Alan Holtzman felt that an angel was on his shoulder when a chance meeting with another CLL patient directed him to a leading specialist. Watch his story.
Why do I have lung cancer if I’ve never smoked? Dianne Stewart, a stage IV cancer patient, asked herself this question following her diagnosis. Hear about her initial stage of shock and denial and her advice for others.
February 20, 2014
Dear Tom (I am calling you that instead of “Mr. Brokaw” because, like millions of Americans, I feel like I know you personally),
I read that you have announced you have cancer, multiple myeloma, and that you and your doctors are optimistic. At 74, no one knows how much time they have left, but I am writing to tell you as a two-time cancer survivor myself, and a medical journalist who covers myeloma, that this is truly a “good time” to have this cancer. It was a lot tougher for your peer, Peter Jennings of ABC, who died of lung cancer in 2005. I know you interviewed him and I am sure it was tough for both of you. But we all need to understand that not all cancers are alike. While progress is being made on subtypes of lung cancer, progress and longer-term survival is much more broad in your condition. The odds are you will get to play with your grandchildren for a long time.
I, myself, was diagnosed with a leukemia, chronic lymphocytic leukemia (CLL), at age 45 in 1996. By connecting with other patients online, I was directed to world experts far from my home city, I entered a clinical trial, it worked, and I received breakthrough medicine ten years before FDA approval. The disease remains in deep remission today and I have enjoyed a full life. As a patient advocate, I was delighted to see that the news of your diagnosis was not described with the usual dark adjectives that usually accompany a story about a celebrity with cancer. The cancer story is changing. I am an example of that as are several million others – especially with blood cancers like yours where increasingly targeted therapies are being used to knock the disease back. Welcome to the world of “chronic cancer” where we can live with it and hopefully not die from it anytime soon.
The other good news is that new medicines are coming out at a more rapid rate. We discuss this in depth in the myeloma section of our website. The pharmaceutical companies fully understand that our population is aging and that cancer is more likely. So for years they’ve been investing in new drugs or buying up smaller biotech companies that have promising cancer science. Now those efforts are bearing fruit. So the treatment you get next year will probably be different than this year. You have joined us on a journey. But it’s not just a journey of patients. It’s a journey of the researchers and clinic doctors, as well. In my opinion, cancer history, at least for some cancers, is being re-written. This is not the same situation in myeloma that confronted Geraldine Ferraro or baseball’s Mel Stottlemyre. You get the benefit of medical progress and the prospect of even better treatments being there for you in the years to come.
None of this is to say cancer is easy. Anything but that. Whether you have the “good kind” or another more aggressive type, it’s a punch in the stomach. From all appearances you have picked yourself off the floor and not only gone on with your life, but, to your credit, gone public with your diagnosis. You are living proof that a cancer diagnosis does not equal death. I urge you to join us in speaking out. You have world renowned doctors at The Mayo Clinic, a leading center for myeloma research. But many patients have never heard of it or any other major center. Furthermore, they don’t know why their local oncologist may have gaps in their knowledge about this disease. Your message can be what we advocates and the leading experts know, in oncology today the pace of change in many conditions, and certainly this one, is rapid. A new patient must strive to get care or a consultation with a myeloma specialist. The treatments of six months ago may well be outdated. So I am hoping you, a newsman who has covered every imaginable story, can now cover cancer and speak out from a personal perspective.
Mr. Brokaw, this is your next assignment.
Yours in Cancer Survivorship,
Andrew Schorr, Barcelona
Very well said. We all have a chance and I am glad we live in the medical world today, where there are improved treatments daily. I look forward to a more positive spin from the news media than in the past!
Excellent letter! You raise many important points. I wish Mr. Brokaw the best in his upcoming journey and hope he takes your words to heart.
Andrew you said what all f us wanted to say “Speak about it Tom”! Don’t hide behind your disease.. Get it out there!! Just sayin……………
Thanks Andrew for reaching out to TB and for all you do at Patient Power.
Well said, Mr. Schorr. Your words resonate, especially as my virile friends from an earlier time age and the discussion of one’s health, not only creeps into our daily conversation, but also seems to monopolize it. Yet, all that talk seems shallow when one of those friends is stricken by a cancer. I do not mean shallow in the sense that it is somehow simplistic or unimportant. What I mean is that few of us seem to really know where to go, who to talk to, who to believe and what to do. The conversation is one of empathy, sympathy and often includes some anger and resentment at the impersonal nature of cancer and less about alternatives, choices and clarity. I know Patient Power endeavors to change that shallow conversation and imbue the discussion with possibilities. Tom Brokaw, like you and those you have enjoined to become involved can broaden the dialogue, open up doors and create opportunity. Tom, are you listening. I think you probably are. People trust your instincts and appreciate your candor. When you speak more will listen, more will act and take control of their destiny.
I, too, struggle with a rare cancer, polycythemia vera. I have never heard of any celebrity with this cancer and was hoping if a celebrity did announce that they had a rare form of cancer or blood disease, that they would become an advocate for all of us who do not have a forum in which to “spread the word” so to speak to raise awareness. With only 100,000 in the world with this, how can we get any drug company to concentrate on drugs for a cure when there are so few in the population who would benefit from a cure. I am hoping you will change your mind about making this a private thing for you and your family and will join with all of us with these rare diseases in getting the word out about what is happening and encourage people to help.
Thank you so much for that wonderful letter to Tom…I too have multiple myeloma..i am on 10 months recovery from my stem cell transplant at Dana Farber in Boston…I hear he wants privacy and understand but I have HOPE THAT HE WILL HELP US..His popularity can help us get funds for research..i know from my dr. in
boston that we are SOOOO CLOSE to a cure..Please help us get him to help us all..
That would be a wonderful legacy for all of us..will be following you..
thank you so much..♥
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