Connect
I would like to hear your experience with MDS
This may be a broad question because MDS has different types of symptoms. (Can't think of the right word).
Anyways what I'd like to know is doctor told me the first time we met she confirmed I had MDS she said of all the cancers out there she would choose MDS for herself if she had to have one. She said normally since its very slow growing there is usually (and in my case) there is 7-8 yrs before anything will have to be done medically other than run blood tests regularly.
Has anyone else been told of several years before it gets bad. If so, what quality of life is the 7-8 years? I know weakness and getting tired is normal and I can handle that and hope thats all there is. But the last few days I feel like crap and my thoughts are its going to be a long 7-8 yrs. What experiences do you have?
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
Check to see what the gene mutarion is. For example, tp53 is not a good guarantee for many years of life. Some mutations are "better."
@shmerdloff Is this what you mean? #MDS with SF3B1 mutation IPSS-M -1.01 low risk, RIPSS very
low risk
@twitt1949
Yeah. Like that. You don't want AML. ACUTE.
Maybe I should rephrase my original question. What your quality of life after you found out you had MDS?
Truthfully it isn’t great.
I suspect it is the medicine (hydrea500 8 times per week) making me exhausted with joint pain and suddenly feeling old.
But my platelets were at 1.5million and now hovering around 600. The drug is working
-
Like -
Helpful -
Hug
1 Reaction@twitt1949
from schmerdloff. Oh, no change in qol (very good). Wait and see. Bloods 1x per month. HemoOnco says don't be too concerned.
At 78, something's gonna get me. Til then, having fun.
-
Like -
Helpful -
Hug
1 ReactionMDs may be in my future
Maybe in one year maybe 5
I had 60transfusions last year of plateletes now two since September
I go running and gardening but skip bikes due to low plateletes
If you are high risk MDs you can take azacytadine and eventually you can qualify for a bone marrow transplant
Jesus helps me every hour
@shmerdloff
I'm 77, when I first met with my cancer doc, after a long talk she said not to worry too much. She said at 77 I will probably die of old age if something else don't get me first. The way I've felt the last couple days I just don't want to feel this way for the next 7-8 years. Anyways, thanks for you comments.