Hi Marlene, I too am getting ready to try CBD to help my MDS diagnosis. It is not conclusive but the medical community does not know how to diagnose my cytopenia. My bone marrow biopsy is inconclusive. My Symptoms are refractory anemia requiring monthly blood transfusions and Extremely low platelets requiring a fascinating orphan drug called Promacta to literally stay alive. I recommend talking to your doctor about Promacta. It is used in ITP an autoimmune disease but more people diagnosed with MDS are using it with good success too. I actually had to tell my hematologist about trying it because i was dying in ICU. My platelets are stable between 50000 and 100000 on the Promacta. I was in and out of the hospital every few months on life support before the Promacta so i consider it a miracle. Some day it would be great if i could get off that too but i will count my blessings.
Regarding CBDs. Here is some good information i have come across i am going to follow. I pray it works. My 10 months on Vidaza was a bust. No improvement.
Here is a source that looks pretty good for all the right reasons. I don't know for sure but i like what they have to say.
Originally Posted by Marlene
John's threshold for platelets was 8K also. In cases of SAA, they will even go as low as 5K as long as there is no prolonged bleeding. Even though he only had a few thousand, his own platelets functioned very well. Even better than transfused ones. His clotting time were good too.
Even though there are established guidelines for transfusion thresholds, I think you need considered your body's preferences. We knew folks who could not function when their HGB was at 9 or 10, while some did well at 7. So it's good to have a doc who will work with you to figure it out.