Targeted Information for
Patients With
Non-Hodgkins Lymphoma
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Blog viewers continue to ask important questions. Many of these questions end with the poignant "What should I do?" or "What do you recommend?".
Of course, I would like to give a definitive, even an authoritative answer, to these questions. Unfortunately, I am not in a position to do this, for I am not a lymphoma expert and, secondly, every single case is different. Like many of you, I am a lymphoma survivor.
What I am attempting to do is to assist fellow-lymphoma patients in gaining further information. Since I have benefited so maarvelously from radioimmunotherapy therapy, I encourage all patients to seek an opinion from a physician who is experienced in this modality.
Continue to ask these same questions and do not hesitate to get a second opinion.
Mort
When I was initially diagnosed, I searched for any and all ways for lymphoma to be treated, including alternative therapies, but I couldn't find a single piece of evidence that alternative therapies had ever been proven to be effective, so I opted for traditional therapy because I wanted to have the best possible chance to continue living.
Complementary therapies, however, are just that - "assistants" to traditional therapy, and even doctors are beginning to see their value. To name but a few, they can include yoga, guided imagery, art or music therapy, exercise, a healthy diet, and herbal supplements. If you decide to take supplements, you should inform your doctor because even herbals can interact with drugs he or she may be prescribing for you.
Early in my illness, I figured out that my doctor had his role and that I had mine, and part of my role was to keep myself as healthy as possible while my doctor worked to heal my lymphoma, so I did everything I could to complement what he was doing.
Complementary therapies are not meant to replace traditional medicine, but I do believe that they can make illness and treatments more bearable.
Betsy
I have read comments from blog readers relating to "non-conventional" treatment of lymphoma.
Non-conventional treatment, in my thinking, is two-fold. First is complementary or alternative treatment which relates to practices or products not normally considered to be conventional medicine. This may include special diets, herbal supplements and non-herbal supplements. Personally, I know nothing of this practice in treatment of lymphoma.
Second is what I would call non-traditional treatment. This, to me, is different from alternative therapy. Non-traditional may relate to medications in the process of clinical investigation. As an example, radioimmunotherapy may have been considered "non-traditional" until such point as clinical trials have shown its effectiveness. (I was a patient in one such trial.)
To me, radioimmunotherapy is no longer non-traditional, but now is to be considered an important class of medication in treatment of several lymphomas.
Mort
Several readers have shared their diagnoses and asked if they are candidates for radioimmunotherapy. I wish I could answer them, but I am not a doctor. The best advice I can give is to seek out a physician who is experienced in the treatment of lymphoma and who utilizes RIT - and then discuss your specific situation with him or her.
As I mentioned earlier, "oncologists" treat all sorts of cancers whereas "hematologist/oncologists" treat the blood cancers specifically, and I imagine that they would be most likely to be "up" on the most advanced and most effective therapies for their own specialty.
Personally, if I were told by a single doctor that I was not a candidate for radioimmunotherapy, I would seek another opinion.
Betsy
It is very interesting in the history of medicine that, in certain diseases, effective, new medications are accepted immediately, while, in other disease states, effective medications are more slowly accepted by the medical community.
The reasons for this incongruity are sometimes unclear. At times, the data proving a medication's effectiveness appears to be grudgingly slow. Certainly, all physicians want their patients to get better.
Based upon what I have been advised, radioimmunotherapy (RIT) is effective and, in most patients, well tolerated. In my case, I did not lose a single day of work related to RIT therapy. Its time has come to stand as an important weapon against non-Hodgkin's lymphoma.
I personally feel that all newly-diagnosed NHL patients shoulld get the benefit of a consultation with a physician who is experienced in radioimmunotherapy before deciding upon a treatment regimen.
Mort Diamond
I'd like to think of myself as a reasonable, logical person, and it never ceases to amaze me how quickly reason and logic can shift so easily to doubt. I suppose that's part of what cancer leaves in its wake.
I had my 6 month checkup this past week - CT scan, blood work and visit with the doctor - and I found myself doubting my own wellness for a couple of days. Logic told me there was no reason to doubt, yet my emotions wondered if there was. Tests confirmed all is well, and today, thanks to radioimmunotherapy, I have been cancer free for 3 years, 9 months and 11 days - not that I'm counting!
A little anxiety around checkup time is common, but there is no sense letting it go on for days. My doctor's office called the day after my scan to report the results, so I already knew I was fine by the time the doctor and I met a few days later. Fortunately, I have a doctor who understands that anxiety mounts while patients wait for test results, and he's very good about reporting them quickly.
If you experience the same rise in anxiety around checkup time, you might want to ask your doctor to call you with the results of tests prior to your visit. It really does help. It even helped back in the days when I learned bad news before visits with the doctor. At least I knew what to expect and could be prepared.
Betsy
Several blog comments have indicated that patients have had treatment (one or more cycles of therapy) for non-Hodgkin's lymphoma (NHL) and, presently, imaging studies show abnormal lymph nodes. These patients have been told of "stable disease".
What should these patients do? What is the right answer?
Unfortunately, the experts admit that they do not know the right answer. Yet, these important questions, I believe, can be answered.
Speaking for myself, my answer was based upon the fact that I was young at time of diagnosis (64 years) and in otherwise excellent health. My creed (please see my entry of 5/12/06) told me to take treatment even though I was totally asymptomatic. I made the decision to receive radioimmunotherapy as first-line treatment for NHL
To those who have "stable disease", again, I suggest consultation with a physician experienced in radioimmunotherapy. After getting that medical opinion, you will feel more confident in your decision.
Mort
There have been questions about how patients should expect to feel during treatment and about how long fatigue may last. Unfortunately, there is no "one-size-fits-all" answer. It depends on many factors, including the type of treatment you are receiving, the stage of your disease, the status of your overall health, your age, and - in my humble opinion - your luck, something no doctor would ever say. Let me explain what I mean by that.
When I was undergoing CHOP + R, I was in my early 50's, in good overall health other than lymphoma, and yet I suffered many of the side effects everyone hopes to avoid. At the same time I was being treated and battling the side effects, I met a woman who was undergoing the same treatment who had no side effects whatsoever, and even said that the treatment energized her. She was 83!!! Why did she breeze through treatment and I didn't? My only explanation was luck.
The point is that there is no way to predict how each individual will respond. Certainly cancer related fatigue is very real and very common. Simply having NHL causes stress which leads to fatigue, and if you undergo months of chemotherapy, fatigue certainly increases, and it may last beyond treatment for weeks or even months.
On the other hand, radioimmunotherapy spares healthy cells and does not require months of debilitating treatment, so it does not cause the fatigue that chemo does. Recovery is much faster and easier.
Whatever treatment you take, fatigue diminishes as you improve physically. Exercise and a healthy diet will speed the process.
Betsy
The United States Food and Drug Administration (FDA) regulates and controls new drugs that may be used by physicians. These controls include the medical indications for which a medication may be used.
For example, the radioimmunotherapy agent Zevalin is FDA-approved for the treatment of relapsed or refractory non-Hodgkin's lymphoma. Off-label use of Zevalin means that this approved medication would be used by a lymphoma specialist as first-line therapy of NHL rather than for relapsed or end-stage patients.
Off-label use of medications is very common in medical practice, particularly in treatment of patients who have cancer. Interestingly, one of the most important medicines used in the treatment of heart attack patients was used off-label for years.
Off-label use of a medication is legal and ethical.
My suggestion to newly diagnosed NHL patients: consult with a physician experienced in radioimmunotherapy (RIT) and enquire whether RIT may be properly and effectively used off-label in your therapy.
In the clinical trial in which I was a patient, I received RIT off-label as first-line therapy of NHL. My results are superlative.
Mort
In the beginning, I had no idea what questions to ask my doctor, much less how to evaluate the different treatment options. Fortunately, there is now a terrific guide available at www.lymphomainnovations.com. Once there, scroll down and look for "Radioimmunotherapy Information Kit" on the bottom right. The first two pages discuss RIT, and after that, there is an excellent questionnaire to help you determine your own goals. Following that are more questions you should discuss with your doctor.
This is a wonderful guide that would have been very helpful had it been available when I was ill. I think you will find it useful, and it will better prepare you to discuss and evaluate your options with your doctor.
Betsy
Comments from many blog visitors often include very specific medical questions. These questions are invariably interesting and important.
My responses are from a patient viewpoint and, certainly, are not to be regarded as medical advice from a lymphoma expert.
I have always been told that non-Hodgkin's lymphoma is not infectious or contagious.
I do not know whether a radioimmunotherapy agent can be given more than one time to a patient. This is an important question and should be directed to the nuclear medicine physician or radiation oncologist.
One blog visitor enquired about radioimmunotherapy for mantle cell lymphoma. I have just heard, informally, that a clinical trial specifically related to this issue has begun. I suggest that interested readers go to the national cancer insitute website
Few of us know much about lymphoma until it affects us personally, and then we are suddenly faced with enormous challenges, both emotionally and practically. When I was first diagnosed, I was suddenly surrounded by perfect strangers who were asking me to make important decisions that would affect my life, and I had very little time to make those choices. In fact, I've often had more time to find the perfect pair of shoes to match an outfit!
You, too, will be asked to make decisions, and making them will be easier with answers to some important questions. Following are a few basic questions for your doctor that may help you to make the right choice for you:
1. What is the EXACT type and stage of lymphoma that I have and how does that affect my prognosis?
2. What type of treatments are available for my lymphoma and what are the risks and benefits of each?
3. What are the side effects, both short and long term, of each of the treatment options?
4. Are any of the side effects permanent?
5. How are side effects managed?
6. What treatment do you recommend and why?
7. What other treatment should I consider?
8. What clinical trial is available for my situation?
And if your doctor is an oncologist (one which treats cancer in general), you may wish to ask if he or she could recommend a hematologist-oncologist (one which specializes in cancers of the blood).
You will have your own specific questions. I found that it was very helpful to write them down before visiting the doctor so that I didn't forget any of them. I even know some patients who have taken tape recorders to record the answers!
Finally, don't ever be embarrassed or afraid to ask a question, no matter how silly or trivial it might seem. There is no "dumb" question if you don't know the answer.
Learning to live with lymphoma truly is much easier when you understand the emotional, practical and financial aspects, and the only way to do that is to ask, ask, ask until you find the answers to your questions.
Betsy
I have stated that confusion and heartache are frequent expressions in your comments on this blog.
Certainly, this is understandable. My best advice, as a patient, is that you get more than one medical opinion and, certainly, from a physician who is experienced in radioimmunotherapy (RIT). As a patient who has benefited from RIT as first-line therapy, I reject the notion that RIT should be reserved as "last-ditch" therapy for those who have failed conventional therapy.
Many of your comments request my medical opinion. Please understand that, wlhile I am a physician, I am not a lymphoma expert. Therefore, my comments are those of a patient---one who has had a wonderful response to RIT.
Mort
This posting has no particular subject other than to respond to a couple of comments, all of which I read with great interest and occasionally with a few tears. As always, I will try to share what I have learned, at least from a patient's perspective.
Some of you wanted to know if RIT can be used again. To my knowledge, the answer is yes. I know of one person in particular who was in an early clinical trial in the mid-90's and was re-treated two years ago.
Currently, RIT has been approved by the FDA for patients who have been previously treated with chemotherapy and who have relapsed. Some clinical trials, such as the one in which Mort enrolled, have used it as an initial therapy and the results have been quite promising. I look forward to the day that RIT is approved as a front line therapy so that patients will never have to know chemo's side effects. Research is ongoing toward that goal.
Betsy
I am so pleased, indeed impressed, with the comments and questions from patients and loved ones.
Comments have come from those wlho are young in years and those who are still young at heart, namely, an 83 year old B17 Flying Fortress "driver".
Your comments and questions express a sense of confusion and, at times, heartache. Betsy and I understand this clearly, for there are so many conflicting attitudes toward lymphoma treatment.
Again, I had Stage IV, follicular, intermediate cell size, NHL with tumor in my blood and bones. One expert suggested no treatment until my "vital organs are involved". Another suggested treatment to be initiated promptly. Therefore, I did not "need" treatment. I chose treatment. (Please see my entry entitled "My Creed" dated 5/12/06 for my explanation.)
Mort
Several weeks ago I chatted with a man who is in his mid-30's and who has been in remission for 4 years following treatment with chemo. Four doctors recommended that he undergo a bone marrow transplant while he is healthy, but he was very reluctant to submit to such an invasive procedure. He wanted to know whether I thought radioimmunotherapy was an option for him.
The first thing I told him was that I am not a doctor, and I suggested that he find one who specializes in RIT. He flew half way across the country to see one of the top RIT specialists and learned that he is a good candidate for it if and when the disease recurs. Needless to say, he was greatly relieved. His persistence rescued him from undergoing a risky, lengthy procedure.
Not everyone can travel such a distance, but I share this story to emphasize that there are different philosophies regarding treatment for NHL, which makes it even more important to find a doctor who shares your goals.
Betsy
There is a special group of medical professionals who can be of inestimable support to the lymphoma patient and, perhaps more importantly, to the family member/caregiver.
This special person is the oncology social worker (OCW). The OSW is a counselor whose support and advice is so very important during the multiple phases of diagnosis and treatment. These phases might be arbitrarily divided into the following: 1. responding to the diagnosis of malignant lymphoma; 2. selection of treatment or non-treatment (often difficult as the patient must decide amongst varied therapeutic options); 3. emotional and physical duress during active treatment; and 4. the follow-up period.
I urge all NHL patients to enquire whether their physician's office or treatment facility has an OSW. You will feel better having the benefit of the oncology social worker's warmth and expertise.
Mort
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