Myelodysplasia Support Group
The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified...
Hello. My name is Jack and I live in north Texas. I was diagnosed with MDS last July. I'm 71 years old and up until this hit, I have been in great health with nothing major my entire life. Now this. I first noticed something wasn't right last June when I was to the point that just walking across a room would tire me out. I called my doctor and he told me to go to the ER, which I did. They put me in the hospital and gave me 4 units of blood over the next 24 hours and sent me home but with some follow up instructions. At first they were looking to see if I was losing blood internally somewhere but could find nothing. Then a bone marrow biopsy determined that I had MDS.
My treatments so far consist pretty much of having transfusions every week to ten days to bring my HGB counts up. They tend to be in the 8's after a transfusion but drop off to low 7s after a week or so and then it's back for more blood. This has been going on now since last July. I'm also getting a series of chemo injections once a month. I'm in north Texas and have been down to MD Anderson in Houston several times. I've had several biopsies and nothing seems to have changed since last year. I'm heading down to Anderson in a couple of weeks for some more test.
And that's my story. I have no idea if others are seeing the same things I am or have the same type of treatments but would interested to hear of any. I have spoken to the stem cell transplant folks at Anderson and they'd love to do one on me but to be honest, I'm not sure I want to go through that at this point. Any thoughts would be appreciated.
Over the course of the next three weeks my counts slowly increased to the point that I was released from the hospital. However, since the doctors wanted to see me daily and my home is 75 miles away, I had to stay locally. Fortunately the hospital has an agreement with an apartment complex that provides low cost, week by week accommodations so I was able to stay there until the docs released me to return home. That process took about another three weeks.
At that point it was home and visits to the Oncologist every week for six weeks or so, then every other week, three weeks and now it's up to every six weeks. It took me into the fall/early winter before I had my strength back but it did come back. My levels are all excellent and it appears I've licked this evil condition.
I lost about twenty pounds throughout the process and have not gained it back but I'm at a good weight (170 at 5;10"). I'm playing golf three or four times a week and do not tire out. But at 73, going on 74 now, I'm in as good or better shape than a lot of other folks my age.
Bottom line ..... the transplant was a success! I honestly believe that the support and prayers I received from literally hundreds of people along with a very positive attitude brought me to this point. When I was diagnosed I was initially told that I had a terminal disease .... not something you want to hear. But I refused to go set in a corner and die. I continued to be ME, doing the things I could and not dwelling on my condition. I would encourage anyone in this situation to do what what (within reason). Get out, do things and don't just set and wait for things to happen. Get the treatment your personal physician recommends. It's a process but it worked for me and no reason it would not work for YOU. I'm recovered. Hopefully others can recover too. Prayers for all ............... Jack
I'm so happy that you have recovered and beat this MDS.
?? Did you have a sibling for a donor or from a donor bank??
Thanks for listening. Praying!
Anyway, great that you're doing well and if you have the transplat (and even if you don't), keep in touch and let us know how you're doing. You said a specialist in Chicago. Where are you located? In the Chicago area? I lived up there for a long time so I'm familiar with all the suburbs. Good luck. Praying right along with you.
Later Jerry
up around 30,I'm at 15. Not sure what that means.
Will be talking with specialist tomorrow, they set up phone visit so I don't have to travel or go into the Chicago hospital. Day 7 of shots tomorrow also.
Looks like transplant is off the table for now. Especially with this covid19 pandemic.
Take care, later Jerry
Jerry
How have you been doing? Praying for you.
Jerry
As for me, I'm doing good. Hate dealing with this covid virus but living in Texas I'm not as locked down as many other folks. My passion is playing golf and our courses have been open throughout so I've been able to get out and get some exercise and fresh air. Although we haven't really taken advantage of it, most of our restaurants have had curb side pick up so we are able to get a restaurant meal from time to time.
I haven't seen my oncologist since February. I had an appointment for early April but it was moved to May and now to June so I really don't know what my numbers are right now. However, I can only surmise that they are okay since I'm feeling fine and my GP saw me last week and all my other, normal numbers are okay.
Anyway, take care of yourself and my thoughts and prayers are with you as you fight this thing.
Jack
Praying for you always.
Jerry