1. < Blood Cancers & Disorders
Profile picture for johnnychips

Effectiveness of HU on ET w/MPL?

Posted by johnnychips @johnnychips, May 24 10:11am

I was diagnosed with ET & MPL 2 months ago, platelet count of 850 and the doctor started me on HU 500mg, 3 pills a week (M, W, F). After one month, platelet count was 716, so he increased dosage to 7 pills a week (one each day). Two weeks later, platelet count was 699, so he increased dosage to 11 pills a week (two each day, except M/W/F with only one). Three weeks later, platelet count was 675, so he increased dosage to 14 pills a week (two each day). That brings us to the present. So, after two months altogether from the start of the diagnosis, platelet count went from 850 to 675. I became discouraged as I thought HU would bring the platelet count lower and faster. It is going in the right direction but it is still high.What realistically should my expectations be? What is everyone else's experience in terms of the amount of time it took to get the count to less than 400? Would appreciate some feedback on this. Thanks!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for nohrt4me (Jean)
nohrt4me (Jean) | @nohrt4me | May 31 8:13am
In reply to @krag1949 "@janemc I looked back at my assessment as of April 27th, myeloproliferative disease with thrombocytosis Jak2..." + (show)
Profile picture for krag1949 @krag1949

@janemc I looked back at my assessment as of April 27th, myeloproliferative disease with thrombocytosis Jak2 and SF3B1. My hemo is treating me like I have essential thrombocytosis, although it was noted diagnosis was somewhat ambiguous, close monitoring of disease for signs of transformation to either myelofibrosis or MDS. This is all I know so far.

Jump to this post

@krag1949 Just looking at that "1949" in your user name and wondering if you are a Vietnam vet. If so, I believe MDS treatment is covered by the VA if you were exposed to certain chemicals during your service. MF might also be covered now, too. ET, as far as I know, is not.

A friend developed MDS and received absolutely top-notch care thru the VA in Minneapolis.

REPLY
1 reply
Profile picture for krag1949
krag1949 | @krag1949 | May 31 9:15am
In reply to @janemc "@krag1949 The presence of that JAK mutation clarifies that you have essential, not reductive, thrombocytosis. For..." + (show)
Profile picture for janemc @janemc

@krag1949

The presence of that JAK mutation clarifies that you have essential, not reductive, thrombocytosis.

For anyone, ambiguity about what else may be happening would be really stressful.

It's so easy to think the worst. Would you please remind yourself, you're doing everything right to get your platelet count down? That also means you're doing everything right to shore up your bone marrow against progression.

To better days ahead.

Jump to this post

@janemc thank-you for your insight!! God Bless you!!

REPLY
Profile picture for krag1949
krag1949 | @krag1949 | May 31 9:27am
In reply to @nohrt4me "@krag1949 Just looking at that "1949" in your user name and wondering if you are a..." + (show)
Profile picture for nohrt4me (Jean) @nohrt4me

@krag1949 Just looking at that "1949" in your user name and wondering if you are a Vietnam vet. If so, I believe MDS treatment is covered by the VA if you were exposed to certain chemicals during your service. MF might also be covered now, too. ET, as far as I know, is not.

A friend developed MDS and received absolutely top-notch care thru the VA in Minneapolis.

Jump to this post

@nohrt4me not a vet, female 76 years old retired history teacher! God Bless out vets!

REPLY
Please sign in or register to post a reply.