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MDS Myelodysplastic syndromes

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Old Tue Sep 7, 2010, 12:26 PM
Marie P. Marie P. is offline
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Join Date: Sep 2010
Location: Lac Brome, Quebec, Canada
Posts: 3
Questions about chemo or drug-related MDS

Hi everyone!
Your forum seems to be so helpful.... though a little intimidating because there are So!... many informations. A friendly jungle, but a jungle all the same!
I was wondering if someone in our group knows about chemo-related MDS and what are the pronostics for this kind of MDS? My MDS appeared five years after a successful chemo ( Fludara-chlorambucil-Rituxan) against CLL ( chronic lymphocytic leukaemia). It seems this will happen to about 5 to 7 % of people taking this treatment ( an information I did not have at the time then).
Thanks for your information about similar cases or if you know of any medical article on the subject.
I hope to read you soon
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Marie, 64, dx with CLL ( chronic lymphocytic leukaemia) at the age of 50, now dx with chemo-related MDS. Stage RAEB-1
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Old Tue Sep 7, 2010, 05:00 PM
gipper gipper is offline
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Location: gainesville, GA
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Hi Marie,

There are two broad categories of MDS - primary (de novo) and secondary (secondary to prior chemo or radiation treatment). It is an undeniable fact that secondary MDS results in a poorer prognosis; however, treatments are available including bone marrow transplantation which could result in remission. Your eligibility for a transplant would depend on your overall health. Do discuss your prognosis with your doctor (they're often reluctant to do so, so you may have to prod a bit). I'm going to provide a couple links below, one fairly brief and the other very lengthy and detailed. You can find many more by googling "secondary MDS".

http://www.ehow.com/about_5184248_md...treatment.html

http://emedicine.medscape.com/article/207347-overview

I'm sure others who may have secondary MDS will chime in. There's always hope - try to keep a positive attitude. Many of us have lived a good number of years after getting the MDS dianosis.

Wishing you the best.
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gipper (AKA bill f), 76, ITP 11/00, MDS RA 1/05; myelodysplasia/myelofibrosis non-classifiable 4/09; revlimid ineffective; Dacogen positive; Nplate helpful, thalidomide better for low pltlt count; splenectomy 5/11; RAEB-2 9/11; Vidaza pending
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Old Wed Sep 8, 2010, 06:12 AM
Julianna Julianna is offline
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Join Date: Feb 2010
Location: Victoria, Australia
Posts: 184
Hi Marie. Thought I would just tell you what my Dr told me (I have secondary MDS too from my Aplastic Anemia treatment). He said that transplant is a good option for me. And that when it starts to evolve more, it may do it quite quickly and will be more aggressive. But for now I am living ok. The waiting is the hardest part. Take care and all the best, Marie. Jules
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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Old Wed Sep 8, 2010, 03:34 PM
Marie P. Marie P. is offline
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Join Date: Sep 2010
Location: Lac Brome, Quebec, Canada
Posts: 3
Questions about chemo or drug-related MDS

Dear Gipper,
Thank you so much for your answer and for the very useful links you gave me. I read them both and learned a little more on this mysterious desease. My blasts are around 5 % and I understand that as long as they stay low, it's good news. Your figures seem to be fairly good too and I hope you still have many comfortable years ahead of you. Thank your again... you were the first to communicate with me on this forum!
Let's hope! Together, we are stronger!
Marie P.



Quote:
Originally Posted by gipper View Post
Hi Marie,

There are two broad categories of MDS - primary (de novo) and secondary (secondary to prior chemo or radiation treatment). It is an undeniable fact that secondary MDS results in a poorer prognosis; however, treatments are available including bone marrow transplantation which could result in remission. Your eligibility for a transplant would depend on your overall health. Do discuss your prognosis with your doctor (they're often reluctant to do so, so you may have to prod a bit). I'm going to provide a couple links below, one fairly brief and the other very lengthy and detailed. You can find many more by googling "secondary MDS".

http://www.ehow.com/about_5184248_md...treatment.html

http://emedicine.medscape.com/article/207347-overview

I'm sure others who may have secondary MDS will chime in. There's always hope - try to keep a positive attitude. Many of us have lived a good number of years after getting the MDS dianosis.

Wishing you the best.
__________________
Marie, 64, dx with CLL ( chronic lymphocytic leukaemia) at the age of 50, now dx with chemo-related MDS. Stage RAEB-1
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