[AG5594]

I found this post while searching the internet. What you have described is sounding exactly like what my Grandmother is experiencing. She is currently in the hospital with a count of 2,000. When she arrived it was at 1,000. Bruising everywhere and petechiae. She had blood in her urine which has now become light. Her lungs also show fluid which they believe is blood or maybe an infection. They have her on an antibiotic for that and they also have her on Amicar to clot her blood. The doctor had told us to gather our family and he didnt know if she would make it through the night. It's two days later now and she is doing better but still not even close to being discharged. They are now suggesting to transfer her to the Mayo Clinic where they doctors excel in these areas but she is too frail to make the 2 hour trip.

I talked to the Doctor about a new medicine made especially for Myelofibrosis called Jakafi. He said he too looked into this. He wants to try it but he said it could have negative effects such as decreasing them even further. He says at this point we should try it because we have nothing to loose.


She was diagnosed with myelofibrosis a few years ago. She had a bone marrow biopsy last year and was also in the hospital after this because the bleeding wouldn't stop. Before this hospital visit her platelets were at 3,000 and she was feeling pretty good. She was getting her counts checked once a week and then receiving a transfusion a day or two afterward. She has received many many transfusions and they do not raise her counts. They also had put her on Thaldidomide (a type of chemo) which raised them but after a while stopped working. Last month they also put her on Vit K but I'm not sure that it did much to help.

I see this post is from 2010. Is there any new news or anything you can suggest to try? Our family is ready to try anything and everything as we are very close to our grandmother and do not want to lose her. We have been having many prayer sessions and just want to do everything we can for her.