Ping,
As has probably been made clear to you by now, there is no real consensus on Myeloma treatment, though, admittedly, there are a number of protocols. Like you, I have 17p deletion. I had a SCT in June of 2013. My transplant doctor recommended Velcade only for maintenance based on the clinical trial reviewed in the link below from the journal Blood. This was not the protocol my local oncologist had planned, but after reading the research provided by my transplant doctor, he agreed that the research was compelling.
I went on Velcade shortly after my return from the SCT. Within a few months, I asked about reducing the dose. Again, my oncologist was very hesitant, but my M-spike was not measurable and all my numbers (except RBC) were normal, so he finally agreed.
Near the end of the year, I began asking about discontinuing the Velcade altogether. Again, my oncologist was very resistant initially, but finally agreed that my blood work was good enough to give it a try. So, for over a year now, I have been off all cancer meds, with the exception of a very low dose methylprednisolone for energy.
My numbers continue to be good and, yes, I'm tested regularly and monitored by my oncologist, but so far, so good. Since my condition was so severe when I was first diagnosed, and none of my doctors at the time expected me to live, I am clearly a bit of an exception. So I am not suggesting that you follow my protocol, but I would suggest that you discuss it with your own oncologist.
Aloha and best of luck,
Daniel
K Neben et al, "Administration of bortezomib before and after autologous stem cell transplantation improves outcome in multiple myeloma patients with deletion 17p", Blood, Jan 26, 2012 (
link to full text)
Moderator's Note: This study is summarized in the Beacon news article: "
Velcade-Based Therapy May Improve Survival Of Multiple Myeloma Patients With Deletion In chromosome 17" (Feb 24, 2012).
