Very High Risk MDS and no transplant.
 

My mother is newly diagnosed and doesn’t meet criteria for a transplant.

Does anyone have experience they could share in this situation? We don’t know what to expect.

I'm sorry I don't have any links for you but I have read about clinical trials for patients in your mom's situation. Perhaps you can do an internet search and see if you can find them, or someone else may have the links and will post them.

ETA: Here's a link to the MDS Foundation page listing clinical trials you can check out.

https://www.mds-foundation.org/clini...linical-Trials

My husband started dacogen in early May 2018. After 7 cycles all his cbc counts have improved. He also gets procrit and zarxio for hgb and white count. Dacogen has made a great difference. It is worth a look .

Hi, I’d be happy to share some optimist news. My mother was diagnosed in May 2014 at the age of 78 with MDS high risk, and she just turned 82 in January :) She was placed on Vidaza for 32 consecutive months before being taken off as it was no longer being effective. Surprisingly, that was more than 2 yrs ago and she is still with us. She is surviving on red blood transfusions ever 3-4 weeks. Her condition, for some reason, has progressed very slowly. While her quality of life is certainly not what it used to be, she still enjoys living. She just can’t go very far or do a lot. She still lives independently in a seniors residence that we refer to as the cruise ship! (It has an indoor swimming pool, small movie theatre, exercise room etc.) She can still look after herself, although she has someone come in to help wiht house chores.

There is therefore life after diagnosis. I hope and pray that your loved one is as fortunate to see a lot more happy days. Best wishes, Annette

Thank you
 

Thank you all for your responses and Annette what an amazing story about your mom!