Thank you so much. It's encouraging to know that it's possible to go years, going well. Some of my numbers are going down but I really believe eating well, getting exercise and taking the right supplements can make a big difference. Hope you continue doing well!

My doctor at UVA, Dr. Keng, records it as MDS/CMML.
CMML has three levels based on blasts in the marrow. I have, luckily, remained at 0. Is this what you requested?

I hope you are getting answers that you need.
Mary

You go mdshub and you'll get a lot of good information

Arthurluis I am on that same site on FB too I also have tp53 mutation but I've taking promacta for platelets. They said the only thing they can do for me stem cell transplant when my numbers get to low or my blast go up

There are Facebook sites “Fight Mylodysplastic Syndrome “ and others you can filter for 5q del.

I am 78 and discovered MDS with 5q del like two plus years ago. Went on Revlimid ( Lenalidomide) for the two years and added Aranesp injections like a year ago. Hgb counts held at 10. Also had a couple of BMB’s during this period. Local oncologist stated 5q del was low risk leukemia.

Three months ago blood counts started dropping and Oncologist ( now at MD Anderson) took me off Revlimid . After three months counts have come up close to the 10 reading. In interim had another BMB and now shows three TP53 mutations which is not good news as this mutation has very bad prognosis. Am on “watch and wait” for now as counts coming up and don’t feel bad. Eventually will go on Chemo ( Invoqi)- which is effective - for a period of time !

There is another person on Facebook with same symptoms. Their oncologist stated to them that the Revlimid caused the TP53. MD Anderson oncologist stated their was some relationship here but not necessarily the cause.

So if I knew then what I know now
I would have discussed to see if there was an alternative to Lenalidomide .You want to avoid TP53 mutation.

Hopefully you are at a Center of Excellence . Also I would get second opinion early on.

Good Luck
Arthur