[J.claire]

I have missed him too. I wonder if maybe he went somewhere for the holidays where they don’t have internet. Hope he comes back soon.

[J.claire]

this might sound crazy, but I have found a few misspellings in my pathology reports from bmb,from a “center of excellence,” so maybe it’s a typo.

[J.claire]

Dear Pat&Patti, I am glad that the topic of mds and running keeps coming up. I love my runs, but sometimes I get this nagging feeling about the longterm effects. I wonder if it could be because running boosts the immune system and some mds is caused by an overactive immune system. Pat, is your husband hypocellular or does he have low cellularity? I wonder of Dr. Raza has studied this. I will be seeing her in the next few months after I am finished with the workup at Dana-Farber. I have done lots of web searches about this but haven’t found much. Pat, has your husband ever dealt with irritable bowel or colitis or stuff like that? Just curious. Feel free to not answer if I am being too personal. Thanks again for bringing up this topic. I have acutally, for the first time in many years, decreased my daily 6-mile run to a 3-mile run/walk. It’s not easy, but I thought I needed to see if it changes anything. My counts are stable for now.

[J.claire]

Dear Neil and all, It turns out that the flashing lights and other things with the eye are the normal pulling away of the gel from the retina which you had described. Nothing to worry about. I am annoyed with myself sometimes because now since the MDS diagnosis I sometimes over-react to medical stuff. I’m not usually like that. I’m really healthy and strong and have so much to be thankful for. I don’t have symptoms, except for those annoying blood blisters in my mouth, occasional large bruises not caused by anything. I think I would worry less if I had the cbc’s more often for a while, since the platelets have been coming down. Thanks for you wealth of knowledge and your skill at explaining stuff.

[J.claire]

Dear Chuck,
good idea to update this. The optometrist didn’t find anything. I am still having the flashing lights. Will try eliminating coffee, as I do drink some every morning. Thanks

[J.claire]

Neil, in your above post you mentioned that people with mds who start seeing flashing lights should call their DR. I started seeing the flashing lights Sat. and it was preceeded by a weird feeling in my head a few days before. ANyway, two questions: is it the low platelets that could be the cause (if this isn’t just a normal “old age” thing) and (2) I called my primary care DR (internist)and they will call back. But I wondered if I should have called the hemo/onc. instead. Thanks for your post because I probably would just have ignored it, but I did a quick search of this forum and I’m glad I did.

[J.claire]

Dear Ed and Alice, I’m glad those studies were helpful. I hope Neil reads them too because I would like to hear his opinion about this stuff.

[J.claire]

Dear Ed,
I thought you might want to read this study by Dr. Corey Cutler. It is from 2004, but it seems like it is the one that started the doctors thinking differently about BMT and when it is the best strategy. This is one link I found: http://www.bloodjournal.org/cgi/content/…urcetype=HWC IT but also there are summaries of it like this one: http://www.cancerpage.com/news/article.asp?id=7274 or others that are similar. I am one of those people who needs to read and read before things sink in, and this particular study helped me to understand some things I was confused about. Maybe it will help you and your wife. Sincerely, J.Claire

[J.claire]

Dear Kathy, Thanks for the good idea. I tried it and I think it works. I had never heard of this and also forwarded it to some family members.

[J.claire]

Dear Ed, I have only been learning about all this for two months, yet I share you confusion and disillusionment with the medical professionals. On the day I was told my diagnosis the hemo told me that I could only be cured by a BMT and scheduled an appt. with a “Bone marrow transplant doctor” at Dana-Farber on Boston. The first thing this BMT DR told me was that I was not likely to ever have a BMT. I don’t want a BMT, obviously, I don’t ever want to hear MDS again, but all this confusion by the medical people…. In particular I was really bothered by their smirky grins when I talked about using vitamins, diet, exercise, etc… to help fight the mds. They smiled down at me like I was stupid, and said something about how none of it could hurt me… I must add, that mostly I have been treated with kindness,etc., and I like to be positive, but something in what you said really struck a cord with me. I wish you and your wife to find the answers you need, and at least, thank goodness, we have this forum.

[J.claire]

Dear Faith’s Daughter, I share your thankfulness for this forum. I used all the suggestions, plus some ideas I got from searching the archives to help me with my list of questions. It made a huge difference for me when I went for the second opinion. I now am scheduled for a second bone marrow biopsy and some more blood work. I sometimes think this whole MDS thing can be almost harder on the caregivers or the supportive family members than anyone. I know my husband takes it much harder when the cbc levels keep dropping, etc… Your mom is lucky to have you to help her navigate the whole medical jungle. Keep us updated, and all the best to you and your mom.

[J.claire]

Dear Marsha,
CONGRATULATIONS!! You were one of the first to offer me encouragment when I found this forum a few weeks ago. I’m so happy for you that you have reached this two-year milestone. Thanks for sharing your optimistic outlook and positive experience. What would you say are some of the important things you have learned from all you have gone through? Here’s to many many more anniversaries.

[J.claire]

It does appear that my appointment is at the transplant center. LinK: http://www.bmtinfonet.org/centers/index.cfm?FuseAction=Center&CenterID=5 does that mean this doctor will also re-evaluate and diagnose or that he will just go with the original diagnosis, in which case I am not really getting a “second opinion”. Maybe this is just the way they do it. Not sure. I think I really want another opinion.

[J.claire]

Dear Neil and Marla, I am going to get to use those questions soon! The appt with the dr at Dana-Farber is Tuesday. I looked up their stats for bmt for mds. The nurse who called me described him as a “bone marrow transplant doctor.” Two questions come to my mind: is that what the letters MPD mean after MD after his name? also, Would this mean he is more inclined to recommend transplants. Those questions you gave me will help in this regard. This forum has helped me to not feel intimidated by the medical people and their knowledge and the words they use. Thanks.

[J.claire]

Dear Caroline,
I am a newby here (only 2 weeks) and without a doubt you people are what I cling to some days, and I’m not even diagnosed with one of the more serious types. I have gotten so much help and direction and insight from this forum. I sometimes just read old posts for a whole hour to get a feeling for what people have gone through and to feel all of your strength. I never even knew words like myelodysplastic and CBC and lymphocyte or whatever until a few weeks ago. Thank you all. What you said, Caroline, was beautiful.

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