Help! Second opinion for 87 year old dad?
Tagged: Second opinion
June 13, 2018 at 8:43 pm #36638
Betsy Parker LandmannParticipant
My dad was diagnosed I think about 6-8 months ago…I wasn’t in the loop until about March…he had been getting a shot (hormone?) and started transfusions right around the time I got involved. We were told Monday that he’s not responding and he has 6 weeks to 3 months to live…needless to say we are shocked. He was extremely healthy…still skiing in March, though admittedly getting tired. He has the vitals of a 50 yr. old and has never been on any meds except an antibiotic upon a rare occasion. We of course asked is there nothing else to do and they said they could try a chemo drug..decitabine which might buy him A couple of months.
I stumbled upon this amazing website last night and thought I’d reach out… we are in Maine about 2 hours from Dana Farber or other MA hospitals…should we be getting a second opinion? Thank you for any guidance.June 13, 2018 at 8:53 pm #36639
Absolutely get a second opinion as fast as you can. I did have a stem cell transplant and don’t know if they would do that given your Dads age, but
Get to a place that may have more options for him to try.June 13, 2018 at 10:47 pm #36640
Betsy, you should absolutely get your dad to one of the MDS Centers if Excellence.. probably Dana Farber. I also have very advanced disease and from everything I’ve read only a transplant will help at a certain point, and your Dad is too old, I doubt they will give him that. But perhaps Vidaza or decetibine and transfusions May give him more time. But the only ‘cure’ is a transplant. It’s just awful. Brutal.June 14, 2018 at 8:56 am #36643
POsitively get a second opinion!!!!!!!!!!!!!!!!!!!! ASAP Go to Dana Farber.June 14, 2018 at 5:36 pm #36644
My dad was diagnosed at 88 and passed at 92 a few weeks ago. He was on Vidaza 13 months and it kkept him going. I understand your situation.June 14, 2018 at 8:49 pm #36645
Was your father a veteran?June 14, 2018 at 9:10 pm #36646
Betsy Parker LandmannParticipant
Thank you all for your responses. We are in the process of securing a visit to DANA Farber for a 2nd opinion. WENDY, my father is a retired Navy Captain but never saw active duty.
Your comment about your Dad being diagnosed at 88 and living to 92 gives me hope! That’s amazing! How normal a life did he have? If you were to meet my father you would have no idea he was sick. He looks great, mind is sharp as a tack, and continues to be so engaged and engaging….but it all becomes evident when he has to walk somewhere.. He moves quite slowly now and tires so easily. Did your Dad have a decent quality of life for the 4 years he was being treated? Thank you for your feedback.June 15, 2018 at 2:07 pm #36652
Betsy, I am 65 and have had low risk Mrs for a year now so not the same situation as your father, but there are some similarities. No one would know I have a terminal disease to look at me either and in fact only family and close friends know. I can tell how much weaker I am than a year ago But I can still function and do most of what I need to do. I hope that the cancer center can help your dad, there are many more options than a few yrs ago and he may be one who responds well to treatment. I wish you all the best, there is always hopeNovember 3, 2018 at 6:10 am #44334
How is your father doing now? And is he on Vidaza now?November 3, 2018 at 3:37 pm #44337
Betsy…..I am very happy to hear that you are going to Dana Farber. They are the best. There are a few doctors there that are really specialists within the specialty, in that they really specialize in MDS. I am going to a doc there and now going to see on the these MDS specialists for consult, mostly to see if there are any clinical trials that I would quality for. This is by the advice of my regular hematologist/oncologist at Dana. In other words they will work together to get you the best outcome. I hope your visit goes well and wish your Dad the best.
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