[DanielR]

Aloha from Daniel in Honolulu

by DanielR on Sat Aug 30, 2014 9:51 pm

A big part of the value of this site is that we can offer our individual stories and, perhaps, some hope. So here's my story:

I was diagnosed in January of 2013 following a 10 day stay at Kaiser hospital in Honolulu. I was admitted to the hospital straight from a visit to the E.R. on December 24, 1012. I was told later that no one in the E.R. had expected me to survive the night. At the time, I was diagnosed with a massive systemic infection.

I did survive that night, but was then diagnosed with very advanced chromosome 17p del, kappa light chain IgG myeloma with lytic bone lesions so severe that my hip bones and spine X-rays revealed what looked more like Swiss cheese than bones and I had gone from 165 lbs to 128-- I looked like skin and bones. Again (so I was later informed) no one expected me to live, but, again, I did survive.

Despite the severity of my condition, my hem / onc put me on VRD [Velcade, Revlimid, dexamethasone]. Much to everyone's surprise, including my own, I improved - dramatically! In May of 2013 I got a stem cell transplant [SCT] at City of Hope in California. Yes, it was a grueling ordeal, those that claim otherwise appear to be an extreme minority

When I returned to Honolulu my doctor decided, following much debate and research, to put me on only Velcade + dex (actually, he wanted to put me on bone meds, but my reactions to these were so awful that we decided against it). The Velcade + dex alone was the recommendation of my doctor at City of Hope. She had a clinical trial result from some time she had spent in Europe that indicated this was the best protocol for 17p del myeloma patients, this despite our conventional VRD routine here in the U.S. Bear in mind this was only for 17p del patients.

I had had a VGPR to the SCT. Following my return to Honolulu and a few months of Velcade + dex, my numbers had all improved enough that my doctor suggested we consider going off both. For a doctor with a mostly conventional approach to myeloma treatment, he did some very unconventional things with my protocol, all with my absolute agreement by the way.

This is almost the end of August. I've been off all myeloma meds for about one year and my numbers continue to be great. Yes, my RBC and energy levels may never return to normal, but other than that, my numbers are miraculously close to that of a healthy person. I consider myself a hopeful realist. Could my symptoms return tomorrow? Obviously they could, but so far so good.

As to the topic of the debate in the thread where this was originally posted ("Stopping Revlimid," discussion started August 28, 2014), I had no Revlimid since pre-transplant and no Velcade or dex for almost a year. I had no reservations whatsoever about discontinuing them. Can I recommend this course for others? Again, obviously not, but, in my unique case it seems to working well.

One last note here that I am hesitant to mention but it has been important to me. Despite the fact that my hem/onc had told me initially that he knew nothing about alternative approaches, he was not opposes to them. Following extensive research by myself, and at least initially, mostly my wife, we decided that curcumin held the most promise. Oddly, although my doctor had told me to eliminate antioxidants from my diet while I was being treated -- the premise being that antioxidants not only support healthy cells, but cancerous ones as well -- he was a big advocate of vitamin D (this seems to be a fairly universal contradiction) and curcumin.

I chose the curcumin products that contain BCM-95 because curcumin is poorly absorbed, and even more poorly retained by the body. I think they have helped immensely with the bone pain. Can I credit curcumin with my seemingly miraculous results? Well no. This is clearly the very definition of anecdotal! Still, even if it's just placebo, it gives my mind a cause for hope.

Aloha to all
DanielR

[Debbie W]

Re: Aloha from Daniel in Honolulu

by Debbie W on Sun Aug 31, 2014 1:13 am

Thank you Daniel for your story. What is a VGPR and I would love to hear what unconventional things you tried. I am so happy you are doing great without further meds!