How do you feel with Decitabine treatment?

[Donna]

Hi Everyone,
I was originally sent to hematologist with low WBC around 2013 and had yearly blood tests. In 2017 my counts were lower and I had BMB which put me in CCUS category and I did the watch and wait with labs every 3 months. I had another BMB last November which confirms MDS, now with multi-lineage dysplasia (MDS-MLD), intermediate risk. My last 3 labs showed platelets in the 40s and WBC around 1.7. RBC, hemoglobin, hematocrit a little low. I am due to start Decitabine in April, assuming my labs are still down. I usually drive to the hospital (about 24 miles with lots of traffic) and I am wondering if anyone can give me an idea regarding if I will be able to drive to these chemo appointments….5 days in a row, monthly. I don’t know how I will feel and I would like to start approaching friends that will drive me occasionally in case I need them. Any information will be appreciated. Thanks.
Donna

[Rita Knopick]

Hi Donna,

My husband has MDS high risk and has been receiving Dacogen treatment 5 days every 28 days since Feb 2018. He feels a little tired after treatment but has not had any other problem after treatment. I do drive him to his treatments as he also has macular degeneration so he does not see well but I am sure he would be able to transport himself if I was not available. There are quite a few patients also getting the same treatment with the dacogen at his oncology clinic and they all drive themselves. I sure hope this helps a little. Best Wishes to you.
Rita

[emily59]

As long as they give you something for nausea in ADVANCE. They could give you oral meds that you take an hour prior, or they can give you an IV before the chemo injections.

I drove to/from all my appointments. I went to work approx. 4 days each of those weeks. By Day 7 I Was usually exhausted. I would definitely plan to stay home for the first couple days to see how you react.

My very first cycle I had nothing for nausea. I went right from my appointment to work. By 11:30a the vomiting started. It was baaaaad. But all the rest of the treatment days were OK since they gave me the right meds.

Hope it goes well for you.

[Donna]

Rita & Emily: Thank you so much for responding to my question. I’m beginning to feel better already! I will ask about the nausea med. Last bone marrow biopsy I had conscious sedation and vomited all the way home in my friend’s husband’s car. She borrowed his car because it was so much nicer than her own. Woops. I felt worse for her than for myself. Well, thanks for the good reports. I only work part time and it is rather flexible so I think it should all work out.
Donna

[Keith Scovell]

I have been taking decitabine since March of last year – part of trial to get FDA approval for oral caplets – believe trial should be completed this summer, hopefully making the caplet available. My initial experience with decitabine was needing both platelets and red blood transfusions. I did infusion as part of trial, however was in hospital so they could collect all of the blood data – I do not have any major reaction from the decitabine – less toxic than other chemotherapy – you should be able to drive yourself.

Most importantly – the treatment has moved by blood counts much higher! – but only after several cycles – good luck and God bless. Keith

[Donna]

Hi Keith,
Thank you for responding. It is good that your numbers are up. Have you been taking Decitabine orally all the time?
Donna

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