I recieved the following e-mail from a cyber friend of mine, Nick Van Dyk, who is a 41 year old myeloma patient that has choosen a very aggressive therapy approach in an attempt to actually cure his multiple myeloma. Nick works with doctors in Little Rock, Arkansas. If you follow my blog you may have noticed I am very interested in the growing divergence of therapy philosophies between the Arkansas group and Mayo Clinic. The Arkansas group tends to be more aggressive, often using tandem stem cell transplants and lots of post-transplant maintenance therapy. Mayo seems to be more flexible in it’s treatment options, most often using a single transplant with little or no maintenance therapy afterwords. There is so much to cover here I won’t go into the details now. Instead, I would like you to read Nick’s e-mail and I will go into more detail and get you more contact information as the days go on. I e-mailed Nick yesterday to see if he would be interested in joining a group of us at our Patient Summit this November in Boston, sponsored by Millennium. I felt it would be a benefit to the group to have someone there who is using what Nick calls “Total Therapy.” Here is a copy of my e-mail and then his response:
If you read some of my blog posts from a month or so back you would have noted I sit on a new patient advisory board for Millennium (Now Takeda Oncology Company) in Boston. They are the ones that make Velcade. Anyway, Mellennium is hosting a patient summit in Boston November 4th thru 7th. Most of the patients are from the East Coast. There, several large cancer centers in Boston and North Carolina, like Mayo Clinic in Rochester, Minnesota, tend to be conservative in their view of myeloma therapy. Like we discussed, they feel it is to be controlled and, at least for now, can’t be cured. I also noticed my last visit that the Arkansas “branch” of the myeloma treatment tree was bashed a number of times. This is understandable. I must tell you some patients that go to Arkansas for treatment are very defensive, almost evangelical about that style of treatment. And I have met several docs that used to work there and they too tend to be on the outgoing, aggressive side. It all starts to rub others the wrong way. So I immediately thought about contacting you for some answers. You are very technical and thoughtful in your approach. You are also diplomatic and open to different perspectives. So I suggested you might be a good candidate to attend this summit! They pay for all transportation, meals and lodging. First class all the way, I might add! (Although you do fly coach to Boston) Might you be interested in attending? I think it is important to have all views represented at these brain-storming events. I found it incredibly helpful to network there. Let me know right away if you would like more info and I will have someone from the company contact you. Hope all is well! Pat
Pat, good to hear from you, and thank you VERY much for thinking of me.
I’m certainly intrigued by the notion of joining in. Therapy for Myeloma is a little like religion for me — I have my own position, and I respect others that make different choices, and I don’t feel the need to ram my position down the throats of others, but at the same time if it is challenged, I will be somewhat defensive about it. 🙂 Obviously, I chose Arkansas because I do believe that the disease can be cured in a large subset of patients. As far as I’m concerned, the data is irrefutable. The only question mark for me is whether the same patients would have done equally as well with a single transplant and Velcade, and my perspective on that was always “so what if I’ve done more than what was needed, I’d rather do too much than not enough.”
For those of us that signed up for Total Therapy, the view is pretty stark: do this and stand a good chance of being cured, do anything else and the best you can hope for is chronic disease for the foreseeable future and no option to go back and try to eradicate the disease with today’s medicine. For those doctors who think they can cure the disease, and those patients who believe they can be cured, their attitudes probably do take on a sense of urgency (if not outright messianism) about their approach. I try not to be quite so insistent — more diplomatic, as you say. 🙂
At any rate, if you think that my perspectives can add value I would love to learn more and I’m eager to help. I don’t want to tilt at windmills, though — if Total Therapy is considered a joke, I’m not likely to change that opinion.
Pretty confusing, eh? 🙂 Like I said, I’m intrigued so I’m giving you stream of consciousness. Let me know what you think!
I encourage all of you to visit Nick’s blog: Nick’s Myeloma Blog
In the meantime, I will be sharing more about Total Therapy and the tug-of-war currently developing between cancer centers specializing in treating multiple myeloma.
Feel good and keep smiling! Pat