Well, saw local oncologist today. He said I have been in hematological remission for almost 2 years. He said his reaction usually would be to reduce, but last time I was at MDA Dr Marasova said she wouldn’t recommend any lower than 150-175. I am on 175mcg every 2 weeks. He said he would like to see if I am in molecular remission but test is expensive and hard for him to get covered. He basically said he wants MDA to do it. He said if my JAK is zero I maybe able to stop everything which scares me! For now we are not rocking the boat. Staying the course waiting to see what MDA says in 6 mos. It was all good news today. I think before I would ever stop I would want to inch down. I just thought it was interesting that is even a possibility. Years ago before Dr V retired he said it was possible. Besremi has saved my life! So grateful for modern medicine and thanks to everyone on this site! Everyone is so supportive! Will have another hurdle in April, a MRI of my brain will likely reach out for any good vibes before I do it!
Today’s visit 😊 Besremi: Well, saw local... - MPN Voice
Today’s visit 😊 Besremi
Glad to hear that Besremi is working so well for you. I would agree with your decision to continue on it for now; however, at some point you could consider a dose frequency reduction. Reduction to 1x/month is indicated for people who are in CHR for 1 year. besremihcp.com/dosing/?utm_...
I am a bit perplexed at your local hematologist reluctance to order the JAK2 quantitative analysis. While prices may very, the test is available for as little as $358.75. I have never had a problem getting the test authorized in the 7 times it has been done. I usually go through LabCorp.
Cost from Johsn Hopkins $358.75 pathology.jhu.edu/test-dire...
Cost from Jason health $688.00 findlabtest.com/lab-test/ge...
Wishing you all the best.
To be honest I have no idea why he didn’t order it. I think I am his only pt on Besremi and he just wants to see what MDA says. I agree with the reduction. August will make 1 year of control at this dose. So I see the reduction coming then for sure if not sooner, but will see, He wants me doing a cbc every 2mos.
good luck to you snd msy god bless you
WOW ! This is such wonderful news. Thank you for sharing and keeping us posted. It’s great to hear such positive news! Well done!
That's fantastic news. So happy for you!
This is excellent news!!! I'm with you -- Besremi has made a huge difference for me. I'm so happy it's working so well for you!!!
Great to read your good news.
Dr Jean-Jacques Kiladjian’s presentation ‘Long term outcomes of interferon in MPNs’ is relevant and worth a watch if you haven’t already seen it? Thanks to Paul123456 for having posted the link recently; the talks were very helpful and informative.
I’ve had a few MRIs and find them daunting too (keep my eyes closed once in the tube!) but it does mean the medics have a really clear view. Last time I tried to treat it as a golden opportunity to do absolutely nothing for half an hour (altho’ with some weird loud knocking noises going on!). The team were good about telling me whether each scanning section would be short or a bit longer which helped a lot.
I just lay really still in the MRI and just tears fall down my face. I wish I could look at it as just a time to relax, but it unfortunately reminds me that I have to deal with this for the rest of my life. I keep telling myself one day I will not be nervous and I will be ok doing all of these tests! It just hasn’t happened yet! However, I am hoping if they make me do this one coming up that after that I am going to tell them next one will be in 3-5 years pending symptoms! I have already had like 5 in not quite 3 years! They are just daunting, like you said. But putting my big girls pants on this year! Learning to be soooo grateful for this life and my family and all the daily blessings I have. Thank you for the encouragement!
That's so sad! I was quite rattled by the first one I had in the past few years and had a tear or two in the changing room afterwards. So much depends on how supportive the MRI team are and whether they talk to you or just get on with it. Hope it all goes well in April and that they're super supportive.
What is the reason for your MRI . Is it related to the MPN diagnosis?
Not sure if you meant to ask KLCTJC or me? My most recent MRI followed a prolonged atypical migraine aura / TIA. That led to PV diagnosis because the MRI showed I'd later had a, fortunately tiny, cerebral infarct (stroke).
Another thread 'Migraine aura and aspirin v clopidogrel' has more details.
Interesting to read your previous posts - we were diagnosed at the same time (altho' different ages). I had also 'luckily' been put on aspirin in the past (problems in pregnancies and then when I had the 'event' last year), we both have high Hb with v low ferritin. I’ve struggled with the latter as medics can assume I won’t have symptoms of iron deficiency as my HB is high but I can be v tired and have low exercise stamina when the ferritin bottoms out.
a couple of things to factor in, I heard Dr Silver say that even if bloods and AB imply remission some patients can still show MPN in a BMB.
I don’t know that much about Marasova at MDA , if she is DrV replacement she is perhaps up there. I would probably follow advice from her or another MPN expert as opposed to the local
I have seen her twice. She inherited me after I started Besremi and I started doing well pretty immediately after starting. I think it took less than 6mos for me to achieve optimal labs on Besremi. So, she didn’t really have to do much. I am going back in 6mos and going to talk to her about what he said. Will be watching my cbc every 2mos in the mean time. I even talked to local doc about reducing to every 3 week injection to start. I just don’t want to rush reduction. I want to reduce as slow as I increased the medication. And then see what happens. The other issue is the MS. With the Besremi seeming to work for it, not sure what to do moving forward if they say to stop completely. But I think this is classic for medicine. All trial and error and god made us all different. So, it is an exciting time and will just see what happens moving forward.
this is quite encouraging news. Congratulations! Besremi has shown very positive results for you. Thank you very much for sharing. It boosts confidence and hope for those of us still on the journey. Stay safe!
I am SO HAPPY FOR YOU! You are right about all you said. Better slowly lower. My MPN specialist in Austria is very down to earth. She told me, (I also read it) that when Besremi is taken for 5-6 years, many patients go into remission (Remission with no Besremi) for 2-3 years. I am not sure if you are in true remission if you are still taking the Besremi.
I stopped the treatment last June due to terrible side effects after having stopped/started several times with 50mcg. After a 10-month break, I'll be restarting at the end of March. I know the stuff works. I'm trying to get my body to the point that I can tolerate it.
👍😀
Congratulations! I didn't know it was possible to be in remission from a blood cancer.
This is such great news, my friend. Congratulations, and keep going!
Hi there - This is fantastic news thank you for sharing - having started my BES journey only last Nov, it's so encouraging to see some exciting news on our forum shared by many who are able to tolerate the drug - I have been ok at my v small dose of 50mcg per fortnight so tomorrow I will increase slightly to 70. All of the cells are coming down nicely esp platelets which are now under 600 (and had been as high as 1000-1500 generally) and my HCT been at a steady reduced level of .41 and my whites are now c. 12m, were 15-16m - so far so good. Thanks KLCTJC and I hope that you get the answers you seek, but meanwhile you are right to be cautious. Take care, Sarah xx
Great news and happy for your result.
Besremi to the Rescue 🤞🏼
Confused
