MDS-long term survivors?

[Alex]

I’ve been googling the internet like hell the past 3 weeks

My name is Alexandra, I’m 23 years old. My mom was diagnosed at the end of february with MDS. I thought MDS was more of a chronic disease. Are there any long term survivors on here?? Please help me alleviate my fears. I want my mom to see me get married and have children someday. I’m probably all over the place with this post, so I apologize for this.

[Terri]

Each case is different, – Did she have a Bone Marrow Biopsy, DId they provide her with a classification of MDS?
When Bob was first diagnosed and I read up on the disease I freaked on the Life expectancy that I found, however I don’t anymore because I believe you can’t go by that and as you wander around this forum you will see. There are long time survivors here, Neil who you will see post now and again is a wealth of knowledge and I believe he has survived this disease for quite some time. Suzanne is in Remission, so on and so on. We have also had our sadness here as well.
I am the caregiver and I could not and can not make it through this with all the wonderful people here.

Bob is in his 4th year currently, we have had some ups and downs but we take one day at a time.
I will keep your mother in my prayers.

[Suzanne]

It depends on what “long term means” to you I guess. There are more then a few of us living in remission or surviving with the disease in control with treatment-and more all the time as they develop better ways to deal with the diseases. I saw a post from someone a week or so ago that had been in remission from AML for 16 years-mentioned it to my nurse practitioner at Hopkins and she said that they have patients with that kind of long term remission. I don’t think anyone yet can forecaste under what circumstances that might happen for who tho-Hang in there.

[josey]

My family would like to know about my long term possibilities, after reading on this forum, I realize that everyone is different and responds differently to treatment. There are no for sure answers, you just hang in there, do the best you can to help yourself, have knowledgable doctors and hope for the best. Joanne

[Stephanie]

Hello Alex, It sounds as tho your mother might be about my age or a bit older? I am 40, I have a 22 yr old son. I was diagnosed with MDS 7-2000 and the Dr that diagnosed me told me I had 3-5 yrs to live. I have found out since then and thru this forum that there is no way to know how one will respond to a particular medicine. And there is truely no way to know how long you may have to live or if the meds will put you into remission, if you will stay in remission etc. My step-mother of 30 yrs. was diagnosed 2 yrs ago went into remission almost immediately. I have never been in remission, however, she will be passing any day now.
The best thing is to get a second opinion and do your reasearch, this forum is a great place to be!

[Mark NTN]

Alex, For every scary thing you read about MDs you can find an equal amount of hopeful and positve things we well. I have read stories about folks who have gone into remission for up to 7-10 years. Every case is different. Ask a lot of questions, read all you can, visit this forum a lot and by all means if your mom’s doctor can’t provide you the answers you need by all means seek out someone else who will be open, honest and patient with you. I will keep you and your family in my prayers.

[sugarwhale]

Dear Alex,
No one knows when he/she will die. A diagnosis of MDS does nothing to change this basic fact. My mom first had the characteristically low blood counts in 2000. MDS was diagnosed in 2002. The doctor (I use the term loosely!) told her to make her final arrangements. So, we found a REAL doctor, one that we love. My mom will be 90 on her next birthday. She’s out doing yard work! Remember, no one knows the hour of death. We’re not meant to know. Instead, grasp Life and make the very best of it.
Your friend,
Janet

[Stephanie]

Wow, Alex I just read my entry from the other day and it sounds so horrible! I guess I should just keep my opinions to myself while I am mourning. The information/meaning I was trying to get across to you was that I feel great to have had MDS for over 7 years. And I don’t expect to be kickin the bucket anytime soon! I plan on seeing at least 4-5 of my own grandchildren! I run a multi-million dollar corporation, while under going my regular medical maintenance, take care of my husband and children etc. There is no doubt about it this is a scary disease and it needs to be taken seriously, but WE CAN BE long time survivors!
With stem cell transplants coming a long way they seem to be less to tolerate then the full bone marrow transplants. Everyone is so different and their treatment and the way they respond to the meds-
My mother that has passed away was a life time heavy smoker she was 62 years old she went through 3 chemo treatments in 3 mths(1 before when she went into remission) a lesion on her colon, pneumonia, fungus everywhere, a blood clot in her leg, a lot of comlications!
I appologize for sounding so matter of fact and horrible on the earlier entry, Please Forgive me, everyone! My mind has been in a cloud, a fog and I had no business even answering poor Alex I should have just updated moms condition and gotten off the forum!

[niol]

No two people are a like. No two people respond the exact way to complicated medical problems. That understanding still remains with the MAN UP STAIRS!

However, daily new treatments either in drugs or complex mixing of treatments gives some people the FIX their body needs.

Revlimed is a golden bullet right now for people with the -5q form of MDS. It does not work on everyone but has afforded nearly all some form of improvement. Just think three years ago this was not available.

Just by looking at the testing going on right now there are a number of drugs being looked at that may work on various forms of MDS. So everyday you live longer the chances of your cure coming along gets closer.

I think a person needs to find a doc they trust, eat a good diet, get exercise that you can tolerate, and most of all keep a positive attitude! Plust if you believe in the man up above praying sure could help out. I know it did for us.

Take care and stay upbeat. A head hung low can end up getting skined on the ground. A head held high will smell the fresh air. Take your pick

Ed

[Teresa]

Best of luck to you and your Mother. Stay involved, and be her advocate. If you think your overwhelmed, imagine how she feels

[bobweinberg]

Alex, I was diagnosed in 1998 and am still going strong.

Bob Weinberg

[choijk]

Hi Bob, do you mind sharing how you old you are? I am always interested in knowing how old patients are, especially when they are still going on strong after being dx awhile back.

[Author]

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