January 13, 2005 at 4:46 am #3179KATHY1Member
I’m just wondering if anyone knows what the chances are being diagnosed with Secondary MDS after treatments for Non Hodgkin Lymphoma? Though I’m not sure what treatment she is receiving, my aunt is being treated. They say MDS is not hereditary but since my mom had it and my grandmother had high WBC I’m thinking she may be more vulnerable. Can anyone with Secondary MDS tell me how long after your treatment you were diagnosed with Secondary MDS?
KathyJanuary 13, 2005 at 11:50 am #3180LauralMember
I had acute lymphocytic leukemia in 1986, achieved remission in 1987, then had secondary MDS diagnosed in 1992. I have been on several different chemo trials, and have been able to keep the disease in check that way. Currently my blasts are low and I am not needing any transfusions to support the blood at all.January 13, 2005 at 12:43 pm #3181geebeebeeMember
Kathy, my Mom had treatments for breast cancer five years before her MDS diagnosis.
GregJanuary 13, 2005 at 2:26 pm #3182CarrieMember
My dad had many treatments (CHOP, auto-SCT, Rituxan) in a period between August 1994 (he was diagnosed NHL in June) and January 2003. After his last Rituxan, it was about a year and a half of no treatments before he was diagnosed with sMDS.
From what I’ve read, there may be a correlation between the SCT and MDS. Some people who survive the SCT and for 5 years appear to be getting MDS. I’m not sure if it’s just the SCT or if it’s because of the CHOP he got when he started.
So… basically from start of treatments for NHL to diagnosis with MDS was about 10 years. All of my dad’s data is probably more confusing than helpful but I hope it helps some way.
CarrieJanuary 13, 2005 at 3:13 pm #3183Barb1962Member
My husband was diagnosed with NHL back in Jan. of 2001. He received CHOP, CHOP w/Rituxan (with little change) then received DHAP. Then he later on received Zevalin and a trip to Mexico where he received low dose Chemo and radiation. Sometimes I think the Zevalin was the culprit, but not sure. Some say the CHOP was. He then had his spleen removed in June with good results (but before that NHL was in smoldering stage, so was doing ok. Then his hemoglobin started to drop, in November did BMB and is having another next month (Feb). They are saying he “probably has” MDS, but I think the next BMB will tell for sure. Today he is on his way up to mayo for his first transfusion, hgb was 6.8. So his hgb dropped from 7.8 to 6.8 in a month’s time. Hope this helps, your welcome to email me also.January 13, 2005 at 4:12 pm #3184AprilMember
Kathy ~ My mom-in-law is the same as Greg’s mom. She was treated for Breast Cancer in 96/97 and it was 5 years b4 she was told she had MDS. I think it all depends on how strong the Chemo/radiation is as to if they will develop MDS.January 14, 2005 at 4:40 am #3185KATHY1Member
Thanks to all of you who replied. The thought of possibly having to go through all this again is so scary. My aunt and mom were very close and she has no children of her own. Her husband passed away so we are her family. So far she’s well and it may never go that way but MDS is always on my mind. Thanks for your help.
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