? 4/12/21 Kierra's 2nd IGF-1 test

[Diane and Kierra]

Her 1st IGF-1 test over 2 months ago was 393 (blood draw Jan 19). Her 2nd test (blood draw Apr 1) is 440. Anyone know if that is a significant change? Or maybe it is good news that is hasn't changed that much?

 

[Wendy&Neko]

I've seen bigger changes. Why did you retest?

 

[Diane and Kierra]

I've seen bigger changes. Why did you retest?

To confirm the test and also see if there had been any changes.

 

[Suzanne & Darcy]

How is Kierra doing?

 

[Wendy&Neko]

I've not seen someone ever have a false positive. And changes are likely over time, but don't really mean anything that I know of.

 

[Diane and Kierra]

How is Kierra doing?

I think she is doing pretty good. We are starting to see more response to the Lantus. Her weight seems to have leveled off at around 17 pounds after a big weight gain that was concerning. Her coat is looking really good. She is staying more hydrated (I haven't given fluids in quite a while). She is not as ravenous but still has a healthy appetite. The vet wants to do a CT scan which we might do, not sure yet. We are trying a stem cell activator/immune strengthening product. We have done one round and are starting on another round this week. It is about 20 IM injections given over 4 weeks time. It is something Dr. Deva Khalsa has had good success with on some cancers but has not tried with acromegaly before. Truthfully I don't know what is helping. We are also doing other things like acupuncture, some supplements including Xiao Ke Fang, Ramaeker's nutrition powder, B12+folic acid, some standard process supplements like pancreatrophin pmg. I do some daily acupressure work too. Here is a link to an article by Dr. Khalsa on the stem cell therapy: http://www.doctordeva.com/wp-content/uploads/AW_V20I4_Stem-cell-secrets-1.pdf

 

[Diane and Kierra]

I've not seen someone ever have a false positive. And changes are likely over time, but don't really mean anything that I know of.

I mostly was hoping to see a decrease in response to the stem cell therapy. Are you saying a change in the number doesn't mean anything, like if it went from 500 and to 200 even? Wouldn't that mean something or would it reflect the variation that happens with the tumor. Guess is was a waste of $155 USD.

 

[Suzanne & Darcy]

I think she is doing pretty good. We are starting to see more response to the Lantus. Her weight seems to have leveled off at around 17 pounds after a big weight gain that was concerning. Her coat is looking really good. She is staying more hydrated (I haven't given fluids in quite a while). She is not as ravenous but still has a healthy appetite. The vet wants to do a CT scan which we might do, not sure yet. We are trying a stem cell activator/immune strengthening product. We have done one round and are starting on another round this week. It is about 20 IM injections given over 4 weeks time. It is something Dr. Deva Khalsa has had good success with on some cancers but has not tried with acromegaly before. Truthfully I don't know what is helping. We are also doing other things like acupuncture, some supplements including Xiao Ke Fang, Ramaeker's nutrition powder, B12+folic acid, some standard process supplements like pancreatrophin pmg. I do some daily acupressure work too. Here is a link to an article by Dr. Khalsa on the stem cell therapy: http://www.doctordeva.com/wp-content/uploads/AW_V20I4_Stem-cell-secrets-1.pdf

Wow. You are trying a lot of different things. I'm happy to hear that she seems well, has a good appetite and that he weight has stabilized. You are doing so much for her. I bet your love and good care is paying off. I can see how much you LOVE her. It's beautiful.

 

[Wendy&Neko]

I know what it feels like to be helpless to help your cat with a disease, and to want to try anything and everything. However, my approach is and has been science based.

There has been no research that I know of on stem cells an acromegaly. Acromegaly is not cancer but a benign tumour. In fact, just found an article saying stem cells are useless on the pituitary gland. Neko went to a vet clinic for her acupuncture where they did stem cell work, it was not something they even discussed as a possibility. Neko did get acupuncture and acupressure from me daily, when her arthritis got so she needed it so those are good tools to continue giving.

To me it sounds like the vet is wasting your money that could otherwise go towards either cabergoline or something that has been proven to work with acros. I would NOT get a CT scan unless you either like spending money or are going forward with treatment such as SRT or surgery. Besides the cost, it's an extra anaesthesia and with acros I wouldn't do that unless there was a good reason for it.

The standard process pancreas supplement is also a waste of money. Acros often have a working pancreas, it's the pituitary tumour that is overwhelming the insulin put out by the pancreas. Remember, Kierra is a different kind of diabetic. The treatments your vet is experimenting with seem to be focussed on an animal with a damaged pancreas. The focus should be the pituitary instead.

 

[Suzanne & Darcy]

I don't know a whole lot about stem cell therapy in animals. I do have a friend who rescued a cat with a shattered leg. The vet used stem cell infusions from the kitty's own body on the leg, and it healed completely.

My only other experience with stem cell therapy is that my brother had ALS. He and my sister-in-law went to Thailand in 2018 for him to receive stem cell infusions (harvested from his own stem cells, I believe). This was to help the ALS. It did not, and we lost him January 2019.

I suppose one day we will do a lot of good with stem cells. I'm sure it's a promising therapy for some conditions (that and gene therapy).

 

[Tomlin]

I see that you are in WA . I wanted to provide you an additional resource that may be of help to you and your vet.

You actually have the first vet in the U.S. to have performed the transsphenoidal hypophysectomy working in your state. Dr Tina Owen first performed the surgery in LA but then later moved to WSU. At one point, WSU was the only vet hospital in the U.S. performing the surgery, but now additional hospitals are doing it. She trained the vet in my area (UF) to do the surgery & they are about to start doing the surgeries as well. Like WSU, the goal will be a comprehensive Pituitary Center to not only provide surgery, but also to provide and to study additional treatment options given that surgery is not always an option. It is nice to be able to discuss all treatment and management options with the experts in this area and to determine a best course based on your specific situation. Even for pet parents who are interested in the surgery, it is not always an option based on tumor size (&/or potential tentacles extending from the tumor—dependent on the MRI either no surgery or surgery with radiation therapy), tumor location &/ or if a pet is older and compromised to the extent that a good outcome would not be likely. There may also be limitations for certain treatments secondary to cost for the pet parent. Having specialists who have extensive clinical & research experience, latest info and colleagues they can call to discuss a case, is very helpful with making both management and treatment decisions that are going to be best for the pet and the pet parent(s). It is not an extremely large group worldwide that have comprehensive treatment facilities so they all do communicate with each other to help make forward progress.

The Pituitary Center at WSU is wonderful to speak/work with . If you call the main hospital # and ask to speak with the pituitary surgery group, they get you in touch with the coordinator and they provide really helpful and up to date information. I saw that you mentioned Cushings as well in a prior thread. That is actually part of their work up & if you ask about it, they will walk you through what they currently recommend, when and why.

Again, even if you are not interested in the surgery, they have the comprehensive program that I mentioned earlier and they would be able to help you and your vet by providing the latest information pertaining to all the treatment & management options. Most of the vets at U settings are willing to consult with your vet if your vet reaches out to them. Some are also able to speak directly with clients. It all depends on the laws in a particular state. Again, even if they are unable to consult with you directly (if they haven’t seen your pet), they are usually are willing and happy to consult directly with your vet.

I also want to mention that I believe that Dr Owens group may have started a study that does provide for a free CT. This study is an attempt to replicate a study and the findings from one done by Dr Niessen at RVC. Again, reach out to them and they will be happy to give you all the details .

Wishing you the best!


Some links:

Dr Owen
https://vcs.vetmed.wsu.edu/people/faculty/profile/tina-owen

WSU Pituitary Program
https://vth.vetmed.wsu.edu/specialties/small-animal-surgery/pituitary-surgery

WSU Main #: 509-335-0711

 

[Wendy&Neko]

Amy @Tomlin - Diane has already been in touch with WSU, post here unpublished UK paper on 68 hypophysectomy cases

 

[Tomlin]

@Wendy&Neko Awesome . Actually, that’s not the study I was referring to. The one they are trying to replicate is pertaining to diagnostics vs the actual surgery.

 

[Wendy&Neko]

I didn't mean they were the same study, just that Diane had already contacted WSU already was in that post. Also in that post is a link to work being done at UC Davis.

 

[Tomlin]

I didn't mean they were the same study, just that Diane had already contacted WSU already was in that post. Also in that post is a link to work being done at UC Davis.

Hopefully, WSU has started the study with the free CT . I saw that it was mentioned—her vet wanted a CT and this would be a way to get it with no financial burden which is really nice. It’s also good for anyone else who runs across the thread to know it is another location with some help with cost if they would like the imaging.

 

[Tomlin]

The vet wants to do a CT scan which we might do, not sure yet.

Hi. I wanted to send the link for the contact info & details for the study at WSU that I mentioned that pays for testing (IGF-1 and Fructosamine) and then CT +/-MR imaging in case you decide to pursue it. FREE is always nice if/when possible!! I am not certain if having a previous IGF-1 test excludes a cat from participating....hopefully not, but you would have to call or email them and ask.

https://vcs.vetmed.wsu.edu/research...19/09/24/insulin-dependent-diabetic-cat-study

 

[Diane and Kierra]

Hi. I wanted to send the link for the contact info & details for the study at WSU that I mentioned that pays for testing (IGF-1 and Fructosamine) and then CT +/-MR imaging in case you decide to pursue it. FREE is always nice if/when possible!! I am not certain if having a previous IGF-1 test excludes a cat from participating....hopefully not, but you would have to call or email them and ask.

https://vcs.vetmed.wsu.edu/research...19/09/24/insulin-dependent-diabetic-cat-study

Sorry, I have not checked the board for some time. I was told about the study by WSU but Kierra didn't qualify because our vet had recently sent a blood sample to MSU for the IGF1 test although we didn't have the results yet. I wasn't given any explanation as to why that disqualified her.

 

[Diane and Kierra]

In fact, just found an article saying stem cells are useless on the pituitary gland.

I don't know if you saw the link above to Dr. Khalsa's article but it is not stem cells. It is organotherapy which is supposed to build up the immune system.

The standard process pancreas supplement is also a waste of money.

I purchased the SP pancreatrophin pmg when we thought Kierra was diabetic (before the IGF1 test was done). I had read it helped some sugar cats here on the board and I get it fairly inexpensive since my sister has an account with them. Don't you think even if the pancreas is functioning well that if it is constantly getting messages to put out more insulin that it might be working overtime and a little extra support might be helpful?

 

[Tomlin]

Sorry, I have not checked the board for some time. I was told about the study by WSU but Kierra didn't qualify because our vet had recently sent a blood sample to MSU for the IGF1 test although we didn't have the results yet. I wasn't given any explanation as to why that disqualified her.

I am sorry you were not able to participate in the study. You are able to email or call and they will probably be happy to confirm the specific reason for the disqualification. I worked within clinical research and one of the most important, if not the most important, parts of a clinical study is the design of the study. The design of a study includes what are called the methods of the study (one example is the collection of IGF-1 level). Tighter control of methods, such as the collection of any/all blood samples being done a specific way/time, gives the study more strength and validity and also the ability for others to repeat the study in the future if necessary/desired. With respect to repeatability, I do know that WSUs current study is actually a repeat of a previous study & is an attempt to confirm and add strength to the results already found in the previous research which will have some strong implications for diagnosing and treating HST in the future. This makes it even more important to keep the methods the same.

Again, I am very sorry that you did not qualify for the study. I would love for (& am trying to encourage) university settings within vet medicine to send out their study information to vets in their surrounding areas. If this was done, & vets familiarized themselves with the basic qualifications/disqualifications for the studies, they would at least be able to offer them as an option to clients (especially when there are financial implications) & avoid doing anything that may disqualify a client from participating in the study.

In the meantime, most Universities do have active studies listed on their website so keep an eye on them. I check all of the sites throughout the U.S. regularly because it is not uncommon for there to be at least one other participating study site or for a study to be repeated at my local U in the future. If I know about a study I am able to inquire about it locally. There are also occasions when studies will allow a local vet office to manage parts of a study—not very common, but it happens!

Have a great day !

 

[Diane and Kierra]

I figured it was some sort of protocol issue although it did seem like a minor issue since we had just sent out the sample and hadn't received the results yet. I called before the results were in because I wanted to be more informed on the treatment options so I would be in a better position to make any decisions in the case of a positive IGF1 test. Kierra had a lot of the symptoms, the biggest one being insulin resistant, so I wasn't surprised but I was devastated when it came back positive. I have decided to not pursue the surgery option though after researching it and discussing with the WSU folks. I think it is a good goal for them to be more comprehensive. Dr. Owen said she didn't have any knowledge of cabergoline and they do not provide SRT. Neigher Dr. Owen nor her surgery assistant knew about the FDMB's Acromegaly/IAA/Cushings group. I told them about all the acrocat information that is here (including the posts for the three cats that underwent surgery) but I wonder if they ever checked it out.

 

[Tomlin]

Kierra had a lot of the symptoms, the biggest one being insulin resistant, so I wasn't surprised but I was devastated when it came back positive.

.....I am sorry you had to receive this news. You clearly have left no stone unturned! The decisions regarding treatment options are definitely not easy.