Try our website and daily digest by email, it is free, www.mpdsupport.org, we have about 3,000 and many have idiopathic myelofibrosis.

Robert, listowner

Hello, you may already know this, but the web address won't work unless you take the comma away. My brother-in-law was diagnosed with Myelofibrosis almost 2 years ago so I'll probably be running into you again:)

I'm very sorry to hear you have this. I will send a prayer out for you.

I was diagnosed with Myelofibrosis last year although may have had it sometime before that without all the symptoms. Meds do help and some days I feel perfectly normal. Lately some depression has slipped in however so I decided to join an on-line support group. I do work part-time at a high school and that also helps! My husband is just wonderful so I am lucky. It's best to try to live each day as best we can! Keep smiling!

Hello everyone, I apoligize for not getting back here sooner, but unfortunately the last few weeks have been some what exhausting. Nancy i'm so sorry to hear that you have this illness. When I first started researching mylofibrosis, most all the information I found was about multiple myleoma. (hope I spelled it right) I asked my doctor which one was worse, and he said "it's hard to tell" Presently my spleen is doing alll the work, so because of that it has enlarged. The oncologist put me on Revlimid to try to shrink my spleen. If I can't tolerate the revlimid, I don't know of any other treatment that will shrink my spleen.

I'm very sorry to hear that you have this disease also. I was diagnosed 5 yrs ago, but a blood test 3 years before showed low counts also, my gyn thought it was low iron and wanted me to supplement the iron and go back to recheck, and I didn't. I'm glad I didn't, with no treatment, I saved myself from the worry of having this. Fatigue is what lead me to the doctor in the first place.

Nancy you mention you were on meds? May I ask what your on?

Barbzq, I hope the Revlimid helps you. I joined a study at MD Anderson twice, once was Revlimid, after 6 mts my doctor took me off. I had terrible cramps and diarherra from it, and my blood counts started dropping all after the predinsone was removed. I wish you the best of luck on the drug. My doctor told me it had helped a few people in the study. I also did Pomalidamide (? spelling), I was taken off starting my 3rd mt. I had to have 2 blood transfusions due to the medication.

Besides those two transfusions I've not had any other transfusions. My biggest complaint is the fatigue, but I also suffer from chronic fatigue syndrome, so I get it doubled. My spleen is enlarging lately, it's down to my waist, and has caused me to cut back on the size of my meals on most days. I can feel the pain from my spleen in my back also.

Wishing you all better days. And yes we have to focus on living life as best we can and enjoying every moment.