WHEN do you hematologist recommended test your genes after taking Besremi?
hat kind of test a NGS or whole test also called mieloide panel or only we must test the JAK2V617F and its allelo burden? I dont find any article or paper or something where it is said to patients.
Most often I believe they track the mutations that were found at Dx or start of therapy. For example someone might have Jak2 and TET2, so the allele burden (AB) for each of these will be followed. I recently posted on my Jak2 changes (decrease) on Bes.
But there can be additional mutations that arise upon taking IFN. For example in this post, there is a small possibility that DMNT3A can arise where it was not detected before starting IFN, and IFN was slightly more likely for this than HU. With a fresh Myeloid Panel, by NGS method, such new mutations can be uncovered.
healthunlocked.com/mpnvoice...
But not all Drs check NGS for these at any time much less for follow ups.
Thanks. My hema wants to test only Jak2, but I think I will need the whole panel. What do your doctor recommend you?
If you have never had the NGS full panel, you should ask Dr about it. It is modern practice to get this, even if it's not actionable now it's likely to be so in the future.
In my case, since I had only Jak2, that is the only one being checked for changes as of 6 months on Bes. (I asked Dr to confirm this was the only one checked, I will know for sure next week) But at some point I would expect to get another NGS as new mutations are a sort of progression worth knowing about.
I tested all my genes 2 years ago but I didnt take Besremi. What do you hematologist recommended?
If you had the "all genes test" (NGS) your 1st step now is to get those results. It should have a list of which mutations they found and what % each was.
From that you can compare any change after starting Besremi (Bes). At least your Dr should test for % of all the the same mutations that were found 2 years ago. As I noted my Dr did the allele test after 6 months of Bes, but checked only Jak2 since that was all I had. I expect he will do it every six months.
There may also be a separate list of your "karyotype". This is a different type of gene test. All these are good to have in your own records.
Your Dr may have the results of 2 years ago but by asking your Dr for it, and if you feel ok about to share it here, it will help us and you to get a starting point to understand your questions better.
your haematologist should I believe test for any mutated gene.
I think so but what is recommend?
you could just ask about the Calr and mpl gene.
Sometimes no defected gene is possible.
That’s when you are triple negative.
Have you googled MPN voice.org.Uk ?
It’s well worth looking at
Good luck.
My MPN Specialist wants to do it at 1.5 years. The regular hematologist suggested 3 years. I am going with what the MPN Specialist suggests.
I am going with what my body says. I dont want to take Besremi the same time or dose if it is not necessary. To do it I need to test the genes. Thanks. Who is your hematologist, please?
The MPN Specialist I see is Dr. Tania Jain at Johns Hopkins. My regular hematologist is Dr. Amit Sarma at Virginia Cancer Specialist. They are a fabulous MPN care team. Dr. Jain's mentor was and is Dr. Ruben Mesa. Dr. Sarma is a wonderful physician. He listens to his patients and takes the time to answer questions and concerns. He never rushes a patient out of a session.
I am truly blessed to have such excellent care from my team. I wish everyone was as fortunate.
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