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I Am ET,MF The Test Results Showed That I Have A Mutated CARL Gene. Is There Anyone Like Me Who Is Being Treated?

A myMPNteam Member asked a question 💭
Viet Nam

Currently I am being treated with low dose Aspirin. Other than that, there is no medication at all. If anyone has the same condition as me and is being treated, please give me more information. Thank you very much

April 6
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A myMPNteam Member

Hello BichDiem.
I'm glad you're here and getting good information from Steve and others on this site. I'm also glad to here that you have an appointment this month to learn more from an expert.
To answer your questions from a few days ago, I was diagnosed with ET in 2011. I immediately started on hydroxyurea (also called hydroxycarbamide) to reduce platelets. Also aspirin, 81 mg per day. For the past 19 months, I have been on aspirin only.
Good luck with your appointment.

April 9
A myMPNteam Member

ET is a different condition than MF. A clarification would be that you have MF with thrombocytosis. For those who have progressed from ET to MF, the reference is to post-ET Myelofibrosis. You will find others in your same situation with the CALR mutation. The treatment protocol for people with post ET MF or primary MF with thrombocytosis can vary based on individual MPN profile. Suggest that you review your question with a MPN Specialist. Just in case you are not already consulting with a MPN Specialist, here is a list. https://mpnforum.com/tsr-the-list/

If you do in fact have a Post-ET MF, there is information available about this condition. Here are a couple of articles. There is more available.

https://academic.oup.com/labmed/article/54/1/13...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC55...

Essential Thrombocythemia and Post-Essential Thrombocythemia Myelofibrosis: Updates on Diagnosis, Clinical Aspects, and Management
Essential Thrombocythemia and Post-Essential Thrombocythemia Myelofibrosis: Updates on Diagnosis, Clinical Aspects, and Management
Patients with post-essential thrombocythemia and post-polycythemia vera differ from patients with primary myelofibrosis
Patients with post-essential thrombocythemia and post-polycythemia vera differ from patients with primary myelofibrosis
TSR — The List
TSR — The List
April 6
A myMPNteam Member

That would make sense given what you describe. The best clarity would come from reviewing your history with a MPN Specialist. This would also be the best source to determine whether you should initiate treatment with a JAK inhibitor or some other option.

April 7
A myMPNteam Member

From the link you sent, https://academic.oup.com/labmed/article/54/1/13... I think maybe I have essential thrombocythemia (ET) which progresses to myelofibrosis secondary (after ET)

Essential Thrombocythemia and Post-Essential Thrombocythemia Myelofibrosis: Updates on Diagnosis, Clinical Aspects, and Management
Essential Thrombocythemia and Post-Essential Thrombocythemia Myelofibrosis: Updates on Diagnosis, Clinical Aspects, and Management
April 7
A myMPNteam Member

I have thrombocytosis (ET), a bone marrow biopsy showed I also have myelofibrosis (MF). My genetic test results showed that I have the CARL exon 9 gene mutation.
I'm in Vietnam. Not many people here know about my disease. I have an appointment with an experienced doctor to further advise on my condition on April 26.
Thanks Steve. I will find out more information through the links you sent. Thanks a lot.

April 7 (edited)

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