myelofibrosis

[glyndale]

Is anyone else here on" watch and wait ", am a bit unsure why treatment isn't started,forgot to ask my consultant cos I wasn't thinking straight.

[Grizly]

yes I’m on the watch and wait. What ever that means!

My blood levels have been slowly going south the beginning of the year my red blood cell were around the 100 mark and my platelets around the 90s

My last results a few weeks back was red blood cells 87 and my platelets 47. My consultant said as I have just recovered from Covid that may have affected my bone marrow so wants to have more bloods taken in a few weeks to see if this was the case. She wants me to start on Epo injections but she thinks it may not be effective. So it looks like I will be starting transfusions soon. I have ask if there were any trials I could be part of but apparently there’s none around for me sadly.

[Scaredy_cat in reply to Grizly]

Have you talked about ruxolitinib or fedratinib? Fedratinib is better if you have low counts

[Grizly in reply to Scaredy_cat]

Thanks for your reply. Sacredy _cat I have a face to face meeting with my consultant and will be asking these questions I’m. Cal-r positive so not sure what treatments are available to me

[Meatloaf9]

Hi, there is another post today about the MPN Boston Patient and Caregiver symposium, posted by Hunter. If you follow the links there is a section there by Dr Kuykendall on MF. Maybe there is something there that can be of value to you. Best to you.

[glyndale in reply to Meatloaf9]

ok thank you