How's your quality of life living with MDS?

Posted by tascamman @twitt1949, May 16 7:53pm

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?

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shmerdloff | @shmerdloff | May 16 8:27pm

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."

tascamman | @twitt1949 | May 16 9:00pm

In reply to @shmerdloff "Check to see what the gene mutarion is. For example, tp53 is not a good guarantee..." + (show)

@shmerdloff Is this what you mean? #MDS with SF3B1 mutation IPSS-M -1.01 low risk, RIPSS very
low risk

shmerdloff | @shmerdloff | May 17 7:13am

In reply to @twitt1949 "@shmerdloff Is this what you mean? #MDS with SF3B1 mutation IPSS-M -1.01 low risk, RIPSS very..." + (show)

@twitt1949
Yeah. Like that. You don't want AML. ACUTE.

tascamman | @twitt1949 | May 17 9:01am

Maybe I should rephrase my original question. What your quality of life after you found out you had MDS?

nini09 | @nini09 | May 17 9:49am

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

shmerdloff | @shmerdloff | May 17 1:05pm

In reply to @twitt1949 "Maybe I should rephrase my original question. What your quality of life after you found out..." + (show)

@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.

joanmroby | @joanmroby | May 17 3:57pm

MDs 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

tascamman | @twitt1949 | May 17 5:48pm

In reply to @shmerdloff "@twitt1949 from schmerdloff. Oh, no change in qol (very good). Wait and see. Bloods 1x per..." + (show)

@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.

katgob | @katgob | May 17 11:50pm

I had a TP53 mutation and a 5Q mutation. I was med/low with the MDS after my Bone marrow biopsy. I was 64. I had a transplant. Transplants are happening more as we get older, but I do believe your doctor might cover with you what your future would be as you age. Reading the other posts, there are treatment's that help. I am sure a moderator or two like Lori will post tomorrow. This is a good place to post this question.

rnnr65dragon | @rnnr65dragon | May 18 6:28am

Hey there @twitt1949 . Quality of life...reckon to some degree it depends on what we were able to do / were doing as this took hold for comparison.
I was training for a 100 mile race and training went off the rails (fatigue, cold/painful femurs, mentally not well). Bloodwork showed several below normal readings and hema recommended all sorts of tests for spleen, etc. With everything other than blood normal we descended into the discussion of MDS though numbers - while blood numbers were still falling better part of a year - to continue 'active monitoring' as I was able to still have a life; not my normal though still considered normal.
By Sept last year I must have looked like death warmed over during a dragon boat event that normally I am one of the most active coaches at, to where I could steer one race and was exhausted, needing to rest for about an hour before I felt up to do another one.
A friend from Hong Kong recommended his doctor and Traditional Chinese Medicine. I started this in October...it works!! Bloodwork stabilized after 6 visits of acupuncture/massage/meditation and herbs. Now 7 months in and some of the bloodwork shows some slight improvement, energy levels are almost back to 2024 levels though endurance still is lacking.
What works for some may not work for others though by dialing in on the spleen being more important than marrow in healthy blood along with the herbs focused on this and boosting immune function it is working for me.
Cheers!

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