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Friends and Family Affected by Myeloma

Genetic profile

#1

Hello all. I'm a new member. Recently Dx with MM. 4-13-2016. My FISH test came back with t(14;16) and an extra 1q21. According to recent literature, 2016, this arrangement has a poor prognosis. My oncologist states he starts everyone on the same drug regimen regardless of how aggressive it is. Then re-evaluate after first round. Anyone out there with the same type of genetic arrangement i.e. , translocation 14;16 and and extra 1q2.....Looking or Fishing(no pun) for some success stories. My profile has me worried. Thank you.......Roundtrip

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#2

Hello Roundtrip. I was diagnosed in March 2013. At that time, none of the chromosomal abnormalities were present. After treatment & SCT I achieved stringent complete response, verified on bone marrow biopsy. However, I was in a trial to see if a heavy consolidation chemo could give as lasting a remission as maintenance. Turns out it doesn't and I relapsed last Sept. This time around, I've developed the 1p21 gain as you have, but not the translocation 14;16 (I have another one instead). One thing I read in the research I did, and discussed with my hematologist plus another via phone consult is, it's important to know what percentage of cells carry these abnormalities. One of the top researchers in this field told me that in my case, with 35% 1q21 involvement (and 12% involvement of my other abnormalities), that does not put me in "high risk" category. Some recent studies have indicated that 60% is sort of the "line". Do you know what percentage of cells are involved? It's possible this isn't quite as bad as you think. I will admit I started treatment in Oct with fingers crossed, worried that I wouldn't have a great response with these new factors to contend with, but I started my 8th and final round of VRd (Velcade-Revlimid-dex) with the good new that no m-proteins were detected in my last blood sample, no free light chains in the urine. So even with these abnormalities, you CAN respond! May I ask what regimen you're on, to start with? Hope you are tolerating it well. Hang in there, ask lots of questions, and read all you can. MMRF is a wealth of information (and a driving force behind advances in new treatments and getting them approved) also Myeloma Beacon has lots of good info. Read, read, read and sign up for the online webcasts with updates from hematologic conferences. The more you know, the better patient you are - and certainly the better advocate for getting yourself the best possible treatment. There are several new agents approved in the last few months (mostly immunotherapy) and several more attacking this bugger from other angles in the pipeline and probably available in the next year. My feeling is, knowledge is power! Good luck!

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#3

Thank you Tammy for your wonderful and informative response. I'm not sure what the percentage of my cells have the 1q21 gain and t(14;16) translocation. I will try to get the answer to that. It is very encouraging to me to know that even with those genetic additions and translocations, I may not be at high risk if the percentages are low. Unfortunately, my initial presentation was acute stage 4 renal failure. I was very dehydrated and required 5L of fluid. I was very close, but I recovered and did not need dialysis. I was started on Velcade and Dexamethasone, and have been on that now for 2 cycles. My kidneys are responding well and they are almost back to normal. I was not started on Revlimid because of my initial renal failure. I will probably be started on Revlimid soon. My anemia is slowly improving as well. I'm hoping for SCT before the end of the year. Still very overwhelming to me right now, as it has only been 2 months since my initial diagnosis.

Thank you again Tammy, I appreciate your time and effort to reply. I will continue to read and be an advocate for my health care during this initial time in my diagnosis. Your friend, Michael



Tammy said:

Hello Roundtrip. I was diagnosed in March 2013. At that time, none of the chromosomal abnormalities were present. After treatment & SCT I achieved stringent complete response, verified on bone marrow biopsy. However, I was in a trial to see if a heavy consolidation chemo could give as lasting a remission as maintenance. Turns out it doesn't and I relapsed last Sept. This time around, I've developed the 1p21 gain as you have, but not the translocation 14;16 (I have another one instead). One thing I read in the research I did, and discussed with my hematologist plus another via phone consult is, it's important to know what percentage of cells carry these abnormalities. One of the top researchers in this field told me that in my case, with 35% 1q21 involvement (and 12% involvement of my other abnormalities), that does not put me in "high risk" category. Some recent studies have indicated that 60% is sort of the "line". Do you know what percentage of cells are involved? It's possible this isn't quite as bad as you think. I will admit I started treatment in Oct with fingers crossed, worried that I wouldn't have a great response with these new factors to contend with, but I started my 8th and final round of VRd (Velcade-Revlimid-dex) with the good new that no m-proteins were detected in my last blood sample, no free light chains in the urine. So even with these abnormalities, you CAN respond! May I ask what regimen you're on, to start with? Hope you are tolerating it well. Hang in there, ask lots of questions, and read all you can. MMRF is a wealth of information (and a driving force behind advances in new treatments and getting them approved) also Myeloma Beacon has lots of good info. Read, read, read and sign up for the online webcasts with updates from hematologic conferences. The more you know, the better patient you are - and certainly the better advocate for getting yourself the best possible treatment. There are several new agents approved in the last few months (mostly immunotherapy) and several more attacking this bugger from other angles in the pipeline and probably available in the next year. My feeling is, knowledge is power! Good luck!

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