Targeted Information for
Patients With
Non-Hodgkins Lymphoma
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Nearly four years ago, in August of 2002, I relapsed for the second time during chemo treatment. I was scared. It seemed that nothing would rid my body of the disease that was trying its best to kill me. At the time, my grandchildren were 1-1/2 and 3 years old, and I was afraid I would never see them start kindergarten, much less have a chance to watch them grow up.
The oldest will begin second grade and the youngest will start kindergarten this school year. I've just spend a few glorious days with the little munchkins, spoiling them as rotten as any grandmother can! Having the chance to do that is one of the best results radioimmunotherapy gave to me.
With RIT, there is real hope to live and love and laugh after cancer, and every day, I am so grateful that it became available in the nick of time.
Betsy
Newly diagnosed lymphoma patients are, understandably, anxious and distressed as they consider treatment options, costs, and, even, prognosis.
One manner in which the patient's anxiety may be substantially reduced is for the patient to be told, in advance, what to expect. I specifically refer to the following:
a. details about the treatment: the order of medications, timing of therapy
b. serial testing; timing of blood and imaging studies
c. likely side-effects of medicinal agents
By being informed in a timely fashion enables the patient to feel more confident and more relaxed.
Mort
When I was first diagnosed, it was very difficult for me to see the pain in the eyes of my family and friends. Even in the first few days of denial, I must have subconsciously realized that I wanted to make them feel better, and so I did everything I could to make them laugh. As weeks of treatments, side effects and complications turned into months, I believed that I had a responsibility to help the people who cared about me, especially my husband, to worry less, and so I often withheld my innermost fears.
That, of course, left me without an outlet, and so I turned to the computer and wrote when I needed to express my feelings. Writing tremendously helped me to identify what I was really feeling and then to put those feelings into perspective, and by doing so, I was better able to deal with them and carry on. My book is based on that journal, and it delves into the emotions that my husband and experienced and shares how we coped with them.
I have often said that writing the book helped me far more than it could ever help anyone else. Writing the journal provided an outlet, and then turning it into a book further helped to put the whole experience of cancer into perspective and to detach from it, almost as if the story belonged to someone else.
Not everyone can and wants to write, but having an outlet is helpful. For some, support groups are beneficial. For others, it's taking a class or meditating or doing yoga. I believe that finding something that calms you can greatly help you through the maze of emotions.
Betsy
I very recently had my 6-month periodic follow-up examination by my oncologist. It is now 3 years since my radioimmunotherapy treatment for non-Hodgkin's lymphoma, Stage IV.
A brilliant and delightful person, he said to me with a smile, "You are such a boring patient". How special these words were to me. "Boring" means no evidence of cancer. Boring means that all blood studies are normal. Boring means that the patient is aymptomatic.
I'll be happy to be called boring for years to come.
Mort
Like Mort, I believe that physicians can greatly influence our confidence by giving us reassurance. That doesn't mean painting rosy pictures. It means finding a way to help us maneuver through the maze of emotions we feel, and that could be the subject for a whole essay!
I was so lucky to have had a great medical team who never treated me as a collection of cells that needed to be fixed. Instead, they instinctively knew that the emotional aspects of cancer can be just as devastating as the physical ones, and they squeezed my hand or gave me a hug just as easily as they poked, prodded, knifed and drugged me. They also never gave up on me, even when I relapsed twice during treatment with chemo. Their confidence and reassurance helped me to believe that I would get well, and it made a world of difference in how I responded to them as well as to my illness because I knew that I had a whole team of people who were working hard to save my life, and that was a great comfort. Every patient deserves the same kind of team.
When radioimmunotherapy was approved and I was finally able to have it, my confidence soared because I knew at last that there was a treatment that might actually arrest the disease. And it did!!!! It gave me the best present I've ever had - nearly four years of happy, healthy living, and I'm still counting on many more.
Betsy
I have long belileved that a physician's most important medicine is reassurance. Reassurance gives the patient a sense of confidence.
When I learned of the brilliant logic of radioimmunotherapy---its specificity and its punch---I had full confidence upon entering the clinical trial in which I received Zevalin as first-line therapy for my Stage IV non-Hodgkin's lymphoma. That sense of confidence made the frequent long-distance trips to the treatment facility, the innumerable blood tests and the imaging studies so much easier to tolerate.
Further, my confidence was contagious. It was remarkable how my attitude influenced that of my dear family members.
Mort
Before sharing an interesting article, I'd like to mention again that Mort and I are anxious to hear from those of you who are reading the blog. Many readers do write, but "zero" always appears under comments. It's just a function of the blog itself, so don't be deterred by thinking that no one else is writing. We really do want to hear from you!
So now to share an interesting article published on March 7, 2006 by The American Cancer Society which summarized a recent article published in the Journal of Clinical Oncology. It stated that researchers reviewed the results of clinical trials performed for the past 30 years. They found that follicular lymphoma can be treated with chemotherapy but that the disease invariably comes back. Further, they found that follicular lymphoma patients who are treated with monoclonal antibodies are living longer and experiencing longer remission periods.
Monoclonal antibodies are man made. Some kill cancerous cells by themselves while others have a radioactive atom attached to help them kill the cancerous cells. The conclusion was that adding these monoclonal antibodies increased the lifespan of patients with follicular lymphoma.
If we have to have lymphoma at all, we are lucky to live at a time in medical history that gives physicians the capability to manage lymphoma with increasingly successful treatments. Radioimmunotherapy rescued me when all else failed.
Betsy
Non-Hodgkin's lymphoma (NHL) is one of the malignancies that is increasing at the fastest rate in the United States. The explanation for this increasing incidence is, unfortunately, unknown. Factors as wide in scope as infection and exposure to environmental agents are under scrutiny.
While the cause remains enigmatic, we patients are fortunate that there are now effective therapies for NHL. In my case, radioimmunotherapy has resulted in my presently having no evidence of disease 3 years after therapy.
Mort
RIT is currently approved for patients who have relapsed after chemotherapy. Clinical trials such as the one in which Mort participated, indicate that RIT is effective as a first line treatment. In fact, the results of one such study were published in the New England Journal of Medicine on February 3, 2005. 76 patients were enrolled. 95% of them responded, and 75% achieved complete response and 75% of those were disease-free after 5 years!
I think this indicates that radioimmunotherapy is an effective treatment. Better yet, it spares patients months of agonizing chemotherapy and its side effects.
Certainly there is a large segment of lymphoma patients who are eligible for RIT. The American Cancer Society estimates that approximately 64,000 people will be diagnosed with lymphoma this year. 14,000 of them will have follicular lymphoma, for which RIT is approved. I wish that none of them had to undergo chemotherapy. Hopefully, ongoing studies will soon convince the FDA to approve RIT as a first treatment and chemo will soon be a thing of the past.
Betsy
I write to offer a small comment to Betsy's interesting and informative entry on the subject of maintenance therapy.
Personally, I feel that each patient should rely on his or her "creed" (basic values) upon which to determine how one should attack a malignant disease. My creed told me to attack non-Hodgkin's lymphoma as early and as hard as possible. Therefore, I opted for an experimental therapy using radioimmunotherapy as first-line treatment of NHL.
Other persons may feel entirely comfortable accepting ongoing, serial medicinal therapy.
This discussion emphasizes the fact that medical care is much more than simply a medication. Personal feelings should not go unheeded in determing one's therapy.
Mort
Maintenance therapy is the use of the monoclonal antibody Rituxan after remission is achieved. Recent American and Swiss studies indicate that maintenance therapy is a preemptive measure against residual disease and that it seems to delay or prevent relapse.
In the American study, Rituxan was given 4 times at 6 month intervals. In the Swiss study, Rituxan was given 1 time at 2 month intervals. In both, a significant number of patients stayed in remission longer than those who did not receive maintenance therapy, so there is little doubt that it is helpful.
What is not known is whether or not maintenance therapy causes resistance to Rituxan. Studies are underway to investigate this issue, and if results indicate that lymphoma cells become resistant to the drug, will it be more difficult to treat patients who relapse during maintenance or after? The question of whether it is better to prevent relapse or re-treat upon relapse remains unanswered.
Certainly Rituxan in invaluable. It has improved the outcome for many lymphoma patients. But there is also a psychological factor to maintenance therapy. I've conducted no scientific survey, but the patients I know who are continuing with therapy every few months don't consider themselves quite well, no matter how good they feel or how active they are.
I'm not aware of any study which compares radioimmunotherapy to maintenance therapy, but it would be interesting
to see the results. I would personally rather be treated with radioimmunotherapy and get on with my life without having periodic treatments, but patients should make individual choices.
Betsy
I have just celebrated my 3-year anniversary. Not my wedding anniversary; rather, the anniversary of having taking radioimmunotherapy (RIT) for non-Hodgkin's lymphoma.
I am so grateful---for the wonderful response as the RIT has eliminated all signs of cancer, for the fact that I tolerated the RIT treatment so well, and for the fact that I did not lose a single day of work during or after the treatment.
And, because of RIT, I have just celebrated another anniversary. My 42nd wedding anniverary.
Mort
I just learned about a free telephone workshop called "Radioimmunotherapy for Non-Hodgkin's Lymphoma: Is This the Right Treatment For Me?" which will be held on Wednesday August 16 from 1:30 to 2:30 Eastern Standard Time. Discussion topics include: a brief overview of lymphoma, treatment options, antibody therapy, basics of radioimmunotherapy, safety considerations, and more.
Telephone workshops are easy. Once you register, you will be sent instructions on how to participate. All you need is a phone!
To register for this one, log on to http://www.cancercare.org and click on the link to upcoming events.
Betsy
I have read, with keen interest, comments related to lymphoma diagnosis and symptoms.
My lymphoma diagnosis was Stage IV non-Hodgkin's lymphoma. At no time, either at time of diagnosis or during radioimmunotherapy treatment, did I have pain---not even the slightest discomfort.
A key function of the oncologist is to determine whether the lymphoma patient's pain (or other symptoms) is due to the lymphoma or due to some other malady. If the discomfort is due to the lymphoma, then there are effective treatment options available to that patient.
In my mind, speaking as a patient, acute pain requires ongoing, even repetitive, investigation. On the other hand, chronic pain is a disease unto itself.
Mort
A reader has asked whether she should be concerned about pain for which doctors have been unable to find a cause and have thus told her not to be concerned. I had a similar experience so will answer from a patient's perspective.
During my illness, I had significant pain that made breathing difficult. It began just minutes before radioimmunotherapy was going to be administered and I was not at my regular oncologist's office. Half way through treatment, I was still having difficulty breathing and so the nurse called the doctor in charge. She returned with a prescription for pain killers (which I never filled) and announced that the doctor felt that cancer had spread to my bones and that was causing the pain.
My husband and I were stunned. In the middle of a treatment that was supposed to save my life, we were told that I had bone cancer by a nurse whose doctor had never examined or tested me for the symptom!
This whole story is in my book, but the short version is that I hightailed it back to my own doctor who ran every possible test for the pain and still found no reason for it, and it took about four weeks to subside on its own. In the book, I summed it all up by saying, "Our mysterious bodies sometimes outwit even the best doctors - even the ones who actually try to find causes for symptoms."
So - I can only share my own experience with unexplained pain. It is difficult to have pain and to be told not to be concerned about it. The best way to find peace of mind is to find a doctor who will at least attempt to find a cause before dismissing it as nothing.
Betsy
As Betsy has so nicely described, the history of radioimmunotherapy (RIT) is long in its development. Yet, RIT is considered "new", a "breakthrough" in the treatment of lymphoma.
It is perseverance by physicians, strengthened by the vocal, yet respectful, demand of patients, that is the key to recognition of breakthrough therapies.
This is exactly why Betsy and I continually recommend that lymphoma patients obtain consultations with physicians who are experienced in RIT.
Mort
As Mort has mentioned, many readers have asked specific questions that relate to their own medical conditions. Because both of us understand how important it is to find answers, I think I can speak for Mort when I say that both of us wish we could help. But specific questions are best answered by your own doctors.
As we continue to write, I'm wondering, though, if there are specific subjects you would like us to write about, and so I thought I would take this opportunity to ask each of you to send comments and give us some general topics you'd like to know more about.
On a different note, someone asked about the how long radioimmunotherapy has been around. I talk about this in my book (page 156), but will summarize here:
Radioimmunotherapy grew from an idea of treating cancer with antibodies, a theory that dates back to 1908 when German bacteriologist Paul Erlich won a Nobel Prize for his studies of the immune system. Erlich believed that it might be possible to attach substances to antibodies which would then kill tumors without harming normal cells. However, scientists were unable to perfect Erlich's theory because they could not produce pure lines of antibodies.
It wasn't until 1972 that German immunologists discovered how to produce pure lines of antibodies, called monoclonal antibodies. At first, researchers believed that these antibodies might be able to kill cancerous cells without attaching substances to them. But the antibodies needed a target on tumor cells which they could recognize and to which they could attach, and no one could find either. By the mid eighties, most scientists had given up for lack of funding and progress.
A small handful of scientists continued doggedly and their persistence paid off. In the early 90's, the first clinical trials began and the results were astounding, but it wasn't until 2002 that radioimmunotherapy was approved by the FDA.
So from Paul Erlich in 1908 to FDA approval in 2002, it took 94 years!!!!! Personally, I am thankful to the countless scientists who never gave up.
Happy Fourth of July to all!
Betsy
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