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Anyone living with Essential Thrombocythemia with JAK2?

Posted by lindamarie63 @lindamarie63, Dec 3, 2024

Has anyone been living with,ET, jac2 mutation

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panamsandy | @panamsandy | May 2 11:06am
In reply to @kat260 "@birgitr Oh good. Happy to share. As you say, we do seem to be similar though..." + (show)
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@birgitr Oh good. Happy to share. As you say, we do seem to be similar though I have not had any HU treatment yet except daily Aprin 100mg and I turned 61 last month! Totally agree. Definitely worth trying Interferon to reduce that allele burden. I really hope it works for us. My VAF is 16.25. Yours? I didn't have a bone marrow biopsy. Did you? I've read most say you need to have it but my haemo says it's not necessary. I'll be interested to see if the other Dr recommends it.

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@kat260 What is VAF? I'm 76; diagnosed last year; April's quarterly platlete level 536; my doc said a bone marrow was not necessary. I'm on one 81mg baby aspirin per day; no symptoms. Glad to meet you!

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janemc | @janemc | May 2 11:44am
In reply to @swalex "@janemc I’m not convinced by that argument, as Essential thrombocythemia (ET) is not contagious and cannot..." + (show)
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@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

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@swalex

I'm heartened to hear about continuing research into ET. Thank you for frequently sharing informative links!

Whether MPNs can be transmitted is certainly above my amateur pay grade.

I just wanted to report, NO MPN donors is the stance of the Red Cross.

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dwilson072516 | @dwilson072516 | May 2 11:54am
In reply to @panamsandy "@kat260 What is VAF? I'm 76; diagnosed last year; April's quarterly platlete level 536; my doc..." + (show)
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@kat260 What is VAF? I'm 76; diagnosed last year; April's quarterly platlete level 536; my doc said a bone marrow was not necessary. I'm on one 81mg baby aspirin per day; no symptoms. Glad to meet you!

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@panamsandy nice to meet you! My husband's numbers are between 600-700s and he is on Plavix and aspirin. The itching is really bad for him, the bruising he tolerates but we can actually watch bruises appear without any cause for them. It's scary at times.

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diana56789 | @diana56789 | May 2 12:11pm
In reply to @dwilson072516 "My husband has Jak2 and was a poor responder to Hydroxyurea and Jakifi. His hematologist suggested..." + (show)
Profile picture for dwilson072516 @dwilson072516

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.

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Have you tried anagrelide? That's what I've been taking for years. I couldn't handle hydroxy at all, every side effect listed almost. Jakafi was great for bringing down platelets, not so great for side effects, and then the insurance wouldn't cover it after a while. Anagrelide works pretty good with hardly any side effects. @dwilson072516

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dwilson072516 | @dwilson072516 | May 2 1:32pm
In reply to @diana56789 "Have you tried anagrelide? That's what I've been taking for years. I couldn't handle hydroxy at..." + (show)
Profile picture for diana56789 @diana56789

Have you tried anagrelide? That's what I've been taking for years. I couldn't handle hydroxy at all, every side effect listed almost. Jakafi was great for bringing down platelets, not so great for side effects, and then the insurance wouldn't cover it after a while. Anagrelide works pretty good with hardly any side effects. @dwilson072516

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@diana56789 thank you for this information, it's worth checking on!

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kat260 | @kat260 | May 2 10:01pm
In reply to @panamsandy "@kat260 What is VAF? I'm 76; diagnosed last year; April's quarterly platlete level 536; my doc..." + (show)
Profile picture for panamsandy @panamsandy

@kat260 What is VAF? I'm 76; diagnosed last year; April's quarterly platlete level 536; my doc said a bone marrow was not necessary. I'm on one 81mg baby aspirin per day; no symptoms. Glad to meet you!

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@panamsandy Glad to meet you too. VAF is the measure of variable allele frequency in the JAK2 V617F gene. Mine is listed as %var/total JAK2. The number would be on your initial blood test result which measures this load. The lower the better. Interferon treatment may reduce this load which is why I am interested in trying it when the time comes. Glad you have no symptoms. May be because your platelets aren't too too much over and your VAF is low? I have fatigue and headaches on and off, both manageable.

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janemc | @janemc | May 3 6:08am
In reply to @dwilson072516 "@panamsandy nice to meet you! My husband's numbers are between 600-700s and he is on Plavix..." + (show)
Profile picture for dwilson072516 @dwilson072516

@panamsandy nice to meet you! My husband's numbers are between 600-700s and he is on Plavix and aspirin. The itching is really bad for him, the bruising he tolerates but we can actually watch bruises appear without any cause for them. It's scary at times.

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@dwilson072516

Wondering if Taylor has tried taking a daily antihistamine? I take generic loratadine (the active ingredient in Claritin) every day. ET's weird platelets can set off our immune reaction, causing itching and stuffiness. Loratadine helps me a lot.

Our daily low-dose aspirin reduces clotting activity -- for those of us with too many platelets, that's a good thing! But reduced clotting means even a teensy paper cut will bleed (always pack Band Aids!). And bruises are just unclotted bleeding under the skin.

Maybe instead of thinking bruises are scary, you could think of them as proof the aspirin and Plavix are working well, maintaining the fluidity of his blood?

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princess86 | @princess86 | May 3 7:14am
In reply to @birgitr "@kat260 interestingly I haven’t done a bone marrow biopsy yet. This MPN specialist who recommended peg..." + (show)
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@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.

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@birgitr Excuse my ignorance, but what is peg? I have ET with Jak2 mutation but hemo did not think bone biopsy was necessary. My platelets were in 600 range when put on hydroxyurea so I dont understand someone being at a 1000 with no treatment to reduce platelets.

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eloise999 | @eloise999 | May 3 7:25am
In reply to @swalex "@janemc I’m not convinced by that argument, as Essential thrombocythemia (ET) is not contagious and cannot..." + (show)
Profile picture for swalex @swalex

@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

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@swalex my understanding is that people with MPNs also make abnormal blood cells. So we should not donate.

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