MDS 5q

[Bridgette Perkins]

Hello,
My name is Bridgette Perkins.
Im scared and needing some questions answered-Has anybody lived along time with MDS 5q? Im low risk.Thank u!

[Rita Knopick]

Hi Bridgette,

My husband has very high risk MDS and has done quite well for the past year and one half. He gets Dacogen (decitabine) 5 days as week every 28 days and has been getting that for a year now. I hope this helps.

Rita

[Beth Burnett Beth]

Hi, Bridgette,
I was diagnosed with del 5q in May 2015, when I was 59. My hemoglobin counts had been going up and (mostly) down for five or so years before that. After watchfully waiting all that time, I had a bone marrow biopsy in 2015, when my HgB was around 9. It went down to 6 in October, 2018, fairly suddenly. A BMB in November 2018 showed increased blasts to 10%, putting me in high risk territory. I had my first and only transfusion in mid-December, 2018, and started Revlimid, the drug of choice for del 5q, in December. For almost 10 years, I lived a very normal life, exercising, traveling, raising a family, working, and trying to eat a healthy diet. After 3 months on Revlimid, my HgB is higher than it has been in years and I feel great! We are contemplating a bone marrow transplant if the Revlimid can get my blast percentage down again next month. Take home messages for you: Live your life. Don’t be afraid of a transfusion if you get really anemic. GO TO A CENTER OF EXCELLENCE for a second opinion. Del 5q is rare, usually pretty benign, but can turn into a dangerous situation quite quickly, at least it did for me. Please let me know how you are doing. I don’t know anyone else with MDS del 5q.

[stacey]

Hi,
I was diagnosed in 2004 with 5q- MDS and have been on and off Revlimid ever since.
I am now 48 years old and am doing fairly well. No transplant planned in my immediate future.
I wish you guys all the best.
-Stacey

[Roy Powell]

Hi Bridgette:
I have had MDS 5Q deletion for about a year. The standard for low risk MDS is Revlimid and this works well, at least for me. Problem might be the price, which is now $21,500 a month. If your insurance will cover most of that, then there are places that will cover any co-pay. (Congress is after these pharma people).
My readings are normal now and vary only a little. I know of people on this same stuff and they are at 15 years now.
Nobody can predict the future but go out and live your life.
Roy
82 yrs.

[Bridgette Perkins]

Thanks to all of u! Beth do u have any s suggestions of the best MDS Hospital maybe or anyting? My doctor said I went from good to bad I guess 3 and 13 came in the mix. I don’t know what all this means I’m educating myself it’s frustrating and all I think about is dying does anybody know anything about this or like they took me off my medicine because my platelet count was 19,000 and they said sometimes the medicine can do that I’m on that revlimid but they took me off of it for a while until my numbers go back up he said I wouldn’t survive a bone marrow transplant because of the chemo

[Gail Goodridge]

HI Bridgette,
I was diagnosed a year ago. MDS 5q del. I’m on Revlimid and except for some fatigue and issues with constipation/loose stools I’m doing well. Right now managing that is my most serious concern.
My doctor does not have much to say about long term prognosis. He just seems happy that the medication is working for now.
I have spoken to people that have lived many years on this medication.
Be well! Try not to worry.

[californiagirl]

Hi Bridgette: I was dx w/ 5Q del in 2015 when I was 58 and have been on Revlimid since late 2015. I was never transfusion dependent. The only problem I had was chronic diarrhea after starting it the first 6 months and the MD almost took me off of it until someone mentioned the use of Colestipol (used for bile salt malabsorption) and I have been good since. I’m on Revlimid 5 mg x 28 days. All counts are within low normal range. Except for feeling a little tired climbing 3+ flight of stairs (which I make myself climb at work), I feel great, golf, hike, walk, travel, garden, pull weeds (ugh) and try to stay active. I know there are people who have been on it for 10+ years. My first year was spent worrying and not wanting to make any decisions with my life, but I’ve learned to accept it and live my life the best way I can and do the things I want to do. Best of luck to you and everyone.

[Kathy Stermer]

As another dealing with del 5q I tried a year on Revlimid but could not keep my counts up so have switched to Vidaza as of yesterday. All I can say is this disease has so many variables and each individual has their own response. It will be a life long battle but have decided life is too short to waste a minute and as this is my new life, trying to manage the best way possible. Yes to Center of Excellence, listen to your body, take control of your care and wishing us all luck on this journey

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