JAK2 Mutation, Low Iron and High Platelet count

Posted by pattitoo @pattitoo, Nov 25, 2020

I was being treated for low iron – was sent to a Oncology Hematologist- had Iron Infusions – gradually the iron values increased. Only received an infusion two times. The doctor is seeing me every 6 months, Platelets are increasing and I was told I was born with the JAK 2 Mutation apparently never surfaced ever until recently. I was a regular blood donor, and years ago I was needing iron and saw this same type of physician. For raising Platelets, eventually I will be put on a medication, he said my count must be 1.000,000 first (one million).

What in blood work determine a Jak 2 Mutation? I have not given blood since the two diagnoses. Any information of your experiences or knowledge will be appreciated.
Thank you.

My daughter was recently diagnosed with JAK2. She has had two iron treatments and has another Tuesday. Her platelets are above 900 still. She is on aspirin 81mg daily Doc says he won’t have to treat the cancer unless her blood starts clotting.
Her energy has increased somewhat. Her headaches have slowed and she is starting to feel some better.

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@levieta

My daughter was recently diagnosed with JAK2. She has had two iron treatments and has another Tuesday. Her platelets are above 900 still. She is on aspirin 81mg daily Doc says he won’t have to treat the cancer unless her blood starts clotting.
Her energy has increased somewhat. Her headaches have slowed and she is starting to feel some better.

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A high platelet count typically is indicative of Essential Thrombocythemia. The normal treatment is Hydroxyurea which shuts down the JAK2 and reduces the high platelet count. Has your daughter had a bone marrow procedure and a molecule panel to determine if she has any gene mutations?

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@mjpm2406

The Bone Marrow procedure is a first step. He should also do a molecular panel to determine if any other genes have mutated. It is common for several genes to mutate. The JAK2 mutation usually causes a high platelet count. I have the JAK2 mutation and the SRSF2 and SFB31 gene mutation. The molecular panel identified those two mutations. So my original diagnosis of Essential Thrombocytosis (ET) changed to MDS/MPN-RS-T after the molecular panel results came back. Good luck.

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Thank you so much for your feedback. The oncologist is still doing blood work while treating her with iron infusions. He hasn’t prescribed any blood thinners for the high platelets. However, she is seeing a neurologist due to fluid on the brain and he prescribed them yesterday after he did an angiogram. She sees the oncologist today and will discuss further treatment plans

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@pattitoo

Helen2209 – you are right, I am confused – deeper information should have come from the doctor.
Possibly see another doctor is in order.
The terminology is new to me, I normally have a curiosity on learning things medical….this is to much for me.
With the help from posters like you and Colleen, I will muddle through this.
Thank you very, very much for your reply.

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Remember the types of blood cancers you are discussing are extremely rare and most doctors have no experience with them, further finding specialists is hard since these disorders are so rare. If you live near a Mayo Clinic, MD Anderson facility or Sloan… would Strongly recommend going to them for real answers. Or even a trip to one if travel is required. Doctors egos sometimes let them “ think” they have all the answers, but I have personally learned more in the past three years then many of them understand and I have caught them being wrong on multiple occasions. Ths is your health and You need to be your own advocate! Good Luck

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@dwlowrance

Hi Helen- Thanks for your post. I was diagnosed with Essential Thrombocytemia and mutant JAK2 genes at 1.2 million platelets. The platelet count comes down when I take 325 msg aspirin and quinine daily. Stay tuned. Happy New Year.

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dw, check to see if the tonic water you are using contains high fructose corn syrup. You may find red palm tocotrienol as a replacement. It lowered my wife's platelets.

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@onamission

dw, check to see if the tonic water you are using contains high fructose corn syrup. You may find red palm tocotrienol as a replacement. It lowered my wife's platelets.

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Thanks for the email. I take quinine via extract of the red chinona plant bark with no sugar or sweeteners. Thanks for the suggestion on red palm tocotrienol. Happy New Year again and Valentines Day.

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@onamission

dw, check to see if the tonic water you are using contains high fructose corn syrup. You may find red palm tocotrienol as a replacement. It lowered my wife's platelets.

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

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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.

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@onamission

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.

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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?

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@onamission

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.

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

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@tresman10

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?

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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

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@onamission

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

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

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