Living with Myelofibrosis

Last updated: January 2023

I was diagnosed with Jak-2 ET in August 2016. I was told that I was high risk and had to start chemotherapy medication immediately. I was told that I had 6 years to live. I went home and did some research and found out I had cancer. I called my doctor and asked her, "Do I have cancer?" She said, "yes." I was told that I had to transfer my car closer to home. My new oncologist said I had years to live! I didn't agree because I could feel cancer in my body and what it was doing! My oncologist let his friend at the hospital read my chart and said I still had 14 years.

It progressed

In October 2019, I requested a bone marrow biopsy to see if I had progressed. At first, I was denied. Then my oncologist asked me if I thought I had really progressed. I told him definitely. He did the bone marrow biopsy and I had progressed to myelofibrosis. My new prognosis was 7 months to 2 years and 7 months to live!

I can't take the medication that is best for people with myelofibrosis because it causes me numerous problems. The medication that I am on won't slow my leukemia or reverse any of the damage. I feel leukemia taking over my life! I am in extreme pain every day even on pain medication. I am given only the smallest amount of pain medication. There is supposed to be a new medication coming out, but I haven't been hearing anything about it.

Life is very difficult with this leukemia

I do see a specialist now. I keep getting bills from her hospital. I have even been turned into a collection agency. I am a veteran and was referred to the specialist. My insurance at the VA is paying for my care. A veteran representative called the hospital with me on the phone and it was determined that the bill in the collection hadn't even been sent to the VA for payment! It is extremely stressful and the stress adds to my pain! When I talked to my specialist she said she has nothing to do with the billing. When I talked to billing, they don't even know who my specialist is!

My VA doctor is not a specialist in my leukemia. The only cure for me is a stem cell transplant and my VA oncologist said I only have a 1% success rate. My specialist said she doesn't necessarily agree with that. I haven't been allowed to talk to the transplant team. Life is very difficult with this leukemia. I get weaker and weaker. I have been having palpitations and a racing heart. I have extreme fatigue.

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