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Arnie’s Rebounding World: The Roller Coaster Ride
By: Arnold Goodman; Published: June 6, 2012 @ 3:13 pm | Comments Disabled
I have taken a few months off from writing my column to deal with my multiple myeloma health issues and to sort out my next steps.
Most of The Myeloma Beacon’s columnists are upbeat, positive, or even humorous. I was feeling none of those things. Most of the emotions I was having were too unsettled, confusing, and raw to write about.
The last few months have been a roller coaster of ups and downs. At least for now, the dust does seem to be settling somewhat and I felt it was time for an update.
My M-spike rose rapidly in December, despite trying several different treatment regimens that included Velcade [1] (bortezomib), cyclophosphamide [2] (Cytoxan), dexamethasone [3] (Decadron), and Revlimid [4] (lenalidomide).
So we did a couple of cycles of chemotherapy with dexamethasone, cyclophosphamide, etoposide, and cisplatin (known as DCEP) and got a pretty good response.
In order to try to maintain the response, Dr. Ken Anderson at the Dana-Farber Cancer Institute in Boston advised that I try a couple of drug cocktails that included the histone deactelyase (HDAC) inhibitor Zolinza [5] (vorinostat) along with Velcade, Revlimid, and dexamethasone.
Unfortunately, this was not effective. My M-spike started to rise again very rapidly, putting me in a really bad spot and running out of options.
Even the allogeneic (donor) stem cell transplant, which had been discussed, was off the table in the face of rapidly progressing disease.
My doctors at Moffitt Cancer Center were pessimistic and at one point recommended I stop treatment and just enjoy what time I had left.
To me this option was totally unacceptable, and I pushed for more treatment. I was nowhere near being ready to be done.
After much discussion, everyone seemed to agree to try a cycle of Velcade, thalidomide [6] (Thalomid), dexamethasone plus cisplatin, doxorubicin [7] (Adriamycin), cyclophosphamide, and etoposide (known as VTD-PACE) chemotherapy.
The response to this has been nothing short of amazing. After one cycle, my M-spike dropped from 2.2 to 0.3, and a recent bone marrow biopsy was clean with no myeloma cells.
Needless to say, this has been cause for renewed optimism and reopened options, including a donor transplant, which were not available a couple of months ago.
From the time I was diagnosed over six years ago, the mantra has always been to just stay alive long enough for the next wave of drugs to come along.
Disappointingly, it does not appear that the next wave of drugs will suffice. None of the experts, including Dr. Melissa Alsina and Dr. Anderson (the guru of new drugs), feel that the new drugs stand to offer any meaningful alteration in the course of my aggressive disease.
Dr. Anderson is advocating strongly for the donor transplant as the next step. Even the folks at Moffitt, who were initially opposed, seem to be coming around to this idea.
So for now, I am doing a second cycle of VTD-PACE to try to drive my disease down further, and then it looks like I am heading for the donor transplant. I recognize that it is high risk, but I do not see a lot of other options and I am willing to take the chance. I’m not ready to give up yet.
I’m not sure how often I will continue to write my column, but hopefully I will be able to write about my donor transplant experience on the other side.
Arnold Goodman is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
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URL to article: https://myelomabeacon.org/headline/2012/06/06/arnies-rebounding-world-the-roller-coaster-ride/
URLs in this post:
[1] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/
[2] cyclophosphamide: https://myelomabeacon.org/resources/2008/10/15/cyclophosphamide/
[3] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/
[4] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/
[5] Zolinza: https://myelomabeacon.org/resources/2009/11/04/zolinza/
[6] thalidomide: https://myelomabeacon.org/resources/2008/10/15/thalidomide/
[7] doxorubicin: https://myelomabeacon.org/resources/2008/10/15/doxorubicin/
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