Different Perceptions Of Myelodysplastic Syndromes

[riccd2001]

Today's MDS Beacon has an interesting, easy-to-read summary of the 2012 survey about perceptions of MDS patients and the Medical Professionals who treat them.

To summarize; ...MDS patients and their physicians have “disparate views of MDS characteristics and of the value and limitations of treatment.”

http://www.mdsbeacon.com/news/2014/0...tic-syndromes/

[Caregive]

Thanks for that link. I also read the other articles mentioned at the end of the article. Older studies but worth reading. I wonder what other research is being done at present.

[maggiemag]

Interesting that there are such disparate views! My physician treats MDS as a cancer and we really do think along the same lines with all the points mentioned in the article. To me what is also interesting is who considers Revlimid as a chemotherapy drug, versus just a drug. I googled that question once, and the majority of results stated that it is chemo, just a different type than the cytotoxic ones the public is familiar with. We know that it is an immunomodulator variety of chemo.

[riccd2001]

Some years ago I thought I was having a positive response to Revlimid (Hgb moved up to 90 from 70 g/L) but my WBC tanked to a dangerously low level. My doc stopped that chemo treatment and tried another low-dose chemo that finally indicated nothing positive. That was enough for me! I decided to go the regular PRBC transfusion route; where I live SCTs are not allowed for those over 65. So my decision regarding chemo was easy! I had no other choice.

[slip up 2]

Good read.....it would be interesting if by Physicians & health care what they are considering G.P. or Oncologist or Oncologist/Hematologist.....that to me would make a big difference how MDS is explained.....

When one considers the knowledge of MDS by some of the posters on here, I am sure they could give the lectures at Medical School for the GP's......

Sometimes it is just easier to say cancer/leukemia than an explanation of MDS.....there again that would depend how much understanding the Physician has and how much the patient would ever understand......

The more you know the less you know........

[Chirley]

My ex GP told his Practice Nurse that I had leukaemia. At the time I was so pleased that I knew he only said this because it was easier to understand than saying I had MDS otherwise I would have been a bit shocked.