The MMRF and Kathy Giusti

I'll use a full name, not initials, for this remarkable woman.

The previous day, before I was going to see Dr. ML, PinnacleCare had connected me with the COO of the Multiple Myeloma Research Foundation, a non-profit dedicated to advancing research (as its name implies). Among its many achievements, I soon learned, was formation of the Multiple Myeloma Research Consortium, a group of 15 affiliated cancer centers (including City of Hope) that are linked together in clinical trials and research-sharing. Through the work of the MMRC and MMRF, work on Velcade was significant advanced.

I had been allowed to participate in a conference call wherein Dr. SJ, one of the people I was intent on seeing, would be the keynote speaker and there would be a summary of the reports given at the just-concluded hematological conference that seemingly every oncologist in the myeloma field had recently attended.

During the conference call, the woman who founded this organization was introduced. Her name is Kathy Giusti and she, like myself, is a graduate of the Harvard Business School. She was diagnosed with Multiple Myeloma at the age of 36, about 12-13 years ago. Hers was smoldering for about eight years before it progressed to Stage 1, where mine is now. She left her career in the pharmaceutical industry and formed the MMRF, which she has led since its inception. It was mentioned that she was going to be profiled that evening on CNN in a piece on several Harvard Business School graduates of prominence, which she noted humbly was great exposure for the foundation and the work they were doing.

The call was very uplifting, and focused on the development of several next generation drugs (a better version of Revlimid and a better version of Velcade are both in Phase III Clinical Trials and likely to be approved in the next 2-3 years), as well as two entirely new classes of drugs -- one is called HDAC inhibitors which block gene expression and ultimately cell growth, and the other have to do with interleukin. Both are promising, if a bit farther out.

The best part of the call was Dr. SJ's "keynote" section where he discussed the research and also his personal belief that there will be a cure found in the lifetime of newly diagnosed patients. This, in stark contrast to what we heard from Dr. ML the day before, was what I needed to hear at that point in time. I'm not being a Pollyanna about this, obviously, but there's a spectrum of opinion and it was good to hear from somebody on the optimistic end of that. I made a mental note that no matter what, I had to consult with Dr. SJ.

Shortly after the call ended, Kathy Giusti called me. She'd been given my information by her COO, with whom I'd spoken a couple of days before. She and I spoke for ninety minutes, during which time she told me all about her own situation. She has a potentially much worse strain of the disease than I do -- she has chromosome 13 deletion and 4;14 translocation (a couple of genes are mixed up), both of which are indicative of much worse outcomes. The fact that she was still around was a good sign. She went through SCT about 18 months ago, so I asked her about that. She told me there are a lot of things that doctors won't tell you: (a) the side-effects of the drugs, particularly dexamethazone, are much worse than they let on, and (b) one's immune system is never the same again. She gets sick all the time, she told me.

This is a pity...but given the alternative, I'll take the treatment. Nonetheless, it did introduce a new question and consideration: what is the post-transplant "maintenance" therapy to be? Could it be something relatively mild, as in Kathy's case (she takes 10mg of Revlamid daily), or would I be expected to stay on Velcade and Revlamid and Dex for three years, as is the case in Dr. BB's protocol. Kathy knew all these doctors and had good things to say about Dr. SF at City of Hope, Dr. KA (who PinnacleCare suggested I see) and Dr. SJ, obviously. She seemed to indicate that some doctors (among them KA) were inclined to look at novel drugs rather than transplant as the right approach, and that a single transplant (were I to go that route) would be considered aggressive treatment. She didn't advise me against this at all...it was more to draw contrast against the tandem transplant treatment.

We discussed meeting when she was next in Los Angeles (the week of January 26th), or if not, then when I am in New York to see Dr. SJ.

Although I was saddened to hear about the realities of side-effects and the notion of maintenance therapy being a much bigger deal than I had first envisioned, both the conference call and the ensuing conversation with Kathy were great confidence builders that I can and will beat this.

I didn't watch the CNN special, but I had at least three people including my assistant speak with me the next day about it and this remarkable woman Kathy Giusti -- I was very proud to tell them I'd spent ninety minutes on the phone with her the previous day.

If nothing else, I am confident I am in touch with and in the case of the very best and brightest in the field, and that's an important confidence builder.