[Darice]

I'm pleased to have found an active forum on bone marrow failure and MDS. My husband has recently been diagnosed with secondary, or treatment-related MDS. We know this is the tougher type to treat and bring under control. I'm here to learn as much as I can so I am ready to help him in the battle. Sorry in advance that this is going to be so long, but he is complicated.

He was diagnosed with non-Hodgkins's Lymphoma in 2001. There have been something like 6 recurrences and we have treated with various chemos, radiation, and surgeries until a stem cell transplant (auto) in 2008 killed it dead. He had a brain tumor at the beginning that may or may not have been part of the NHL; it was never biopsied. They shrank it with heavy duty steroids and then put an Ommaya reservoir in his skull and ran 18 or 24 (I forget which) rounds of intra-thecal methotrexate. In 2009, he had basal cell carcinoma and Mohs surgery. In November 2010 he was diagnosed with transitional cell carcinoma in the right renal pelvis. It has been treated surgically and with intravesical mitomycinC. Had cysto/ureteroscopy June 7 (all clear) to clear the path to begin treatment with Vidaza. I believe there have been eight or nine distinct/different chemos with at least one more than once. I guess that gives us plenty of reason for this to have happened.

Over the years we have had trouble with blood counts, and they have been a long time coming back following the stem cell transplant. Always seemed to be an explanation for the drops (several pneumonias, H1N1, etc.) until mid-March: WBC 1.3, RBC 2.17, HGB 8.3, HCT 24.2, PLT 41. No reason. Bone marrow biopsy . . . they suspected return of the NHL . . . turned up (after almost 2 months) the t-MDS. Another BMB mid-May confirmed and further defined. I don't yet get all the terminology, but I'm pretty good at it after 10 years of cancer battles. The t-MDS is harder to type, apparently, but is closest to the RCMD. His IPSS is 1.5, or intermediate-2. I know he is further complicated by other conditions: diabetes, hepatitis B (probably from early transfusion or procedure) A-Fib, and general weakness from all the battles.

I don't understand all of the report from the BMB. I know he is "positive for 7q deletion/monosomy 7, 51.5% of cells." And I know that's not good news. There is all sorts of discussion about particular odd cells, but the bottom line seems to be:

Cellular bone marrow with trilineage hematopoiesis exhibiting dysplasia in all three hematopoietic cell lines.
Increased storage iron with abnormal iron incorporation and ring sideroblasts.
No evidence of transformation to acute leukemia or involvement by lymphoma. {that would be the good news}

I saw other chromosome stuff, but a particularly worrisome note was in listing notes from previous studies (I'm assuming the March BMB) indicates "positive for deletion/monosomy 7, 30.3% of cells." I guess that means the involvement has increased from 30.3% to 51.5% over two months? I don't think this is good news.

My husband is a fighter, but this sure looks to be the biggest battle yet. We are to start with the Vidaza on Monday (13 June) and will do 7 days in 28 and repeat. I understand it may take up to 6 months to determine if this is working. I spotted a thread where Vidaza apparently caused a drop in blood sugar level, so will be alert to that. I do know the prognosis is not good, but we're ready to put up a damn good fight. Any advice and support is welcome.

I like the signature lines and that it lets you know where the person is in the battle . . . trying to figure out what mine should be:

Darice, wife of Jens, male, 70, diabetic, HepB, A-Fib. dx NHL (follicular --> B-cell) 9/2001, BMSCT (auto) 5/2008 (dx BCC, 5/2009/Mohs, dx TCC rt renal pelvis, 11/2010/surgery/MMC), BMB 3/2011, 5/2011 --> t-MDS: RCMD, IPSS 1.5 (Int.-2), trilineage hematopoiesis/dysplasia, inc. Fe, ring sideroblasts, 7q deletion/monosomy 7. Start Vidaza 6/2011.

Please let me know if I've got the jist of it there

Thanks