Are their support groups for Myelofibrosis?

Posted by toste @toste, Aug 13 9:48am

Diagnosed with Myelofibrosis living in California. Would like to find out about group support.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Janell, Volunteer Mentor | @jlharsh | Nov 7 5:40pm

In reply to @toste "@jlharsh my husband was diagnosed in June-July. I am doing research for answers." + (show)

Hi, @toste. I looked at your profile and see that you have found Myelofibrosis-related discussions and finding others in your same position. Kudos for you to take on learning about your husband’s diagnosis! I hope you are feeling more comfortable, finding out more that will help you both.

How is your husband doing? How are you doing?

jtcat7 | @jtcat7 | Nov 8 11:50am

Hi, @toste. I was diagnosed with prefibrotic myelofibrosis in June. JAK2, ASXL1, ZRSR2 & TET2 mutations. Started with a platelet count of 1.4 million. Now down to 490k after 2,000mg/day of Hydroxyurea then 1,000 weekdays & 500 weekends. Still trying to find a balance with the Hydroxy between platelet count & white blood cell count. Good luck!!
Cheers

rivieramaya2009 | @rivieramaya2009 | Nov 8 12:50pm

In reply to @tbrittingham68 "@davi0937 Wondering if you found a group specific to mylofibrosis. I too was diagnosed this June..." + (show)

@tbrittingham68 I also was diagnosed with secondary MF in June2025. Had ET for 33 years with no symptoms other than an enlarged spleen. Haven’t felt well or like myself since April. No medication until I get worse. I wish you well!

rivieramaya2009 | @rivieramaya2009 | Nov 8 5:06pm

In reply to @toste "My husband was diagnosed in July." + (show)

@toste I was diagnosed with secondary MF in June. Had ET for 33 years with no symptoms until it morphed into MF. Haven’t been myself since April.

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