Thread: Myelofibrosis; End-Stage

Hello;
I am posting on behalf of my grandmother since she doesn't know how to use computers. After four months she was finally diagnosed with myelofibrosis and it is end-stage. Here CBC shows a 4.8 level and as our doctors keep telling us, she should be dead. We are Jehovah's Witnesses and don't accept blood transfusions. Currently here doctors have her on 60mg steroids and Thyamine (not sure if that is spelled right) an experimental treatment to block the signals that lead to the formation of the scar tissue. The same drug that caused birth defects. Our family would like to know what treatment options are available and if there may be any doctors in the Northern California area who can treat this. We have heard that there is a doctor at Sinai hospital near Los Angeles that can do a bloodless bone marrow transplant, but she is both too sick to travel down there and all three of her children have medical conditions such as diabetes and hepatitis so I'm not even sure they would be transplant candidates. Any information anyone can help with would be greatly appreciated. Thanks.
Rebecca Baxter

We just took my grandmother to the doctors today and they have said her situation is critical. They will not admit her to the hospital since she won't have a blood transfusion. They tell us that the only thing they know what to do and the only thing the hospital knows to do is a blood transfusion. They are willing to do any other treatment if someone knows something, but they don't know of any other option at this point besides a blood transfusion. They recommended that the only thing we can do if no one comes forward with another option is to contact hospice. If anyone knows of any helpful information please let me know. Thanks.

I also forgot to add that as of today her test results show a white blood cell count of 2.4, a PLT of 19, a RBC of 1.15, a HGB of 4.2 and a HCT of 12.6. According to our doctors all they know is someone with these low of levels should be dead.

There is very heavy stress on you grandmothers vital organs. Have you contacted the local Hospital Liaison Committee for Jehovah's Witnesses? One of your elders will have a contact list. They can help to get her on a blood building protocal. The doctors should have her on large doses of EPO(Procrit, Epogen or even Aranesp) also Neumega to build the Platelets and Neupogen to build the White Blood Cells. She needs to be in a bloodless medicine center. Please get in touch with the HLC.

Hello. Thank you for your reply. Unfortunately she began having intense stomach pains and trouble breathing on Friday night. So Saturday morning at 7am PST we called 911 to take her to the hospital. At 1pm PST they moved her to a nursing facility and told us to contact family members. She passed away a little before 6pm PST. The ER doctors uncovered that she not only had myelofibrosis but she also had cancer throughout her abdomin, cancer of the lungs and a perferated intestine. So unfortunately there wasn't much we could do unless the doctors would have caught it earlier.