Hello this is Ben from VA! I was diagnosed with MPN last year and use Besremi every 2 weeks.
I have jak2/tet2 mutations which makes me feel confused and scared since the majority of PVs only have jak2(or other so-called driver mutations). I read a lot online and it seems tet2 is not the worst thing, but still upset.
Does anyone also have this condition？Hope to hear from you.
Paul123456 Hi Paul! Your posts really encourage me especially for the mutation reduction part. Do you observe a continuous decline in TET2？Thank you and best wishes!
I've replied to your post on my thread Ben 👍
I also have a JAK2 positive PV but a different non-driver mutation, NF1. The bottom line is that these non-driver mutations can increase our risk of progression. Some seem to be worse than others. The fact that I have a non-driver mutation played into my decision to intiate treatment with the interferons. Besremi is still a new drug, but the data on progression free survival looks promising. in addition, my JAK2 allele burden has dropped from 39% to 9% in just 18 months. While some are still debating the significance of this, I believe that less of the mutation is definitely a good thing.
I do not waste any time worrying about the addition of a non-driver mutation as it is not something I can control. I am already taking the drug that I believe gives my the best chance of progression free survival. In addition I am working to reduce systemic inflammation ad reduce my exposure to the toxins that might increase my risk of progression or secondary cancers.
Wishing you all the best.
Hi, I have the Jak2 mutation and DNMT3A mutation. My MPN specialist says that having one or two non driver mutations is not so bad, he says when we get to 4 or 5 it may make a significant difference. I suppose we may continue to acquire additional mutations as we age.
I agree with Hunter that there is no use worrying about additional mutations as it is something we cannot control. I rely on my MPN specialist to keep me updated.
Best to you.
Ben - I do...jak2+ with TET2 mutation as well - m MPN specialist said the Jak2 allele burden (at 41% which is quite high for ET) was of much more concern than my TET2 (4%) - in fact he said that the lab looked three ties at the TET2 result as they don't even report anything <2%. My understanding from conversations with him is that, for ET, the TET2 is not horrible..of course would be best to have no driver mutations or no additional beyond the Jak2. We are retesting my allele burdens probably end of this year/early next year - after about 15 months on Peg so it will be interesting to see if the Peg has had any effect on either Jak2 or TET2
JAK2 mutation = MPN????
Tet2 and inflammation
Jak2 mutation!
