Targeted Information for
Patients With
Non-Hodgkins Lymphoma
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| January 2007 »
I wish all my lymphoma "family" a promising and healthy New Year.
Betsy and I have attempted, with enthusiasm and optimism, to educate lymphoma patients about the potential benefits of radioimmunotherapy (RIT). We are living, and very healthy, examples of the healing power of RIT. Both of us had lymphoma invading virtually every organ of our bodies and now, thankfully, not the slightest hint of cancer.
I urge you all to have a single New Year's resolution: Promise yourself to have a consultation with a physician experienced in RIT---a radiation oncologist or a nuclear medicine physician---if you have recurrent non-Hodgkin's lymphoma. Find out if RIT is an option for you before you commit yourself to recurrent cycles of chemotherapy or maintenance Rituxan.
Mort
This past week, readers have made comments and asked questions about chemotherapy. The comments included how difficult it was to take. Boy, can I relate to that! Another reader mentioned that her husband can never take chemotherapy again due to the complications that it caused. Yes, chemo can cause several different complications, many of which I endured, although none of mine were permanent.
Finally, another reader mentioned that her oncologist is recommending chemotherapy and she wonders if a consultation with a radiation oncologist would be appropriate before signing on to months of treatment. Like Mort, I would personally never agree to additional chemotherapy prior to finding out I were a candidate for RIT.
As this year draws to a close, I can't help but give RIT credit for giving me another year which at one time I didn't think I'd ever have. It's been a wonderful year from beginning to end. Talking with patients about RIT has taken me from one end of the country to the other, and Alex and I have thoroughly enjoyed those trips. Mostly, though, we've been here at home, working hard to overcome the effects of Michigan's economic woes on our homebuilding business. Like anyone in business, we worry, but our concerns are more than offset by the sheer joy of being alive and by the gratitude we feel for the second chance we were given to continue our life together. RIT gave us that.
Betsy
In the past two weeks I have received many (they are all welcome) questions from blog readers. What impresses me is the sophistication of those asking the questions.
No longer are the questions simply, "What is radioimmunotherapy?".
Now, the questions start with a preface. "I have relapsed non-Hodgkin's lymphoma. I have received Rituxan-Chop followed, months later, by further cycles of Rituxan. Now, my oncologist wants me to have a stem-cell transplant. He did not even mention radioimmunotherapy (RIT) to me. I feel something is wrong, so I am contacting you. Wouldn't you agree that RIT may be an appropriate option for me?"
Absolutely, yes, RIT may well be a most appropriate option.
Congratulations to you, the patient, for gaining sophistication.
Mort
December is such a busy time of year. While it's a time to celebrate with family and friends, it's also an opportunity to take a little quiet time to reflect on the people who have enriched our lives. It is true that I have a wonderful family and many friends who have enriched my life in ways that words could not express, but all of you have played a part in that enrichment as well. We may not have met. We may not have even talked, but if your life has ever been touched by lymphoma in any way, then we share a common thread and - I believe - understand certain things about one another that even our best friends can't.
But this morning, let us not think of NHL. We'll come back to that subject after the holidays.
For now, let me simply wish each of you the happiest of holidays. May peace live in your hearts and in the world. May you find joy throughout these holidays as well as during the coming year. And most especially, may all of you be restored to good health.
Merry Christmas and Belated Happy Hannukah,
Betsy
Please forgive me for waxing philosophic.
I was musing last night. Radioimmunotherapy has given me "another chance". Another chance at life. There I was, in December 2002, having just been told of incurable Stage IV non-Hodgkin's lymphoma. Now, four years later, after having received RIT, I am robustly healthy.
I have been blessed with another chance to enjoy my family, to enjoy the sweetness of life (despite its vicissitudes and frailty), to be productive and, above all, to help others.
"Another chance" is the basis of my continuing, vigorous efforts to educate fellow patients about the value of radioimmunotherapy.
Mort
Mort writes of our having dinner and indeed, it was a pleasure to sit with him and his lovely wife for a quiet evening. At last we had the opportunity to meet face to face and to talk about our mutual interests. Let me say first that Mort and I met by phone, when we were first asked to participate in this blog. We met in person briefly last October during the RIT conference that he chaired in Hollywood, Florida, but that was a busy day and we had little time to talk one on one. Finally, last week, we had the time to talk over a leisurely dinner.
All told, Mort and I have "known" each other for about 7 months, but I feel as if we have known each other far longer than that. Our illness - no, I should say, our recovery - brought us together, and from the moment we met, I have known that he was a passionate patient ally. But if you believe, as I do, that the eyes are the windows to the soul, then to see Mort's eyes is to see the deep and abiding compassion for all of us who have been affected by this disease. As a cardiologist, Mort spent his entire career helping others, and now the doctor turned patient brings this unique perspective to helping those who share our common enemy - NHL.
One of the topics we discussed was how pleased we are that so many of you are learning about RIT and asking if this treatment is appropriate for you. We are all fighting a big bureacratic battle to increase usage of this treatment. While careful studies have shown that RIT is the most effective treatment given in the shortest amount of time, frankly, radioimmunotherapy is underutilized because oncologists must refer their patients to nuclear medicine physicians or to radiation oncologists who then administer it. They are not reiumbursed when they refer their patients to these other physicians. Additionally, in order for them to refer their patients, the Nuclear Regulatory Commission has placed nearly impossible requirements for licensing.
Both Bexxar and Zevalin are multi-disciplinary drugs, meaning that their administration requires collaboration between oncologists and nuclear medicine physicians or radiation oncologists. Until the requirements for licensing and the system of reiumbursement is changed, it is unlikely and unfortunate that the use of RIT will be widespread, regardless of how beneficial it may be for patients.
This is not the first time in medical history that patient welfare is at odds with "the system," and it means that we as patients are the only ones who can determine whether RIT is right for us or not, and that requires finding a doctor who is experienced in RIT and who does use this life-saving treatment. "The system" has placed this demand on us, as patients, the very people who don't need additional stress!
I think I can speak for Mort as well as myself when I say that we are pleased to hear you asking questions about RIT. We are pleased that you are trying to find doctors who administer it. We are pleased because we honestly believe that RIT is an important, even life-saving, treatment that can benefit far more people, and it is our goal to share whatever knowledge we have so that you have the best possible chance of making the right decision for yourself.
Betsy
A few days ago, Betsy came from Michigan to south Florida for a visit. My wife, Louise, and I had the pleasure of having dinner with her.
I was in the company of two beautiful women. Louise is the essence of grace, love and a sincere interest in helping others. During the treatment phase of my lymphoma, she was the proverbial "rock"--steadfastly positive and full of good cheer.
Betsy, my blog companion and fellow RIT recipient, is full of enthusiasm, commitment and discipline. While she is bubbly and engaging and funny, what stands out is her drive to educate others about the value of RIT. She is indefatigable.
It was a wonderful dinner.
Mort
Since Alex and I live in Ann Arbor, we have met several researchers for a variety of diseases. We recently attended a dinner at which we sat next to a cancer researcher, and our conversation inspired me to share a thought about these people that most of us never see or meet.
While physicians conduct research, they often conduct it with people who never see patients. They’re the ones who sit in labs day after day, month after month, year after year hoping to unlock the many mysteries of our various illnesses. They’re the ones who can not only pronounce 36-syllable words but who also understand their meaning! Yes, they have brilliant minds, but the ones I've met also have great passion as well as compassion. They're all too aware that people’s live depend on their work.
I wish that words could describe the fire in their eyes when they talk about their work so that you could see what I have seen – the dedication and commitment of people who don’t give up when they reach a roadblock. Instead, they strive to find a way around it, over it or under it, and their persistence has already given us more gentle, more effective treatments for a variety of illnesses.
These wonderful people are perfectly content to work behind the scenes. They are our invisible team, working tirelessly to help us all. They’ve made enormous progress in recent years and their work has given many of us the precious gift of time. And every time I meet a physician, a researcher, a lab assistant or anyone else who's involved in research, I realize even more that none of us is alone in this fight. We have many allies, most of whom we will never meet – but they are powerful, committed, and dedicated to helping each and every one of us.
Betsy
I am impressed with the number of comments from blog readers that I receive. And their numbers keep increasing, for which I am delighted.
It seems to me that the blog entries of Betsy and myself are effecting a change in the attitude and thinking of blog readers. Initially, blog readers were asking the important questions, "What is radioimmunotherapy?", "What are the adverse effects of RIT?" and "Which non-Hodgkin's lymphoma patients seem to benefit most from RIT?".
Now, the questions are different. "Can you help me find a doctor in my area who administers RIT?". "A family member has newly diagnosed NHL. Can RIT be part of his initial therapy, rather than being given only for recurrent disease?".
The change in character of your questions is not merely interesting; it is a powerful message that NHL patients will, increasingly, be receiving radioimmunotherapy with excellent outcomes.
Mort
A reader who earlier has taken 8 rounds of Rituxan is currently taking it as maintenance therapy. She had no adverse reaction until just recently and wondered why this occurred after taking the drug several times. I don't know the answer. From what I understand, most adverse reactions occur during the first treatment. In fact, during my first Rituxan treatment, I experienced chills and fevers. The treatment had to be stopped while other drugs were given to counteract the reaction. Rituxan also made my eyes itch terribly during the entire time I took it. My contact lenses sat patiently in their case.
A doctor could perhaps answer the reader's question better than I. Another source may be Rituxan's website at www.rituxan.com.
In regard to maintenance therapy in general, no one, to my knowledge, has asked or answered what happens when Rituxan is no longer effective. Since it is part of the Zevalin treatment regimen, what will happen if patients no longer respond to Rituxan? Does that mean that Zevalin will not be an option? Given a choice between extended treatment, i.e., maintenance therapy, or a one week treatment with proven success, i.e., radioimmunotherapy, I personally would opt for the latter because I'm uncomfortable with the unanswered questions about the long term use of maintenance therapy.
Betsy
Having a malignant disease certainly opens new pathways. As a result of my having participated in an experimental clinical trial and, thereafter, having spoken to lymphoma patient groups, I have met many interesting people. We have a common bond---non-Hodgkin's lymphoma---and we have a common pursuit of finding the "best" therapy.
Today, one of my new friends who lives in the great state of Texas will be receiving his radioimmunotherapy dose in the form of Zevalin. We have had many conversations, both on the phone and in person, in which I have tried to clearly outline -every element of my disease course. I have spoken to him of my creed in attacking the NHL as hard and as early as possible, of my physical state during treatment (I received Rituxan and 3 courses of CHOP prior to radioimmunotherapy), my post-treatment blood studies and my present good health.
My friend, you will do great !
Mort
Mort has kindly written of my energy. I assure you that his exceeds mine. Why do we write blogs, talk to patients, etc., etc.? Because we know the anguish of a lymphoma diagnosis. Because we were spared by radioimmunotherapy. And because we know how much it helps to talk to others who have "been there and done that."
As I have said before, I am extremely lucky to live in Ann Arbor where I was treated by one of the world's foremost lymphoma experts. When I was diagnosed in 2002, neither Zevalin nor Bexxar had been approved. By the time of my second relapse during treatment, Zevalin had been FDA approved but it had not been approved for payment by insurers. Yet it was the best option available to save my life. Had I not been treated at the University of Michigan by experts who were intimately familiar with the latest and greatest treatments - and who went into overdrive to make the drug available - it is highly doubtful that I would be here today.
When nothing else worked, radioimmunotherapy rescued me and handed my life back to me. After months of chemotherapy and side effects, I was amazed by a treatment that was so easy to take and so effective against a disease that had proved resistant to everything else - and "amazed" is an understatement! If I could, I would shout from every rooftop, fly banners behind planes and drop fliers over every neighborhood in the world to let people know about this treatment.
But sometimes, a simple one on one conversation is just as effective. Sometimes we all need to talk to others who have walked in our shoes, not only to ask about treatments, but to share our fears and our successes. Mort and I understand that and we also know how lucky we were to have had such highly trained medical experts on our side. We are both honored and humbled to share our experiences with all of you, wherever you are, with the hope that you will be empowered by information and encouraged by our recovery.
Betsy
I have received my first blog comment from a lymphoma patient who lives in Canada. This is most pleasing to me, for the message of radioimmunotherapy (RIT) should not be a national message. Rather, it should be global.
I am in the process of trying to locate a physician experienced in RIT---either a radiation oncologist or a nuclear medicine physician---who is geographically close to this patient.
Blog readers are most welcome to write to me in this blog if you wish to learn the name of a RIT physician in your general area. Please tell me your location and I shall do my best to be of assistance to you.
I am convinced that it is our personal communication that will, ultimately, educate lymphoma patients of the efficacy of RIT.
Mort
Today is an exciting day for one of our readers - today he will take the full dose of RIT, and I want to let him know that my heart is with him. He joins a growing group of people who have an excellent chance of beating the beast with a very effective treatment. I expect that the first CT scan, approximately 6 weeks from now, will indicate how well the treatment is working - so please write us and let us know.
Another reader has asked when it is possible to stop worrying about recurrence or the need for maintenance therapy. There is no easy, one-size-fits-all answer to that question. I can only tell you my personal philosophy.
Cancer, like any other chronic illness, forces us to face our own vulnerability, and both during and after treatment, we can't help but wonder if it work and for how long. In many instances, the doctors can't give us 100% assurance because each of us is different, and that leaves us with insecurity and doubt - and how do we learn to live with that? The last chapter in my book (www.lymphomabook.com), entitled "Letting Go and Going On," discusses that issue at length and I'll share a quote which was written just two months after my last treatment:
"I asked myself if my future - or anyone's - comes with a guarantee. No, it doesn't. If I wondered about...undergoing future treatments, would worrying change the outcome? No. Would worrying today about things I can't control tomorrow make me miserable? Yes. And if I were miserable, wouldn't everyone around me be miserable, too? Yes. Did I want that? No. Could I set goals and work each day to reach them? Yes. Could I focus on each day and do one, maybe two or even three things to make someone else happy? Yes."
And shortly later, I wrote: "I quickly concluded that fear of future uncertainty could rob me of present joys. When fears crept in, I consciously fought to push them aside. I got busy at work. Called a friend. Took a walk. Listened to whatever music made me happy at the time. Baked a cake and gave it away. Called Alex and told him I loved him....I did whatever it took to banish the uncertainties at any given moment, and sometimes the effort was far more difficult than it had been during treatment. But the price of giving up was far too high."
And so I wish that I could easily answer our reader's question, but there is no one answer. Cancer takes us on a road where we find many helping hands, but there are some stretches where we simply must find our own way, and learning to cope with the uncertainty that cancer leaves in its wake is one of them.
Even today, more than four years after my last treatment, I believe that I am cured, but I still occasionally wonder what if? I think it's normal to have doubts, and today when they creep in, I consciously work to push them away. The fact is that I know there is no guarantee in life, but cancer made me realize that the outcome of my illness is far less important than the outcome of my life. What I choose to do each day is what really matters.
Betsy
With her exquisite ability to frame words, Betsy has expressed her optimism after having received radioimmunotherapy (RIT) and her refusal to allow worry to be a destructive force in her life.
Indeed, worry is a visitor that we lymphoma patients do not need to receive. Like Betsy, I am now 4 years free of non-Hodgkin's lymphoma after having received RIT. Like Betsy, I am full of bubbling optimism and I meet each day as if I am totally cured. Why not feel this way?
I feel great energy in ever trying to help fellow lymphoma patients. Participating in this blog, chairing a RIT meeting, responding to phone calls from total strangers who have lymphoma and somehow got my name and number---these are a few ways in which I can help.
I am confident that my efforts are helping others. This week 3 NHL patients will receive RIT, in large measure, I believe, as a result of my urging medical consultation with a radiation oncologist or nuclear medicine physician.
Do I have energy? Indeed, but it pales in comparison to that of Betsy de Parry.
Mort
Mark your calenders for Thursday, December 21. From 1:30 to 2:30, there will be a free telephone conference entitled "Update on Lymphoma Treatment From The 2006 American Society of Hematology (ASH) Annual Meeting." The subjects will include new research findings that were presented at ASH, how research influences treatment options, disease-specific treatment updates, and more. There will also be a question and answer period.
The speakers are Dr. Julie Vose, Chief of Oncology/Hematology at the University of Nebraska and Dr. Ajay Gopal, Assistant Professor, Division of Medical Oncology, University of Washington (Fred Hutchinson Cancer Research Center).
This should be a very informative workshop. To register, call 1-800-813-4673 or you may register online at www.cancercare.org.
Betsy
Betsy has written, in her beautifully expressive manner, of being a graduate. Graduate is a perfect word, for it holds the imperative that the lymphoma patient must gain knowledge, i.e., must be educated, in order to make the most comfortable decision about therapy.
One need not go leafing through pages of a medical text in order to become educated. One can gain considerable knowledge by talking to and asking questions of many physicians. This is why I have been urging patients to get a formal consultation with a physician experienced in RIT--a radiation oncologist or nuclear medicine physician.
Further, one can gain great information from contacting other patients. This is why Betsy and I are pleased to respond to your questions and comments.
There are many extant therapies for lymphoma---standard chemotherapy, external beam radiation, immunotherapy and radioimmunotherapy (RIT), to name a few. My personal opinion is that you should not accept continuing cycles of standard chemotherapy or immunotherapy (Rituxan) without the consultation on RIT.
Mort
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