On 6/8/2008
bubbles77450 wrote:
Hello I am 38 yr old Female and I have a Diagnosis in the process of confirmation for Myelofibrosis. I have had two BMB in the last month and both were dry taps!!! Has anyone else found this to be a common issue for MF patients. They have tried several locations and no luck. I have hgb of 8.8 and rbc and wbc stay right on the boarder or just below normal. Platlets are on the high side of normal... I am being seen at MD Anderson they are wonderful. I have weekly iron infusions and aranesp treatments for chronic anemia. My spleen appears to be normal and my karyotype came back normal. but they were unable to do the cryogenic test due to dry tap.
I would appreaciate anyone who has any experience with MF who can chat lab results with me. I have doing alot of home work but would be nice to know what to expect and when to be alarmed, Seems like everything is alarming right now :) trying to stay patient while I wait for the second BMB results they will all be back on June 17th Long wait ..............I am just so tired all the time. Making the bed has become an event. I would full time in an office environment and alot of hours. energy drinks and G2 water and b12 shots seem to help. I also had a gastric bypass (rouge n Y) in 2002 (lost 174lbs) but I have absorbtion issues that dont help the situation. Makes some meds a challenge to get orally.
Hi there Bubbles,
I am a 65 yr.old Male positively diagnosed with IMF in Oct.'06 and have had 5 BMB's. 3 dry taps and 2 good. I also am anemic. I currently am stabilized with daily Thalidomide 100mg. and weekly Aranesp self injection of 300 mcg. My Hgb level is steadily between 9.0 and 9.5, RBC & WBC are close to normal as are the rest of my numbers (low, but close to normal). It has been a long uphill battle to get me stabilized and my Hematologist is pleased, so am I. I have not needed a transfusion since the end of February, Praise God !
The current plan is to stay on this treatment for at least another two months, with weekly CBC's. Within the next two months we are hoping that I will have the opportunity to participate in a Clinical Trial at OHSU Portland and set the IMF back as much as we can. I have the JAC 2 gene mutation and there are some new drugs which show promise in restoring the JAC 2 gene.
I'm not sure if any of this has helped you, but, if not just ask some specific questions and I'll be happy to answer what I can. I have learned so much from this site it is a real blessing to us all.
I share the same frustrations with the energy drain and other limitations. Before I retired in Jan.08 I spent 32 yrs. working in the National Forests and fighting fires when need be. Pushing the limits was my favorite pasttime and working 16 hr shifts was my challenge. Now, I look foreward to going on a local fire assignment (?) and working 10 hr. days with a siesta after lunch. Quite a change, but, I certainly have learned to appreciate every day.