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Myelofibrosis*

Blood Cancers & Disorders | Last Active: Jan 29 6:43am | Replies (111)

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@bmarkable

Thanks for mentioning Procrit. That's where I am at, and my HGB is not moving. We are talking about changing, but to what. I am not entertaining the stem cell solution. The information about the new drug is appreciated.
Since you have been through this for so long, what are your side effects. Do you have to be treated for anything else? Before the bone marrow problem I had Sjogren's so stopped methotrexate when I realized that it was the bone marrow culprit. Believing for miracles, however.

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Replies to "Thanks for mentioning Procrit. That's where I am at, and my HGB is not moving. We..."

I didn't change from the Procrit until my HGB started dropping. As for other treatments, I have MDS, which is certainly related to the MF, and my Kidney function is low. I believe these are somewhat common is situations like mine. The side effects have become a necessary part of life for me. For the most part I have learned to deal with them. Most of the Chemo drugs have kept me with a constant case of Diareha. There are various drugs that can help you deal with that. The Dacogen infustions were for 5 days straight, every 28 days. There is no doubt that it made me feel poorly, and it certainly lowered my White blood cell count to the point that I had to be exreamely careful about being around anyone that was sick. Infections of one kind or another was a major concern. The treatment also lowered my Platelets and HGB. So why did I take the infusions.... because they also killed cancer cells in the Bone Marrow. At the end of the week's treatment I vertually always needed Blood transfusion to bring my HGB back up. The boost from the new blood would hold me until i could produce some of my own new "Good" cells. After about a year, the Dacogen infusions had reached a point that they didn't seem to be giving me any improvement. When I recently put the Dacogen on hold, my White cells showed imporovement, and my HGB seems to be holding above 8. One of the major reasons for taking Dacogen was to become less dependent upon blood transfusions to survive. At this point it looks like it might have accomplished that, even thought the counts are still very low, they seem to have stabilized, at least for the time being. It's too early to really tell. The Vonjo has the usual Chemo sides effects, but using it gave almost immediate results. I had already been mapped for Radiation to shrink my Spleen when I started the Vonjo. Within weeks it shrunk my spleen negating the need to have it radiated or removed. No doubt that having the spleen is a good thing. I don't know if you are aware, but it helps pick up the slack of blood poduction when the Bone Marrow falls short. IMO, THAT is the main reason that I have survived MF as long as I have. As for the stem cell solution, I was certainly up to give it a try but all of my Doctors gave me the same feedback.... the said that I was too old, and was very likely to not survive the preparation for stem cell treatiment.... they have to Radiate you heavily to kill all the current bone marrow then give you the stem cells and start all over again. As for miracles.... heck, every day is a miracle and i am thankful for most of them. If possible, stay as cheerful as possible, make yourself look as good as possible and continue with your life as best you can. One thing that I know for sure is that contact with other people is good medicine. It helps you keep up a good attitude. If you look bad, constantly whine and carry on around others they would prefer to just stay away. So don't run folks off. If they ask how you are doing, give them a short honest answer that isn't too negative then move on and ask them how their garden is coming along.