Dacogen and Rydapt for AML

[cosmo1]

Hi – I am new to this site, and very much appreciate the information that is made available.

My father, 86 y/o on 9/6, was diagnosed with MDS in April 2017, and it advanced to AML in July 2017. His oncologist prescribed a treatment program of 4 cycles of Dacogen, every 28 days. The first cycle was administered for 10 sequential days. 4 days later my dad fell and hit his head, and had a brain bleed as a result. All his counts were very low, and his bp was 90/40 when this occurred. We called 911, and they took him to the ER. It was awful. The brain bleed was relatively small, however we were very concerned for obvious reasons. Surgery was not an option due to his low counts and condition, so they gave him platelets. Miraculously, he recovered. However, 4 days later he developed MRSA and it went septic. We were told this was the end. They gave him triple antibiotics, and again, he recovered! We were all amazed and SO relieved. After that…he developed metabolic encephalopathy, which we weren’t sure he would come out of. AGAIN he recovered after a couple of weeks. Overall, he was in the ICU a little over a week, the ‘regular’ hospital about 3 weeks and an LTAC (where he is now) for 3 weeks. So total he’s been in the hospital for 7 weeks this Thursday. He has recovered amazingly mentally and physically. Granted, he is still quite weak due to the long hospital stay (and maybe other reasons?) and mostly bedridden (other than an hour of PT a day where he can walk about 150 steps, sit up, do exercises, etc.), however 2 weeks ago he could not walk ONE step and he could not talk, so he has made HUGE progress. His appetite is coming back a bit as well, which are told is key to recovering his strength. So, now we are faced with next steps. His current hospital says he needs more rehab to be able to be walk again and be somewhat independent, so they want to send him to a 2-week inpatient rehab program in a different hospital, and after that either go home with help, or to a skilled nursing facility. Our concern as a family is the progression of his disease. His oncologist, and the other doctors, are saying he is still too weak for treatment (which would likely be a combo of Dacogen and a newly approved drug called Rydapt), every 28 days for 5 days in a row as an outpatient. Apparently a patient needs to be almost at baseline in terms of independence and strength before considering any treatment. My and my family’s worry is that the disease will return before he is strong enough. So I guess my question to readers is, has anybody experienced something similar? Has anybody seen cases where Dacogen or other similar treatments are administered to bedridden or very weak patients? I can provide more info…for now, the above is the general summary. I appreciate ANY insight, shared stories, or information. Thank you.

[mdsfound]

Dear Cosmo, Thank you for your email with information regarding your father’s health. I know this is a difficult situation for you and I would recommend that you take him to one of our Centers of Excellence for a second opinion. He should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this information helps.

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