I have just learned that my PV has progressed to MF. My doctor has taken me off Besremi since my blood counts, particularly my platelets dropped. Now about a month and a half off of it. I'm getting a CBC in 2 days and trying not to be scared. My platelets did start to come up right after stopping the Besremi (53 to 87 in 2 weeks). I hope this trend continues. My red and white are in the normal range but lower than normal for me. I am not experiencing any itchiness or night sweats so my doctor has suggested a wait and see approach for now.My main concern is what to expect. I'm 52 and at times, overcome with distress due to this diagnosis.. I am following an anti-inflammatory diet, exercising regularly, meditating and trying to stay positive. I'm making a list of all the things I want to accomplish before a time when/if my health prevents it. This is all helping me cope
Reading posts here is also helpful. I have seen posts here from people with MF who have had it for quite some time which I find encouraging. I've also read about BMTs here too. Any words of encouragement or realistic expectations would be so appreciated! I want to stay as positive as I can but do not want to deny what is happening to me.
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marlenablue
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Sorry to hear this. Is your Hem a MPN specialist? Sounds like you went up to a high dose of Besremi very quickly? With Pegasys I started very slowly at 45 mcg every other week and only hit 120 mcg after over a year.
Interferons take time to work, my platelets and WBC halved within two months but RBC took 18 months.
Also Interferons can improve marrow fibrosis but again takes time.
Is your Hem suggesting switching to another drug that’s easier on platelets?
My doctor is an MPN specialist and says Besremi is not approved for MF. She is concerned that Besremi will lower my blood counts further. So the plan is to wait and see and start on Rux if I have symptoms. I did ramp up to the max dose and was on 500 mcg for about 3 months. I have an appt this month, I'll ask her about a lower dose of Besremi.
Sorry to hear about the progression to MF. It sounds like you are taking good steps to maintain your overall health and attitude. Well done for that.
Progress is being made on treating MF. There are more JAK-inhibitors available now and more on the way. there are also novel approaches to MF in development. Allogenic stem cell transplant is another option for some with MF. Your MPN Care Team can best advise you about the full range of your options.
You may find several presentations from the Boston MPN Patient and Caregivers forum interesting and informative. Suggest the presentations by Dr. Andrew Kuykendall (MF treatment)and Dr. James Rossetti (Transplants) may be of particular interest.
I progressed from et to mf 2 years ago.im 69 and when my platelets dropped below 100 I was eligible for Ruxolitinib which workedish but I wasn't to increase the dose because my platelets had fallen to 70ish, so now I'm on fedratinib and my platelets have recovered to over 100. There are other drugs in development which may help when your platelets are low. I'm now expecting a stem cell transplant later this month
hello Marlenablue, I am so sorry to hear this, completely understandable that you are scared about this, it might help you to have a buddy to talk to, a buddy is someone who has a MPN and give you support and advice, if you would like to have a buddy please email me at buddies@mpnvoice.org.uk. Also, we held a virtual forum on 8 Nov focussing on stem cell transplants, you can view the video here healthunlocked.com/mpnvoice...
So sorry to hear about your progression to MS and understand your fears. It sounds as though you have a competent haem who sounds confident in the advice given. I wish you all the best, not least managing the mental toll, but it does seem that there has been recent progress in managing MS, with more options emerging.
I remember so well the feeling of being overwhelmed with distress when I was diagnosed in 2020. It's good that you are not suffering with itchiness or night sweats. Have you had a bone marrow biopsy? This will tell you the grade of fibrosis which will inform the choice of treatment. I went straight onto Ruxolitinib as I was Grade 3. My platelets dropped very low and kept falling, but I think the newer drugs don't affect platelets as much.
I had a BMT in September, which was really tough but I am recovering now, although it will be some time before I'm back to normal.
My Dr says there is a really good success rate with BMTs. I'm happy to hear you are recovering. I am also grade 3 MF. BMT may be an option. For now, my blood counts will be monitored to see what happens off the Besremi. I would love to talk to you more about your experience once you feel more back to normal. Best wishes to you!
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Is this a sign of progression from ET to MF?
Bmb
First BMB tomorrow :) *update now done*
Life expectancy with MF
ET diagnoses, Hydrea and transform to MF
