Targeted Information for
Patients With
Non-Hodgkins Lymphoma
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Betsy and I are inveterate in expounding on the same message:
1. radioimmunotherapy (RIT) is a well-tolerated and highly effective therapy in the
treatment of many patients who have lymphoma and
2. lymphoma patients must be their own advocates and insist upon a consultation with a
physician who is experienced in RIT, namely, a radiation oncologist or nuclear medicine
physician, before deciding upon a treatment plan.
Then, I think, is this message becoming "stale"?
When I read Betsy's very recent blog entry telling of patients who were spared stem cell transplantation and are doing well after RIT, I know that our message is never stale. Rather, it is fresh and must continually be repeated.
Mort
I'm sure I speak for Mort when I say that we welcome the new readers who have written to let us know that they have joined us, though I always hesitate to use the word "welcome." Truth is, no one wants to be reading about lymphoma or any other kind of cancer, and we'd rather not have had our experience to write about, but here we all are, connected to one another.
For the new folks, I just want to take the opportunity to encourage you to send your questions and comments any time you have them. They will never be published, but we will answer you. While every situation and person is unique, Mort and I do understand what having this disease means and we are here to help, support, and encourage as much as we possibly can.
Watch Monday for updated treatment guidelines....
Betsy
Preceding my participation in this blog I was amazed, surprised---even a bit perplexed---how "word got around" that I had received experimental treatment for my non-Hodgkin's lymphoma. (Experimental therapy, in my case, was receiving Zevalin radioimmunotherapy as front-line (first-line) therapy for the malignancy.)
For over 4 years now, I have received innumerable phone calls and emails from patients, near and far, with cancer. Not just lymphoma, but cancer of the pancreas, colon, ovary to name a few. I could not respond to these callers with medical expertise, but I did try my best to offer suggestions, to help patients to ask the proper questions of their physicians and to direct patients to recognized specialists.
With this blog, the contacts from patients has dramatically increased. This does not bother me; rather, I am delighted to respond.
When "word gets around", it means that patients are learning more and more of the efficacy of radioimmunotherapy (RIT). It means that patients are insisting on consultations with physicians who are expert in RIT before deciding on individual treatment plans.
This is terrific.
Mort
Earlier this year, I spoke with three patients who had relapsed and needed additional treatment. All believed they were candidates for RIT and wanted to find out if it was an option for them, but their doctors were recommending additional chemotherapy in one case and transplants in the other two cases. RIT was not offered as an option. Even when they asked their doctors, it was not recommended.
All three patients lead busy lives and had no intention of undergoing months of risky, unpleasant treatment if another option were available - and so they persisted in finding out about RIT. All three have now taken it. In each case, they were back to leading their normal busy lives a couple of days after treatment.
I am pleased to report that the first patient just received the results of his first scans and they show no evidence of disease. As he says, "My tumors melted away." The second patient just had her first scans this past week and awaits results. The third will soon have his, but feels confident that all is well since he can feel no swollen nodes.
Each of these patients had to "work" to find out about RIT. One managed to convince his own doctor to use it, but the other two had consultations with oncologists at universities who are experts in RIT. These experts then coordinated the treatment with the patients' own oncologists.
It shouldn't be so difficult for patients with any type of illness to learn about all options, but sometimes it is. In the case of these patients, they would be undergoing months of miserable treatment had they not persisted in learning about RIT.
As Mort and I have said many times, you are your own best advocate. If you think you may be a candidate for RIT, it is worth having a consultation with an oncologist who is experienced with it, and that may involve some travel, but the expert can coordinate treatment with your local oncologist.
If you are having trouble finding an expert, don't hesitate to let Mort or me know. We'll try to help in any way we can.
Betsy
I have received an email from a blog reader who told me that, in response to his question, his oncologist said that radioimmunotherapy (RIT) could only be taken one time. The next step would be stem cell transplantation.
In a recent blog entry I mentioned that I consulted with experts and was told that selected patients can, and have successfully, received RIT a second time.
Obviously, oncologists who are intelligent persons may be ignorant on this important item. I suspect that one element of the ignorance is the fact that medical oncologists do not administer RIT themselves; therefore, there is not the incentive to be fully knowledgeable on the subject.
I keep returning over and over again to a basic theme. The lymphoma patient must insist upon a consultation with a radiation oncologist or nuclear medicine physician in order to get the most up-to-date and comprehensive information.
Mort
As those of you who have been reading this blog know, there has been a recent flurry of articles about RIT. I just learned that another reporter is writing an in-depth story on the subject. Hence my second entry for today.
The reporter asked me to help him find patients who have had difficulty finding out about the treatment, i.e., patients who may have had to change doctors to learn about it or whose oncologists have recommended treatments other than RIT, have not suggested it or who otherwise have seemed to put up roadblocks.
It is understandable that no one wants to speak against his or her oncologist and the reporter can keep your identity anonymous. If any of you have had an experience and are willing to discuss it, please reply to this entry as soon as possible. The reporter is working on a deadline next Tuesday.
The inclusion of personal stories will make the article far more compelling. This is a wonderful opportunity to help shed some light on RIT's underutilization and perhaps even help to turn it around. Please share your story if you have one.
A million thanks,
Betsy
The administration of RIT can appear to be complicated, and I hope this will simplify the roles of various medical professionals.
Quoting from the Zevalin website, "Coordination and timing of the entire Zevalin therapeutic regimen, including administration of Rituximab, preparation and administration of IN-111 Zevalin (the trace dose) and Y-90 Zevalin (the full dose), evaluation of gamma camera images, patient education and treatment follow-up, are essential for successful administration of the Zevalin regimen. Treatment requires the involvement of a number of health care professionals, including the medical oncologist/hematologist, the nuclear medicine physician or radiation oncologist, the oncology/hematology nurse, the nuclear medicine or radiation oncology nurse and/or technician and the nuclear pharmacist." The website goes on to say that patients should be monitored with weekly CBC's including platelet count, until levels are normal.
The Bexxar regimen is similar, with the addition of a pre-treatment for thyroid protection which is prescribed by an oncologist who refers the patient to a nuclear medicine physician or radiation oncologist. The oncologist and nuclear medicine physician or radiation oncologist are instructed to discuss the patient's eligibility for the treatment. Once treated, the nuclear medicine physician or radiation oncologist is instructed to refer the patient back to the oncologist for post-treatment follow-up (including weekly CBC's and treatment for any side effects which may arise).
If all this sounds confusing, it really isn't. Oncologists routinely refer patients who have masses for external beam radiation and so they are accustomed to coordinating treatment with other physicians. Administration of RIT simply takes a team effort, and it is no more difficult than coordinating other treatments. It's a smokescreen if anyone tells you otherwise.
Betsy
A few days ago Betsy listed some pithy and humorous quips---apothegms--- for living. They are wonderful.
One that particularly caught my attention is "Resistance is futile when it comes to chocolate". That made me think of the witty remark of the playwright Oscar Wilde who wrote, "The only way to get rid of a temptation is to yield to it".
Indeed, we lymphoma patients must change our attitude toward this disease. We must not think of it as the "end of the world", but rather as a chronic disease with which we can live.
And live we must, to the fullest.
Mort
Hardly a week passes that I don't hear from someone who is newly diagnosed. Sometimes it's lymphoma. Sometimes it's another type of cancer. Always, it's painful. But I've also heard some wonderful stories of the love that cancer draws out in many people. Strangers say prayers and friends shave their heads in solidarity, bring meals, cut lawns, and send funny cards.
I recently ran across some notes and cards friends have sent me over the years and thought the following were worth sharing:
Life isn't fair but it's still good.
Make peace with your past so you don't screw up your present.
Life is too short to waste time hating anyone. Make peace.
When in doubt, just take the next little step.
Life is too short for long pity parties. Get busy living.
However good or bad the situation is, it will change.
Envy is a waste of time.
Life isn't tied with a bow but it's still a gift.
Resistance is futile when it comes to chocolate.
Don't take no for an answer when it comes to going after whatever you love in life.
Burn the candles. Sleep on the nice sheets. Wear the fancy lingerie. Don't save these for a special occasion...because today is the most special day of all.
Betsy
Betsy has written of a patient who recently received Bexxar as front-line therapy in the treatment of lymphoma.
Firstly, what does "front-line" mean? Simply, the patient has not received any prior therapy for his or her disease. Front-line therapy is the first therapy.
Secondly, one must be cognizant that Zevalin and Bexxar are approved for therapy of recurrent or resistant lymphoma.
Thirdly, and importantantly, while these agents are not formally approved by the Food and Drug Administration for front-line therapy, nonetheless, they may be used ETHICALLY AND LEGALLY by radiation oncologists and nuclear medicine physicians as front-line therapy.
Why?
The US Food and Drug Administration regulates and controls new drugs that may be used by physicians. These controls include the medical indications for which a medication may be used. Since Zevalin and Bexxar are approved drugs for treatment of lymphoma, the physician may use these agents "OFF-LABEL" meaning that the physician has judged that the indication for the medicine extends to front-line therapy.
Off-label use of medications is common and long-standing in medical practice. One of the most important medicines in the treatment of heart attacks was used for years in off-label fashion.
I, personally, in early 2003 received Zevalin (with wonderful results) as front-line therapy in an experimental clinical trial. Today, a patient may receive Zevalin "off-label" as front-line therapy if the treating physician and patient agree to this therapeutic plan. The patient need not enter an experimental clinical trial.
Again, off-label use of radioimmunotherapy is both ethical and legal. Newly diagnosed patients should consult with a radiation oncologist or nuclear medicine physician to learn whether front-line therapy is a prudent option.
Mort
In my last entry, I wrote about the update of Dr. Kaminski's study using Bexxar as front-line therapy. As Mort and I have said, both Zevalin and Bexxar are approved as a second line therapy, and I was not aware of any front line usage outside of clinical trials.
However, on Sunday, June 3, there was an interesting article in the Fort Worth Telegram about a man who, according to the article, is the second person to receive Bexxar as front line therapy outside of a clinical trial. It's a wonderful article and I recommend you read it at: www.star-telegram.com/news/story/123890.html. I chuckled at the beginning of the title: "Weird Science...." and the drug's description as experimental. I suppose in the beginning that anything new and different does seem weird, but RIT has now been studied for 16 years and FDA approved for 5. "Experimental" and "weird" no longer apply.
As for the off label use, many drugs, including many which are commonly used for lymphoma treatment, are used off label, i.e., prescribed for uses other than that for which the FDA has approved them, but RIT has hardly been prescribed for its approved use, much less off label, so I was very surprised and pleased to read this article.
Hats off to the oncologist who was clearly familiar with the impressive data on RIT and who chose to recommend a one week treatment to his patient rather than a prolonged treatment over several months. If we had more doctors like him, many more of us could avoid months of treatments and unpleasant side effects....and potentially achieve longer, more durable remission periods.
But sadly only 5 to 10 percent of patients eligible for RIT are getting it. Here's a link to an article I wrote for our local paper, The Ann Arbor News, which was published on Sunday June 10 and which discusses the reality of RIT's use:
http://www.mlive.com/annarbor/stories/index.ssf?/base/news-0/1181458985115390.xml&coll=2
Betsy
Betsy and I have received many complimentary notes from blog readers in recognition of our efforts in this blog. For your comments, we are most appreciative.
So often we have learned of patients who have relapsed lymphoma and who have been advised to receive serial chemotherapy treatments or maintenance Rituxan infusions or to undergo transplantation. Sadly, so very often these patients have not been told by oncologists of the efficacy and the easy-tolerability of radioimmunotherapy (RIT).
In part related to our efforts, many patients have avoided the recurrent infusions of CHOP chemotherapy and Rituxan; rather, they have received RIT with wonderful results.
Our immense satisfaction is in helping fellow lymphoma patients regain their health and maintain vigorous function and, at the same time, avoid toxic and protracted treatments.
Our message is simple: the lymphoma patient must take the initiative and have a consultation with a physician who is an expert in RIT, a radiation oncologist or nuclear medicine physician, in order to learn whether this treatment modality is appropriate for him or her.
Mort
The American Society of Clinical Oncologists (ASCO) held its annual meeting weekend before last and much good news came out of it. The most encouraging news about RIT came from Dr. Mark Kaminski, Professor of Internal Medicine at the University of Michigan and the developer of Bexxar.
In 1996, Dr. Kaminski initiated a clinical trial using Bexxar as front-line therapy. 76 patients with Stage 3 or 4 follicular lymphoma were enrolled.
At ASCO this year, Dr. Kaminski updated the results of that trial, and he reported that 75% (59 patients) achieved a complete remission with the treatment. 64% of those patients have remained in continuous, complete remission and the median for their progression free survival is now being reached at 9.2 years.
Additionally, no cases of MDS (Myelodysplastic Syndrome) or AML (Acute Myelogenous Leukemia) have been observed. This is particularly significant because conventional cancer treatments - namely, chemotherapy - can cause these secondary cancers.
In human terms, this trial meant that one young mother was spared months of chemotherapy and its potential complications. Teresa was diagnosed in July 1996 when her boys were just 2 and 7. Today, she is a yoga studio owner here in Ann Arbor, where I also live.
Teresa and I met for lunch a few months ago and she told me about her experience. "I was fortunate to have been at the right place at the right time," she said. Dr. Kaminski happened to be her doctor, and he told her about the clinical trial using a new drug (which was not yet named). Teresa's husband, a scientist himself, thought that the drug's science made perfect sense because it specifically targeted the cancerous cells.
Two months after Teresa's diagnosis, in September 1996, she took the drug. Four days later, she went back to work. Teresa told me that she is so grateful that her sons never had to watch her undergo months of chemotherapy. Two injections, a week apart, made her tumors disappear and she has remained healthy all these years.
And so this maturing data continues to prove that many patients can potentially achieve long, continuous remission periods with a one week treatment - and who wouldn't want to avoid more prolonged and more toxic treatments if given a choice?
Betsy
I have just received an interesting email from a blog reader. He states that 3 months after having received radioimmunotherapy (RIT) his lymphoma showed evidence of relapse.
His question: "Can a patient receive RIT more than one time?". I have checked with experts and the answer is "Yes". Patients have received RIT more than one time with excellent results after the second dose of the radioimmunotherapy.
I am not knowledgeable to explain why this may occur. My suggestion is that the patient who asked this important question obtain a consultation with a radiation oncologist or nuclear medicine physician, both of whom being experts in RIT. I urge the patient to get this consultation before getting on a pathway of more and more chemotherapy or, even, maintenance Rituxan.
Mort
This entry will be short and sweet because Dr. Oliver Press has much more important information than I do. Dr. Press, of the Fred Hutchison Cancer Center, chairs the Lymphoma Research Foundation's Advisory Board. He is also one of the world's foremost lymphoma experts and was recently interviewed in an LRF Newsletter (see my entries on April 30 and May 3).
This past February, Dr. Press spoke to fellow oncologists about Bexxar and Zevalin at the International Conference on Hematologic Malignancies in Whistler, B.C., Canada, and I've just learned that his comments, together with his slide show, are available online. The link is:
http://www.hememalignancies.com/lecture/whistler_2007/media/50_press/50_press.html
It's rare that we patients have an opportunity to hear a presentation by a renowned physician to his colleagues, but Dr. Press presents valuable information and I encourage you to listen to what he has to say. It's quite interesting indeed.
Betsy
I have received an email from a blog reader who asks an important, exigent question. She reports that she was initially diagnosed approximatedly 1 1/2 years ago with stage IV follicular lymphoma. Initial treatment was with Rituxan and CHOP as part of a clinical trial.
Now, there is evidence of relapse. The big question, "Should I look for another clinical trial?"
My response: While I am a great advocate of patient participation in clinical trials, I suggest that this patient obtain a consultation specifically related to radioimmunotherapy (RIT). Have the consultation with a radiation oncologist or nuclear medicine physician.
There is now sufficient data on the efficacy of RIT that this patient should---I would say, must---find out whether RIT is appropriate before entering another experimental trial.
Mort
I promised to share another story or two about people who have taken RIT. This entry is about a man named Jeff who was diagnosed with stage IV follicular lymphoma in August 1998. His doctor recommended watch and wait, but Jeff was uncomfortable with the thought of doing nothing. Instead, he wanted to attack the disease. He sought a second opinion at Dana Farber and there the oncologist mentioned some new treatments that were in clinical trials, and they sounded far more promising than conventional therapy. Still, Jeff was told that he had plenty of time decide on a treatment plan but he was still uncomfortable waiting.
Two months after his diagnosis, in October 1998, one his friends called and told him to turn his TV on to Dateline. Robert Bazell was doing a piece on a revolutionary new treatment for NHL called Bexxar. (Bazell interviewed Bexxar's developer, Dr. Mark Kaminski, as well as two patients who had taken the drug in clinical trials). When the piece was over, Jeff turned to his wife and kids and said, "I'm gonna get that."
That was easier said than done. The drug was still in clinical trials and most of them accepted patients who had already had at least one treatment. Jeff had had nothing. Undaunted, he searched diligently until he found a Phase 3 trial using a combination of 3 cycles of fludarabine followed by Bexxar. And it was Jeff who convinced his oncologist that he wanted to participate in the trial.
In February 1999, Jeff's local oncologist treated him with the fludarabine. In June, he went to the Cornell Medical Center at Presbyterian Hospital in New York for the Bexxar treatment. In September, he learned that he had achieved a complete clinical and molecular remission.
Today, Jeff remains active and healthy and has never needed additional treatment.
Jeff's advice is sound: "Consider your situation unique and a story unto itself that is not destined to follow the conventional path suggested by the clinical community or statistics. Lance Armstrong's story proves that in spades."
And Jeff, my friend, so does yours. Your 8-year disease-free life shines as bright beacon of hope for all of us.
Betsy
Betsy has written, with her passionate skill, of her rigors while receiving chemotherapy for her advanced non-Hodgkin's lymphoma. Finally, she received radioimmunotherapy (RIT described as "fast and easy".
I think back of my Zevalin RIT for stage IV non-Hodgkin's lymphoma (NHL). No nausea, loss of appetite, vomiting. In fact, I did not lose a single day of work save the days that I went for follow-up visits with my radiation oncologist. And best of all---a superb response with no evidence of disease 4 years after treatment.
I remind the blog readers that I received Zevalin as front-line (first-line) therapy. For those patients who have advanced NHL and have not received any earlier treatment, speak with an expert in RIT---a radiation oncologist or nuclear medicine physician---about the efficacy of RIT in "off-label" use.
Mort
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