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What to do when treatment has stopped working

I was diagnosed with primary myelofibrosis in 2022 at age 79. I started treatment with weekly injections to stimulate my bone marrow to produce more red blood cells. It worked for awhile. Next I received injections of Aranesp every 3 weeks. That worked for awhile too. Now my red blood cell count is the same as it was when I began treatment. My co pays are getting very expensive so I have decide to stop my treatment. I will still have blood work every 3 weeks and my red cell count will most likely drop down. What else can I do?

  1. My heart goes to you and I pray you find comfort in the many days ahead - I am facing my own reoccurrence with another cancer and have come to the conclusion that we can only do what we can do and it is best to leave the rest up to God.

    It is a disgrace that we as a nation can spend billions on nonsense and not consider the financial needs of people facing deadly diseases. God bless and know you are not alone . Dennis ( TEAM)

    1. Thank you and the best to you.

    2. 👍

  2. there are organizations that offer financial assistance. Have you looked into anything like that? I found this article that lists some suggestions. Sometimes there are resources that are specific to the area where you live. We have a local cancer organization that helps many people. You might ask around in your area if you can find help with your copays. Best of luck and hope this helps!

    1. Sorry to hear that, and I totally understand the costs of those co-pays can indeed add up. I suggest checking the resource mentioned by . I also suggest speaking with your facility social worker to suggest other resources that may help you with those expenses. Have a conversation with your doctor on clinical trials and whether or not you'll be a good candidate for any of them. Let us know how things work themselves out. Wishing you the very best!

      1. My Dr. and his office staff are aware of my concerns regarding my high co pays. No one has offered any suggestions for help. I was even touch with the leukemia/lymphoma society. When I told the person I talked to what my diagnosis is he said they don’t have that listed. I don’t have leukemia anyway. I have primary myelofibrosis.

        1. I hear your frustration and know how insane healthcare costs can be. Along with 's suggestion, I have attached a different article from our site about healthcare costs, and at the bottom, there are a few resources linked. Feel free to check those out and hopefully, you can find some assistance there! Sending positive thoughts your way. Please keep us posted on how things are going. -Sophie, team member

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