Stopping all transfusions....

[Annettec]

After successfully fighting an infection in hospital, my mother was discharged last week and returned home one last time. Today, we found out that her oncologists have decided to stop all transfusions as they do not appear to be helping her anymore. According to the doctors, she may do "better" for a while without. For the past two weeks, her counts have stayed somewhat stable.... Hemoglobin low 80s but today at 74, platelets went from 11 to 10 in the past 2 weeks. Her white count went from 0 to 1.5 today. She has not had any transfusions for 2 weeks now.

I always thought the end would follow a period of time when my mom would need multiple transfusions per week. Thus far, she has never had more than one transfusion of platelets and or hemoglobin per week.

Are doctors seeing something else that we don't see? My mother does not want any part in "assisted dying" nor does she want to have any extraordinary measures that will extend life. She/we just want as much quality of life and no pain as possible.

She maintains she feels good and does not feel like she's actively dying.

Can she really live for weeks/months without transfusions?
this is such a roller coaster!!!

Tks for any advice, input.

Annette

[JordanN]

Hi, Annette,

It is a roller coaster, isn't it?! I'm glad to hear that your mom was able to go home. I think it is usually nicer for people to be in the comfort of their own home rather than the hospital.

My dad was completely transfusion dependent throughout his illness, but when his MDS converted to AML his hemoglobin went up about 1 point on its own for the very first time and actually stayed up for several weeks. The doctor never explained why, but my personal theory with absolutely no scientific support is that once the blasts start multiplying so quickly the marrow sort of makes some extra red cells and platelets as a side effect. Most of the blast cells are becoming white cells but due to sheer numbers, you get a few red cells and platelets, too.

As I've said before, my dad was pretty comfortable until the last week, and even then, he may not have been as uncomfortable as we thought he was. He was basically the same as he had been throughout his illness in terms of no pain and just very tired. About a week before he passed away, he became very confused and agitated (literally within a couple of hours) and became so weak he could not get out of bed within a day of the change in his behavior. The hospice nurses felt that he was unaware of his agitation, and I sincerely hope they were right because we were so worried he was upset or in pain.

Your mom has such a wonderful outlook on life and such a terrific sense of humor that I know she will handle this stage of the disease just a well as she has handled everything that has come before. And I know you will be a great support for her! Love and hugs to you both!

[Annettec]

Words simply cannot express how comforting your message is to me. Thank you and God bless you.

We're trying to emulate my mom's outlook and live for the moment. It is exhausting though....

This forum has been a real blessing. I always turn to it for support and it never disappoints.

Bonne nuit,
Annette