Monday, July 30, 2007

You're The Reason!

I've often been asked - by people who never had cancer - why I continue to "let" lymphoma remain a big part of my life. Today I'll explain why.

In my last entry, I mentioned that RIT rescued me in the nick of time, after all else failed, and that I was treated by Dr. Mark Kaminski, who developed Bexxar, one of the two RIT drugs. There is a tremendous level of comfort when you are being treated by one of the leading lymphoma experts, and as I have often said, and will always believe, I was incredibly lucky to be at the right place at the right time.

After my book was published and I began to hear from other patients, I slowly began to realize that not everyone is so lucky. Coincidentally, just yesterday, The New York Times published an excellent article entitled "Cancer Patients, Lost in A Maze of Uneven Care," and it's definitely worth reading. Here's the link:
http://www.nytimes.com/2007/07/29/health/29Cancer.html?th&emc=th

As I heard from more and more lymphoma patients, I also began to wonder why so few were offered RIT as an option. Mort and I wrote extensively about this issue in our previous blog, and the New York Times published an excellent article about it just two weeks ago.

While I heard from many patients who continued to undergo lengthy and sometimes invasive procedures without knowing that they may have other options, I also knew that there is a large and growing group of people like me who are living normal, healthy lives because we were the beneficiaries of new and better treatments and because we have doctors who employ the most advanced treatments medical science has to offer. All patients, present and future, deserve the same chance that we have, and it is for them that my commitment to raising awareness of lymphoma and its treatment options have only increased with time.

And so you are the reason I will always "let" lymphoma be a part of my life. I would not have chosen to have disease, but connecting with so many of you has been gratifying and humbling, and you continually provide strength and inspiration and the fuel for my commitment. In turn, I hope that in some small way you find some support and encouragement as well as practical suggestions.

Happy Monday to all!

Betsy

Thursday, July 26, 2007

A Little History

To give you all a little background, I was diagnosed with follicular lymphoma, Stage IV, in January 2002. Like everyone else who hears the word "cancer," my husband Alex and I were shocked and stunned. In the split second that it took for a doctor to utter the words, "You have lymphoma," life as we knew it ceased. Cancer plunged us headlong into unfamiliar territory without a compass or a map, much less the time to get our bearings. It cast us into a world of language we often didn't understand, compelled us to trust my life to total strangers, and forced us to make choices without our fully understanding the consequences. I've often had more time to find the perfect pair of shoes to match an outfit!

Fortunately, we live in Ann Arbor and happened to land at the University of Michigan in the hands of one of the top lymphoma experts in the world, Dr. Mark Kaminski, the developer of Bexxar, but we didn't know who he was at the time. Much later we would realize that I was incredibly lucky to be at the right place at the right time.

But back then, Bexxar and Zevalin, the two radioimmunotherapy drugs, were both under FDA review. At the time, I would learn that there was no cure for my type of lymphoma. Chemotherapy generally slowed the disease but it always came back. Remission periods varied from patient to patient, but each subsequent relapse would require stronger drugs until eventually no options remained. That wasn't exactly the future I had envisioned.

I started out in a clinical trial in which I would take 8 rounds of CVP followed by a vaccine six months later if I stayed in remission that long. I quickly failed that trial. After two rounds of CVP, it was clear my disease was not responding. R-CHOP came next, but after five of the planned eight rounds, my disease came roaring back.

But chemo did a lot of things it was expected to do. It deprived me of my hair, helped me to forget what day it was, gave me various infections, pneumonia, tumor lysis syndrome, complete exhaustion, and a couple of spontaneous vacations in Hotel Hell, otherwise known as the hospital. On the bright, it bought what I needed most - time.

For eight long months, I'd been fighting the battle, and lymphoma was clearly winning. Bexxar was still under FDA review, but Zevalin had received approval and Dr. Kaminski wasted no time making the arrangements for me to get it.

Early on September 11, 2002, Alex and I headed to the hospital for what we hoped would save my life. As we drove and listened to the news on the radio, the contrast couldn't have been greater. It was the first anniversary of 9/11, and I couldn't help but think that any one of the people who had died that horrible day would probably have traded with me for that extra year, even if it meant they had to have lymphoma.

Zevalin worked. Six weeks after the treatment, my scans showed no evidence of disease, and there has been no sign since of the ugly beast that tried to claim my life. It's been nearly five years since RIT rescued me after all else failed, and my life has taken a direction I never dreamed that it would. I wrote a book, co-wrote the blog with Mort, now write this one, and have become very vocal that cancer patients deserve to know all their options, including RIT.

Will write more about that on Monday. For now, I hope all of you have a wonderful weekend!

Betsy

Monday, July 23, 2007

Welcome

Welcome to our new home - yours and mine. As many of you know, Mort Diamond and I co-wrote a blog at http://www.lymphomainnovations.com until this week when the grant which supported it on Healthology's website was not renewed. I'm told that the site will stay up so that you can refer back to it should you wish.

For more than a year, Mort and I wrote extensively about our experiences with lymphoma and the two drugs, Bexxar and Zevalin, which belong to a relatively new class of medicine called radioimmunotherapy (RIT), which saved both our lives, but which have been slow to find acceptance in the medical community. Many of our readers shared their personal stories with us and told us how helpful it was to communicate with others who had experienced the same illness. Connecting with so many of our fellow patients was deeply meaningful for Mort and me, and we simply couldn't abandon the hundreds of readers who regularly read our previous blog.

And so I frantically searched for a new home this past weekend which was not an easy task. Despite all the drugs I took during my illness, not a single one improved my technical skills, a side effect I would have gladly welcomed. Alas, I remain technically challenged but with help, managed to get this site up and running. For now, it's in my name, although I suspect that Mort will weigh in with his valuable comments. We'll figure that out in the coming days and weeks. In the meantime, I assure all of you that we are still here - and as always, we invite you to share your comments, questions or concerns.

Whew! Like all moves, this one was hectic. I'm just glad there was a way to stay connected with all of you and I look forward to hearing from you.

Betsy