Here is Part Two of Danny Parker’s introduction to using supplements and complimentary medicine while battling multiple myeloma:
So, back to the fundamental question. Could diet, supplements and exercise play a role in the slowing of progression of the disease?
And to answer several questions before they arise. No, I am not an advocate of homeopathy or naturopathy and I would never counsel any of you to depend solely on “alternative medicine.” One has only to look at the legacy of Steve Jobs in this regard; he delayed surgery for nine critical months while experimenting with alternatives– a delay which he would later regret. I prefer the idea of complimentary medicine. Just what is that?
Here it is: I have most faith in the treatments that have been developed within modern medicine and borne out by clinical trials; Lenalidomide (Revlimid) and Bortezomib (Velcade) have made an enormous difference in our prospects. Statistically significant differences on the Meier-Kaplan plots. But what if we could salt the sauce? Make something effective, ever so slightly more effective? (And avoid things that might reduce their effectiveness).
My doctor, Jeff Wolf, is a hard-line guy and I fall more into his camp than others. When we first met and I got the dreaded news about my diagnosis, he was forthright on his treatment philosophy. “I am not interested in stalling this disease,” he told me, “I am interested in home runs– swinging for the fences.” And while the ideas in the control camp (eloquently exemplified by Dr. Vincent Rajkumar) are appealing to part of me (hey, these chemotherapy agents are hell on your sleeping schedule, skin and digestive system), finding myself in the dreaded hi-risk camp has turned me away from that approach.
But back to our subject: a multi-armed long-term statistical study could be set up to help answer these questions with the standard statistical tools (again I spare you the details).
Anyway, what if we had a fund from patients, caregivers and loved ones to fund such a study through the IMF? We could track groups of patients in the various arms though both conventional and newly available treatments and potentially look for interactions. We might find nothing, but I am willing to bet we would not come up empty handed.
I am just thinking, but these are not idle thoughts.
In the future, I’ll share with you what I’m doing in this regard for my own situation. Since we don’t have information available on these things now, and the remission clock is ticking, waiting around for answers doesn’t seem the prudent option. But neither does shooting in the dark.
And speaking of that, I have many sides; my favorite current video for the season features the astonishing photography of Louie Schwarzberg and narration in the later segment by my wonderful Benedictine monk friend, David Steindl Rast (www.gratefulness.org). A little gift for your attention:
Let’s explore a bit together and enjoy. That’s what the season’s about.
Pass the dressing…and the cranberries. A walk later?
Danny, thanks for introducing yourself and provided us with some much needed background and insight into your frame of reference. I can’t wait for your next installment, featuring some specific do’s and don’ts about which supplements to use–and avoid–when using Velcade and/or other anti-myeloma therapies.
Feel good and keep smiling! Pat