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Are there support groups for Myelofibrosis?
Blood Cancers & Disorders | Last Active: Jan 31 3:55pm | Replies (24)Comment receiving replies
@tbrittingham68 Welcome to Mayo Clinic Connect. While you won’t be able to meet in person, you’ve just joined a huge support group for myelofibrosis. It can be so helpful being able to speak with others who are walking along a similar path.
I’m putting in a link to introduce you to a couple of the members. You’ll meet people like @snakebite @davi0937 @1pearl who are all at different stages with their MF.
~What are treatments for myelofibrosis?
https://connect.mayoclinic.org/discussion/mylofibrosis-1/
There are so many discussions with our MF group that I’m not sure which would be most relevant for you, so here are the results of a quick search. Please feel free to scroll through results and to jump into any conversation to ask questions.
Search Results for Myelofibrosis:
https://connect.mayoclinic.org/search/
Are you currently involved in treatment for you MF or is this a mindful watching period for you?
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@loribmt
I have been diagnosed with MF in October 2025.
Having read the dreadful list of side effects of Jakafi treatment, I have decided to stay put (what you referred to as mindful watching period). I am currently waiting for a second opinion from UCSF.
What we have so far is JAK2 mutation + platelets hovering around the 1,000 mark, but no enlarged spleen. Currently only taking Aspirin and Lipitor (statin)