after Vidaza....what to expect for a 78 year old....

[Annettec]

I've been consistently reading threads on marrowforums.org on a daily basis since my mother was diagnosed with MDS ( high risk) in May 2014. Like many, she was placed on Vidaza for 7 consecutive days, every four weeks. Until recently, this treatment managed to stop the progression of MDS to AML and with the exception of a bit of malaise during the treatment week, my mother's QOL has been quite good, albeit her energy level is not what it used to be ( she had the energy of a woman half her age before this...now, she is more or less along the same lines as others in her age group 😉. In May, she was told by her oncologist that the treatments did not appear to be longer effective. He scheduled only 3 more treatments and another BMB in July to get confirmation. In July, he decided not to do the BMB and informed us that her blood had stabilized again and as a result, he wanted to wait and see ( so he decided to continue with vIdaza for the time being....).

Until recently, my mother had had only one transfusion since this all started..... Now it appears, as we suspected from our readings, that she is going to need regular transfusions from here on out. For now, she has only needed one transfusion every 4-5 weeks....and from what I have read, it's not so bad (yet)....

I fear however that time is not on our side any longer and that the end is coming.... I keep hoping and praying that my dear mother can get another 1-2 years of good QOL, with the help of transfusions......is that even realistic or should we prepare for the inevitable? I need some advice and any insight you can provide.... it's hard to find people with anecdotal information....

My mother prefers not to know "too much" so we don't dare ask any pointed questions when we accompany her to her doctor's appointment. We want to respect her wishes.... But at the same time, we need to be ready.....

I so respect the many people and caregivers who share on this site..... Regardless of my mother's outcome, I will forever stay connected to this community.
God bless,
Annette

[maggiemag]

Annette, I am so sorry you both have to deal with this dumb disease. I am not an expert, but it seems to me that each person can be different. You read on here where some are maintained with regular transfusions for years, with a constant interval in between, maybe a month or so. Others progress much more rapidly and eventually the transfusions do not work to keep counts up. Which is why I would want another BMB to see what exactly is going on in the marrow. IF she hasn't yet transformed to AML, maybe she can maintain on the VIdaza with minimal transfusions. If she has transformed, then maybe they have other options, like a clinical trial.
Just my 2 cents,
Mags

[Annettec]

Tks so much Margaret. I too was hoping for a BMB during her last app't but I am pretty sure her oncologist opted against it when he saw her blood count....and my mother's obvious (least amount of info possible to stay in her "new normal" for a while longer....) wish. Can't fault her for that...why go look for more bad news.... She wanted to enjoy the summer! 😉

She will definitely have another BMB in October when she sees her oncologist again.....

It's a horrible disease whichever way you look at it!

[Mseth]

Hi Annette,

My mother has been receiving transfusions, 2 units of red blood cells, every 3-4 weeks, since diagnosis in April 2013. She's doing fine and has a good quality of life, managing all her domestic chores and more herself.

All the best to you and your mother.