← Return to Essential Thrombocythemia: Making treatment decisions

Discussion
Comment receiving replies
@loribmt

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
~~~
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?

Jump to this post


Replies to "Hi @winmil99. Essential thrombocytopenia is part of a blood disorder group referred to as Myeloproliferative neoplasms..."

Thank you so much for the information.

Thank You, you sound very informed on treatments and the disease,. It is stressful. I have been told by my hematologist and a specialist at Mayo, that I could wait until I am in the 600's I get a re check on Thursday..I am not taking lumbrokainse ..and now I doubt I will ...vegetarian x 50 years, Not really interested in eating ground up worms ha!