Failed 2 treatments now what?

[Kathy Stermer]

I took Revlimid for a year without any change except becoming transfusion dependent. Switched to Vidaza and after 6 months no change in labs. Hgb still in 7’s and anc below 1000 for past 18 months. Diagnosed with 5q deletion with multi dysphasia affecting red and white blood cells. Platelets generally ok. Now awaiting bone marrow results in a few weeks to check for changes in disease. My feeling is I’d rather die living with this disease than die trying to survive a transplant. Not sure what else is out there for me treatment wise. Have a wonderful doctor at a Center for Excellence but frustrated with lack of any results. Other than feeling effects of low hgb about every 2 weeks when needing 2 units am living best I can while taking neutropenic precautions always. Not sure what other options out there for me going forward. Any thoughts welcome from those battling this confounding disease.

[Michael]

Kathy~

You are correct, this disease is confounding and very much individualized. Therefore each person’s choice as to the track they proceed is neither right nor wrong. Treatment may prolong our time until a better alternative to transplant is discovered.
I was diagnosed 3.5 yrs ago and am still on watch and wait. My sole cytopenia is neutropenia although all cell lines are dysplastic. Monthly cbc’s are stable and hopefully my bmb in November will indicate no real progression. I have been living with severe neutropenia the entire time, with only one infection requiring medical intervention. Fortunately my quality of life has been very good.
Currently my thoughts are similar to yours. I’ll pursue treatment when necessary but it’s doubtful that I would choose transplant when treatment fails.

Best wishes.

[Somenath Mitra]

I have a couple of cases on complete remission after failed chemotherapy ( Jakavi & Thalix ) Weekly Blood Transfusions to Blood Transfusion Free over 2 years now. Very Interesting Cases 😊

[bobby pellegrini]

What were the cases to be BTF? What did you do?

[Author]

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