JAK2 Mutation, Low Iron and High Platelet count

What amount did wife take of tonic? Does she take hydroxyurea & aspirin ?

She was using hydroxyurea then changed to Anagrelide because of hydroxyurea cancer concerns. Because of Anagrelide side effects she asked me if somehing natural could get her off Anagrelide. I learned red palm tocotrienol had potential so with her oncologist's approval she used 50 mg with each meal and as blood work showed platelet reductions her doctor adjusted frequency and amount of pills until he removed the drug entirely. While on hydroxyurea she did use aspirin but supplemented with magnesium as hydroxyurea causes magnesium loss that could result in inadequate amounts to activate thiamine and vitamin D. Low thiamine can cause cognitive impairment and many other health issues.

Ty for your reply. Good info. What cancer concerns using hydroxyurea do you know of? The magnesium issue is new info too. I will look into this especially since cognitive impairment is presently an issue. cognitive impairment began shortly after beginning hydroxyurea. Dr says not connected to each other. But I think the timing is too coincidental to not be considered. Side effects from anagrelide? Or red palm?

Also what brand tocotrienol are you using? Dr recommend? how long did it take to get platelets down & off med?

The first link contains the info I know about a possible cause and types of cancer. Ask your doctor as how it may effect you. The next contains a section on toxicity and dosage of tocotrienol. My wife experienced no side effects. She used the Now brand red palm tocotrienol. The oncologist approved it's used but did not recommend it. I think it took about nine to twelve months. There was no effort to push. She is a small person and the dosage was adequate. Always consult your health care professional before using any supplement. The third link is about thiamine and discusses fat soluble forms that are able to pass through the blood/brain barrier more effectively than water soluble forms. The last link is a followup on thiamine's role in an unexpected area.
https://www.mskcc.org/cancer-care/patient-education/hydroxyurea-01
https://nutritionandmetabolism.biomedcentral.com/articles/10.1186/1743-7075-11-52
https://nootropicsexpert.com/vitamin-b1-thiamine/
https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo

Ty. I have an appointment next month & want to research & discuss with my dr. this new info.

Pattitoo....
Let me share my three years of experience in chasing my diagnosis. First, high platelets is a symptom that requires further investigation. In order to determine MPN and Genetic disorders, a bone marrow biopsy is required and a full genetic blood panel. Going for my second tomorrow. If you do have an MPN, it is an extremely rare condition and requires an EXPERT to review. After I was originally diagnosed, I researched the local experts at Mayo Clinic and MD Anderson....fortunately I live in Phoenix and have those available. The difference between a general Oncologist and one who specializes in blood disorders is incredible....find one. I was originally on Hydrea but developed some rare side effects and recently switched to Interferon Injections.
Many types of MPN’s are manageable with medication but you really need to know what you have. I have PMF which IF it progresses might require a bone marrow transplant. My niece has ET which is manageable by pill. My mother also has a lower level disorder which really requires awareness but no treatment. ( she was told for years that she has leukemia, she did not!) So I was aware of some of these issues all my life and how general physicians are not up on these diseases or treatments.
The recent COVID research and need to speed up approvals has resulted in many other drugs being researched and even approved for other diseases and MPN’s are a good example. There are new treatment options and quite a few clinical trials as we speak. I wish you well with your journey to discovery, do not let misinformation deter you from finding your answers. Good luck!
Steve

My husband was just told by the hematologist he was referred to that he has Jak2 mutation and is awaiting bone marrow biopsy. He is 52 yrs old and I am a nurse who never heard of this. Last month he had been diagnosed with his first bout of diverticulitis, and has yet to follow up with getting a colonoscopy that he was recommended to have. The diverticulitis is the reason they did a blood panel & was referred to hematologist. Reading up on what JAk 2 is, I have become quite anxious and I want answers now. I don’t even know what questions to ask. Any advice would be so helpful. Thank you

When they do the bone marrow (BM) procedure they should do a molecular panel which looks at 400 genes commonly associated with blood cancers. The JAK2 mutation is common among many different blood cancers. The BM and molecular panel should identify what type of blood cancer your husband has. When you get the results you should have a long talk with your Hematologist/Oncologist. We're here for further information but first, get the appropriate tests done.

Good luck.

Thanks for the question. I was diagnosed with Thrombocytosis, Essential Thrombocythemia and JAK2 gene mutation over 3 years ago. It is a form of blood cancer that is not very life threatening. The MPN Foundation has been most helpful to my understanding. I chose to avoid chemotherapy drugs prescribed by my oncologist. I take 325 mg ASA daily and have a platelet count every three months. The MDs try to frighten me into drugs or stroke, but I believe the cure may be worse than the disease. If you have a medical background, you may take a very different view. I hope this helps with your anxiety. I live with the disease daily and travel, work and play a full life at 73.