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RT and
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01/14/2014 14:08
lori 
01/14/2014 14:08
lori 
Re: RT and

Callie,

My heart is so saddened. You are a researcher and have contributed great information to this forum. I know you will research your new diagnosis with the same zeal as DD.

Please keep us updated as you go throught this stressful time. My thoughts and prayers are with you each day.

Lori

01/14/2014 23:07
callie 
01/14/2014 23:07
callie 
Re: RT and

Thank you Lori, all of you are very kind. I'll just try to make the best of it. I have learned a tremendous amount in the last two months that I hadn't anticipated.

03/14/2014 01:12
moondanc 
03/14/2014 01:12
moondanc 
Re: RT and

callie:
nt.
----------

This is my line.

age 67, dx MDS RAEB-2 11-26-2013: pancytopenia WBC 3.8k, Hgb 12.8, HCT 36.1, Plt 34k, RBC 3.69; cytogenetics – no abnormalities, 9-11% blasts. Start Vidaza 12-16-2013.

Hi Callie,
I'm very, very sorry to learn of your diagnosis and belatedly send my good wishes. My best friend's sister was just diagnosed with MDS (not sure of staging) and she was told she had the 5q syndrome (named after the chromosomal defect that causes the symptoms) type--a genetic disorder which is apparently a rarer form of MDS. I'm going to assume that since you didn't mention that you have another type? Have you been able to discuss with your hematologist the amount of radiation exposure that might cause MDS?

I have had RT although only one round on each hand and recently had a weird, flat, small red spot on my palm. My dermatologist didn't have any idea what it was and decided to biopsy it.l Luckily it turned out to be benign. He said he did additional research on RT for Diupuytrens because of my case and couldn't find one single case of cancer in the literature that could be tied to such a small dose of radiation. Makes me feel a bit better...

I'm glad to hear you have found a helpful support group. I'm amazed at the number ofr clinical trials for MDS. My s-i-l has multiple myeloma, another hematolical malignancy, and had a bone marrow transplant more than two years ago. It was extremely difficult but she is now in remission.

All the best to you,
Diane

03/27/2014 05:01
MikeNinerSeven 
03/27/2014 05:01
MikeNinerSeven 
Re: RT and

Hi callie,

I have DD and have been reading on this board for about 5 years (DD for 7 or 8 years). I remember reading posts from you over the years and always appreciated that you took time to respond.

My heart goes out to you. Yes, DD must look trivial from your perspective. I do hope for the best for you. You will be in my prayers.

I am looking at RT and am worried about side effects and out right problems. I have read several of the papers and think it is safe but looking at your case and the timing of the platlets dropping it makes one wonder. I know the Dr in Germany has said he has never heard of a case going terrible wrong. I am curious, where did you have your RT done? Were they new to providing the service? I am wondering how you might "record" your case for the researchers? If we all developed somethinig 10 to 20 years from now and do not report it people will still consider RT safe (which I hope it is.).

I hope your teratment works.

Take care,
Shane

03/27/2014 16:49
mukasama 
03/27/2014 16:49
mukasama 
Re: RT and

callie,

So sorry to hear your news. My Dad died of MDS in December, but he was in his 80s and had abused his body with smoking and drinking all his life. He also had had Type II Diabetes.

Thanks for sharing your blood test information. Since I am planning to have RT soon, it is more than worrying. I too have always been healthy, eat right and live cleanly. I know it's expensive, but I'm thinking now that it would be worth having blood panels done before and after the first round of RT.

Wishing you the best outcome possible.

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