Medical Centers

[Jerry]

I am brand new to the forum. I am 61 years old with MDS and am currently not receiving any treatment other than 60K of procrit per week. I have been to the Fred Hutchinson Center in Seattle but they determined that my QOL was so good that anything they would do could be more harmful to me than doing nothing. I want a second opinion and the MD Anderson folks turned me down saying they agreed with Seattle. I read a lot about Johns Hopkins. Do you all feel that it is the pre-eminent MDS medical facility in the country? Thanks for your help.

[sarah]

Hi Jerry, what is your classification?

[Suzanne]

Jerry, I certainly think Johns Hopkins is a wonderful center since they deserve credit for the fact that I am here and feeling great. However, don’t jump the gun.It could be right that the best thing for you to do now is nothing. You have been to a wonderful center and talked to a second with a great reputation. In the beginning Hopkins also had me on a “wait and watch”status! My QOL was also good. They did not advise more then one brief trial until my blasts started to increase and I progressed to AML. Then they went after the disease. Enjoy your good QOL while you have it. Just be sure you have a Center of Excellence and a Dr. you trust monitoring your condition regularly, ready to act when and if you need action. Things can change quickly. But many types of MDS you can be in that enjoy life and do nothing stage for quite a long time.

[lindajo]

Jerry, I think you are looking for someone to tell you that they can cure you now. That is currently only available with a transplant. My understanding is that even if the transplant cures this disease, that procedure has risks of it’s own.

The high doses of radiation and chemo can leave you just as disabled as you are now, but from complications of transplant and not MDS. You will probably hear the same thing no matter what Center of Excellence you go to. I don’t think that one center is considered to be the best… The one who recently got more research dollars was the Cleveland Clinic.

Your best option might be to wait and see. The doctors at Fred Hutchinson and M.D. Anderson are among the best in the world for this disease.

Your quality of life might be improved through nutrition, exercise and massage. I know nutritional supplements and diet changes lengthened the time between transfusions for me. I went 5 years between transfusions. I still had the MDS but it was manageable. Consult a nutritionist and work at finding exercises that you can do. I do yoga, aquasize and lift weights.
Whenever I don’t, I can really tell. Good Luck.

[Jerry]

Thank you all for your responses.

[Suzanne]

Jerry, Did you miss the question about what classification of MDS you are diagnosed with. Knowing that helps people give you more specific information from their experiences and research.

[Jerry]

Thank you Suzanne for reminding me. They classified me as int-1 or int-2 with a feeling that I am more int-2. But, as of my last BMT, June 2005, I was showing no blasts. Beyond that, what info can I try to give you to help?

[Sandy L]

Hi Jerry and welcome to our group,

When you were diagnosed after your BMB did they say MDS-RA-1 or MDS-RAEB-2 and what about chromosome abnormalties? If you are feeling well and have no signs of the disease than the wait and see attitude does work. Enjoy the time but keep an eye out for changes. Have CBC’s every 4 to 6 weeks and see if any of the numbers are dropping.

[Suzanne]

Jerry, Look up the types of MDs. RA,RAR, RAEB, Raeb-T or 2, CMML,Then there are some “wild cards”or unclasified types. If you do not have blasts I would think you have something other then RAEB. There will be an explanation on this site but I would have thought the Hutch would have talked about a type since the prognosis is quite different for the different ones. Also how about your counts? Whites high or low? How about the other lines? 1 & 2 are risk levels and those numbers are right in the middle risk of it becomming life threatening and/or progressing to AML.

[Suzanne]

I forgot to mention that the other important factor is whether you have any chromsome changes. That increases your risk factor and often is part of the guidelines for drug trials. People with certain changes seem to react better to specific drugs, ie Revlimid seems to do well with patients with the 5q- change and trials are directedt to those patients.

[Jerry]

Sandy and Suzanne … Thanks again … I feel so stupid … I have a 10 page letter from the Dr. in Seattle and nowhere does he mentions any of the types that you are referring to. I do have chromosomal abnormalities in the 3rd and 11th and an internal deletion of chromosome 9 with an additional copy of chromosome 3. My White blood counts (2.1) and platelets (71,000) are very low but my hemoglobin is holding around 11 with 60K of Procrit each week. (My wife gives me 3 20K shots 3 times a week with the dullest needle she can find!) I need to learn a heck of a lot more. This forum has been very helpful to me in learning some things that I do not know.

[Jimbob]

Jerry,
If you have a good QoL, it would be a good time to protect that. Many of us believe that you can help your body help you thru proper diet and nutritional support. I suggest finding a good nutritionist who has worked sccessfully with MDS, cancer or leukemia patients. My nutrionist is also a naturpathic, acupuncturists, and doctor of Oriental Medicine. After blood and urine tests, we started with a detox diet before geting on a theraputic diet. It did help to get my blood counts back within the norms and, I believe, made it possible for me to survive when I had a severe leukemia event. The other thing I suggest is that you find a doctor and a center experienced with treating MDS near your home or family support group and then begin the search for a donor, just in case the disease suddenly progresses.

[Jerry]

Jimbob … thank you … do you have any suggestions on how to find a nutritionist with experience with MDS. My method, I suppose, would be to start calling people listed in the phone book …but, that seems frought with danger to me… ie: someone claiming experience when they don’t have it … thanks again for your suggestion …

[Sandy L]

The hemoglobin being at 11 is good. If it falls below 8 then you need to be tx. If you get blood or platelets remember to request irradiated and single donor if available. That helps so you don’t get too many antigens. Enjoy your QOL and just play the wait and see game for now.

[Author]

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