I heard wonderful things about this list-serve and would love to connect with others with MPNs overseas -- I'm from Canada. I was diagnosed with PV one year ago (thought likely had it for almost 3 years) and I'm having a hard time deciding whether or not to go on interferon. I am currently only on aspirin and doing phlebotomies but I'm very nervous about progression (my hemoglobin and hematocrit have started to go down in the absence of phlebotomies) and would like to decrease my allele burden (which I learned was over 60%, anything over 50% is apparently 'high'). My hematologist is great but he is against interferon.
My concern is that I have also learned several months ago that I have 3 mutations on top of the JAK2 (TET2, CEBPA and BCOR) and I wonder if interferon would work for me or if it would induce progression?
Is there anyone here who has additional mutations beyond JAK2 and has tried interferon with success?
Thank you in advance for taking the time to read my post!
Faye
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Faye2011
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Hi Faye. I am from the USA but am currently in Ireland for a month. Welcome. This website is awesome. Everyone is so loving, sharing and supportive. Unfortunately I cannot answer your question about inteferon. I am only on aspirin. I must keep my hemoglobin below 14. If it goes higher then phlebotomy is done. Had it checked the other day and it is 13.8. I will be in Ireland until the 12th of June. I cannot decide wether to have a phlebotomy done here or wait until I get home. How does your hemoglobin go down in the absence of phlebotomies? You are so lucky. I am sorry that I cannot be of help but wanted to wish you welcome. Xx Harlie
Thank you so much, Kinsalelady for your kind words. I hear it's a beautiful country. I suppose whether or not you get your phlebotomy in Ireland might depend on how quickly your hemoglobin rises. Enjoy the rest of your time in Ireland and safe travels home!
You have many questions and some are quite technical.
I have been on interferon for many years and this is my understanding of its effect. It does reduce the Jak2 burden but over time, unspecified. It would take a while to get the dose tailored to your needs. But! Interferon is also primarily used to reduce counts. If yours are dropping it may not be right for you at the moment. Also work out why your haematologist doesn't recommend it. This is my understanding and there may be other views.
Since you are in Canada you could look at this forum. They are also very helpful about technical matters and they have a list of MPN specialists if you needed it. Email a list owner to get subscribed.
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I have just progressed to PV from ET, after 16 yrs, I know it is easier said than done but don't worry about progression it may never happen, I have had my own little melt down, and am now back on the side of reason. What interferon are you being offerd ? If it is Pegulated interferon (slow release ) I would recommend trying it. If it is the original one I would think twice, as the side affects are worse. I was once told the side affects need to be better than the consequences of not taking any medication. I belive PEG has reversed fibrosis in some degrees but as I have been on it for a year and have just progressed to PV it may not stop future progressions, but maybee longer term use may have done.
Thank you for your response, Ourlife. You are absolutely right about not worrying and I know it's easier said than done but something we just need to keep practicing! I didn't worry too much before I found out I had all those mutations (and according to my understanding, most PV patients have only 1 mutation and I learned I had 4)...I haven't been recommended any interferon. My interest in interferon is based on my own reading and learning that it can, in many cases, reduce allele burden and hopefully slow down potential progression...
hello Faye and welcome to our forum, as you can see it is a very welcoming and friendly forum, I can see you have had some replies already to your query which I hope will help you. It might be a good idea to get a second opinion before you decide on any treatment, just so that you have as much information as you can get before deciding. Best wishes, Maz
Hi Faye - my condition is simpler than yours as I just have ET with one mutation, CALR. I guess the obvious questions (which you've probably already asked..!) are why is your doctor not keen on interferon and what if anything do they suggest instead..? I'm on peg interferon and happy with it. I have a study poster based on good results with 45 patients in my clinic in the UK - happy to send you a copy if you want to PM me with your email. Andy
Thanks so much, Andy! I have downloaded several studies on interferon and my only concern is that some studies seem to suggest that for those patients with the TET2 mutation and additional mutations over and above JAK2 may experience progression with interferon or interferon resistance. If I didn't have those additional mutations, I wouldn't think twice at this point about trying the interferon.
My Dr. simply said that there is not enough evidence that interferon is helpful. Because mutational status is not factored into which category PV patients fall into (high/low risk), I am officially 'low risk' because I am under 60 and my blood counts can be controlled for the time being with just phlebotomies...
I have decided, however, to seek a second opinion.
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