Fatal?

[SusanJ]

Just how fatal is this disease? Everything I have read is so discouraging. Is it possible to live with this for 10 or 20 years? Please say yes!

[Dennis]

Susan,

Again, the answer is yes. All depends on the individual and the care afforded. Dealing with MDS is often a case of dealing with the “side affects” of the condition.

Having said that, remember, MDS — like life itself– does not come with any guarentees. You’ll find people on this forum who have lived 10+ years beyond their diagnoses. Also, there are therapies and drugs available now that weren’t as little as a year ago.

And don’t let the “statistics” get you down. Really, they don’t mean a lot. As my transplant doc says, the only statistic that really matters is your own.

Please don’t get disheartened by what you hear and read. According to the stats, I should be on the other side of the sod by now, as I have a very high-risk MDS. But I’m plodding through, having more fun than a person aught to. Attitude is remarkably important — keep looking up.

Dennis

[jeanswear]

My mom had MDS for 10 + yrs before she succumbed due to leukemia. So yes, don’t be discouraged. Keep a positive attitude. And ask for 2nd and 3rd opinions if it makes you feel better.
Also don’t be afraid to reach out to people on here just to vent. It helped me out alot. I don’t post much anymore since mom passed. But I do try to keep up with whats going on.

Good luck with the battle Susan. It’s a long and arduous one.

[CarolineG]

Susan,

It isn’t always the MDS or the Leukemia which ends up being fatal. It is quite often a different problem.
My Dad is 79 and has had MDS for 3 years. It transitioned into CMML last summer. At the moment he is showing absolutely no signs of trouble. His Hgb is higher than it has been in over 4 years…120. BUT..he has chronic kidney failure. Presently, it is under control but he nearly died from it a couple of months ago. His biggist issue right now is a germ in his lower bowel which his immune system is not able to erradicate on its own. Again, it nearly killed him 3 times since November. Every illness that he used to be able to get through with a couple of days rest now become fatal to him. A cold would probably turn into threatening pneumonia.
The best way to keep MDS under control is to keep the immune system as healthy as possible. The people on here are experts on herbs and supplements and ways to help. In Dad’s case, he is as sick as he is because the blood disorder has weakened his immune system and the other ailments are able to get at him and he can’t fight them off. It isn’t the blood disorder which is making him ill. It only weakened him over many years.
The statistics which you read on the internet are quite outdated. The first night I read them, I nearly had a nervous breakdown. I have never been so inconsolable as I was after I turned off this computer.
My next door neighbour is a microbiologist and is doing his PHD on CMML. He used to run a blood bank in a hospital and he now teaches at a university. He teaches doctors and nurses about Leukemia and other blood diseases. He told me just the other day that he treats people in their 80’s and 90’s who have had MDS for over 20 years and they are still in good shape.

Take heart and best wishes,Susan.

Caroline

[SusanJ]

Thanks Caroline, to you and all of the other good people on this forum. I am beginning to feel a sense of peace and a little hope about this disease. This has consumed my life ever since we found out. I wanted to fix it and make it go away, but I have realized that I can’t. I have to learn to take it one day at a time and trust in God’s perfect will. Thanks to all of you new friends for being so supportive. God bless all of you.

[Author]

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