Targeted Information for
Patients With
Non-Hodgkins Lymphoma
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| June 2006 »
Today is my 56th birthday! Clearly I don't mind sharing my age! On the contrary, I celebrate each and every year and am so thankful for the gift of time given to me by the countless people who made radioimmunotherapy possible. Thanks to this new type of treatment, I've had three birthdays that 4 years ago I wasn't sure I would have!
I have been reading with great interest the comments that have been posted. Some make me smile, such as successful treatment stories. Others break my heart - believe me, I know the physical and emotional pain and strain of NHL.
While it is impossible to answer each comment individually, I will try to categorize the questions and provide answers from the perspective of a patient, not as a medical professional.
So please keep writing - it is heartening to hear from all who share this common bond.
Betsy
I am pleased with the comments made in this blog. Your statements are mostly heartening, sometimes sad, but always, most interesting. Please continue to send in your comments.
It is impossible for me to personally answer each of your comments. Therefore, I shall "categorize" them in an effort to most clearly be responsive.
Many of the comments ask, in effect, what should I do? This is a critically important question. The basis of this question is the consensus amongst lymphoma experts that "no one knows the right way to treat non-Hodgkin's lymphoma". Since there is no single "right way", there are numberous treatment plans that you have described in your comments.
I write only as a patient, not as a physician. I urge each NHL patient to consult with a physician experienced in radioimmunotherapy so that the patient will have the widest breadth of treatment options.
Mort
For many years, chemotherapy was the standard treatment for NHL, and doctors often recommended "watching and waiting" until symptoms appeared or the disease progressed to the point that treatment was necessary. For some, it is difficult to do nothing knowing that cancer is growing inside. For others, prolonging treatment is easier.
If you fall into the first category and your doctor is recommending watching and waiting, I suggest getting a second opinion or even a third. NHL is a complicated disease, and treatment is as much an art as a science. Some doctors will take a more conservative approach and others a more aggressive one. It's important to determine your own needs, set your own goals, and find a doctor who will help you meet them to the best of his or her ability.
Knowing when to begin treatment - and which treatment you begin - depends on a variety of factors that you and your doctor should discuss, and you should always let your doctor know how you feel about watching and waiting. With newer treatments available, and more of them, you may have other options, including participating in a clinical trial.
Betsy
I write in response to the interesting message in which a blog visitor enquires about clinical trials.
Firstly, I personally feel that patient participation in clinical trials is most important in the area of oncology.
Secondly, I suggest that the person interested in finding clinical trials follow the following course:
1. go to the national Cancer Institute website: www.cancer.gov. Then, go to "Types of Cancer" and
click on non-Hodgkin's lymphoma (NHL).
2. if the patient lives close to a hospital affiliated with a medical schooil, call the hospital and enquire
about clinical trials.
My participation in a clinical trial in which I received radioimmunotherapy as first-line therapy for NHL resulted in a wonderful result.
Mort
The word "cure" gives us all a lift, but I think most doctors would hesitate to use the word until a generation of so of data proves that few NHL patients relapse.
The dictionary defines cure as "to bring back to health," but it doesn't specify the length of time. As cancer patients and survivors, are we putting too much emphasis on the word itself? Does hearing "cure" from a doctor really guarantee that cancer will not return? Of course not.
There are many people who are living normal, healthy lives after bouts with NHL. Our doctors say we are in remission. With all due respect for their scientific expertise, today there is no evidence of disease in my body. I have been brought back to health, the very definition of cure! And that is how I think of myself!
Still, the question: is NHL curable? It's doubtful that any one of us could find a doctor who would definitively answer yes, but each year, more people are surviving because new treatments like radioimmunotherapy are proving to increase the survival rates.
The logic of radioimmunotherapy(RIT) is in its SPECIFICITY and its "PUNCH".
In an earlier entry I wrote of RIT specificity as the antibodies in the medication attach to the lymphoma cells and kill them.
However, with treatment, there may be a few lymphoma cells that will not have antibodies attached to them. These lymphoma cells, then, remain alive and could potentially become troublesome. But, the RIT also has PUNCH,.
Punch means that the radioactive tag in the medication will kill cancer cells even when the medication is not physically attached to the lymphoma cell.
I was so pleased to have received Zevalin, a radioimmunotherapy agent. The added Punch effect signivicantly added to my feeling of confidence in my therapy.
Mort Diamond
A reader asked about finding a doctor who is knowledgeable about RIT in a particular area of the country. I don't personally know of any one place that will give the answer, but I would start at the nearest teaching hospital. Doctors who teach and who also see patients are most likely to be in contact with other specialists in their fields and they may be more familiar with the latest treatments.
Another source is available at www.hematology.org which is the website of the American Society of Hematologists. At the top, click "Patients" and that will take you to "Patient Resources" and there you click "Find A Hematologist" by state. This site lists only those doctors who list themselves, so it is not a complete list.
You may also want to "google" radiommunotherapy and research the articles which come up to see what names, if any, appear in a particular region.
Radiation oncologists are the doctors who actually administer radioimmunotherapy, so don't overlook them as you are searching. They may provide valuable information about the doctors who actually prescribe the treatment.
Once you've assembled a list of "possibles," you will most likely have to make some phone calls, and if one doctor doesn't specialize, be sure to ask for a recommendation to one of his or her colleagues. Keep at it - it's well worth the effort!
I have received a most interesting, and most important, message in which the writer states that a famffily member has just been newly diagnosed with NHL. It is in the newly diagnosed patient that there be a carefully developed therapeutic plan after all options are considered.
The writer aks about informational websites: I suggest starting with the the healthology website (www.lymphomainnovations.com) ; then, the lymphoma and leukemia society site (www.leukemia-lymphoma.org.
I suggest that, after staging of the disease has been completed, the newly diagnosed patient obtain a consultation with a physician who is personally experienced in radioimmunotherapy (RIT). After such consultation, the patient will be in a much better position to personally decide upon his/her treatment regimen, especially if chemotherapy alone, or chemotherapy and immunotherapy, have been suggested.
From my personal experience, it is critical to know whether RIT may play a role in therapy, even in off-label use.
Mort
Treatment in the clinical trial with CVP followed by a vaccine began in April of 2002. After two treatments, it was clear that it wasn't working. I bounced out of the trial and into the hospital, first with an infection and then with a spleen problem. CHOP with Rituxan started during my hospital stay, but it was accompanied by a slew of complications including tumor lysis syndrome, renal failure and memory loss to name a few.
After 4 of the planned 8 treatments, we were pleased that CHOP seemed to be working. Just after the 5th treatment, however, the disease returned with a roar.
Chemotherapy did little more than deprive me of my hair, help me to forget what day it was, and send me to the hospital with side effects everyone hopes to avoid. On the bright side, it bought enough time for the FDA to approve radioimmunotherapy.
I have earlier stated that I opted for an experimental clinical study in which I received a radioimmunotherapy agent, Zevalin, as FIRST-LINE therapy for my follicular non-Hodgkin's lymphoma. First-line means that the patient has not received any prior treatment for the malignancy.
As a patient, I was most impressed with the logic of radioimmunotherapy. The agent is a protein antibody that SPECIFICALLY attacks the ymphoma cells, sparing normal tissues. Having received the radioimmunotherapy, I was fortunate to have only received 3 cycles of CHOP chemotherapy (considerably fewer than the number of CHOP cycles received by those patients receiving standard therapy).
I did not lose a single day of work from adverse effects of therapy. This fact, in my mind, is due to the specificity of the radioimmunotherapy.
When I was first diagnosed, there were some new treatments in various stages of clinical trials and a couple under FDA review, but only two options were available which fit my situation. I could opt for standard chemotherapy or enroll in a clinical trial in which I would take 8 rounds of CVP followed by a vaccine if I stayed in remission that long.
At the time, early in 2002, I had to face the facts. Chemotherapy, at best, would slow the disease for periods that varied from patient to patient. Each subsequent relapse would require stronger drugs until eventually no options remained. I could expect to live for 5 to 8 years with the treatments that were then available. That wasn't long enough!
My doctor told me about radioimmunotherapy which was under FDA review and thus unavailable, but he expected it to be approved in the coming months and said it might be an option if chemotherapy failed. It was comforting to have such a forward thinking doctor.
I opted to enroll in the clinical trial.
I learned a long time ago that a physician's most powerful medicine is REASSURANCE.
Upon learning my diagnosis of NHL, I consulted with two expert oncologists. I was reassured that they were in agreement. Unfortunately, it was not the agreement that I sought.
They agreed on two points; firstly, that "no one knows the best way to treat NHL" and secondly, Stage IV disease is incurable.
One suggested "no treatment until your vital organs are affected". The second oncologist recommended immediate treatment.
How did I make my decision? I went back to my basic principles, my core values, my CREED.
My core values are: 1. I refuse to yield to this disease. 2. I want to attack this cancer as early and as hard as I can. 3. I shall have a positive attitude. 4. I shall not accept standard therapy since standard therapy does not cure the malignancy.
Therefore, I started my search for an experimental clinical trial.
Mort
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How should the NHL patient respond to this blunt truth?
What were the factors that inflluenced my decision?
Mort
We live near a large teaching hospital with a clinic which specializes in the blood cancers, and I landed in the hands of an excellent doctor whose specialty is lymphoma. Knowing what I now know, I realize just how lucky that was for several reasons. First, successful treatment depends on correct pathology, and pathologists who see nothing but lymphoma are more likely to recognize the subtle differences between the various types of the disease. Second, it also depends on specialists who are aware of the newest and most effective treatments - and who are willing to use them.
Not everyone has access to specialists such as I had and so the task of dealing with lymphoma is more difficult. Correct information is critical, but where, oh where, to find it?
I am a physician.
In fact, I am a Professor of Medicine.
I am a non-Hodgkin's lymphoma survivor.
I have been a patient in a clinical trial and have received an experimental treatment regimen.
All of this, I submit, gives me a most unusual, if not unique, perspective on NHL.
It is this perspective that I am most willing to share.
Your comments and questions are welcome. My responses will all be from Mort Diamond, patient. Understandably, it would be a violation of medical principle for me to offer specific medical advice.
When I was diagnosed with stage IV follicular lymphoma in January 2002, I had no medical or scientific background to help me understand the language of medicine, much less how to confront the disease medically or emotionally. I didn't know what questions to ask or even whom I should be asking. I simply knew that I wanted to live. From this position, I started the journey, and along the way, mastered a new vocabulary, learned the importance of a good medical team, and discovered strength I never knew I had and what really mattered most.
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