Anyone living with Essential Thrombocythemia with JAK2?

Posted by lindamarie63 @lindamarie63, Dec 3, 2024

Has anyone been living with,ET, jac2 mutation

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

kat260 | @kat260 | May 2 7:06am

In reply to @janemc "@kat260 Hooray that you're getting a second, more expert opinion. I am baffled you were told..." + (show)

@janemc It's interesting you say that about platelet activity. My haemo really only talks about clot/stroke risk and the magic number for me starting treatment is when I'm around 1000. The other risk I have is my calcium score of 110, which is moderate levels of plaque in the heart arteries and I've read that high active platelets can increase calcium score. He says, even though my count is 880, it's more like 440 as half are inactive. I asked about studies that show this and he said 'clot tests' show only half are aggregating, though I personally, haven't had a clot test.
It's a very good point though about the symptoms and spleen. He has never discussed risk to the spleen. I have read a bit about how the spleen can enlarge with ET but didn't know it could be due to number of platelets - active and/or inactive.
I will definitely discuss this with the specialist as well as the affect extra platelets, active and inactive, have on bone marrow.
There is alot to learn and understand. I am a newbie so thanks, I really appreciate the info and support 👍

kat260 | @kat260 | May 2 7:09am

In reply to @birgitr "@kat260 interestingly I haven’t done a bone marrow biopsy yet. This MPN specialist who recommended peg..." + (show)

@birgitr Well there's another similarity! I agree, I'm thankful to not do one also as there's lots going on in our lives at the moment and it would definitely add more stress. How did your self injecting go?

birgitr | @birgitr | May 2 7:22am

In reply to @kat260 "@birgitr Well there's another similarity! I agree, I'm thankful to not do one also as there's..." + (show)

@kat260 Super easy, no need to go to a doctors office, absolutely simple for everyone.

kat260 | @kat260 | May 2 7:37am

In reply to @birgitr "@kat260 Super easy, no need to go to a doctors office, absolutely simple for everyone." + (show)

@birgitr Well done and glad to hear. I hate injections 🫤

janemc | @janemc | May 2 8:03am

In reply to @swalex "@dwilson072516 Hi. If your husband does not have the JAK2 V617F mutation, which is commonly associated..." + (show)

@swalex

This is definitely something dwilson could ask the Red Cross about.

I believe she'll be told NO. Having no clue my blood wasn't normal, I had donated blood every 8 weeks for years.

But once I had a diagnosis, the Red Cross told me I could never donate again.

Why? No one knows if it's safe to give blood from someone with an MPN to someone without an MPN.

Within the last year or so, a commenter on this forum angrily reported that he'd contracted ET by receiving blood from someone with ET after his heart surgery. Before his surgery, his platelet count had been normal. Afterwards, it was sky high.

Since nobody knows what sparks MPNs, who can say why that poor man now has ET? The stress of his heart issues? A blood transfusion from someone with ET?

The Red Cross screens donated blood for many things, but not for MPNs.

Knowing it's possible my blood could harm someone, I took myself off the organ donor list too.

By the way, I'm MPL-ET, not JAK2-ET. The Red Cross never even asked me what kind of an MPN I had, just told me it would no longer be safe to donate blood.

Those with PV do have regular phlebotomies; every drop of their blood is discarded.

janemc | @janemc | May 2 8:05am

In reply to @dwilson072516 "My husband has Jak2 and was a poor responder to Hydroxyurea and Jakifi. His hematologist suggested..." + (show)

@dwilson072516

I am so sorry for the nightmare you're going through.

Does anyone know, is there a foundation that assists people with the costs of MPN care?

dwilson072516 | @dwilson072516 | May 2 9:51am

In reply to @janemc "@dwilson072516 I am so sorry for the nightmare you're going through. Does anyone know, is there..." + (show)

@janemc thank you, sometimes it is nice just to have someone that relates to what we are going through.

dwilson072516 | @dwilson072516 | May 2 9:57am

In reply to @janemc "@swalex This is definitely something dwilson could ask the Red Cross about. I believe she'll be..." + (show)

@janemc yes I know it would be discarded, the hemotologist is just trying to find some way to get his numbers down a little. The only symptom he is having right now is itching and bruising. He has come to terms with his condition but I haven't. I lost a husband due to liver cancer and I don't want to lose another to cancer. It is horrible to watch someone you love waste away from it. Prayers would be appreciated.

janemc | @janemc | May 2 10:32am

In reply to @dwilson072516 "@janemc yes I know it would be discarded, the hemotologist is just trying to find some..." + (show)

@dwilson072516

What is his name, please?

swalex | @swalex | May 2 10:43am

In reply to @janemc "@swalex This is definitely something dwilson could ask the Red Cross about. I believe she'll be..." + (show)

@janemc
I’m not convinced by that argument, as Essential thrombocythemia (ET) is not contagious and cannot be transmitted through blood transfusion.

ET is a bone marrow disorder, specifically a type of Myeloproliferative neoplasm. It arises from acquired genetic mutations in a person’s own blood-forming stem cells—most commonly involving genes such as JAK2 mutation, CALR, or MPL.

In particular, the JAK2 V617F mutation is found in the majority of cases of polycythemia vera and in a substantial proportion of patients with ET or myelofibrosis. These mutations develop internally and are not transmitted between individuals.

There is also a growing body of qualitative and clinical research supporting this understanding.
https://my.clevelandclinic.org/health/diseases/24031-essential-thrombocythemia

Please sign in or register to post a reply.