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[Mike Lafferty]

I was just diagnosed with MDS today. I’m very under educated on the subject but I’m really glad to see a forum to talk with and learn from. I am a 67 white male living alone in Oklahoma City. I had prostate cancer in 2006 and had a brachytherapy treatment which was successful. I also have all but about 8 vertebrae fused and have had many many X-rays and ct scans since the beginning over 2012 mainly. I’m going to start injections in two days to try to improve my anemia. Since April of this year I have had symptoms that no one could explain. I have no energy, I’m dizzy and weak and I get extremely short of breath after just standing or walking a few feet. Anyway I’m sure I’ll have lots of questions and I appreciate the willingness of you all to share your histories and your knowledge.

[mdsfound]

Hi Mike, Thank you for your post. I know this is a difficult situation for you and I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion. You should be very carefully assessed before undergoing any treatment. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address to ahassan@mds-foundation.org. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us at 1-800-MDS-0839.

[Beth Pilot]

I had similar problems with running out of breath and not being physically able to do what I had been able to before the “symptoms” started. When I went to have my TSH tested to see if the Synthroid I was taking was out of whack, the doctor’s office called me to tell me that my hemoglobin was 4.6. After an overnight blood transfusion, I went home and tried to feel better. I was 51 when that happened, fall of 2013. About 6 weeks later, hemoglobin dropped to 5.9 and I was off to get another transfusion. That’s when a hematologist/oncologist was called in and after BM biopsy discovered that I had MDS. They said I was very young for this cancer.
I remember riding my bike behind the mosquito fogging truck in the summers when I was a child, along with some friends I grew up with. I contacted them and discovered that 1 has been diagnosed with AML. Yep, DDT is not good for humans.
I had the vidasa shots each month for 9 months and then had a stem cell transplant. The vidasa shots were hard for me, even though my doc kept telling me that some people work during that treatment phase. Transplant was very hard, but I have muddled through. Chemo brain is real, and if you add fibro fog (I have fibromyalgia) sometimes I have forgotten my thought in mid sentence. I just go with it and make sure everyone knows that I’ll tell them when or if that thought comes back to me.
I strongly recommend that you contact the LLS for assistance, as well as Be The Match. These were my 2 greatest resources for information during all of the confusion that set in immediately after diagnosis. The people I spoke with went way over and beyond anything I asked to get me information or answer questions or calm a fear.
I recently celebrated my 1 year transplant birthday. I’m 100% donor and so far MDS free. I am dealing with some chronic GVHD issues that have taken a toll on my “I’m going back to work ASAP” outlook. I’ve had to just adjust my attitude to “I’m going to do as much as I can today and be happy that was able to do that”. For a previously very independent woman, that adjustment has not been easy, but it gives me a direct goal to work on.
Nobody really mentions that GVHD can affect your muscles, unless you dig for that info. This has been my malady so I’m interested in more information about the chronic GVHD issues that don’t seem to be as widespread as maybe mouth sores or skin rashes.
Thank you for this forum….

[LeAnn Duke]

Hi Mike,
I have MDS and am considered low risk. My symptoms sound much like yours. I am 58 and had a finger stick last year Oct 2014 that showed my hemoglobin was low and they assumed I had low iron. So the Nurse Practitioner put me on iron and suggested I get my regular MD to check it and keep up with it. So I did and when she ran a iron test along with other blood work she called and said she was baffled because my iron was high, but I was very anemic. She sent me on to a hemotologist and he put me in the hospital for a transfusion that day. Hemoglobin was at 7. The next day I underwent a bone marrow biopsy and they diagnosed the MDS. I have refractory anemia with ringed sideroblasts. Red blood cells only are involved at this time with rings of iron around the cells that are being produced. Apparently not enough of them are living though, thus the anemia. Mr Dr suggested Aranesp/Erythropoietin injections which we did for a litte over three months and they did not work. for now I am transfusion dependent (having 1 every 3 1/2 -5 weeks). For some reason it is rather unpredictable and some months it is every 1/2 weeks and other times I feel good and my levels hold up to 4-5 weeks. This time it has been almost 5 weeks. I will go this week as I can tell by the blood pounding in my head that my hemoglobin level is dropping.

I hope you have good luck in finding a treatment that will work for you. Do you know what stage you are at or what type of MDS you have?

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