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DiscussionEssential Thrombocythemia: Making treatment decisions
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Replies to "there is a naturopathic drug called "lumbrokinase " old Chinese medicine. I am going to start..."
Thank you for your advise. My mom has heart disease and she is on blood thiner so they said it should be safe to postpone HD to the time that numbers raise up to 1 million. She is really fragile and by taking garlic and pomegranate her platelet level was plateaued. but right now since it's reaching to that number, I am pretty sure they gonna suggest to start HD which is so concerning for me due to the side effects. I am doing my best to find a way to keep her away from that chemo medicine since she already is taking a lot of medications. I really appreciate for you advise.
I take Nattokinese, and it was by the recommendation of my Heme doc. So far, I’m holding in the 600s w/only a baby aspirin.
As others have said, tell your MPN specialist about any supplements you’re interested in taking. I’m on quite a few, and it’s with his agreement.
Best wishes!
I have read the risks for AML with ET. It is low, but can happen. One of the issues with herbals is that they are unregulated. Please let us know how your numbers are after the lumbrokinase. HU improved not just my platelets, but other numbers in my full blood workup. I also take iron (low but not anemic) and baby aspirin. I also try to exercise and follow a Mediterranean diet. It's shocking to retire and have to deal with this. I was diagnosed Jan. 2023, age 69, ET/Jak2 with platelets around 780K.
Take care,
Karla
Hi @winmil99. Essential thrombocytopenia is part of a blood disorder group referred to as Myeloproliferative neoplasms (MPNs) which are potentially life-threatening blood cancers that happen when your bone marrow makes too many blood cells. It can be red or white cells or in your case it is too many platelets occurring from an acquired mutation to your JAK2 gene. Too many platelets can run the risk of strokes, pulmonary embolisms and DVT clotting and death. So it is nothing to take lightly if treatment is required.
The lumbrokinase or nattokinase are supplements which can thin blood and prevent clotting. However, if you have a mutation, this allows proliferation of cells due to the mutated gene. Just thinning the blood won’t stop the proliferation of the damaged cells. So that is something to consider. Some of these treatments can be lethal, cause very serious side effects or interfere with other medications. Most are not regulated or meet any specific standards of quality or potency.
I’m sorry for the loss of your friend to AML, but I wanted to clarify that just having ET can increase the potential of developing AML. It most likely wasn’t the HD that caused it in your friend.
HD has been around for decades and it has a proven track record for helping control blood conditions like ET and PV.
If you do end up requiring this drug, I hope that you’ll reconsider because it has been a lifeline to many people, helping them to live a long and healthy life.
I’m sure you’ve been doing your own research but thought I’d toss out another good article for you.
https://www.healthline.com/health/cancer/myeloproliferative-disorders
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https://nattokinasehearthealth.com/lumbrokinase/benefits-and-side-effects/
In any event, your hematologist would be the best source of information regarding your platelet levels and to help you with the choice of medications. Have you discussed using an alternative medication for your ET?