Decitibine

[Kathy Brown]

I’ve been on this forum since my husband was diagnosed with high grade MDS with 2 gene mutation on May 12,2020. I don’t see anyone ever mention that they, their spouse or loved one is on Decitibine. If anyone else who is on Decitibine for their chemotherapy drug, are you having any side effects and if so, what? I’d also like to know if anyone else who has MDS has joint and spine pain or headaches?

[Rita Knopick]

Hi Kathy,

My husband was on Decitibine for 2 1/2 years. Another name for Decitibine is Dacogen. He received the drug IV for 5 days a week every month. He never had any side effects from the drug. Unfortunately he transitioned to AML in June 2020 and lost his battle with the disease. Sending prayers for you and your husband in this journey.

[Kathy Brown]

Rita, thank you for responding and sharing about your husband. My husband was given 12-18 months to live when diagnosed in May 2020. We’re now 8 months into this and he hasn’t had a blood transfusion since July 2020 and are told by his Oncologist that he’s currently “holding his own”. I don’t know what that means other than he’s not going “downhill” yet. He was told he would eventually have AML. I do see that high grade MDS has a median lifespan of 2.2 years. The thing that concerns me is the fact that he sleep most of the day and all night and has extreme fatigue and weakness. He also have severe headaches and severe joint pain and spine pain. He is 69 and walks and shuffles along due to weakness, fatigue and pain, when he walks, like a 90 year old man. I was just wondering if anyone else on Decitibine(Dacogen) with high grade MDS and also 2 gene mutations has any of my husbands symptoms and being told they’re holding their own. This is so stressful and hard to watch.

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