Networking

A few years ago, I did some software consulting with Novartis Oncology.  A colleague from my company, who became a good friend, has subsequently taken a job at Novartis.  Coincidentally, she also has a brother who is an oncologist at Dana Farber Cancer Institute.  I asked her if she'd see if her brother has any insights into the disease, and also if he could find out who some of the experts are.  In particular, he may have information about Steven Treon (mentioned in previous posts), who's also at Dana Farber.


She also made the excellent suggestion that I search the Novartis web sites for information about the disease.  So far, I've found about a dozen pages under novartisoncology.com - more on those later when I have a chance to browse through them.  I'll do the same kinds of searches at other pharmas to see what info they have, and to get more clues about who the experts are.

That was quick!

As previously posted, it looks like Steven Treon might be one of the "top" specialists in Waldenström's Macroglobulinemia.  (It's starting to get easier to type that word - some "muscle memory" is developing.)  He already responded to the email I sent him last night; here's what he said:

We see folks from NJ all the time, so happy to see you. Best for you to call our new patient admin, Karin Anderson (617 632 3823) to arrange for an appointment.  I will cc: her on here too.

With best regards,

Steve Treon

I want to do a little more research first, and need to understand the insurance situation, but I'm pretty sure I'll go visit him.  It's about 4 1/2 hours away, but we're dealing with an incurable disease.

Ongoing question list

I'm going to use this post to collect questions for the hematologist.  First, here's a list from the American Cancer Society:

• Do you recommend starting treatment now or waiting until later on?
• What options do I have for treatment of my Waldenstrom macroglobulinemia?
• What options do I have for reducing symptoms of my Waldenstrom macroglobulinemia?
• Which chemotherapy drugs do you recommend? Would you compare their effectiveness and side effects to others?
• Are biologic therapies or stem cell transplantation an option in my situation?
• What side effects can I expect from my treatment?
• What should I do to be ready for treatment?
• Should I get a second opinion?
• How long will it take me to recover from treatment?
• When can I go back to work or resume other activities after treatment?
• What are the chances that my cancer will recur?
• How long do you think I'll survive?

Now, here is my (growing) list:

• Who are the experts on this disease?
• Is Rituxan a "biologic therapy"?
• Should I consider taking part in a clinical trial?
• There seems to be some research indicating that apoptosis (cell self-death) therapies exist.  What can you tell me about them?
• What are the "important" blood numbers?  In particular, what are my Immunoglobulin-M (IgM) and red blood cell count (RBC)?  What's the difference between the hemoglobin (HGB) measure and RBC count?

Getting Diagnosed

Well, I was found anemic while in the hospital about a year ago for a heart procedure. Over the last year, I've had various blood tests and a colonoscopy to try to figure out where those red blood cells are going. Finally, about a month ago, my primary care physician noticed some abnormal protein levels in my blood. She sent me to a hematologist.

The hematologist ordered a bone scan, a bone density evaluation, a bone marrow biopsy, and more blood work, and ultimately diagnosed Waldenström's Macroglobulinemia. This was, in a way, good news; the initial indications could have meant multiple myeloma, which is an incurable blood cancer that killed my mother. What he didn't say was that it's a form of cancer. He told me that treatment would include an agent called Rituxan as well as chemotherapy, but he didn't use the "C" word.

Subsequent research on the Internet (cancer.gov, cancer.org, wikipedia) revealed that it's a very rare cancer - only about 1500 cases diagnosed per year in the US. Yikes, it's cancer. Incurable cancer. Average age of diagnosis is 63 years old, and average survival is 5-7 years. That sure scared me - but then I also read at iwmf.com (International Waldenström's Macroglobulinemia Foundation) that one is more likely to die WITH the disease than OF the disease. I'm still not sure what all this means. I'll be seeing the hematologist again in a few weeks, and will have a lot of questions for him.

Fortunately, it's a slow-moving (indolent) disease, and one doesn't have to jump right into treatment. This gives me some time to research it, understand it better, and prepare my questions for the next visit.

Meanwhile, given the rarity of the disease, I'm going to get a second opinion, and from someone who has as much experience as possible with it. My hematologist said that he sees a case about every six months, but I've got my doubts. If there are only 1500 per year in the country, that's about 30 per state, and he sees 2 of them? I guess it's possible, but it seems like more than his share. In any case, if he does see only 2 per year, he can't be that much of an expert on it.

The first place I looked for an expert was Memorial Sloan Kettering ("the best cancer care anywhere"). Surprisingly, they had only one doctor who listed it as a specialty. Eventually, I found Dr. Richard Furman, who heads a research center at Weill-Cornell Medical Center, and Dr. Steven Treon, at Dana Farber Cancer Institute in Boston. Treon is the Director of the Bing Center for Waldenström’s Research and an attending physician for medical oncology, at Dana-Farber Cancer Institute and Brigham and Women’s Hospital, in Boston, Massachusetts. He's got his own web site with the banner "Dedicated to the Discovery of the Cause and Cure of Waldenström’s Macroglobulinemia". I sent him an email (through a "Contact Me" link on his site) asking if he could recommend a specialist in my area, or if he could perhaps supervise my care from afar.