Targeted Information for
Patients With
Non-Hodgkins Lymphoma
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A reader who took RIT asked how long it works. The answer is no one knows for sure. Certainly some statistics are available from clinical trials, but there are many people who have taken it who aren't included in those statistics and who are not tracked.
I can hardly contain my enthusiasm when I share with all of you that I spoke with someone night before last who has been in remission for 10 - yes 10 - years after RIT!!!!! She had been diagnosed in 1985, relapsed after five types of chemotherapy, and finally found an RIT clinical trial at Stanford in 1996. There has been no recurrence whatsoever. This makes my own remission of 4 years look pretty short!
Regardless of what type of treatment we had, no one, absolutely no one, can predict with 100% certainty how long it will work. What is known by the medical community is that radioimmunotherapy has been shown to work longer than chemotherapy, but RIT is relatively new. Phase I clinical trials started just 15 years ago and the first RIT drug was approved only 4 years ago. Those of us who have taken it are trailblazers, and as each year passes and more and more of us remain disease-free, we will give scientists the long term data they need.
All of us who have had cancer wish we could know for sure that our treatment will work "forever." Instead, cancer forces us to face our own mortality and leaves us learning to coexist with certain uncertainty, a subject which has filled volumes. There are many good books about the psychological aspect of survivorship, but I will end with a short quote from my own:
"Today, Alex and I are still the same people we were before cancer invaded our lives. Only now, cancer is part of who we are and we look at life through a different lens. Yes, cancer changed our view of the world. Staring at death gave us a heightened appreciation for life. It challenged us to live fully the life that we have and forced us to pay attention to the present moment, which is all we really have and all that really matters."
Betsy
Physicians recognize the need for ever-continuing medical education. This recognition is based upon the rapid, even explosive, new information relating to diagnosis and treatment of disease.
There is, arguably, no area in medicine that matches oncology in the burgeoning of new and improved therapy. As one who has participated in an experimental clinical trial usiing radioimmunotherapy (RIT) as first-line (or front-line) therapy for non-Hodgkin's lymphoma, I feel that in some small way I have contributed to the education of oncologists.
More significant, perhaps, is the need for oncologists to attend and partiicipate in formal educational conferences in which leaders in lymphoma research present their latest data and opinions. Betsy and I, beneficiaries of RIT for Stage IV lymphoma, are vigorous activists in promoting lymphoma education.
Mort
I have just learned about a conference called "Improving Patient Odds: Radioimmunotherapy As Treatment For Non-Hodgkin's Lymphoma." It will be held at the Seminole Hard Rock Hotel and Casino in Hollywood, Florida on October 27, 2006 and will include presentations by a nationally recognized lymphoma physician as well as a lymphoma survivor and an oncology social worker.
I'll pass along further details as I receive them, but wanted to mention it as soon as I knew about it so that anyone who wants to attend this educational forum could plan accordingly. South Florida (my original home) is quite nice that time of year - the humidity has usually dropped and the crowds haven't descended, so for anyone looking for a vacation in October, it would be a great opportunity to enjoy some fun in the sun and to take advantage of this conference.
Betsy
I have read a most interesting comment and important questions from a lady who has a recurrence of T-cell non-Hodgkin's lymphoma.
I wish I had the medical expertise to respond in full fashion. Alas, I do not have that expertise. But, I do have the experience to answer in a personal fashion.
You must ask forthright questions of your oncologist. Ask if radioimmunotherapy has a role in your treatment. Ask if he/she knows of any clinical trials that deserve your careful review. If your oncologist does not know of any clinical study, go to the national cancer institute website at www.cancer.gov. Click on lymphoma and then type in T-cell lymphoma. I have gone to that website and have found a number of clinical trials that may be worthy of your investigation as you consider further treatment.
Mort
I'd like to add a postscript to Mort's entry about the cost of radioimmunotherapy. One of the best things about RIT is that patients rarely have side effects which require further treatment and which thus drive up the cost of care. In my own case, I spent 12 days in the hospital as a result of chemotherapy complications, not an inexpensive "vacation." I also took shots of Neulasta between treatments, and a single shot in 2002 cost $3,000. This was in addition to the cost of chemotherapy. All told, my expenses for the year I was sick totalled just over $200,000, not including radioimmunotherapy! (Thankfully, insurance covered nearly everything or we would have been in big trouble.) As you can see, RIT was a drop in the bucket, so to speak.
It is my understanding that the cost of radioimmunotherapy is less than chemo, but when you also add in the possibility of complications that chemo causes, it becomes significantly less. When you also factor in loss of work with months of chemo and potential complications versus a one week treatment with RIT, the net economic impact is even greater. Most important, I believe, is that RIT has been proven to be more effective and more gentle than traditional chemotherapy treatments.
I hope that insurers will soon realize that RIT saves money and that ALL doctors will soon realize that RIT saves more lives than any treatment in the history of lymphoma.
Betsy
A blog reader has asked an important question. What is the cost of radiloimmunotherapy (RIT)?
Firstly, RIT is not administered as the sole medicinal treatment for a lymphoma patient---it is given in conjunction with other medication, often chemotherapy.
Having said that, I think that a reasonable estimate is that therapy that includes RIT would cost approximately $25,000-$30,000. This cost is in-line with the cost of conventional lymphoma therapy that does not include radioimmunotherapy.
As one who had been told of incurable non-Hodgkin's lymphoma, Stage IV and now has no cellular or molecular evidence of malignancy, the cost of RIT was worth every penny.
Please forgive the repetition, but the cost of RIT was worth every penny.
Mort
First, just a reminder about the teleconference on Wednesday, August 23 from 12:30 to 1:00. Sign up at www.lymphomainnovations.com. There will be a webcast for about 10 minutes about treatment options followed by a question and answer period during which Dr. John Leonard and I will answer your questions. Dr. Leonard is the Medical Director of the Center for Lymphoma and Myeloma at New York Presbyterian Hospital - Cornell.
I also want to respond to a couple of reader comments. First, a reader with T cell lymphoma asked if there is an option other than chemotherapy for second line treatment. My understanding is that about 85% of the lymphomas are B cell and the remaining 15% are T cell lymphomas. Mort and I both had B cell lymphomas, and while I can't speak for him, I know very little about the treatment for T cell lymphomas - so it is difficult to answer the question. However, I would offer the same advice, and that is to research ALL possible treatment options, including clinical trials. The National Cancer Institute website is a great place to begin searching. The site is located at www.cancer.gov.
The second comment was from a reader whose doctor said "nothing can be done." Mort also responded to this comment, and I want to further assure the reader that "nothing could be done" is not the same as "nothing should be done at this time" which may refer to watchful waiting until treatment becomes necessary. There are many treatments available for lymphomas of all kinds, and as we have said many times, the newer treatments offer more hope than ever before.
Radioimmunotherapy specifically has been approved for four years now, and scientists are learning how to integrate it in the array of treatment options. There is growing enthusiasm to use it earlier in treatments for folllicular lymphoma, and I believe it is being tested on aggressive lymphomas, transformed lymphomas and other types as well. Again, check the clinical trials and ask your doctor about it.
Also, refer to Mort's entry of August 8 for telephone numbers to call for help in locating a physician familiar with RIT.
Betsy
I wish to respond to comments of two blog readers. (Please continue to offer your comments to Betsy and to me.)
Firstly, a reader stated that she is now in remission for 2 years after having received a seriies of CHOP infusions. The writer then added that Rituxan would be used for any recurrence, should it occur.
My response: advances in lymphoma therapy are occurring so fast, so dramatically, that one should not have any fixed thouight on medication that might be necessary in future treatment. If the need arises, then learn the latest, current ideas on therapy.
Secondly, a writer used the phrase, "nothing can be done", when referring to what, seemingly, is a new diagnosis of lymphoma.
My response: do not confuse, "nothing can be done" with "nothing (i.e., treatment) needs to be done". I, personally, am brimming with confidence that oncologists always have a therapeutic option.
Betsy and I have endeavored to promote confidence in both the newly-diagnosed patient and in the patient suffering from relapse. To us, radioimmunotherapy, has been dramatic in bring hope to the lymphoma patient.
Mort
Although Mort and I have both written about effective communication with your health care team, it's an important enough topic to continue discussion. Asking specific questions, rather than general ones, will help you make decisions. Here are some additional suggestions:
1. Bring a list of questions to your appointment. Asking "Will I be able to work?" or "Will I be able to play golf?" or "What symptoms and side effects should I expect?" will tell you more than asking "How will I feel?" Sometimes we are so overwhelmed that we simply ask, "What will happen?" That general question doesn't really tell your doctor what your concerns are. Be specific.
2. Take a friend or relative to the appointment so that he or she can help you understand and then follow through on what the doctor has discussed. And take notes so that you can refer to them later.
3. If your doctor drifts into "Medicalese," ask him or her, "What are you really saying? How does this affect ME?" Don't be afraid to speak up if there is something you don't understand.
4. Understand your treatment options very clearly. Ask your doctor to explain the pros, cons, risks and benefits of each proposed treatment.
5. Ask what treatment is now being offered that is state-of-the-art and where you can find it. A comprehensive cancer center may offer options that your doctor doesn't have available.
6. Ask how you can benefit best from treatment. As patients, we have a role to play, too. I would expect that your doctor would tell you to get plenty of rest, decrease your stress, exercise reasonably, eat right, etc.
7. Ask your doctor how and when test results will be reported to you.
8. Ask who is available between appointments to answer questions and when phone calls are returned.
9. Ask how many cases like yours he or she has treated in the past year. If you're not satisfied with the answer, ask who he or she recommends for a second opinion.
Your relationship with your medical team should be viewed as a partnership of individuals who have formed an alliance to attack a common enemy. As with any other partnership, you want the strongest possible partners with whom you can work to accomplish the goal in the most efficient, effective manner. But ultimately, you are in charge of your own decisions about treatments, and no one understands your life or has a greater stake in your health more than you. Thus it is important to become knowledgeable about your disease, to be inquisitive and to be proactive.
Betsy
Betsy has written, with keen insight, on the topic of differing--or, may I say, variant-medical opinions from competent physicians who have evaluated the same patient.
This is a common phenomenon. It is common because there are many diseases for which there is no singular, proven, best therapy.
Listen to the physicians; learn why they suggest a certain therapy. Then, select the therapy that is consistent with your creed. (Please refer to my blog entry entitled "My Creed" dated 5/12/06.). Betsy uses the warm phrase "your own level of comfort".
It should be clear to the blog reader that we are entirely in agreement on the "bottom line", namely, the basis upon which a patient makes a decision.
Mort
For new readers, this is a reminder that there are two upcoming teleconferences which provide great opportunities to learn more about radioimmunotherapy and other treatment options. They are:
Wednesday, August 16, from 1:30 to 2:30: The subject is whether radioimmunotherapy is right for you. Register at www.cancercare.org.
Wednesday, August 23, from 12:30 to 1:00: Dr. John Leonard will discuss treatment options and I will be available to answer questions. Sign up at www.lymphomainnovations.com.
Finally, as we all know, there are many different forms of NHL, some of which are rather uncommon. Readers have asked where to find information about their specific diseases, and I would start with the National Institute of Health, the American Cancer Society, The Lymphoma Research Foundation, or the Leukemia and Lymphoma Society. One or more of these organizations should have, or know who does, information about specific forms of the disease.
Hope everyone has a wonderful Monday!
Betsy
Betsy has written, most poignantly, of the emotional duress of having faced the diagnosis of a malignant disease and her subsequent therapy.
Again, I encourage lymphoma patients to seek out Oncology Social Workers (OSWs) who work primarily in the hospital setting, but may, as well, work in physicians' offices.
OSWs, clearly experienced in the emotional stress of patients, are expert in counseling the distressed patient. Their support braces the patient as he or she moves through the treatment phase and subsequent testing.
Further, the OSWs are skilled in providing more "concrete" advice relating to such important factors as transportation and, even, dealing with the expense of medication.
More oncologists should have OSWs in their private offices.
Mort
Last week, someone who has relapsed after four years called to ask what I thought she should do after getting a second opinion which disagreed with the first. This is always a dilemma. Does it mean that the first doctor is wrong? Or is it the second one? Most probably, they were both right.
In one sense, those of us who have NHL are "lucky" that there is an array of treatment options. In another sense, it's hard to know which one is the "right" one. Treating the disease is as much an art as it is a science, and two different doctors can have differing opinions and both can still be right.
If this happened to me, I would look at the credentials of both doctors and ask the following:
1. Who has treated the most NHL cases?
2. Is one a hematologist/oncologist, i.e., a doctor who specializes in cancers of the blood?
3. Has one or the other recommended a clinical trial?
4. Have they both included the latest treatments, such as radioimmunotherapy, as options? If not, why not?
5. Why is he or she is recommending one particular treatment over others?
6. Which treatment offers the best outcome, based on scientific evidence?
7. How does each treatment fit into my personal goals?
As new treatments are approved and make their way from research facilities into mainstream medicine, they sometimes take awhile to gain strong, solid footholds simply because it takes time to educate doctors about how and when to use them. In the case of radioimmunotherapy, it has been FDA approved for about four years, and it should, by now, be regularly mentioned to patients who might benefit from it. If you think you may be a candidate for it and your doctor doesn't offer it as an option, I would ask about it.
When two or more doctors recommend different treatments, it can be very disconcerting, but it doesn't necessarily mean that one is right and the other wrong. It usually means there is more than one way to attack the disease, and when faced with multiple options, you will have to keep probing for answers to find your own level of comfort. Ask, ask, ask......until you are satisfied.
Betsy
An important question: how does a patient find a physician who is skilled and experienced in radioimmunotherapy?
I offer the following suggestions:
1. call Biogen Idec customer service and ask for names of sites/practices in the your geographic
area (1-866-298-8433).
2. call Glaxo Smith Kline customer service (1-888-825-5249) with the same question
3. go to the website clinicaltrials.gov and search for radioimmunotherapy trials. Call that office and enquire about a
radioimmunotherapy consultation.
Mort
Mort recently wrote an entry about the effect of stress, and I wholeheartedly concur with him. Cancer itself places unimaginable stress on us, physically, emotionally and often financially, and we must somehow learn to cope with all the unexpected twists and turns after our diagnoses.
Shortly after I was diagnosed, I attended a support group at the hospital where I was being treated. At the time, I must have thought I was Superwoman because I didn't think I needed anybody, but I was curious to see what other patients looked like. Did they appear to be ill? Would they give me a glimpse into my own future?
That night, a psychologist who happens to be a friend of ours spoke to the group. He explained that depression is a common side effect of cancer, explained how to recognize it, and offered some advice on how to combat it. One of his ideas had a powerful impact on me. As an example of how powerful our minds can be, he proposed that if each of us were to write on a 3 x 5 card the 5 things about which we felt most guilty, and we were to look at that card every hour for a day, we would probably end up feeling pretty badly. Couldn't we also make ourselves feel better by reminding ourselves of positive things?
At home that night, I found a 3 x 5 card. Reasoning that I could at last manage my mental health even if I couldn't control my physical ailment, I wrote across the top of the card, "If you can worry yourself sick, you can think yourself well." I then wrote the names of all the people I loved the most , including the family and friends I most treasured. I tucked the card away, thinking that I would never need to look at a card to remind me of those special people.
By the end of the summer, after two relapses and several complications, I had fallen emotionally far more than I had ever dreamed I would. There were many times when I was sad, confused, and lonely that I pulled out the card and recalled happy memories with the people whose names appeared. As I struggled to find hope through months of uncertainty, I would stare at the names and find beacons of hope.
I would never have expected to need a little card like this. After all, my home is filled with photographs of all those people, and I see and talk with them often. When I first wrote the card, I frankly thought it was a silly idea, but as it turned out, this little reminder often helped to lift my spirits because I saw, in black and white, the reasons I had to fight back.
Maybe this could work for you as well.
Betsy
A patient who very recently received radioimmunotherapy for non-Hodgkin's lymphoma asked me how long it takes for the lymph nodes to shrink and, ultimately, disappear.
I can respond only based upon my personal experience and comments made to me by other patients.
My impression is that the nodes can "melt away" as quickly as 1-2 weeks after therapy or as long as several weeks.
Again, this is the comment of a patient and not an oncologist.
Mort
Cancer Consultants has a very informative website for patients with all kinds of cancers. There is some good information about NHL at http://patient.cancerconsultants.com/nhl_cancer_information.aspx.
Additionally, the most recently quarterly newsletter, at http://patient.cancerconsultants.com/Survive/index.aspx?type=hem&menu=37476&id=37475, discusses radioimmunotherapy, a new clinical trial, Vitamin C, and much more.
These two sites will provide more valuable information than I could possibly write, so this entry is short in hopes that you'll take the time to visit these links.
Betsy
A patient who is diagnosed with a malignant disease must make every effort to reduce stress in his or her life.
In our society, everyone faces stress, whether it be at work, at home, or financial in character. Stress, with its attendant anxiety or depression, is destructive, for it erodes the body's immune system that is so important in battling malignancy.
Most cancer patientts, when speaking to their physicians, only relate physical symptoms and do not burden the physician with complaints of psychosocial stress. While this may appear understandable, this is not promoting one's recovery.
A patient would help himself or herself greatly by taking the bold step to discuss emotions, if not with the physician, then with an oncology social worker who has the training and competence to be of great assistance.
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