I was diagnosed with MMY 8 months ago. I'd had back pain for many months before the doctors finally figured out the true cause. I had an aggressive presentation. I was in renal failure and had many lesions, though no fractures. My bone marrow was 40% myeloma cells. I have done very well since, however. My kidney function quickly normalized and stayed there (creatinine of 1.1 or so). I had three rounds of chemo (Velcade, cytoxin, dex), then high dose chemo and stem-cell transplant. I am now in CR and have been for several weeks.
The question is what I should do for maintenance? Velcade, Revlimid, or both. I was told by my primary doctor last July that I was high-risk based on my cytogenetics report. After repeated requests, I recently reviewed a copy of the actual cytogenetics/FISH report at the time of my diagnosis in June 2013 and have very serious doubts that I have been properly classified. My FISH report of 200 cells was completely negative for ANY bad cellular abnormalities: No 17p13.1 deletions, no 13 deletions, no 1 p32.3/CDKN2C deletion, no ! q21/CKS1B amplification. I did have 9.5% cells (19 out of 200) with translocation 11:14, but that is considered neutral or favorable from everything I've read.
On the other hand, cytogenetics showed one bad cell out of 20. The single bad cell showed a deletion of 13, various chromosome 1 abnormalities, the 11:14 translocation, and gains on 19 and 21. The chromosome 1 abnormalities were not inconsistent with FISH. They involved deletions on parts 1p12 and 1 q 12. My research has revealed that the deletion of part 12 of chromosome has a de minimis impact on survival (unlike part 32.3), and I do not have the 1q amplification. From what I gather the gains on 19 and 21 are favorable and could offset the single bad cell's unfavorable features. In interpreting the cytogenetics, the pathology report only said the following:
"One abnormal and 19 normal male metaphases are analyzed. The single abnormal metaphase exhibiting hyerptetrapoidly with an apparent der (14)t (11:14) represents clonal aberration which was consistent with the FISH studies....Abnormalities involving gains of chromosome 19, 21, and structural abnormaiities of 11q and 14q have all been associated with a diagnosis of Myeloma. FISH results to follow."
The interpretative part of the pathology report did not even mention chromosomes 1 or 13.
My main doctor has recommended that I do Velcade maintenance, or a combo study with oral Velcade (MLN 9078) and Revlimid because of the chromosome 1 and 13 abnormalities on cytogenetics. In calculating the best course of action for me for maintenance, should I really look at myself as high-risk? From what I've seen, the 13 deletion by cytogenetics is generally considered intermediate risk, but I only have one cell out of several hundred. Responding to another post on this forum, a doctor wrote "In general when a patient meets the criteria, it will be stated as so in the pathology report. Generally a specific percentage of cells must be affected by the genetic finding to be clinically important." I have seen other studies in which at least 10% of cells must be affected for the abnormality to be accorded significance.
Last September, I was fretting about my bad cytogenetics with a different doctor, the one who supervised my stem-cell transplant. He told me that I had only one abnormal cell out of 20 and many places would not consider me high-risk; however, they had discovered that even a single cell could have an impact. I did not realize at that time that I had actually had 200 cells checked (not 20) and the percentage of cells with a bad abnormality was .5% (not 5%).
Can a bad strain or clone be inferred from a single cell? Should I properly be treated as regular-risk, intermediate risk, or high-risk based on the initial cytogenetics/FISH?. Has anyone else out there had a single abnormal cell with bad characteristics out of several hundred cells check. Have any doctors out there had patients with a single bad cell? How were they classified and treated?
Thanks to all for your feedback.
P.S. I had another biopsy last September, and the cytogenetics/FISH were completely normal, not even the 11:14 translocation.
Charles Lewis
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