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What are treatments for myelofibrosis?

Blood Cancers & Disorders | Last Active: 10 hours ago | Replies (60)
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@dax1million

Colleen, you had asked me to let you know how my husbands appt went with specialist at Charlotte. The Dr. said he was seeing some leukemia cells showing up in his blood work. He didn’t seem to want to give a lot Hope. He told us he would send the treatment to our local oncologist. We had an appt. today with our Dr. he told my husband he would start treatments for 7 days thru pic line with Vidaza. Then off for a month to see how he reacts to the chemo. We have been told from the beginning there is no cure for myelofibrosis which we get and accept, but we don’t understand why they don’t even talk about hope for some time. Maybe it’s because his platelets are always low and has platelet transfusions 2 times a week. My husband has always been very healthy, so it is a nightmare now.
Dax1million

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Replies to "Colleen, you had asked me to let you know how my husbands appt went with specialist..."
Colleen Young, Connect Director | @colleenyoung | 11 hours ago

@dax1million, I believe there is always hope. Hope may have to be redefined or reframed upon acceptance of the realities we face as they evolve.

I like this writing in an article written by a former colleague Glen Horst called Hope and Denial https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Emotional+Health/Hope+and+Denial.aspx

Excerpt
"... hope is linked to the future and to the plans and wishes you have for the future. A serious illness puts question marks over how much future you will have and what it will be. It threatens your control over your future. ... If it becomes clear that there is no cure, your hope may shift to living the rest of your life as well as possible. There is the hope to love and be loved, to feel good about the life you have lived, and to live in the present moment with satisfaction and a measure of peace."

What does hope look like for you and your husband? What helps to reframe hope?

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