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Decidibine Treatment

This topic has 2 replies, 3 voices, and was last updated 3 years, 3 months ago by Kathy Brown.

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December 15, 2020 at 3:07 am #53807

Nelissa Godin
Participant

I will be starting on treatment with decidibine for treatment of MDS in January. I would like an idea of how many months people on this forum have taken it before they had an increase in or return to a previous quality of life. I can’t walk across the street to the mailbox or take my dog for a walk – extreme shortness of breath and pounding heart. Currently my hemoglobin level average 8.4 after transfusion but go down as low as 6.8. Thank you all

December 15, 2020 at 8:57 pm #53811

Tom Barlows
Participant

get 4 days injections, 4 weeks off.
Also, include steroid for comfort.
Test blood weekly if hemoglobin less then 10 get redicrit injection.

I also have a hard time breathing with little exercise. Especially if hemoglobin goes much below 8.

Seems to only stabilize counts, red. White and platelets still very low.

Treatments so far 18 months. Recently applied to city of hope in Duarte,CA for 2nd opinion.

January 26, 2021 at 12:08 pm #53972

Kathy Brown
Participant

My husband has been getting chemotherapy with Decitibine since May 2020. He has weakness, tiredness, fatigue and shortness of breath all the time. He has absolutely no quality of life and especially now because of COVID. His labs have increased but are still low and he hasn’t had a blood transfusion since July 2020. It took almost 6-7 months before his labs went up. We both just got our 1st dose of the Moderna COVID vaccine and will get the 2nd dose on Feb 18th. He states that but for COVID he feels he could make his quality of life much better and would feel more comfortable going out and about and being around people even with a mask, which we will continue to wear until whenever. His Oncologist cut him back from 5 days of chemotherapy with Decitibine to 3 days and his labs are all much better. She felt 5 days of Decitibine chemotherapy was too much for him.
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