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Old Thu Dec 29, 2011, 02:36 PM
Darice Darice is offline
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Join Date: Jun 2011
Location: Colorado Springs, CO
Posts: 91
Hi Anne
Both welcome and sorry you have to be here. The fact that your MDS is a result of the chemo and radiation from your breast cancer makes it secondary or treatment-related MDS which is tougher to treat than the primary or "de novo" MDS which apparently just appears out of the blue. As you can see, this thread is about the chromosome damage that goes along with the MDS and it is stuff that you will be learning more and more about. Have you had a bone marrow biopsy? If so, ask for the results and this will get you started in understanding what's going on. I was just thinking that I was going to copy this entire thread and keep it as a pretty valuable explanation of the chromosome stuff . . . which was all new to me.

My husband is also secondary or treatment-related MDS and has a pretty poor prognosis . . . BUT NONE OF US HAVE EXPIRATION DATES STAMPED ON US ANYWHERE! Do not buy into the gloomy prognosis and, if necessary, find another onc/heme who has a more positive attitude. You need to stay positive in this battle. Jens' prognosis, according to some of the more gloomy statistics I have read, was something like 4-5 months from diagnosis . . . he's about 9 months out right now. And doing well, all things considered.

Get copies of your blood counts . . . the CBCs . . . and start reading. My husband had his stem cell transplant (auto) at 67, and did well . . . it was tough, but we made it. He's 70 now and a good fighter. You've got a lot of fight left in you . . . find a good doc . . . and there are those who will accept medicare/medicaid. Come here with questions . . . there is a wealth of information here.
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hubby 73, dx NHL 2001, CNS involvement. SCT (auto) 5/08 [dx UTUC renal pelvis, 2010/surgeries/MMC], MANY recurrences, chemos, surgeries, rad. dx t-MDS 3/11: IPSS 1.5 (Int-2); MDA 11, RCMD trilineage, inc. Fe, ring sideroblasts, 7q del/mono 7 (51.5%), 46,XY,t(6,17)(p22;q25)[4]/45,XY,-7[4]/46,XY[12].
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