Hi, Just saw your message. My husband was recently diagnosed with myelofibrosis, due to enlarged spleen and liver, and a recent bleeding episode in thigh, due to a muscle strain. Even though his blood tests are normal, and there's no JAK2 evidence (something you must have to have this disease), the doctors say he has it.
We're faced with taking a chemotherapy pill, hydrocyucea or simply waiting to see how things progress. The doctors are split. The side effects of the pill are the same as chemo, we felt it could trigger some effects as well. The doctors even though they're split, agreed to wait and see.
Waiting is so so so hard to do. Shouldn't we do something knowing what's on the horizon? But right now, he's just in perfect health, working full time, enjoying life, and the thought of being sick now, because of a chemo pill, just put us over the edge.
Your message just read our hearts. You've been through a lot, and now that decision comes up. I'm sure you're tossed what to do, and there's no easier answer.
Please keep in touch, and let me know how you are. Have you contacted the City of Hope website about this? They seem to be on the advance with many kinds of cancer.
My best to you and your family.