Hooray that you're getting a second, more expert opinion.
I am baffled you were told "the aspirin renders half my platelets inactive . . ."
It's not platelet "activity" that causes problems. With a count of 880, you're way out of the normal platelet range. Aspirin makes platelets more slippery, but it doesn't magically create more room for all those oversized, misshapen ET platelets. Extra platelets crowd the blood vessels (= headaches, vision weirdness, dizziness) and may distend the spleen.
The production of all those extra platelets is another concern. It's really taxing your bone marrow.
@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 interestingly I haven’t done a bone marrow biopsy yet. This MPN specialist who recommended peg has strongly advised me to do one, however, my normal hematologist is OK with a clinical diagnosis. Honestly, at the moment, I am absolutely thankful because it would impact my mood significantly. So I’m happy that I’m on peg even without a biopsy. Needless to say I’m not sure if my insurance is OK with that as well, we will see. Additionally, I am aware that the most common approach is to do a biopsy. By the way my vaf is 26.
@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 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?
@dwilson072516
Hi.
If your husband does not have the JAK2 V617F mutation, which is commonly associated with Polycythemia vera and other myeloproliferative neoplasms, he may be eligible to donate blood at a standard blood bank.
Primarily managed by organizations like the American Red Cross and America’s Blood Centers.
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.
My husband has Jak2 and was a poor responder to Hydroxyurea and Jakifi. His hematologist suggested bloodletting but that costs too much for our income. We are hitting brick walls with every turn. He was diagnosed in 2020 after having a heart attack. We have insurance with my employer but copays are unreal and he hasn't been able to work since his heart attack. Just looking for encouragement.
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 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 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.
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
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.
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@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 👍
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1 Reaction@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?
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1 Reaction@kat260 Super easy, no need to go to a doctors office, absolutely simple for everyone.
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2 Reactions@birgitr Well done and glad to hear. I hate injections 🫤
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2 Reactions@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.
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3 Reactions@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?
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1 Reaction@janemc thank you, sometimes it is nice just to have someone that relates to what we are going through.
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1 Reaction@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.
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3 Reactions@dwilson072516
What is his name, please?
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1 Reaction@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