Life expectancy

[Lena]

My mom just turned 94 in July. In August 2021 we found out she has MDS through a bone marrow biopsy. Her platelets, the red and white cells are extremely low. She is having a weekly injection of neupogen. At first it seemed to help but now it doesn’t. To lose her is not only losing my mom but my best friend. I’m afraid to sleep because I may not have her in the morning. I’m just wondering if I have years or months with her. Any advice would be greatly appreciated.

[lisab]

Hi Lena
It depends on what form of MDS your mom has. I’ve been a patient for almost 3 years and still going strong (well as strong as I can)
Because we are all different, the treatment that works for one may not work for the next person.
I have read on this message board that there are some that have made it over 20 years on the same treatment as I’m on. I’m hoping in 20 years to say the same thing.
All I can say for sure is that we need to try and enjoy the time we have left with our love ones and try not to worry about how long we have with them.
Take care and best wishes to both of you.🤗

[Joanne Roberts.]

Hi Lena: My hematologist reflected that all of us would eventually get MDS if we lived long enough, since the bone marrow is the site of our most active cells, and all cells are prone to mutation as we move through our years of life. As Lisab said, each patient is unique. Some of us are blessed to tolerate drugs like azacytidine and have had nice responses in our cell counts. A friend of mine was diagnosed with HR-MDS 2.5 years ago, could not tolerate azacytidine, and yet lived very well until he died last month at 8o over about two weeks of decline. Good luck with your mom. Each day is precious.

[Marc DiMaggio]

Lena,
I would like to talk with you as my Mom was diagnosed at the same age as your mother. THere is too much to put in a message and my mother had multiple conditions along with MDS. My heart goes out to you, it is really tough. Perhaps we can find an option to talk soon.
Marcella

[Richard Wagner]

My best wishes to all of you. I am an 81 year old male and have been diagnosed with MDS in 2015. I had 18% blasts at that time and given about 2 years to live. I was given chemo injections of Vidaza for six months, and
just decided to stop them because of the pain and copmlications of constipation.
So, I am still here going on year 8. I make weekly trips to my Oncolgist for CBC check, and a shot Procrit.
My WBC average around 2.0. My HGB is 6.7 up to 7.8 with transfusions of one unit about every 4 weeks. My platelets are holding 20.0 up to about 60.0 I have a nurse lined up for home care when the time comes for hospice. I live season to season, and am not afaid of the end. My father died of this MDS at age 78, My brother age 89 has it also. His numbers are identical ot mine but has had MDS for 3 years.

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