Essential Thrombocythemia: Making treatment decisions

Posted by mamsgirl1998 @mamsgirl1998, Jan 27 7:26pm

I have ET and was diagnosed 2 years ago. I am 50 Years old and my latest platelet count was 1,183,000. I only take a baby aspirin daily. My hematologist said I could try Hydroxyurea if I wanted. I am low risk and at first I didn’t want to take it. My platelet count continues to climb. I am thinking about trying the medication. Anyone else tried it? Any ill side effects?

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jroyer | @jroyer | Feb 24 1:15pm

Thank you for better understanding of the hot flashes as I thought these were side effects of the Hydroxyurea. Interesting.

nohrt4me | @nohrt4me | Feb 25 10:24am

In reply to @jroyer "Thank you for better understanding of the hot flashes as I thought these were side effects..." + (show)

My hemo said that my fatigue, ocular migraines, hot flashes and sweats, and erythromelalgia were symptoms of ET. HU helped most of them in my case.

But effects of HU vary a lot from person to person, so not dismissing your idea that it also might cause hot flashes! Mayo has a list of documented side effects here: https://www.mayoclinic.org/drugs-supplements/hydroxyurea-oral-route/side-effects/drg-20068109

mdterp76 | @mdterp76 | Feb 25 1:00pm

If you decide to take HU, try it a couple of times per week for a month or two and see how it impacts your platelets. I started 500 mg of HU, 1x week for a month when my platelets were 680K, age 69, with Jak2 mutation (diagnosed Jan 2023). It made no change. Then I went to 2x week for 8 months. Platelets went down to 550K. Then, we went over 600K, so now, I take HU 3x a week. I also take daily iron for low iron (not anemic) and daily aspirin. Now, all of my blood work looks great, except my platelets are still 600K. For me, the risk of blood clots, stroke, and heart attacks for those over age 60, was a determining factor for taking HU. I recommend joining the MPN Foundation. It's free and they will send you great information by mail and email. They have excellent videos on YouTube and wonderful free seminars. https://www.mpnresearchfoundation.org/essential-thrombocythemia-et/
Keep up with exercise, healthy living, and hobbies. With some changes, you can live a good, fairly normal life. My biggest issue with HU is the fatigue and hot flashes. Some people are not bothered by it. I just try to keep going and make my outings and appointments in the afternoon. Take care!
Karla

mdterp76 | @mdterp76 | Feb 25 1:06pm

In reply to @winmil99 "there is a naturopathic drug called "lumbrokinase " old Chinese medicine. I am going to start..." + (show)

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

mdterp76 | @mdterp76 | Feb 25 1:11pm

In reply to @1995victoria "I've had all 6 covid vaccine shots, with no increase (or decrease) in platelets. Shingrix (shingles..." + (show)

Interesting. My platelets went up after the 6 covid shots and with the Shingrix. Docs say there is no connection, but I won't be surprised if they find a connection later. I did not have ET until I started the covid shots. It's a challenge to determine what to do and what to not do.

1995victoria | @1995victoria | Feb 25 2:22pm

In reply to @mdterp76 "Interesting. My platelets went up after the 6 covid shots and with the Shingrix. Docs say..." + (show)

There is a research paper that reported Shingrix effects on platelets, you can find on GoogleScholar
Remember correlation is not causation......all the best

winmil99 | @winmil99 | Feb 26 8:45am

In reply to @loribmt "Hi @winmil99. Essential thrombocytopenia is part of a blood disorder group referred to as Myeloproliferative neoplasms..." + (show)

@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

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!

nohrt4me | @nohrt4me | Feb 26 10:29am

In reply to @winmil99 "Thank You, you sound very informed on treatments and the disease,. It is stressful. I have..." + (show)

"Ground up worms." Thank you for the laugh of the day!

Lumbrokinase does seem to help heart patients with clotting factors, but does nothing to reduce platelet counts. Here's more on it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9851794/#:~:text=Due%20to%20its%20effective%20fibrinolytic,reported%20%5B12%E2%80%9315%5D.

winmil99 | @winmil99 | Feb 27 9:34am

In reply to @sregiani "I take Nattokinese, and it was by the recommendation of my Heme doc. So far, I’m..." + (show)

do you have Jak 2 mutation?

winmil99 | @winmil99 | Feb 27 11:04am

In reply to @sregiani "I take Nattokinese, and it was by the recommendation of my Heme doc. So far, I’m..." + (show)

I will look into that with my Dr , can I ask your age? how high were your plts to start? Jak2 ?

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