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Non-Hodgkins Lymphoma
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| December 2006 »
We are known as "survivors" from the day we are diagnosed. During my illness, that word never seemed appropriate but I was never certain why. It was simply not a good "fit" for me. Much later, after I recovered, I looked up "survivor" in a dictionary and found the definition to be "a person, plant or animal that remains alive; a thing that continues to exist." And therein lies the answer to why the term never fit.
Yes, I remained alive and continued to exist, but cancer sent me on an accelerated learning program. Suddenly, I paid attention to science, a subject which I had ignored my whole life, and I learned to appreciate how much scientific discoveries affect our daily lives. For me, cancer stripped away the things that are not important, and left me learning how to cherish those that are, and in the process, I learned to be more compassionate, more understanding, more forgiving, more patient, more appreciative.
And so I did so much more than "survive" cancer. I think of myself as a "graduate," a word that suggests going on to bigger and better things.
As bad as cancer is, if we can view it as an opportunity to expand our knowledge and to deepen our wisdom, then we all can become "graduates," a word that seems far more appropriate, at least to me.
Betsy
Betsy and I have worked very hard---and continue to work hard---to educate lymphoma patients of the value of radioimmunotherapy (RIT).
We have urged the non-Hodgkin's lymphoma patient to insist on obtaining a consultation with a radiation oncologist or nuclear medicine physician to learn whether RIT is appropriate for him or her. We have urged that this consultatilon take place before a decision has been made on therapy.
I am pleased to report that, just a few weeks after the RIT meeting that I chaired for physicians and patients, 3 patients are scheduled to receive RIT in the next 2 weeks. Additionally, several others have had appropriate RIT consultatlions and these patients are awaiting test results that will indicate whether RIT is indicated.
This is very good news.
Mort
As I mentioned in an earlier entry, oncologists do not administer RIT. Instead, they must refer their patients to nuclear medicine physicians or to radiation oncologists who do administer it, but by referring patients to these other physicians, they lose income that they would otherwise receive from treatment which is administered in their offices, namely chemotherapy and Rituxan. As if this weren't enough to discourage doctors from using RIT, oncologists must also take 300 hours of classroom training in order to be able to prescribe it - and how many oncologists have the equivalent of 7-1/2 forty-hour work weeks to devote to training on one treatment?
I'm at a loss to explain why this training is required for RIT since oncologists routinely refer patients for external beam radiation when that is appropriate.
Given the financial and training hurdles that oncologists face in using RIT, it's no wonder that it has not been widely embraced. All the studies in the world mean nothing if a drug does not fit into the business of medicine, and unfortunately for patients, we must remember that medicine is a for-profit business. Sad, but true.
In order for the countless patients who could benefit from RIT to do so, changes must be made to encourage doctors to use this very powerful, very effective drug. In the meantime, all we can do is to continue to seek doctors who do use it.
Betsy
Betsy's entry noted the superb results of Bexxar in front-line (or first-line) therapy of advanced non-Hodgkin's lymphoma. Front-line means that the patient has not received any prior treatment for the disease.
The experimental clinical study in which I participated in early 2003 included my having received Zevalin as front-line therapy of Stage IV, follicular NHL. Now, approximately 3 1/2 years after treatment, I am free of lymphoma based upon the most sophisticated imaging and blood studies.
How long---how long, will it take for radioimmunotherapy to assume its rightful place in the treatment of lymphoma?
Mort
While today is a day for eating too much and for gathering with our family and friends, it's also a day that we stop to give thanks, but I don't need a single day to do that. For me, every day is thanksgiving! I'm thankful that I'm still alive to share life with my wonderful husband. I'm thankful that I was given the opportunity to see my grandkids start school and to watch them grow. I'm thankful for all the other family and friends who mean so much to me. And the list of little things for which I am thankful is endless. Most of all, I am so thankful to be alive, thanks to radioimmunotherapy.
And so as we stop to cook our turkeys and bake our pies, I quietly smile and give thanks for another day with those I love the most.
I wish each of you a Happy Thanksgiving and many days ahead for giving thanks of your own.
Betsy
I have received a number of comments from blog readers in which they ask how they may find more information about radioimmunotherapy (RIT).
Of course, I remind you to carefully search this Lymphoma Innovations website: www.lymphomainnovations.com. There are two links that relate to RIT and offer valuable information.
Additionally, readers may go to: www.focusonrit.com/index.cfm.
I commend you, the readers, for your enquiries. It is through your education about RIT that you will then be able to make an intelligent decision about your lymphoma therapy. In my opinion, it is, lamentably, not enough to simply say to the oncologist, "I am in your hands".
As I have said repeatedly, before making your treatment decision, get a consulltation with a radiation oncologist or nuclear medicine physician concerning RIT.
Mort
In February 2005, The New England Journal of Medicine reported the results of a study which was which was funded by the National Cancer Institute, the National Institutes of Health and Corixa Corporation (which was bought by Glaxo Smith Kline). Researchers gave patients with advanced-stage follicular lymphoma one treatment of Bexxar. None of the patients had been treated with any other form of therapy. Ninety-five per cent had some response and seventy-five per cent had a complete response. After five years, more than three-fourths of patients with a complete response were disease free.
The results from this study are even more promising when compared to other studies using radioimmunotherapy after other therapies have failed. In those studies, seventy per cent of the patients responded to Bexxar with only twenty to thirty per cent achieving complete remission.
These results clearly show that radioimmunotherapy, which takes about one week to complete, is more promising when used earlier in treatment rather than later. With studies like these, I still cannot understand why radioimmunotherapy has not been widely embraced. There simply is nothing else available that has such a short treatment duration and is so easily tolerated - and so effective!
I can only suggest that you continue to ask your doctor about this treatment. If it is not included as a treatment option, an appropriate question would be "What are the chances of recurrence with the treatment plan you are recommending?" That's a question to which every patient deserves an answer before signing on to months of chemotherapy, Rituxan maintenance therapy, or worse, stem or bone marrow transplants.
Dont' ever be afraid to ask - your life may well depend on it!
Betsy
I am frankly perplexed why, after more than a decade of research study, radioimmunotherapy (RIT) is still considered by many medical oncologists to be a "new" therapy.
This is troubling to me. On the one hand, RIT is certainly not "new". But, more importantly, I fear that "new" may be used as the excuse for the patient having recurrent disease being advised to have serial chemotherapy treatments over months (or years) or to be placed on maintenance Rituxan---without the patient having the benefit of a consultation with a radiaiton oncologist or nuclear medicine physician, both having expertise in RIT.
Whenever you, the patient, are told by an oncologist that RIT is "new", I suggest that you respond, with caution, to the suggested therapy.
Mort
Mort and I have written (probably redundantly!) about the importance of becoming your own best advocate, and that includes questioning all the possible treatment options that may be available to you. As all of you know, there are many types of lymphoma - and there are many types of treatments that may be available but not offered. Sadly, radioimmunotherapy often falls into this category, and yet nothing has yet, to my knowledge, been proven to be more effective for follicular lymphoma.
Why is this? One of the main reasons seems to be that few oncologists are equipped to deliver radioimmunotherapy. They must refer their patients to nuclear medicine physicians or radiation oncologists who then administer the drug. On the other hand, most oncologists can easily administer chemotherapy or Rituxan.
It's no longer enough to accept any doctor's treatment recommendation without question. Too many new options are available and/or being studied in clinical trials, and it would be difficult for all but the most specialized doctors to keep up with all the new information.
So - don't worry about offending your doctor if you ask questions such as "Is there anything else that would be a better solution?" or "What else is currently available?" In the case of radioimmunotherapy, it is quite distressing to hear patients say that their doctors tell them it's too new. As I have said before, Bexxar and Zevalin have been studied for 16 and 13 years respectively - that ain't new, folks!
Betsy
On Nov. 1, I had the pleasure of being a participant in the Lymphoma Innovations program "On24", a webcast/teleconference on lymphoma. Dr. Owen O"Connor of Memorial Sloan Kettering Cancer Institute was the oncologist who responded to the probing questions of patients and caregivers.
On Dec. 15, I shall again have the opportunity to participate in another "On24" program on lymphoma. I urge blog readers to go to the website: www.lymphomainnovations.com for further information and for registry on the program.
An essential element in a lymphoma patient's confidence is information. Indeed, Lymphoma Innovations, the On24 program and, hopefully, blog entries by Betsy and myself contribute to a sense of confidence.
Mort
A blog reader has enquired about side effects that I noted after having received RIT in the form of Zevalin.
I did not have a single side effect---no headache, nausea, hair loss etc. Not a single adverse reaction.
In fact, I did not lose a single day of work after Zevalin treatment.
From speaking with others, I think it is fair to say that, in general, RIT is very well tolerated.
Mort
This entry is made in response to two questions from readers. The first wants to know if radioimmunotherapy is indicated for marginal zone lymphoma. To my knowledge, it has not been approved for such use. However, I checked the government's clinical trial site and there is a trial testing RIT for marginal zone. Since many drugs are used for purposes other than that for which they have been approved, the best advice I have is to discuss your case with an RIT expert. If there is a trial testing its use, the experts must believe that it holds promise.
The second question comes from a reader who experienced anaphylactic shock from Rituxan, and he wants to know if any advances have been made to reduce the side effects of the drug. I am not aware of any, but I believe the best source of information would be from Rituxan's maker which is Biogen Idec (www.biogenidec.com). I would call the company directly.
Betsy
Betsy and I continue to receive many comments from you, our blog readers. We thank you for writing--it demonstrates both your keen interest in our blog entries and, even more importantly, enables us to understand your concerns, your questions, indeed, at times, your apprehension.
Please continue to write to us.
The most recent readers' comments to me relate to two topics: 1. learning the names of physicians experienced in radioimmunotherapy in the reader's geographic area, and 2. what should the patient do when there is recurrence of lymphoma?
Concerning the names of physicians, we are pleased to track down names of physicians, but you must give us a little time to assist you in this search. I know of no registry that lists RIT physicians.
Concerning recurrent disease, I suggest the patient strongly consider getting a second oncology opinion. You, the patient, should not be concerned about hurting your physician's feelings. A quality physician understands that a patient can have utmost respect for the physician, yet request another opinion. Oftentimes, the second physician offers a very important suggestion that is of immense benefit.
Mort
Mort writes of being a family, and I wholeheartedly agree with him. Since my recovery over 4 years ago, I have had the pleasure of communicating with patients across this great country. Some have gone before me and others have followed in my footsteps, but our illness has connected us in a way that nothing else can.
When I was diagnosed, I would never have imagined that an illness would introduce me to so many wonderful people. Some I have gotten to know well while others have simply touched me briefly, yet made a difference. Let me share an example. The day that I bought a wig was difficult for me - for several reasons. I hadn't yet lost my hair and I was trying on one wig after another. The saleswoman was of no help. She never told me the wigs could be cut or trimmed and I thought every one I tried on looked horrible.
Another woman was in the store wearing a scarf. She briefly came over, put her arm around my shoulder, and said, "This is hard, honey, but you can do it. Reach out to those of us who have gone before and let us help you through it." All I could manage to say was "Thank you." She smiled and left.
Those brief words from a perfect stranger made that day a little easier. I still had the same problem, but her kindness lifted me from my misery, and I was strengthened by every reminder that I wasn't alone.
And so as Mort says, we are a family and we are enormously sympathetic to those who unwillingly join this diverse community. We continue to encourage you to write to us and to share your concerns, and most of all, we want you to know that you are never alone.
Betsy
I thank Betsy and her husband, Alex, for attending the radioimmunotherapy (RIT) meeting held Oct. 27 in Hollywood, FL. They came from Michigan to be present.
The physicians in attendance told me that the scientific portion of the meeting was outstanding in providing more evidence of the efficacy of RIT. Patients told me of their session affording them information to help them make key decisions on their therapy and for encouraging a sense of kinship amongst fellow patients.
This meeting represents an ongoing (may i say, ceaseless?) effort of Betsy and me to help inform lymphoma patients of the need to learn more about RIT and to obtain consultation with a physician who is experienced in this therapy.
Mort
Thanks to all of you who responded to the informal survey. The comments were interesting and all touched me deeply. Only one respondent had taken radioimmunotherapy, and no others indicated that they were offered the treatment as an option. I'll summarize the readers' comments followed by my own.
Several of the respondents are being treated with Rituxan as maintenance therapy after chemotherapy. One is experiencing flu-like symptoms after each Rituxan treatment. Another's lymph nodes are increasing in size during the maintenance therapy and he wonders if chemo will be necessary again. Another patient, age 87 with follicular lymphoma, has been told that radioimmunotherapy (RIT) is not used for her type of NHL.
Rituxan has not been approved by the FDA for maintenance therapy. However, many drugs are successfully used for purposes other than those for which they are approved, so Rituxan as maintenance therapy is not unusual. However, one must wonder why it is used so commonly when radioimmunotherapy could potentially offer patients less treatment time with fewer side effects and with longer term remissions. Why go through months of flu like symptoms with every Rituxan treatment if there is an alternative?
In the case of the patient whose lymph nodes are growing despite maintenance therapy, a discussion about radioimmunotherapy as a possible alternative to chemotherapy would be worthwhile. In regard to the comment that RIT is not used for follicular lymphoma, RIT was approved for exactly that type of disease! And in elderly patients, it is especially useful because it is so much easier to take than chemotherapy. Another patient wrote that his doctor told him that Medicare did not cover RIT. I checked my sources and found that it does.
Another patient, also taking maintenance therapy, was told that the doctor was worried about retreatment should RIT not work. As I have said before, there is 16 and 13 years of data for Bexxar and Zevalin respectively, and studies have indicated that retreatment is possible.
The one patient who has taken RIT is another long term survivor - since 1991, but she had chemo and radiation prior to RIT.
In summarizing your responses, it seems that maintenance therapy has become the standard of care, and I wonder why when RIT can offer patients a chance of long term remission with a treatment that is given in two doses a week apart. Last year, RIT was given to less than 5% of the lymphoma population who could potentially have benefitted from it. While I am not aware of any study that has compared maintenance therapy to RIT, neither am I aware of any study that has shown maintenance therapy to be as successful as RIT.
A couple of the best RIT specialists in this country have told me that if RIT were a breast cancer drug, people would be lined up at the door to take it. The problem seems to be that breast cancer patients have a unified voice and a network of patients who talk with each other and demand the "latest and greatest" from their doctors. We lymphoma patients don't have that yet. Until we do, RIT will continue to be underutilized. We must demand the same "latest and greatest" from our physicians, and that may mean seeking a second or even a third opinion if your own doctor does not discuss RIT with you.
Please see the entries of September 25 (Profit Versus Patient) and on July 13 and 14 (Maintenance Therapy) for further discussion.
Thanks to all of you who took the time to respond to us. Mort and I always welcome your comments.
Betsy
I like to say that we live in many families....
---a family called republic under a flag of stars and stripes
---a family called national heritage
---a family called religion
---a family based upon genetic code
Now, I am a member of another family---a family of warm, engaging, intelligent and positive persons. It is the family called lymphoma survivors. At the radioimmunotherapy meeting held a few days ago in Hollywood, FL, I met many lymphoma survivors. The immediate sense of kinship and bonhomie binding us together was heartwarming.
We family members must continue to support one another, to educate one another, and never to allow one to flag in spirit.
Mort
Alex and I returned last night from a wonderful trip which included the radioimmunotherapy conference in Hollywood, Florida, and I must congratulate Mort for the tremendous effort he made to put it together. It was encouraging to see a room full of physicians learning about RIT and another room filled with patients also learning about the treatment.
Although the conference was a wonderful educational opportunity for both physicians and patients to learn about RIT, it is not the only opportunity, and thanks to the web, information is readily available from many sources. Mort and I continue to be one of those sources.
Many thanks to all of you who have responded to the "informal survey" which I posted on 10/19. I'll summarize your answers in the next entry on Monday and would ask anyone who has not yet responded to check that entry for the questions I asked and to send in your answers.
Many thanks,
Betsy
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