[J.claire]

How is everyone doing? I find it encouraging that so many new trials and studies are being undertaken, although many of you have struggled with such painful losses. I still have hope that MDS will be better understood and, finally, cured.

[J.claire]

That response from Women’s World is so incredibly insensitive that I will NEVER read that magazine again, even if it is free in the waiting room! Keep on trying to get your story published. How about trying O, the Oprah Magazine? I applaud your courage and stick-to-ed-ness.

[J.claire]

Thank you for these very helpful responses. I tried the warm salt water and it was really soothing, plus I figured it would be anti-germ too. I didn’t go for a cbc because they told me to only go every 4 months for now. My last one was in march and platelets were 120. Not to be too personal, but I think the mouth sores get worse when my “female cycle” is creating a heavy loss of blood. I know most typical mds folks are past this time of life, so maybe they don’t experience this. Again, thanks so much! You people are wonderful.

[J.claire]

Dear Patty,
My heart and prayers go out to you and your family at this very difficult time.

[J.claire]

Thank you for sharing this difficult time with us, Patty. When a day goes by and we don’t hear from you, I worry, since every day must be so difficult right now. I’m sorry. I hope the sharing of the burden lightened it a bit. We all care about you so much. You are always there for every one of us. I hate this stupid disease. (Is it ok to be angry???? I guess so.)

[J.claire]

I live about 45 minutes from Dr. Raza and Umass Medical and you could stay with me (unless you are allergic to cats and dogs, as I have two of each). I have extra beds because of kids in college and I would love to be of help to anyone who needed it. You could also borrow my car or I could take a day off from work and drive you there.

[J.claire]

This link is for the Jan 18 issue of the Journal of Hematology. The study is titled: “Copper Deficiency Causes Reversable Myelodysplasia” http://www3.interscience.wiley.com/cgi-bin/abstract/114075645/ABSTRACT
Although, like Patty says, it’s a long shot. I’m going to try those chocolate covered blueberries, though…YUM!!!

[J.claire]

Dear Aleksandra, I find that having a good sense of humor helps me, and, I’ve gotten some good laughs with this copper thing because, guess what the cure is???? CHOCOLATE!!! It’s really true. They gave the people with the copper deficiency Cocoa Capsules!! I love it! Here is the link about it: http://www.jstage.jst.go.jp/article/internalmedicine/45/19/45_1079/_article

and, all the best to you and your mom.

[J.claire]

Eve,
I am thinking of you and your family and praying for you at this very sad time. J.Claire

[J.claire]

Dear Neil, You have summed it all up perfectly. I really can’t presume to add to the knowledge you have with all the years you have dealt with mds, but I thought of two things: One is, to stay informed you can go to google and sign up for a daily google alert. I put the word “myelodysplastic” in it and any time that word appears in the news I get an email about it. Most of them I just delete, but I like it. My second thing: try to get outside and breathe fresh air and let the sun shine on you (if available) once a day. It was -13 degrees this morning and it still felt good. So that’s my two cents. Thanks again, Neil. I’m going to print out what you said and tape it to my kitchen cabinets.

[J.claire]

Dear Eve, Prayers have been sent. What is your dad’s name? I have a bunch of people praying for me today (second BMB) and I am asking God to take all that positive energy and reflect it off of me onto your dad, like a mirror.

[J.claire]

Yes. Some of the people whose mds was reversed had the chrom abnormalities, although the thing I read did not specify which chrom abnormalites. Also, the study also said that this can happen to people who eat a normal amount of copper (my multivitamin has 100%) but for some reason don’t absorb it. Thanks for your reply.

[J.claire]

What a good idea! Maybe we could come up with a sort of checklist of things that people with mds have experienced that we wonder if could have been a part of developing this disease. I used to walk to work every day through this mist that was put out by a factory where they coated paper using tolulene, which is similar to nail polish remover. They always said that the amount in air was not toxic, but I always wondered because you could smell and feel it.

[J.claire]

My good friend’s daughter will celebrate her four year anniversary of her bone marrow transplant on Jan. 23! She feels wonderful!! She lives in Florida. I wish you all the success that she had. I’m sure there are many more positive stories still to be posted.

[J.claire]

Dear Arlene and pigduck, I am interested in the cyclosporin. What type of drug is it? I’m so glad that it worked for your husband. I have read that some studies showed a better prognosis with hypoplastic marrow, which is also encouraging. I also read something about immunosuppressive drugs being good for hypoplastic folks, so I wondered if cyclosporin is that. I am having a second bmb next friday because the second-opinion doctors didn’t think the first bmb was good because there were so few cells. I hope this one is able to get more. Thanks for all your anecdotes and information. I have learned so much here. This forum is the first thing I read every morning, even before my email. I think of you all as friends.

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