[J.claire]

Dear Marla, I also wanted to address something you said, because I am really worried about it. It is your comments about running and nutrition. About 4 years ago, I lost 100 lbs and became a runner and I eat incredibly healthy. But, since this mds thing, I have wondered if I’ve gone too far. I would never admit this, even to myself, because I have worked so hard to be in shape, and my cholestral, bp, etc., is so good. But could it be that all the exercise has affected my marrow? I don’t know. It has been in the back of my mind. I read all the info on runner’s anemia, and even gave copies of it to my hemo. He discounted it. He said it could cause slight dillution of the blood, but not to this extent. Just so youknow, I’m not a competitive type runner. I average about 12-13 minute miles, and I run for pleasure in the woods and fields to gain spiritual strength from nature. I know I get enough of all the nutrients because I have carefully made sure of this. I even eat 2X the protein I need. But, still, you made a point that has really bothered me. Are these other 5 runners hypoplastic? Are they here on this forum so I could talk to them? Thank you. I can’t possible express how much I am gaining from all of you on this forum. I have so much to think aobut that it is overwhelming. But, mostly, I keep t hinking that the diagnosis could be a mistake.–ThaNKS.

[J.claire]

Dear Neal and Uno,
You have expressed exactly they general thoughts I have been having in two areas, one being the diagnosis. I read a transcript of a presentation on 11/16/06 by DRs Estey and Gore (link: http://www.leukemia-lymphoma.org/graphics/National/MDSFinalTranscription.pdf ) where they say that about 10 percent of the people who are send to md anderson with MDS diagnosis don’t have it, they also talk about the real risks of transplants, and, expecially, the hypoplastic people, like me, who respond to immunosuppressive therapy. My hemo, with umass medical (where they do a lot of trials and follow a lot of mds folks), told me on the day of my diagnosis that I should not trust any doctors, always question, and especially, be careful of trials. He said my age, 50, and my good health, made him suggest transplant. But, he also said he wants another lab to read my results, and when questioned on friday, agreed with me that it is possible that another lab could make a different diagnosis. That’s why he is making me an appointment at dana farber. Do you think I should ask them to do another biopysy, if they are going to just use the old one? Pretty soon, I will learn all the abbreviations you folks use, and my posts won’t be as long.

[J.claire]

Dear Willie and Ken,
WHat good advice! I have been doing lots of searches of this forum and I have learned more that from any other source. What a help to me. Also, I am going to ask my hematologist if I can have monthly CBC’s for a couple of months. I had one on 9/1/06 and my next one isn’t till January. I would like to be able to see the numbers monthly for a little white to get a feel for the natural variation in readings, plus sometimes waiting I begin to worry. Good ideas. Thank you so much.

[J.claire]

Dear Chuck,
Yesterday I went to the doctor’s office and got my CBC’s. This is what it said: RBC=3.4, Hgb=12.0, Hct=34, Plt=164, WBC=2.4 I’m so glad you mentioned that I should know these numbers. They were not part of the bone marrow biopsy, so I did not have them. I’m still a little confused. My hematologist is setting up an appointment at Dana Farber in Boston for a second opinion. I wonder if they will do another biopsy. I keep thinking this could all be a mistake because I feel pretty good. I run every day 5 or 6 miles and I’ve always been this really optimistic, spiritual person. My therapist says I am in denial or “numb” but that it’s ok. How are you? Did you used to think about it a lot when you were first diagnosed?

[J.claire]

Your explanation really helps a lot. I had looked at several online sources and couldn’t find anything that made sense to me. Thank you so much. I am glad to hear that your father is doing well. Are you and MD? You certainly do understand biology, or whatever this is!

[J.claire]

Thank you for your questions. The pathology report from the bone marrow biopsy is hard to understand, but basically it seems to me that everything like promyelocites, lymphocytes, etc, are within normal although on the low end. The M:E ratio is decreased. The diagnosis says “hypocellular marrow with trilineage hematopoiesis and relative erthroid hytperplasia.” The chromosome stuff was perfectly normal. then, at the end, it says, “mild dyserythropoiesis including mild megaloblastoid changes, some nuclear irregularity, occasional keryorhexis… I do not know what any of that means. I looked up some of the words in a medical dictionary, but basically it seemed like it was not too serious, although my hematologist told me it was very serious, and he is usually laid back. I turned age 51 yesterday. Thank you so much for answering my post.

[J.claire]

I have read and re-read your words. So many different experiences, and so much caring and intelligence in your responses. I am so glad I found this forum. It is so hard to get real answers from the doctors and nurses, since they have to be so careful about what they say, and they can’t really speak from experience like you all can. I hope even more people tell their stories about the decisions they have made for surviving MDS as best they can for who they are. Many many thanks to all of you.

[J.claire]

Thank you so much for your frank, intellient response. My hematologist and two of the nurses are urging me to consider the transplant relatively soon, and I do greatly respect them. It is really good to hear from a real person who went through this. Did you worry about the transplant survival stats? It is so nice to connect with someone.

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