[grifty50]

Hello Termara:
I was diagnosed with low risk MDS in 2014. I had BMT in 2018. I was 61 at transplant and Penn Medicine normally does not give people my age transplants because it’s too hard to get through but my Dr saw and thought I could get through it. Since you are young i don’t know why your not a candidate for BMT. I would definitely ask your Dr WHY???? GOOD lUCK
GRIFTY

[grifty50]

Fri, Jan 6 at 9:46 AM

The week before transplant you will be getting Chemo all week this is to wipe the body clean to except the donated stem cells. They probably will keep 4% of your old marrow to help jump start your new system. You want acute GVHD in the beginning though it could grow into chronic which you really don’t wan’t (I have chronic) most likely for the rest of my life. I too have low risk MDS I was diagnosed in spring 2014 (58 yrs old) tho I had it since 2008 records showed. For those 6 years my Hemoglobin was 13.0 and each year it went down one point every year till it hit 7.0 and I had to stop working. My transplant was March of 2018 I had a 10 out of 10 match My MDS was text book in that I tried 3-4 different chemos and tons of transfusions. This lasted 10 years and if they did not develop the transplant my time was over. Going back to going into the hospital you will be there for 4 weeks. For me it was a breeze except that they wake you up every couple hours. It was 1 year after transplant that for me it became very difficult. I lost all my muscle and bone density I used to workout all the time for most of my life and worked physical. I can’t work, it’s very hard to exercise I keep trying so this is why it’s very hard for me to except how I am now. Just stay as positive as you can. NO NEGATIVE THOUGHTS. The only other thing to tell you is depending on how many transfusions you received a year after transplant you need to start phlebotomies for iron overload from the blood transfusions. Please don’t hesitate to ask me anything. Good luck!

[grifty50]

Good Morning Maibi:
I was diagnosed in march of 2014 with low risk MDS. In 6 years before that I felt there was something wrong with me I just thought it was old age creeping in early. I Had found a paper from my DR in 2008 I had a physical and it showed my hemoglobin then 13.0 just below scale. My DR said we have to watch that level but because I always did cardio and lifted weights 3-4 per week we both didn’t pay much attention to it. By 2014 my energy level was so bad that I had to stop working (did physical type work) My hemoglobin level was 7.0 They first put me on Aranesp 300mcg shot every other week. Did that for about 5-6 visits hemoglobin went up to 8.7 started to feel better. Then hemaglobin started to go down they raised the Aranesp to 500mcg for the next few visits hemaglobin would be up and down so they added Neupogen 480mcg and went to every week with both shots. That went on for about a year and a half. By this time I was so dependent on blood transfusions I was getting them once a week. They tried Vidaza on July 2016. Did that for 3-4 months nothing so they put me on Revlimid. That lasted for a few months and that didn’t do anything. There wasn’t any clinical trials for me to try. They tried some other things but nothing ever worked. They found out that I had a DNA mutation SF3B1 so in March of 2018 I went into the hospital they gave me chemo for the entire week to wipe my body clean of the bad marrow they just kept 4% to jump start the new marrow. It is 4 years after transplant it’s hard for me now because I have no muscles, I have Osteoporosis ( my bones used to be very dense because of working out my whole life). So for me it’s hard to deal with because i can’t do anything I was able to do before all this started. Though I am very grateful to Penn and everyone involved in my recovery. If Penn didn’t develop the transplant I would have died in the 10years which was text book for low risk MDS. Don’t worry about your ferritin levels after transplant my ferritin level was over 6000 so every other week I got the blood drained to get the level down where it should be. GOOD LUCK

[grifty50]

Thanks Kathy for letting me know what else can happen tho it’s scary to learn all that can happen. I would rather know what I’m up against to help with possible cure. Just like in the beginning you have to be your own advocate and stay on top of things Thanks again

[grifty50]

hello Ray
Like you I am suffering with the same issues but not happy with you dealing with GVHD for 5 years tho i have read it can last up to 8 years. The regimen (4 times a day) that I have to deal with mouthwashes. gel, eye drops consumes most of my day and night I always said to myself if my quality of life changes I would not want to stay around and I don’t mind telling you that if this sticks around for 5 years I WILL NOT I know you don’t know me and it doesn’t sound like I’m positive but let me assure that up to this point (11 years) I have been. I guess I shouldn’t have thought I was Superman only to find out I’m just Clark Kent. I thought I would be back to normal by now. BOY WAS I WRONG!! I appreciate you responding to me and letting me know what you go through. You know what they say MISERY LOVES COMPANY!! Just to let you know I am 63 years young.

Grifty50

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