JAK2 Essential Thrombocythemia (ET) Treatment

Posted by goodcheers @goodcheers, 3 days ago

I recently came upon a fairly recent article about the monoclonal antibody INCA44989 treatment for JAK2 ET. It supposedly has a roughly 70% positive response rate, and with a low toxicity profile, meaning minimal side affects. This is great news for all of us who have been afflicted with this unfortunate blood disorder.

I searched for a discussion about this but nothing came up. I'm wondering if anyone reading this may have some experience or information on this subject.

Thanks

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Intriguing! Could you supply a link to the article you read, goodcheers?

Google AI found this comment:

NCA033989 (formerly referred to in early development as INCA44989) is a first-in-class, mutant calreticulin (mutCALR)-targeted monoclonal antibody currently in clinical trials for essential thrombocythemia (ET). It targets the underlying drivers of the disease rather than just managing symptoms.

. . . please note, this antibody is being tested for those with the CALR driver (rather than the JAK driver).

If you go to the top of this page and in the search box type "drbart86" -- you will meet someone actively participating in this trial.

It is VERY exciting indeed!

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From Targeted Oncology:

A New Era for ET: Targeting the CALR Mutation
Author(s)Sabrina Serani, Aaron T. Gerds, MD, MS
September 4, 2025

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Profile picture for janemc @janemc

Intriguing! Could you supply a link to the article you read, goodcheers?

Google AI found this comment:

NCA033989 (formerly referred to in early development as INCA44989) is a first-in-class, mutant calreticulin (mutCALR)-targeted monoclonal antibody currently in clinical trials for essential thrombocythemia (ET). It targets the underlying drivers of the disease rather than just managing symptoms.

. . . please note, this antibody is being tested for those with the CALR driver (rather than the JAK driver).

If you go to the top of this page and in the search box type "drbart86" -- you will meet someone actively participating in this trial.

It is VERY exciting indeed!

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@janemc
Let's hope they find something for the JAK2 driver soon!
Jane, are you on HU?

And, I am wondering, has any one tested, or test regularly for inflammation in the body? If yes, what tests?

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Profile picture for gigi05 @gigi05

@janemc
Let's hope they find something for the JAK2 driver soon!
Jane, are you on HU?

And, I am wondering, has any one tested, or test regularly for inflammation in the body? If yes, what tests?

Jump to this post

@gigi05

Yes, I take 7,500 mg of HU each week.

As to inflammation, here's what Google AI has to say:

Yes, Essential Thrombocythemia (ET) is closely linked to chronic inflammation. The bone marrow overproduction of platelets in ET is driven by underlying inflammatory cytokines, and this constant state of inflammation causes constitutional symptoms like fatigue, night sweats, and low-grade fevers.

With you, I wonder what tests can be done to monitor inflammation -- ??

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I continue to do a little 'research' here and there, to understand this diagnosis/condition/MPN as best as possible, and see what else is out there.
The reason I asked about inflammation is exactly as you said, linked to chronic inflammation. Here's an insight i recently gained --it is not only driven by inflammation, but it also causes inflammation. So one of my questions is, what is the cause of all of this inflammation? And, how can this be measured? I had done a crp test before, but it did not show any inflammation. I'll be repeating this just to see. Is any one measuring their inflammation, or tracking it? and if yes, using what?

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Profile picture for janemc @janemc

@gigi05

Yes, I take 7,500 mg of HU each week.

As to inflammation, here's what Google AI has to say:

Yes, Essential Thrombocythemia (ET) is closely linked to chronic inflammation. The bone marrow overproduction of platelets in ET is driven by underlying inflammatory cytokines, and this constant state of inflammation causes constitutional symptoms like fatigue, night sweats, and low-grade fevers.

With you, I wonder what tests can be done to monitor inflammation -- ??

Jump to this post

@janemc @gigi05
I am glad this topic has been brought up. I am 82 and have taken HU since 2022 for ET JAK2. I only take 500 mg four days a week. I find my arthritis much worse…mornings are especially hard. I do not know if it is the toxicity of HU, the Eliquis blood thinner, or just old age. Since. I am on a blood thinner I can only take Tylenol.
Best wishes, Eileen

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Sorry to hear the arthritis is much worse. Thank you for sharing. It's really good to hear what others are taking, and how they are faring.
One of the things that is helpful whether on HU or not is to take care of the things that are known to create good or better health. These are the things that bring better balance to our lives. You may already be doing these, but here are the most important ones to remember : Anti-inflammatory diet, active stress management -on the physical, mental, emotional level, daily exercise and movement, esp important for women, and hydration.

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Profile picture for gigi05 @gigi05

@janemc
Let's hope they find something for the JAK2 driver soon!
Jane, are you on HU?

And, I am wondering, has any one tested, or test regularly for inflammation in the body? If yes, what tests?

Jump to this post

@gigi05 I am interested in this too! I’m to start Pegasys next week

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So I just got the results from a blood test yesterday --C-reactive protein is indeed elevated this time. Grrr --no clue of course of the reason, and not sure right now on my plan of action to combat this. Anyone ?? Testing for inflammation? which tests? Things that worked??

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