Welcome to Connect, @dax1million. Myelofibrosis is one of several conditions that is associated with MPNs…myeloproliferative neoplasms. That’s a mouthful for group of blood conditions where the bone marrow is producing too many of a particular type of blood cell whether red/white/platelets.
Primary myelofibrosis or MF, is the condition where the bone marrow itself is impacted. Myelofibrosis is caused by the buildup of fibrous tissue in the bone marrow. The fibers become thick and affect the bone marrow's ability to make healthy blood cells. In your husband’s case, he is no longer able to make enough platelets.
This is all so new to both of you so I’m very glad you joined Connect. We have several members with MF and all are happy to answer questions you might have. There’s also a great deal of information in the conversations. You may have to skim over some that aren’t relevant but most are helpful, some with links to MF articles.
Let’s get you into the discussion group for Myelofibrosis.
Here are several links for you to peruse. Some are older conversations but you can reverse the order by switching to from ‘oldest to newest’ to bring up more current discussions.
Myelofibrosis https://connect.mayoclinic.org/discussion/myelofibrosis-24a025/
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What are treatments for myelofibrosis?https://connect.mayoclinic.org/discussion/mylofibrosis-1/
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This is a list of all the MF discussions:
https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=Myelofibrosis#discussion-listview
It’s only been a month since your husband’s diagnosis so I’m sure you have a ton of questions. I see there’s a doctor’s appt coming up Wednesday. It may help to bring a little notepad or make notes on your phone of questions you and your husband would like to ask the doctor so you don’t miss anything you wanted to talk about! Appointments can get off track quickly. ☺️
I’m sure you’ll both learn more about this blood condition and treatment at the appointment. If you don’t mind sharing, would you please let me know what you find out?
Lori, our appt yesterday was not very good. The Doctor said he could see some leukemia cells and seemed not wanting to suggest anything. So he has started him on Vidaza for 7 days then off for a month to see how he reacts to chemotherapy. His platelets are still very low, having 2 platelet infusions a week. We know this isn’t curable, but encouraging him for hope and more time.
Dax1million