I have spent so much time reading this forum after getting a terrible diagnosis, it was so helpful to help me get my head around it. I decided its time for me to post. After some symptoms of fatigue and an annual physical showing pancytopenia, my husband Ed was referred to hematologist. He was first misdiagnosed with cirrhosis based on an ultrasound (shocking to hear due to lifetime of healthy lifestyle and perfect health). After a bit of bouncing around from gastroenterologist to hematologist and a bone marrow biopsy (note it was a small sample due to hypocellularity), he was referred to Duke for a second opinion. After reviewing the first BMB, Duke confirmed the diagnosis of MDS RAEB2 with blasts estimated at 10-15% and recommended immediate Vidaza and referred for stem cell transplant. Went to Cleveland Clinic for 3rd opinion. They were less inclined to give a definitive diagnosis based on the first BMB, and agreed that it was reasonable for us to request a second biopsy prior to accepting a diagnosis or making treatment decision. Back to Duke, where they performed the second BMB. Also inadequate. This one estimated blasts 5%-10%. No dysplasia observed (but not alot of cells to observe). We noted that had Ed immediately gone on Vidaza, this result might be viewed as partial remission! NGS mutation panel ordered...took a month to get results. We got two bits of good news at once. First, several 10/10 MUD donors had been located for Ed. Second, no chromosomal abnormalities were found that would be associated with MDS! Based on poor samples and lack of chromosome mutations, we talked with our doctors about avoiding chemo and transplant until there were some red flags. After much research we proposed the following as red flags: platelets dropping dramatically (lowest was 100 at Dx), neutraphils dropping and sustained below .5 (lowest was 0.37 at Dx), hemaglobin dropping (lowest 11.7) increase or appearance of symptoms, increased LDH, or appearance of blasts in the blood. Since April, blood counts have generally stayed higher than at Dx. We have been using a number of supplements. Turmeric with bioperine 95% curcuminoids 1500mg, Coq10 800mg, copper glycine 2mg, 5-MTHF 1mg, b12 5000mg sublingual, papaya leaf tea, dandelion root tea, and a month ago added Osteo K minis to the mix. Current CBC has platelets at 112, neutraphils at 0.57, hemaglobin at 12.7, still waiting on LDH (but has always been low), and no evidence of blasts. Most importantly, Ed feels great the last few weeks! And he has started gaining back somw of the 20lbs he lost (he was alreadt a tall lean drink of water, could not afford the weight loss!) In spite of the absolutely dreadful prognosis he was given if he did not get treatment ("1 year...MAYBE 2"), our feeling is that even if this only sustains current levels rather than normalizing, Ed may be able to live and thrive like this for many years. If so we will avoid chemo and transplant for as long as possible, maybe for years, maybe forever
God bless each and every one of us! All prayers appreciated!!