Targeted Information for
Patients With
Non-Hodgkins Lymphoma
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A blog reader has posed an interesting and important question concerning potential long-term effects of RIT.
I am responding as a patient, for I am not an oncologist.
Does RIT harm natural immunity? Personally, I have never heard of such an effect of RIT.
Can RIT harm the bone marrow? Certainly, RIT does affect the normal blood elements in the bone marrow when there are malignant lymphoma cells also present in the marrow. As the RIT kills the lymphoma cells, the low-dose radiation does have an effect on the normal marrow blood elements amidst the cancer cells.
Thus, right after my RIT dose, my hemoglobin, white blood count and platelet count all dropped. However, these blood factors all returned to normal without the need for any transfusion or medicinal treatment.
Further, there have been, to my knowledge, rare reports of permanent damage to the bone marrow and, even leukemia related to RIT. The complicating factor, of course, is that these patients have also had other lymphoma treatment, including chemotherapy.
In sum, the blog reader does pose an important question. I beleve that the potential life-saving value of RIT far outweighs the potential, but real, risk. We must be knowledgeable that every therapy in the treatment of human illness has risk. The benefit-risk ratio is a key element in every physician's treatment recommendation.
Mort
Last November, a study appeared in Blood Magazine which I thought was quite interesting. It was done by several researchers at the Sunnybrook Health Sciences Center in Toronto and its aim was to assess the impact of diagnosis on indolent lymphoma patients' productivity.
Prior to diagnosis, 61% of the patients were working full-time and 14% were retired. Following diagnosis and at the end of the study, only 33% were able to continue working full time; 37% had retired; 7% were working part-time; and 10% required disability. Those who still worked full time missed an average of 2.1 days during the preceding 4-week period. Additionally, caregivers missed an average of 11.3 days of work during the term of the study.
The researchers concluded that "many were unable to continue full time employment, needed to miss days from work due to illness, or imposed a significant burden on caregivers. The greatest impact on productivity is apparent in patients...who are currently receiving systemic therapy."
This study proves that months-long chemotherapy treatment diminishes patients' and caregivers' ability to work. I wonder what a study of RIT patients would reveal. A very different conclusion, I suspect.
Because RIT is given in two doses a week apart and side effects are minimal, patients can return to work immediately. This is just one more benefit of the treatment.
Betsy
In the nine months that this blog has been functioning, I have been contacted by many, many patients (or their family members). These contacts have essentially been of two types: 1. questions concerning the potential applicability of radioimmunotherapy (RIT) in individual cases or 2. enquiring of the name of a physician experienced in RIT who practices in the patient's geographic area.
Over these months, I have gladly responded to enquires from all over the nation. In a few cases, I have received continuing messages of the status and progress of these fellow lymphoma patients. For this I am grateful.
To the many of you who have not kept in touch with me, would you kindly consider bringing me up-to-date on your status and, also, whether you have received radioimmunotherapy?
It is only through our being unified that we can have a vigorous, forceful and effective voice to promote RIT as an option in lymphoma therapy.
Mort
I agree with Mort that there are many new readers to the blog who may not be familiar with our personal stories and so I will share mine.
In January 2002 I was diagnosed with follicular lymphoma and treated at the University of Michigan. At the time, both Bexxar and Zevalin were under FDA review and so I began treatment in a clinical trial whereby I would take eight rounds of CVP followed by a vaccine six months later. After two CVP treatments, it was clear that the disease was not responding and so my participation in the trial ended.
Next came CHOP plus Rituxan, but after five of the planned eight treatments, my disease roared back with a vengeance. So chemo did little more for me than deprive me of my hair, send me to the hospital with numerous complications and help me to forget what day it was. On the bright side, chemo bought enough time for Zevalin to be approved and that is what ultimately saved me. I have now been disease free since September 11, 2002.
Since my recovery, I wrote a book about my experience entitled "The Roller Coaster Chronicles." At the risk of sounding commercial, the book is available on amazon, but it is also available on my own website which is www.lymphomabook.com. Proceeds from website orders are donated to immunotherapy research.
I have also spoken to various groups around the country, and it has been humbling and rewarding to hear from patients either from this blog, the book or the talks. I know how lucky I was to have been in the right place at the right time and to have had a doctor who never hesitated to use the best tool he had.
Mort and I both share our experiences with the hope that others will have the same chance that we did. We know that RIT is seriously underutilized and our goal is to share useful information so that you might find out if it is right for you.
I live in Ann Arbor, Michigan (where it is STILL cold!) with my wonderful husband Alex. We own a homebuilding company where I am responsible for the marketing and sales. I have a daughter, two grandchildren and a cat who regularly sits in my lap as I write the blog.
Wishing you all well,
Betsy
Since this blog is now nine months old, I think it would be appropriate for me to again outline my personal story having non-Hodgkin's lymphoma. Certainly, there are many new blog readers who are unaware of how I have become such a passionate advocate for radioimmunotherapy.
In December 2002, while asymptomatic, I was diagnosed with B cell, follicular, non-Hodgkin’s lymphoma, stage IV. Told that my disease is incurable, I searched for an experimental clinical study protocol as first-line treatment for my disease. I was most fortunate that my son, David, a radiation oncologist, could assist me in this effort. We found a study based at the Sarah Cannon Cancer Institute in Nashville, TN.
Over a period of 5 months I received Rituxan, CHOP (cyclophosphamide, doxorubicin, vincristine, prednisone) and Zevalin. Treatments were taken at Florida Hospital Orlando, the closest facility to my home. Now, 3 1/2 years after therapy, there is no evidence of recurrence. The oncologists, in their medical jargon, tell me that there is no cellular or molecular evidence of lymphoma in my body.
Since diagnosis, I have been a vigorous advocate for patients with non-Hodgkin’s lymphoma. I sress the need for patients to assume an active participation in their treatment options and to insist on consultation with a physician experienced in radioimmunotherapy. In addition to speaking to many patient groups, I have made television commercials on radioimmunotherapy.
I am a retired cardiologist and am now a professor at Nova Southeastern University in Fort Lauderdale, FL. My wife, Louise, and I have 3 children and 3 grandchildren.
Mort Diamond
The Leukemia and Lymphoma Society is sponsoring a teleconference from 1:00 to 2:00 pm EST on Wednesday, February 28. Entitled, "Lymphoma: Understanding the Role of Targeted Therapies," the program features Dr. John Leonard, Associate Professor of Medicine, Weill Medical College of Cornell University and Clinical Director, Cornell Center for Lymphoma and Myeloma in New York.
Dr. Leonard is an expert on targeted therapies including Bexxar and Zevalin. This is a great opportunity to hear him talk and to ask him questions at the end.
This is a free teleconference, but you do need to register either online at http://www.rmei.com/lymphoma or by calling the Leukemia and Lymphoma Society's Information Resource Center at 1-800-955-4572.
Betsy
On January 19, 2007, I wrote of a friend---and fellow lymphoma patient---who described himself as a "gradualist" in terms of selecting treatment options for treatment of the disease.
Several weeks ago he received radioimmunotherapy (Zevalin) and, to his delight (and mine), the enlarged lymph nodes that have been evident for years (despite repeated chemotherapy infusions) quickly disappeared and are no longer felt.
Two to three weeks from now, he will undergo imaging studies. With my "fingers crossed", I am hopeful that radioimmunotherapy will produce another superb result.
Mort
I can't speak for Mort, but I can tell you that I know more about RIT than I do about computers. We could never figure out how to post comments on the blog, although many of you have made them and we have tried to answer them by saying, "A reader has asked about...."
Healthology was good enough to give us a crash course in how to post your comments, and I think it's a great opportunity to share thoughts and experiences with us and other readers. In other words, let's get a dialogue started about the issues that matter to you.
Let's start with another informal survey. We'd love to hear:
1. If you've taken Bexxar or Zevalin, what was your experience?
2. Did your doctor offer RIT as a treatment option?
3. If not, did you ask your doctor about it and what was his or her response?
I'll be out of town til Monday, February 19th so I won't post anything for the first few days after this entry, but will certainly look forward to seeing your comments when I return. We're going on a business trip, but thankfully it's south and I can hardly wait to thaw out! Michigan has been in the deep freeze!
Betsy
In Betsy's entry, Ms. Jessie Gruman writes "...you may have more choices than you realize", referring to prospective treatment options for any disease.
This is exactly what Betsy and I have been exhorting. You, the patient, may have more treatment options than suggested to you by the medical oncologist. The medical oncologist often does not speak of radioimmunotherapy (RIT) when outlining treatment options to the lymphoma patient.
Therefore, the patient has the responsibility to insist on a consultation with a physician who is an expert in RIT---a radiation oncologist or nuclear medicine physician.
Jessie Gruman, President of the Washington-based Center for the Advancement of Health, wrote a very interesting article in the Washington Post on February 6th. Four times in her life, Jessie was diagnosed with life-threatening diseases. As she says, "Each time, the news stopped me cold...it forced me to rearrange my life and rethink my responsibilities while my body was battered with drugs and surgery." Clearly, Jessie understands what each of us has faced.
Her own experience as well as the hundreds of others with whom she has talked has taught her that people "are remarkably resilient once they gather the information they need to reconstitute their immediate futures." She further acknowledges that "people have very different ideas about how much they want to know about their diseases," and she quotes Suzanne Miller, a psychologist at the Fox Chase Cancer Center, who found that people are divided into two groups: Blunters, those who have little interest in seeking out information, or Monitors, those who track down the details.
Jessie suggests that whether you or a blunter or a monitor, there are "4 main reasons you need a basic understanding of your disease and its treatment." The following are quotes from her article:
Collecting information allows you to make decisions that are right for you. You can say yes or no to a doctor's recommendations, but you need some basic knowledge to be able to serve your own best interests.
You need a mental model of what is happening to you. Until you have one, it is difficult to make sense of the actions you must take to participate in your treatment.
You need to realize that what doctors consider state-of-the-art treatment in Connecticut may be very different from what doctors recommend in the Washington area. This means you may have more choices than you realize.
The fourth reason you need to know about your condition and its treatment is that you - and probably your partner or family member - will need to keep a vigilant eye on your care. Most patients do not have access to an electronic record that includes their entire health history, test results and treatment plan. Each new doctor and institution you visit may have to piece together the information that is relevant to your care. It is common knowledge that such decentralization can lead to mistakes.
The article went on to state that "blunters attempt to keep anxiety at bay by avoiding details that might be frightening...Monitors are uncomfortable with the unknown. Then tend to gain confidence as they gain understanding, even though the monitoring style can rouse anxiety. "
Jessie sums all this up nicely when she concludes, "In the end, whether you prefer to learn a lot about your disease or only the bare minimum, you need to know enough to make choices that are consistent with your preferences, that honor your values and that allow you to move forward, confident that you have made the right decision for you."
I couldn't have said it better. The fact that you are reading this blog suggests that you are a monitor, one who wants to find out all possible options. As Jessie says, you may have more choices than you realize. And there is no time in our lives when it is more important to find out what those choices are. As Mort and I have repeatedly stated, radioimmunotherapy is terribly underutilized in mainstream oncology. It may be a choice that has not been presented to you. If you need help finding a physician who will discuss it with you, please let us know.
Betsy
An interesting and important question from a blog reader (I am paraphrasing): If lymphoma is caught early, does chemotherapy help?
Responding as a patient: yes, chemotherapy does help, but data suggest that the remission is relatively short-lived and the patient requires further therapy. I suggest that this is not the proper question to ask. Rather, ask, "What is most effective therapy in effecting a long-term remission (may I even suggest the word "cure")?". To this latter question, I am convinced that radioimmunotherapy is superior to chemotherapy. In her most recent entry, data offered by Betsy supports this view.
Get that consultation from a physician who is experienced in giving radioimmunotherapy!
Mort
Mort is absolutely correct that Zevalin is still available. The manufacturer dismanteled its sales force at the end of 2006 and is currently offering the drug for sale. Until another company purchases it, the drug is available to physicians, and patients can still call the toll free number to obtain a list of facilities where it is used.
Neither Bexxar nor Zevalin were commercially successful because they simply weren't embraced by medical oncologists as the important tool that they are. It is one thing to make a drug that works well for patients, but the free market system in America is driven by profit, and when a drug isn't profitable - well, the company makes a decision.
In the short term, the sale of Zevalin may give oncologists one more "reason" not to use RIT, but in the long run, a new owner may be able to give it just the boost that it needs to perform within the marketplace.
In the meantime, I have heard from very reliable sources that GSK remains committed to Bexxar. So for now, both drugs are still available.
Betsy
Several days ago, I wrote that the manufacturer of Zevalin has ceased marketing and promotion of the medication. I did not say that production was halted. This is a most important distinction.
A few blog readers have assumed, based upon my above statement, that Zevalin is no longer available. This is not the case.
However, Betsy and I have declared on numerous occasions that radioimmunotherapy (Zevalin and Bexxar) is terribly underutillized---that there are many patients who could benefit but have not received either of these medications. Our fear is that continued underutilization may result in the pharmaceutical manufacturers taking a closer, more critical view of these agents.
Thus, Betsy and I continue to exhort lymphoma patients to obtain a consultation with a physician who is an expert in radioimmunotherapy---a radiation oncologist or a nuclear medicine physician.
Mort
Mort's last entry was much too flattering. He is just as indefatigable as I am! And he has the added gift of conveying his ideas in two sentences while it takes me twenty!
He and I do what we do because we were the beneficiaries of an effective treatment - radioimmunotherapy. In my case, at least, it is highly doubtful that I would be alive today had RIT not become available and had I not had a great doctor who never hesitated to use it.
Both Mort and I are deeply saddened by the fact that RIT has been so underutilized. Thousands of patients are taking more invasive and possibly less effective treatments when they could be taking a proven, one-week treatment.
At the ASH (American Society of Hematologists) meeting last December, there was an analysis presented which can be seen at http://www.abstracts2view.com/hem4806/view.php?nu=HEM06L1_4811. If you can't click over, following is the summary:
Several researchers analyzed trials performed between 2001 and 2006 on 2,421 previously untreated follicular NHL patients. The percentage of patients who achieved complete response rates are shown with various therapies (remember, these drugs were used as the first treatment):
37% with Chemo (including several types without the addition of fludarabine)
53% with Rituxan plus Chemo (including several types without the addition of fludarabine)
68% with Fludarabine
79% with RIT
The researchers stated: "The analysis suggests that a higher CRR (Complete Response Rate) is correlated with a lower hazard of disease progression." In other words, the achievement of complete response predicts a longer, more durable remission.
There is an impressive body of data which supports these findings - that RIT is more effective when used earlier in treatment rather than after several types of chemotherapy have failed. And that is the message Mort and I want to spread to the thousands of patients who might benefit from it.
And oops - I think I wrote even more than 20 sentences!
Betsy
I am in a bit of awe of Betsy, my blog co-moderator.
Never have I seen a person so passionate, so enthusiastic, so zealous, so untiring, in pursuit of a goal. With boundless energy, Betsy is, ceaselessly, enmeshed in lymphoma---iIncreasing her knowledge of the disease; fund raising; communicating with and comforting lymphoma patients; speaking with nationally-recognized medical experts.
Betsy's goal is to educate every lymphoma patient of the important, even potentially life-saving role, of radioimmunotherapy.
Betsy, we are all beneficiaries of your indefatigable work. Thank you.
Mort
For those of you looking for in-depth information, there is a wonderful website at www.lymphomation.org. It is run by a man named Karl Schwartz who is president of Patients Against Lymphoma, an advocacy group which provides patient perspectives, education and support.
Karl regularly updates the site with the results of new trials and studies and just recently posted an article about a company which has developed a diagnostic test to help doctors predict whether a patient will respond to Rituxan.
He also runs a Yahoo group which I recently learned about. If you go to yahoo, look under Groups and then type in lymphoma. There are several sub-groups for differents types of lymphoma. You will have to register, which I did a couple of weeks ago, and I have been amazed by the emails that have come to me about a variety of issues and types of lymphoma. The number of messages is not overwhelming, but the questions and answers are very insightful.
Information empowers us to make informed treatment decisions. It enables us to captain our own ships as we navigate the troubled waters of NHL, but it is important to find accurate information. These two sources may be helpful.
Betsy
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