Hesitant on starting Hydrea for ET Jak 2

Posted by bgerges @bgerges, Aug 3 11:51am

I am a 73 year old female, diagnosed with ET, with Jak 2 mutation. The highest my platelet count has been was in the mid 600's and was just tested again today at High 500's. As of now I am on 2 baby asprins a day, but my Oncologist has been recommended me starting Hydrea since I was diagnosed 2 years ago. I am hesitant about starting Hydrea because I have no ET symptoms, worried about the side effects of Hydrea and the fact that my platelet count has not been climbing. My WBC and RBC are on the high side of normal and I am also concerned they will be negatively effected. What did other oncologists order when their patient's platelets were in the high 500's? Interested in hearing comments.

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conniemarie | @conniemarie | Aug 19 11:35am

I am a 75 year old female and taking 500mg daily of HU after being diagnosed with Jack2 mutated myeloproliferative essential thrombocythemia two months ago with a platelett count of 863. Because I had a TIA 2 years ago, I had already been on one asprin daily and rapatha for high chloresterol. My platelet count has gone down steadily since taking the HU, but after last weeks blood test it showed an increase going back up to 514 (one before that was 464) The doctor is advising 1000mgs twice a week continuing with 500 the other days.
I'm worried this higher dosage will have more side effects. Currently I notice I'm more tired and hair thinning but nothing else. Is anyone else on a dosage higher than 500? Did you have more side effects?

debhammel | @debhammel | Aug 20 6:27am

In reply to @conniemarie "I am a 75 year old female and taking 500mg daily of HU after being diagnosed..." + (show)

@conniemarie I'm 71 and have been on 1000 mg of HU since being diagnosed in October, 2023. I was taking it 7 days a week but when my platelets dropped from 792 down to around 200, I was able to back down to 4 days a week. I am more tired than I used to be, and hair has thinned a bit, but other than that I have no side effects from this higher dosage.

janemc | @janemc | Aug 20 7:18am

In reply to @conniemarie "I am a 75 year old female and taking 500mg daily of HU after being diagnosed..." + (show)

@conniemarie

We each experience ET and HU differently!

But in hopes it will reassure you, I'll mention that I take 1000mg of HU six days a week, 1500mg on the seventh. (I have the stubborn MPL driver, very hard to rein in.) This has been my dosage for more than two years.

No serious side effects.

conniemarie | @conniemarie | Aug 20 8:15am

Thank you for telling me that. That is encouraging .

conniemarie | @conniemarie | Aug 20 8:16am

In reply to @debhammel "@conniemarie I'm 71 and have been on 1000 mg of HU since being diagnosed in October,..." + (show)

@debhammel
Thank you! good to know.

marykatherine62 | @marykatherine62 | Aug 20 8:39am

In reply to @conniemarie "I am a 75 year old female and taking 500mg daily of HU after being diagnosed..." + (show)

@conniemarie

I was on 1000mg daily for PV. My labs dropped weekly. I also developed side effects, severe itching, especially when I laid down, headaches, brain fog was worse, bloody nose, mouth sores, was very fatigued. I was miserable. Weekly MD lowered my dose weekly ,not because of my symptoms but my labs continued to drop until they were at alert level low. That's when hydrea was discontinued. That was the end of January. It took until June for my labs to return to normal levels. In July my labs hit treatment levels. I have a new MD who thankfully started me on Jakafi. I just started it yesterday and hopefully I will have the good response others have experienced. I'm not knowledgeable about ET but have experience with hydrea. Im not trying to scare you, you may not have the same experience and be able to tolerate a higher dose. If you do the higher dose just pay attention to your symptoms and work with your MD. Good luck and best wishes.

mjfp49 | @mjfp49 | Aug 21 6:45am

In reply to @conniemarie "I am a 75 year old female and taking 500mg daily of HU after being diagnosed..." + (show)

@conniemarie
Hi, I have been on HU for 9 years.
No side effects except for thinning hair...and slightly lower RBC & WBC.
When I started HU my platelets were in the 800s.
Anytime they creep back up to 400s in the past 9 years my hemotologist ups the dose.
Just recently she upped the dose to 1000 mgs 5days a week and 500 on the weekends which pushed the platelets back into the low 200s but for the 1st time it made me slightly anemic (I felt fine but the blood test showed the drop)...so we dropped it back 1 pill will see how it is going next month.
This is the dance you do with ET...tweaking the meds here and there to suppress the platelets .
Hope this helps.

kapow | @kapow | Aug 21 6:53am

In reply to @janemc "@conniemarie We each experience ET and HU differently! But in hopes it will reassure you, I'll..." + (show)

@janemc I have the same driver (MPL) and am on 1000 mg of Hydroxyurea 7 days a week.. my platelets have been on the rise again since January and are currently at 793 . I am waiting to hear from my hematologist about what more we can do. I am getting quite concerned.

mjfp49 | @mjfp49 | Aug 21 8:45am

In reply to @kapow "@janemc I have the same driver (MPL) and am on 1000 mg of Hydroxyurea 7 days..." + (show)

@kapow
I understand the go to drug if HU is not getting the job done is anagleride.
At some point I may have to look into it...unless something else comes along.

conniemarie | @conniemarie | Aug 21 10:44am

In reply to @mjfp49 "@conniemarie Hi, I have been on HU for 9 years. No side effects except for thinning..." + (show)

@mjfp49
Thank you so much for your message - it does help.

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