just IAA, there was little info. I would also suggest info on testing...especially the 73-day timeline for IAA and Acro. And putting info out about using R would be useful for high dose kitties (of course with the caution that people need a coach to get started). I didn’t even know that was a “thing” until I was so frustrated with high doses and no movement and I happened to post on here if there was anything else to consider doing. You are so kind to all of us!
 
Sounds like you are in favour of organizing by condition, that was one of the options. And good on the reminder of the 73 days, I'll add that to the testing bit for acromegaly. I've actually done a draft of the dosing sticky rewrite that mentions R.
 
Wendy&Neko said:
Sounds like you are in favour of organizing by condition, that was one of the options. And good on the reminder of the 73 days, I'll add that to the testing bit for acromegaly. I've actually done a draft of the dosing sticky rewrite that mentions R.
Click to expand...
Too bad Robert couldn’t do some data/word analysis of FAQs that always come up to know what else would be good to include. I know you answer the bulk of all our constant questions and it must feel like Groundhogs Day when the same question pops up as more kitties are diagnosed! Thanks for being our rock!
 
I think I would find the sorting by condition most useful with the subcategories that you mentioned. I can't wait to read any/all of your work. Thank you soooo much for doing this (and for all of the regular help, of course!) Where would our kitties be without you?!

Is there any information on how the Cabergoline actually works to reduce the growth hormone. I like to know how these things actually work and this is the first medication that I've given one of my cats where I don't know the mechanism of action.
 
Wendy, that is awesome. I have been wondering if there has been an actual increase in these diseases over the last decade and why that might be. It is hard to believe it is just that there was an absence of testing or knowledge. Anyway, I imagine as you do the overhaul, an optimal organization will probably materialize organically. Maybe after all is done, a summary page sticky might be helpful as a jumping off place. There are some things in common, like testing for IGF-1 and IAA at the same time, differences btw acro and Cushings but they have similar treatments, that kind of thing. You know best. Thank you for all your help with Kierra, it has been a godsend.
 
Diane and Kierra said:
I have been wondering if there has been an actual increase in these diseases over the last decade and why that might be.
Click to expand...
It's possible, or it could be just that people know to look for it now. Neko's acupuncture vet was all keen the first time I saw her, and had a bunch of articles on acromegaly she had just read and thought Neko was her first acro. After talking with her, she realized the neighbourhood stray she'd rescued a number of years previously had probably had acro. Ditto Neko's general practice vet, diagnosed another one shortly after Neko was diagnosed, also her "first". There's also been an increase in the number of cats diagnosed with hyperthyroidism - speculation again is something in the environment. Sort of the "canary in the coal mine".
 
Wendy&Neko said:
It's possible, or it could be just that people know to look for it now. Neko's acupuncture vet was all keen the first time I saw her, and had a bunch of articles on acromegaly she had just read and thought Neko was her first acro. After talking with her, she realized the neighbourhood stray she'd rescued a number of years previously had probably had acro. Ditto Neko's general practice vet, diagnosed another one shortly after Neko was diagnosed, also her "first". There's also been an increase in the number of cats diagnosed with hyperthyroidism - speculation again is something in the environment. Sort of the "canary in the coal mine".
Click to expand...

Are the treatments for Cushings and Acromegaly the same?
 
Not a simple question. There are three causes of Cushings, just one is a pituitary tumour. The other two are adrenal tumour and overdose of steroids. The pituitary tumour one is the more common. Treatment depends on type of Cushings. There are, as in acromegaly, multiple treatments. Removal of the pituitary is one and that can also work for acromegaly.
 
Wendy&Neko said:
Not a simple question. There are three causes of Cushings, just one is a pituitary tumour. The other two are adrenal tumour and overdose of steroids. The pituitary tumour one is the more common. Treatment depends on type of Cushings. There are, as in acromegaly, multiple treatments. Removal of the pituitary is one and that can also work for acromegaly.
Click to expand...
That’s interesting. Thank you. I have only read about the adrenal type and the steroid induced type, as I recall.
 
Maybe this is crazy thinking but another thought I had about possible increase in acro cases in past decade(s) may be too early sterilizations? I know rescue groups commonly have a two pound minimum guideline - to neuter or spay once the weight is two pounds or more. I think waiting until they are 4 months (or 6 months if possible) is better to allow for hormonal driven development. I wonder if sterilizations mess everything up including the pituitary.
 
Neko was about 7 months old when she got spayed. You might be interested in this post:
Interesting article about chemicals in households possibly causing acro

Diane and Kierra said:
A synopsis of what we know so far about effectiveness of cabergoline?
Click to expand...
Do you mean we at the FDMB or in general? I wonder is someone out there is interested in doing the digging to look this up so we could document it? We haven't done any formal research here. You might want to read this post, and maybe contact the researchers that Tillie did?
 
Yes, I mean FDMB but in general would be good to although I doubt there is much out there. I am not interested in digging into it at this point nor have that kind of researching expertise to do it justice. Dr. Owen from WSU (FYI - who knows nothing about cabergoline) sent me this dismal paper on cabergoline dated 2020.
 

Attachments

Wendy&Neko said:
Neko was about 7 months old when she got spayed. You might be interested in this post:Interesting article about chemicals in households possibly causing acro
Click to expand...
Do you have access to download the full paper? https://pubmed.ncbi.nlm.nih.gov/23672960/

I don't know Kierra's history - I adopted her when she was two. Could be her previous owners used a lot of chemicals or had toxic carpet/furniture or who knows. I keep that to a minumum here, no carpet or furniture with toxic emissions as far as I know and I try to stay away from toxic cleaners. I do use a dilute bleach solution to clean clingons in the litter box walls (per Dr. Lisa's instructional).
 
Diane and Kierra said:
Yes, I mean FDMB but in general would be good to although I doubt there is much out there. I am not interested in digging into it at this point nor have that kind of researching expertise to do it justice. Dr. Owen from WSU (FYI - who knows nothing about cabergoline) sent me this dismal paper on cabergoline dated 2020.
Click to expand...
Ugh...just read what I could understand of this paper. That is not good news. I did find it interesting that they had the cats eating Purina Diabetic food (assuming dry?). I know that has nothing to do with the IGF-1 results, but it seems like it would definitely affect the fructosamine results.
 
Howiesmom said:
Ugh...just read what I could understand of this paper. That is not good news. I did find it interesting that they had the cats eating Purina Diabetic food (assuming dry?). I know that has nothing to do with the IGF-1 results, but it seems like it would definitely affect the fructosamine results.
Click to expand...
I am skeptical of the study, but just a gut feeling. Good point about the food. A big variable is also the level of at home care, right? My impression from those using cabergoline on this FDMB that it has helped some (not sure what percent) and so that is proof enough to try it. These vets and researchers are stuck on what is "published" info IMHO. I guess they are more restrained because of the profession. Proof is in the pudding. I have mentioned the FDMB as a place of lots of real-life info to the folks at WSU but I doubt they have come here to check it out.
 
Last edited:
I wouldn't put down the RVC paper - the biggest issue is their objectives and size of the study. From that paper "This is the largest case series to date to describe cats with HST and DM treated with cabergoline" - well, as long as you don't count the South American group that has looked at over 50 cats now, compared to 9. :rolleyes: They at least acknowledge that the South American work, back when it was 3 cats and that the South American study had different results. And that their may be some characterization of the tumour that makes it work better in some cats vs others. Also note, the goal of the RVC research was to find a drug that lowers IGF-1. With that as an objective, the study failed - in the cats they had. At the time of the research, we did let then know about Marvin who had gone OTJ on cabergoline.

In (2020) Updates in Feline Diabetes Mellitus and Hypersomatrotropism, one of the authors the same person as in the RVC 2020 paper above, Case 2 lists cabergoline as a possible treatment, the only one that isn't expensive but that more research needs to be done. For many people on FDMB, none of the expensive treatments is an option, leaving no treatment or cabergoline as the options. We've had more than 9 people try it here - but maybe one that had the IGF-1 retested.

Of more importance than the DM (the wet is OK as a low carb food, just not great quality ingredients), is that most of the people in the UK were likely using either Prozinc or Caninsulin. That would definitely impact the fructosamines.
 
I wonder if there could be a thread created for the folks using cabergoline to describe their experiences (like was done for the three kitties post-surgery)?
 
Wendy&Neko said:
I can unlock this one, or you can start a new one with a pointer to it: Cabergoline as a possible treatment for acrocats: discussion
Click to expand...

I hadn't seen this before. Why does this forum make me want to make more coffee? :coffee:

Wendy&Neko said:
Did you see my answer on post #14?
Click to expand...

I can do that but I don't have Dr. Elber's contact info. Sometimes I long for a "in a nutshell" answer. For Marvin who went OTJ on cabergoline, does that mean he no longer needs cabergoline or is it a lifelong deal? And if it doesn't help, does it do harm or do you just stop giving it? I imagine the answers are somewhere in these long threads that take forever to get through. I need more coffee. :coffee:
 
Marvin has since passed, he was on cabergoline to the end, can't remember if they went to EOD dosing. You want to ease off cabergoline, not just stop it cold turkey.

Maybe Tillie could get you Dr. Elber's contact info if you PM'ed her.
 
Wendy&Neko said:
Marvin has since passed, he was on cabergoline to the end
Click to expand...
After I posted, I checked out Marvin's ss and searched on Marvin's Mom - Nat and saw that he passed. So sad, I had a good cry. Crying for her loss and also wondering how long Kierra has. From what I can see here, it seems like acrocat lives are not very long and thinking about that breaks my heart. The last heading for cabergoline in Marvin's ss was for week 7 just prior to his OTJ which made me think cabergoline was discontinued but now I see a post from a few months after Marvin went OTJ about him still getting cabergoline. Sad he only lived 5 more months after going OTJ.
 
Last edited:
It's hard to predict with acros. I've seen cats get SRT and last less than a year after, and then there is Lily - lived 4.5 years after dx, got over 50 units, went OTJ, no treatment but insulin. Check out her last post and the SS.
 
Suzanne & Darcy said:
Neko lived a long time after the first SRT from 2012 to 2016.
Click to expand...
I think it was two SRTs and 4.5 yrs from dx to EOL for Neko? Regardless, 4+ years is a good amount of "extra" time since without treatment it would be 1-2 years maybe, IDK, although there is no guarantee even with treatment that it will be any longer. Compared to the natural life they could live though (without the acromegaly), it is too short! I know, I am not being real but Kierra is only 9 years old. So we'd be lucky if she gets to 13 I guess. Ugh, this is too hard to think about. :(
 
Oh yes, Diane. I understand what you are feeling. Some days I am very sad. My heart is so grieved sometimes when I look at my sweet Darcy and think about this. I am crying as I write this. Right now, “the fight” is keeping me going. The time we have with them is never long enough
 
@Wendy&Neko

It's some undertaking. It does seem a lot of kitties have other issues besides FD and acro. Acro itself causes a lot of other problems. I had Ollie retested after 1 yr. Her value went up.
 
Olive & Paula said:
@Wendy&Neko

It's some undertaking. It does seem a lot of kitties have other issues besides FD and acro. Acro itself causes a lot of other problems. I had Ollie retested after 1 yr. Her value went up.
Click to expand...
I have asked my vet to make the referral to NC State for SRT. I'll see what their schedule is. Still have no idea how I am going to pay for this, but going ahead and will try to figure something out.
 
Wendy&Neko said:
I can unlock this one, or you can start a new one with a pointer to it: Cabergoline as a possible treatment for acrocats: discussion
Click to expand...

After looking through the link I had an idea. In general, it takes a lot of time to wade through these threads (condos?) and it is hard emotionally too. I often find myself tearing up at the sad stories. My idea is to do a survey for the specific condition. Some questions might be subjective or unanswerable but might still be useful to include for perspective. The goal being to find out how the treatment went regarding quality of life and life extension, dosing, side effects, and general helpful information from other's experiences.
Here are some possible questions for a cabergoline survey:
date of acro dx:
start date of cabergoline:
cabergoline dose(s) used:
insulin dose at start of carbergoline trt:
other trts used prior to and/or during cabergoline trt?
insulin dose reduced? Y/N if yes, how long after starting cabergoline?
were there any side effects experienced (diarrhea, inappetence, vomiting, etc)?
if GA, date of EOL:
do you think kitty's quality of life was improved?
do you think kitty's lifespan was likely increased?
are you happy with your choice to treat with cabergoline?
would you have done anything different in hindsight?
other observations, comments, thoughts:
 
What you might want to do is create a Google Doc or Sheet with those questions in it. Then people can add to it as time goes by. Sort of like the Acro Tracker spreadsheet.
 
Wendy&Neko said:
What you might want to do is create a Google Doc or Sheet with those questions in it. Then people can add to it as time goes by. Sort of like the Acro Tracker spreadsheet.
Click to expand...
I am not the best person to do this since I am not familiar enough with cabergoline to know what questions would be relevant. I was just sharing an idea I had. I also don't know how to create a google doc or sheet so people can add to it. Is there a Acro Tracker spreadsheet? I haven't heard of it before.
 
But you are approaching things from a person who wants to know about cabergoline. What you want to know would probably be similar to others considering it for the first time.

Cabergoline as a possible solution came too late for us, I have no experience with it.
 
Hi @Wendy&Neko

Not sure if you are doing a Sticky on Cabergoline, but I reached out to Dr. Elber again on behalf of @Diane and Kierra and wanted to share his reply with the group. I contacted him through ResearchGate which I have a subscription for through work. Here is his latest information:

Hello, thanks for sharing and for the interest in the use of cabergoline in cats with acromegaly. In Argentina it is currently the only treatment available. We have a group of 25 cats with HS/acromegaly of which 19 also had diabetes mellitus. We did not find a significant decrease in IGF1 with cabergoline, but a better glycemic control with lower fructosamine and insulin doses. Seven of the diabetics achieved remission. Therefore we believe that cabergoline is useful in the control of diabetes mellitus especially in cats with smaller pituitary glands and IGF1 closer to 1000. Adverse effects observed in the 6 month period were hypoglycemia and moderate increase in liver enzymes in very few cats. We have not evaluated survival with cabergoline, so we do not know if it significantly extends life, but yes, improving glycemic control improves quality of life.
 
Thanks Tillie! I'd love to know if they have this published anywhere. A lot of vets seem reluctant to prescribe cabergoline and have only read the disappointing RVC results on a handful of cats. Or maybe Dr. Eber is willing to have vets contact him? Also interesting that pituitary size and IGF-1 number play into this. If we put together a spreadsheet, that info should be included.
 
Wendy&Neko said:
Thanks Tillie! I'd love to know if they have this published anywhere. A lot of vets seem reluctant to prescribe cabergoline and have only read the disappointing RVC results on a handful of cats. Or maybe Dr. Eber is willing to have vets contact him? Also interesting that pituitary size and IGF-1 number play into this. If we put together a spreadsheet, that info should be included.
Click to expand...
This reminded me of something in an email that Dr. Owen from WSU sent me "IGF-1 post-operatively can be a predictor of prognosis with reduction to normal within 4 weeks post-surgery being a positive indicator. I am not aware of any studies correlating the pre-op IGF-1 level to tumor size or prognosis."
 
Diane and Kierra said:
I am not aware of any studies correlating the pre-op IGF-1 level to tumor size or prognosis
Click to expand...
The folks at Colorado State University told me there is no correlation between tumour size and IGF-1 number. Two cats that had SRT near the time of Neko, and had a CT scan to measure the tumour, both had much larger tumours, and smaller IGF-1 numbers.
 
Wendy&Neko said:
But you are approaching things from a person who wants to know about cabergoline. What you want to know would probably be similar to others considering it for the first time.
Click to expand...
I threw it out there as a possible idea for a sticky note. If it is of interest, I think it would be good for a small group to draft the survey questions, maybe some of the folks that have actually used cabergoline and someone with survey writing skills maybe if there is someone like that here.
 
Just some ideas for new members. Getting them to read them is another matter, good luck.
- The idea that feline diabetes is not well taught in veterinary colleges just seems so ludicrous to most people. That ends up in direct conflict with two things. The first is accepting medical advice from the internet and the second is questioning authority. There's someone in a lab coat, degrees on the wall telling you not to test, curves can only be done at the vet etc. I find most of this to be a matter of trust that can be hard to swallow. "We're your new best friends, we know better, we've been doing this a long time". That also goes hand in hand with vet induced guilt as in "If you really loved this cat you'd be spending all this money" which took me years to get over.
It took me over a year before I actually read Austin's story, it matters because it's why we're here and can be trusted.
- Please PLEASE fill in your profile with preexisting conditions, other animals in the home, your financial limitations. Even your location and subsequently your time zone can mean a lot in a 911 situation.
- I know how to convert between U40 and U100 but where that chart is remains a mystery. Maybe that's a bad example but I have seen stickies relevant to all cats buried in only the ProZinc forum.
Funny I just watched an episode of Hoarders, are we paying you enough Wendy?
 
Who is Dr. Eber (Elber?) An Argentinian vet, obviously, but where does he work? What are his credentials?

It would be interesting to know what the average number of days were that it took to start seeing better glycemic control. It seems to be quite variable from cat to cat (here on the board, that is.)
 
Last edited:
Suzanne & Darcy said:
Who is Dr. Eber (Elber?) An Argentinian vet, obviously, but where does he work? What are his credentials?

It would be interesting to know what the average number of days were that it took to start seeing better glycemic control. It seems to be quite variable from cat to cat (here on the board, that is.)
Click to expand...

Dr. Elber A Soler Arias, MV, Sp is the main author of the 2017 Argentinian study of successful results of cabergoline. https://www.researchgate.net/profile/Elber-Soler-Arias
 

Attachments

Tillie and Valentino said:
Hi @Wendy&Neko

Not sure if you are doing a Sticky on Cabergoline, but I reached out to Dr. Elber again on behalf of @Diane and Kierra and wanted to share his reply with the group. I contacted him through ResearchGate which I have a subscription for through work. Here is his latest information:

Hello, thanks for sharing and for the interest in the use of cabergoline in cats with acromegaly. In Argentina it is currently the only treatment available. We have a group of 25 cats with HS/acromegaly of which 19 also had diabetes mellitus. We did not find a significant decrease in IGF1 with cabergoline, but a better glycemic control with lower fructosamine and insulin doses. Seven of the diabetics achieved remission. Therefore we believe that cabergoline is useful in the control of diabetes mellitus especially in cats with smaller pituitary glands and IGF1 closer to 1000. Adverse effects observed in the 6 month period were hypoglycemia and moderate increase in liver enzymes in very few cats. We have not evaluated survival with cabergoline, so we do not know if it significantly extends life, but yes, improving glycemic control improves quality of life.
Click to expand...
.... I've been thinking about this.... how does the cabergoline actually work? How does it help the cat to achieve better glycemic control if it does not do this by lowering the IGF-1 level? This does not make sense to me. You would think that cabergoline acts upon the pituitary tumor to cause it to release less IGF-1, therefore allowing for better glycemic control.
 
Okay, so I am reading that Cabergoline is a dopamine agonist and I am reading all about those now and how they work. I have heard of their use in Parkinson's disease before, but I did not realize that Cabergoline was one of these drugs. Y'all probably already knew this.
 
Last edited:
Tillie and Valentino said:
Hi @Wendy&Neko

Not sure if you are doing a Sticky on Cabergoline, but I reached out to Dr. Elber again on behalf of @Diane and Kierra and wanted to share his reply with the group. I contacted him through ResearchGate which I have a subscription for through work. Here is his latest information:

Hello, thanks for sharing and for the interest in the use of cabergoline in cats with acromegaly. In Argentina it is currently the only treatment available. We have a group of 25 cats with HS/acromegaly of which 19 also had diabetes mellitus. We did not find a significant decrease in IGF1 with cabergoline, but a better glycemic control with lower fructosamine and insulin doses. Seven of the diabetics achieved remission. Therefore we believe that cabergoline is useful in the control of diabetes mellitus especially in cats with smaller pituitary glands and IGF1 closer to 1000. Adverse effects observed in the 6 month period were hypoglycemia and moderate increase in liver enzymes in very few cats. We have not evaluated survival with cabergoline, so we do not know if it significantly extends life, but yes, improving glycemic control improves quality of life.
Click to expand...
I, like @Wendy&Neko, would like to know if they've published this data anywhere (or if they plan to publish). The study you linked below (thank you!) is the one about three cats. This is a larger group of cats.
 
You must log in or register to reply here.
Back
Top