I want to preface my comments by admitting I don’t know enough about the program to give more than my initial reactions to the program. I also want to take this opportunity to thank Nick van Dyk for his willingness to take the time to give us an outline of the therapy plan – his therapy plan – which is working, by the way. We realized early-on we were on opposite sides of this multiple myeloma therapy debate. Yet, unlike most of our politicians these days, we have been able to concentrate on our similarities, not just look at the differences. We e-mail back and forth several times daily. He is a help and inspiration to my writing, and I will be including an added chapter about him and Total Therapy when I revise my book, Living with Multiple Myeloma, early next year.
Now, on to my thoughts about Total Therapy. Yesterday I asked Nick why this therapy only works for newly diagnosed patients. “Shouldn’t it also be effective for someone like me,” I asked? Here was his response:
“As for why Total Therapy doesn’t work so well on recurrent Myeloma, the key element of the entire theory behind it is that the Myeloma must not have developed drug resistance to any of the components of therapy. You’ve got one bite at the apple to hit the Myeloma with the whole armamentarium — the Myeloma doesn’t know what’s coming and if it tries to go down a path to get away from the Thalidomide, the Velcade is waiting there for it — if it tries to end-run the Velcade, the Adriamycin is there for it — if it tries to end-run that, the Melphalan is there, etc. Since you can’t cure it unless you get rid of the progenitor cell, you can’t take the risk of allowing any of the cells to escape the therapy and if any of them have learned a pathway around all this stuff, it won’t work.
Barlogie and company are working on lots of things for other myeloma — newly-diagnosed patients are only about 30-40% of their total. But I haven’t seen data that supports their methods are any more successful than others — all the outcomes are pretty dismal for people with aggressively recurring disease.
Thanks again for your support, my friend!”
As you can see, this reminds of of the core goal of the Total Therapy program. Hit the myeloma with everything you have up-front, tandem transplant, maintenance therapy for three years thereafter. Hit it hard, don’t let up, crush it, it is gone never to return. I described the program to my wife, Pattie, this morning. Her immediate response was, “Nick is only 41 years old. His body can withstand a lot more than an older, sicker person.” True. She went on to say, “But what are the long term effects of all that medication, and two transplants on his body? Isn’t that risky as well?” That, in a nutshell, is my initial reaction as well. I discussed this with Nick and he feels the risk is worth the reward of a cure. Trouble is, there isn’t much data, other than from the medical center and doc pushing the program, to back up the end result of true remission and hopefully a cure. So for me, this is the question a newly diagnosed myeloma patient needs to ask themselves before they decide to try something like Total Therapy, or a watch and wait approach, or something in-between: Is the initial discomfort, pain, inconvenience (after all, it is difficult to work for the year you are undergoing tandem transplants, for example) and risk (3-5% of stem cell transplant patients die from the procedure. Many more suffer serious complications)to achieve a result that is, thus far, un-varifiable? Hey Nick, I’m not bashing the program – and it’s working for you. As a matter of fact, knowing what I know now, the thought of an aggressive, all out attack on my cancer is appealing. That is, had I known enough about it at the time to sign-on early enough as to maximize the effectiveness. But then again, knowing what I know now might give me even more pause: With so many new, novel agents being tested and approved at a record rate for the treatment of mylema, Pattie and I developed our own, specific plan for long term survival. Stall. Stick and move. Avoid my first transplant for as long as possible (hopefully forever!) Try to keep my body strong enough to withstand years of more conservative therapy and dosing until a cure, or new, less caustic chemotherapy agents are developed. As you can see, Nick and I are at two opposite ends of the multiple myeloma treatment continuum. The great news: WE ARE BOTH DOING GREAT! More about this tomorrow, including a discussion about those of our fellow myeloma patients that aren’t so lucky – that aren’t doing as well.
Feel good and keep smiling, my friends! Pat