Hi Melanie,
Apparently when you get to a certain stage in the Myelofibrosis process, there is nothing much they can do at all. In my case the bones are just one fibroid mass and they have not been able to aspirate bone marrow for some time. All intervention becomes dangerous because your spleen and your liver do not only perform their normal duties, but they also actually go into the bloodcell production business. This means that your body only manages to produce immature cells and as in my case, it wipes out your immune system so that everything becomes a bit of a drama. All they are doing with me is monitoring the progression of the disease and giving me painkillers for the bone pain. The spleen gives me grief at times as well but not so much as the bones. I have actually been taken off all my meds. I was taking Hydrea 500mg daily, which in itself was a reduced dose but now they feel that it would cause more problems than help. I wish you good luck. Know at least that you are not alone. That was my biggest problem. I just felt so alone and unable to relate to other people. Hope we can help each other through this.
Madelon