March 1, 2021 at 3:03 pm #54072Suzanne RiceParticipant
my husband saw his Oncologist this morning – today starts his 8th round of Dacogen. It has made no improvements in the blood counts and the doctor discussing discontinuing chemo and just going with blood transfusions. I was not with my husband and am going by the doctor’s notes in MyChart – my husband wants to continue with the Dacogen. My question is this – does this mean we have reached the end of drug treatments and it is now just a matter of time? He was diagnosed MDS-EB1 High Grade – I just want to understandMarch 1, 2021 at 3:18 pm #54074Cliff PotenzaParticipant
If you are near a center of excellence like Sloan Kettering in NY or Moffitt in Florida you might want a second opinion. I had MDS, was on Vidaza then they added Ventoclax then some other drugs and finally last November had a bone marrow transplant and I am now doing well.March 1, 2021 at 3:24 pm #54075Suzanne RiceParticipant
he does not want a second opinion -says he trusts his doctor – and he is not a candidate for BMT or SCT due to other health problems. His red and white counts are in the 2’s and his neutrophils are 0 – the doctor is very concerned about infection. Other than going to doctor he stays home. He gets easily winded and cannot walk any great distance and has been very wobbly and dizzy at time when walking. I knew he was High Risk but didn’t think it would progress so fast.March 2, 2021 at 9:22 am #54139aiqueenParticipant
Do convince your husband to find second opinion in a center of excellence. Seeking a second opinion does not mean you do not trust your doctor. There are so many news drugs coming out every day, second opinion adds a new pair of eyes, another perspective. Nothing to lose. When I was first diagnosed with MDS, my hematologist welcomed a second opinion and suggested names for me to see. You have nothing to lose in a second opinion.March 3, 2021 at 1:48 am #54166Amy ClarkParticipant
Suzanne, I am sorry this is progressing so fast. It is a terrible disease and I know you are concerned for him. I agree with the above. It seems like a big deal to “not trust” your doctor, but you are only doing your due diligence. Think about it this way – I guarantee you that his doctor would seek a second opinion at a specialist’s office if he were in your husband’s shoes. No harm done by getting a second opinion.
My husband was satisfied with the local hematologist until we saw a COE MDS specialist doctor. They are just more aware of more options and have clinical trials if you are interested. Venetoclax is what we will “ask for” when my husband’s Dacogen/Inqovi stops working, whether to add to it or start anew with Vidaza + Venetoclax. I will pray for you both, but don’t nag him, he needs your love and gentleness. Just try to be logical with him and then pray hard.March 18, 2021 at 5:01 pm #54241Kathy StermerParticipant
Diagnosed 3/18 with MDS 5q del and tried Revlimid for 1 year without results, 6months azacitidine without change. Quit and went on supportive care (blood every 2-3 weeks) October 2019 with good quality of life. Forward to May 2020 and due to blast count rising suspecting progression to AML confirmed via biopsy February 2021 (still having good quality besides a bit more fatigue). Decided to give it one more go with decitibine/venetoclax for a month but alas, didn’t change anything and I spent 3 miserable weeks from chemo. Was given 6 months last May, am back to supportive care. No hospitalization, and DNI/DNR (which I have been since day 1) and gonna enjoy every extra day I can with my family, grandkids, friends until I hit the finish line. Affairs in order and wishes accepted and respected by all. I feel so peaceful. Wishing the best to all on their own journey.
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