Partial diagnosis- help

[Thomas Mcdonald]

I have recently lost a lot of weight without trying. After months of tests I had a blood smear test that came back and the doctor said I have mds because my cells are abnormal.

I have no symptoms. I go for bone marrow test on Wednesday to Dana Farber in Boston. Any suggestions? Could the blood smear read by an oncologist be wrong?

[Allan Romriell]

From all I have read, Bone Marrow Biopsy is only way to positively diagnose MDS. I think my DR suspected MDS from blood counts but sent me for BMB to verify. I had no symptoms either, just low numbers in my blood work. I hope it goes well for you….

[Thomas Mcdonald]

Allan,

Thank you for your response. In the end did they find you have MDS?

My blood levels are normal, the only thing the oncologist found was when he looked at my blood smear he found some abnormal cells.

I guess I just have to wait for the results of the biopsy. Waiting is not one if my strengts.

How is your disease progessing?

[Allan Romriell]

Thomas, Yes I have MDS, RS is the subtype, which is a very low risk version. The first clue something was wrong came in april when I went in for a physical and my platelet count was 1/2 what it should have been, red blood cells were low and so were the whites I was told. They sent me to a hematologist who sent me for a BMB as he could see no reason for my blood numbers. That verified the MDS-RS diagnosis but my blood counts were already rising. I was put on a watch and wait track and have been back to my Hematologist 3 times since BMB. My last check up was mid October and my numbers were all normal except red blood was a little low(hemoglobin around 12) so he is very optimistic and set my next apt for January. So far I have not had to alter my life much except that there are times I get more tired than before and I just don’t have the stamina I had. That is the long term effect of the anemia caused by low red blood count. I do know that down the road things will deteriorate as there is no cure, just treatment to try and slow the progress. I will be 65 in January and if I survive the “average” time of people with MDS-RS I should have another 8-12 years. So it could be worse but I do hope you don’t have this or anything else. Let me know how it goes, good luck to you.
All the best,

[Donna]

Thomas…….How did your bone marrow biopsy come out? I hope you had good news.

[Clint Holland]

Allan,

I appear to be in the same bed or should it be boat, as you….I just had a bone marrow biopsy and the hematologist believes I have low risk MDS. I suffer no outwards symptoms. Was discovered only as a result routine blood test showing low platelets and etc… The Doctor is sending my biopsy marrow for one further test… He told me that if indeed the diagnosis is correct it will be just a wait and monitor situation with no treatment. He asked me to come back in 3 months with the results of a new blood test for further review – and in the meantime when he hears the result of the extra test being done he will telephone me to let me know outcome on that.

As a result of all this I registered here on this forum to gain more knowledge. I also did the usual google searches to gleam what I could and I read that a drug called lenalidomide was often recommended for low risk MDS. Not sure if such treatment is still the current approach, seemingly not based on what my hematologist said…but one never knows unless we check and double checks I guess. I will certainly raise this with him next time we speak. Allan, you never know what new drugs will they come up with for MDS, as the clock ticks for you and me. I am aged 69, male.

[Allan Romriell]

Gerry, just answered you in another post, but yes seems we are in much the same boat. I was pretty blind sided by this as I have never had any real health problems and was not really showing any symptoms at the time of diagnosis. I do feel the effects now and can see a drop in energy from a year ago. Of course at our age every year is like dog years, we age more than we did in a year in our 30’s. Anyway most days I feel pretty good and can do most everything I want. I hope things progress slowly for you as well, I have read that low risk cases can survive for many years and I hope we can take that road. Good luck and keep in touch. This is a good site to get info and encouragement.
Allan

[Clint Holland]

Agreed, we keep in touch from time to time. I too no symptoms…so likewise came as a shock. Gerry

[Donna]

Thomas, I’m wondering about the result of your bone marrow biopsy. I hope you are well. I also treat at Dana Farber. Are you aware that on this site where they list the upcoming workshops/lectures regarding MDS, it has Boston listed. It is the first time I have seen anything informational in MA since I have been interested in MDS. I hope you had good news.
Donna

[Donna]

Thomas…….I hope you saw on this site that a patient/caretakers forum is scheduled July 21 in Boston. YOu can sign up on this site if you are interested. The agenda is listed and it looks like lots of time for questions/answers. I just wanted to make sure you knew about it. Donna

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