Targeted Information for
Patients With
Non-Hodgkins Lymphoma
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I have received a blog comment from a reader whose daughter has recurrent T cell lymphoma.
Unfortunately, since I am not an oncologist and specifically not a lymphoma specialist, I admit to knowing nothing about T cell lymphoma. I can only urge this lady to seek advice from a lymphoma specialist.
My lymphoma was non-Hodgkin's, B cell, intermediate cell size. This particular malignancy is increasing in frequency at an alarming pace.
There are, additionally, many other types of lymphoma including, in a partial list, T cell, NK cell, mantle cell, hairy cell, plasma cell and marginal zone. Each has its own character and treatment.
Mort
Yesterday, I had the pleasure of chatting with Dr. Lee Nadler who could be called one of the fathers of immunotherapy research. Dr. Nadler, now senior vice president of Experimental Medicine at the Dana-Farber Cancer Institute, was an oncology fellow at Dana-Farber when he began researching monoclonal antibodies. He enlisted the help of a former classmate, Phil Stashenko, D.D.S., who had learned how to make antibodies because he hoped to produce a mouthwash which would stop cavities. Nadler convinced Stashenko to show him how to produce antibodies, and together they made four, including the B1 antibody which became the foundation for the radioimmunotherapy drugs available today
Dr. Nadler and I chatted about those early days. Rather, I listened as he passionately recalled them. Of the way the system is currently run, he said, "Today, the health care system runs on what's profitable, not what's best for the patient. When people like Mark Kaminski (Bexxar's developer) and I started out, there were no incentives to use one drug over another. We got into medicine because we believed we could make a difference." They did, and they still are.
For now, patients who are faced with the challenges of cancer have one more difficult question to ask and answer: is my doctor recommending the treatment that is best for my health or his bottom line? While patients should feel that their physicians have their best interest at heart, the system of reiumbursement leaves room for doubt, and that's an unfortunate position for patients who already have enough to worry about.
Betsy
Following Brian Williams' Nightly News broadcast on the subject, Betsy has introduced a most important element into the blog discussion of non-Hodgkin's lymphoma. This is the topic of physician (oncologist) reimbursement.
The basic fact is that medical oncologists get paid profitably for administering cancer medications in their offices or owned facilities. As suggested in the Nightly News segment, the exigent question that must be addressed is whether this payment practice affects their recommendations to patients who seek advice on lymphoma treatment.
As a patient. I am distressed to have spoken with so many patients who have received, over and over again, courses of CHOP chemotherapy or serial rituxan infusions WITHOUT EVER HAVING HAD A CONSULTATION WITH A PHYSICIAN WHO IS EXPERIENCED IN RADIOIMMUNOTHERAPY (RIT). Could this fact be related to the fact that the medical oncologist is not compensated for RIT administration?
The holy grail in medicine today is "evidence-based medicine", namely, medical decisions made upon objective data. From what I have been told by oncologists, there is considerable data on the efficacy of RIT; data that enables the oncologist to advisedly recommend RIT to lymphoma patients.
Poliitcal revolutionaries speak of "power to the people".
Mort Diamond speaks of "power to the patient". Non-Hodgkin's lymphoma patients should not ask, should not request---they should DEMAND a consultatlion with a physician experienced in radioimmunotherapy (radiation oncologist or nuclear medicine physician).
Mort
As cancer patients, we have a lot to worry about. In this entry, I am going to climb out on a limb and discuss an issue that patients should never have to worry about - and one which I would never have raised had not Brian Williams addressed it on the NBC Nightly News last Thursday, September 21. His broadcast can be seen in its entirity at: http://media.vmsnews.com/MR.pl?id=092106-651798-G000760835
Brian and his colleage, Rehema Ellis, discuss a potential conflict in oncology which occurs because doctors can profit from the sale of drugs. Brian raises the question of whether patients get more drugs than they need or whether they get more expensive drugs than are necessary. Says Peter Eisenberg, a California oncologist, "A significant amount of our revenue comes from the profit that we make from selling drugs."
This is indeed a sad but true fact of cancer care. As patients, we need to feel that our physicians have our best interests at heart, and I genuinely believe that most physicians do. But the system itself does allow for the possibility that certain drugs may be prescribed because they are most profitable.
In the case of RIT, doctors must refer patients to radiation oncologists who then administer the drugs. This means that the referring doctor does not sell the drug, thus does not profit from it.
I have heard numerous stories from patients whose doctors do not discuss RIT with them, and yet evidence from clinical trials proves that it is beneficial. Last year, less than 5% of the lymphoma population who could have taken RIT got it. I cannot help but wonder if economics has played a role.
As has so often been stated, there are numerous philosophies on how best to treat NHL, and what one doctor suggests does not mean that another doctor whose opinion differs is wrong. What this does mean is that patients must do their own homework, sometimes seek different opinions, and make choices based on their own "creed," as Mort so nicely puts it.
As patients, I don't think many of us think of ourselves as "purchasing" medical services, but in effect, we are. It's a sad fact that when we are ill we have to consider that the world of business can potentially collide with our health, but it's another aspect we must all consider when making appropriate choices.
Betsy
It is crucially important for a non-Hodgkin's lymphoma patient---indeed, any patient--- to understand his or her treatment and the result of that treatment.
When reviewing the patient's response to therapy, the oncologist often uses the term "remission". You, the patient must understand that "remission" has many definitions.
In fact, oncologists use the following terms that relate to remission:
1. remission
2. clinical remission
3. complete remission
4. pathologic remission
5. molecular remission
THESE TERMS ARE NOT SYNONYMOUS.
The varying definitions relate, in the final analysis to the vigor and sophistication of the follow-up studies. For example, one patient may undergo only a follow-up imaging study that shows no evidence of enlarged lymph nodes. Yet, there may still be malignant cells in the body.
Another patient may undergo, in addition to an imaging study, sophisticated blood studies, e.g., polymerase chain reaction (PCR) and gene expression tests that may indicate no evidence of malignant cells.
Both patients may be told that they are in "remission"; yet, there is a most important difference.
I urge every NHL patient to carefully query the oncologist as to the meaning of remission.
For myself, radioimmunotherapy (RIT) has provided me with a state of remission in which the most sophisticated tests show no evidence whatsoever of malignant cells in my body. Thank you, RIT.
Mort
It is difficult enough to deal with the emotional impact of a cancer diagnosis without having to learn a whole new language and to make difficult decisions that affect our health and our future, but that is what cancer forces us to do. Additionally, different doctors have different philosophies about treatment and it is up to each one of us to decide which is best for us. Sometimes that means getting two, or even three or four, opinions. And it means sifting through the information to make an informed decision.
One important aspect of making a treatment decision is weighing the risks and the benefits, and it may be helpful to gather as much information as you can before you have this discussion with your doctor. The FDA has information about most drugs on its website at www.fda.gov. It takes a little clicking through their site to find it, but on the left side of home page, you can click on "Drugs" which will take you to another page. At the center of that one, you can click on "Safety Information for Specific Drugs," which will take you to a yet another page. I found that most of the cancer drugs were not listed there, but could be found by clicking "Drugs@FDA.gov" (I couldn't get this to open simply by using this address) and there you will find a list of drugs alphabetically.
The information you will find is quite scientific, but it does include safety information and precautions, and even for non-scientific people like me, there is enough understandable information to have a more meaningful discussion with your oncologist.
There is no treatment that comes without risk, and that includes many common over-the-counter medications, but understanding the risks versus the benefits is helpful in making informed choices about treatment. Ultimately, you are the only one who can consent to any particular treatment, and having a voice in deciding which one may help your outlook, at least a little - and we all need that from every source we can find.
Betsy
Betsy has the wonderful knack of linking medical data to her passionate, personal experience with advanced lymphoma. Beautifully, she places the cost of radioimmunotherapy (RIT) in the context of survival, actually robust health after having received RIT.
In my earlier, August 22 blog entry, I was more practical comparing the cost of RIT to standard chemotherapy. For those blog readers who did not see that entry, I respectfully suggest they read it.
Cost is, indubitably, a valid issue of concern. However, cost determination becomes clouded for there is no way to place a "price tag" on survival, on good health, on extra years with loved ones.
Mort
Because several people have asked about the cost of RIT, I pulled out our old records. We carefully recorded each expense from the time I was diagnosed in January of 2002 until the end of that year, and what follows are sums from actual bills.
The total cost of RIT, including the drugs and consultation with doctors, scans, and every single test associated with it, totaled $36,926.50.
As many of you have read, I relapsed after five of the planned eight R-CHOP treatments. If I had completed all eight, the cost would have been $65,188.24, based on the cost of each treatment I did take. In addition, our insurance paid another $42,780.24 for an array of chemo-related complications and hospitalizations. This figure does not include the numerous CT scans, blood tests, Neupogen, doctors' visits or other miscellaneous expenses during the months I was taking chemo. Nor does it include the $44,809 that was spent on searching for a bone marrow donor - and that was just for the search! I can't even imagine what the transplant itself would cost.
These numbers are four plus years old, so they mean relatively little besides showing that the cost of RIT was, in my case, about one third the cost of chemo plus chemo-related complications.
But there is more to the cost than just dollars and cents. The months of chemo, relapses, complications and debilitating side effects took a huge toll on our emotional health and our personal finances, and that cost is immeasurable. With RIT, treatment is given in two doses a week apart and side effects are minimal. Normal lives and schedules are generally resumed quickly.
In real dollars, RIT appears to be less expensive than other treatments, but in real value to our physical, emotional and financial well-being, it is priceless.
Betsy
i appreciate Betsy having made note of the meeting that I shall be chairing.
This is a side-by-side conclave in which there will be simultaneous programs, one for oncologists, the second for lymphoma patients, their caregivers and those very important oncology social workers.
The goal is to further educate oncologists on the efficacy of radioimmunotherapy and its proper earlier role in non-Hodgkin's lymphoma therapy.
All patients are cordially invited. Registration is essential---go to www.iche.edu/fla06.
Mort
I'm learning more information about what is sure to be a very informative, educational conference about radioimmunotherapy and want to share the information with all of you. This sounds like a terrific opportunity to hear from some of the top RIT experts and I would encourage any of you who can to take advantage of this free event. I've signed up and already bought plane tickets and hope to meet some of you there!
The details follow:
Date : Friday, October 27, 2006
Place: Seminole Hard Rock Hotel and Casino, Hollywood, Florida
Title: Improving Patient Odds: Radioimmunotherapy As Treatment For Non-Hodgkin's Lymphoma
Speakers: Aldo Serafini, M.D., Professor, University of Miami School of Medicine
Michael Schuster, M.D., Professor, Weill Cornell Medical College
David Diamond, M.D., Florida Hospital Cancer Institute
Bettye Bradshaw, LCSW, Past President, Florida Society of Oncology Social Workers
Chair: Morton A. Diamond, M.D.
The meeting will have 2 segments, one for oncologists, the second, for patients, caregivers and social workers.
The patient program will be from 9:30 am to noon, followed by luncheon.
The program and luncheon are free.
For information, invitation and program activity, go to: www.iche.edu/fla06
Betsy
Oncologists are able to give comprehensive and detailed information to non-Hodgkin's lymphoma patients. Unfortunately, this information is often lacking in "personal touch".
Therefore, I think it is appropriate, even wise, to ask your oncologist for the name of a NHL patient with whom you may speak. (The oncologist will, in advance, get permission from the second patient.)
You may speak of the personal attitude toward the diagnosis of lymphoma, choice of treatment (or non-treatment) and support mechanisms in the family or community.
I have given my oncologist permission to "refer" patients to me for personal chats. They, and I, have found these to be warm, useful---and creating new friendships.
Mort
Four years ago today, my husband Alex and I left the house just as the sun was rising and headed to the hospital for my treatment with RIT. For the previous six months, my lymphoma had resisted both CVP and R-CHOP, and just ten days earlier, my lymphocyte count had soared so high that RIT had seemed out of the question. Miraculously, my counts dropped just in time.
That particular day, the first anniversary of 9/11, made my own illness seem infinitesimally small, yet the threat of my illness had consumed our family for months, and so as we grieved for the thousands of families who had lost loved ones, we prayed that the day would give us another chance.
I was the third patient to receive RIT at the hospital where it was administered. Alex and I settled into a small, private room where a nurse soon started Rituxan. The dose of Benadryl prior to Rituxan promptly put me to sleep nearly until the treatment was over.
Next, a radiation oncologist came into the room to begin the RIT treatment. As the drug began to course through my body, Alex held my hand and we talked about the countless people who had spent years making the moment possible, from researchers to average people like you and me who had donated money to research. We knew that years and years of work had preceded this 15 minute treatment which could keep our family intact.
When we walked outside, the day was gloriously bright and sunny, and I danced in circles, singing “I’m cancer free!” Alex and I knew enough about how RIT worked to know that my belief was well founded. We also knew that it had become available in the nick of time, and we remain deeply grateful that it did.
Today, four years later, I am healthy, and Alex and I continue to live and love and laugh. Our personal triumph on this date will always be subdued by the national tragedy that occurred five years ago, yet there is another tragedy that is more personal. Every two days in America, cancer claims the same number of lives that were lost on 9/11. Every two days. The loss of that much life is unacceptable, and it moves us to fight for research funding and to reach out to those who follow in our footsteps.
We know how lucky we are that RIT rescued me. It is a valuable weapon in the war against cancer, but the war is not over. Today, we are thankful for our small victory, but the time has not yet come to celebrate.
Betsy
An interesting, even poignant, question, is raised by a blog reader. "Where is the best place ... to get treated"?
In my opinion, there is no single "best place" nor is there a single "best doctor". The word "best" has as many meanings are there are individuals.
The key to treatment, I submit, is for the lymphoma patient to find a physician who is experienced and who is knowledgeable in current, even cutting-edge, medications. I believe it essential that the patient consult with a physician who has experience with radioimmunotherapy in the treatment of NHL.
Betsy and I are shining examples of patients who have had glorious results with radioimmunotherapy for advanced non-Hodgkin's lymphoma.
Mort
If all of you could have heard me a couple of days ago, you would have heard a voice filled with joy and hope. I heard of a woman who may well be the record holder for RIT - 13 years post treatment with no relapse!!!!!!!!!!!!!!!!!!! Last week, I thought 10 years was great, and now there is a 13-year survivor!!!!!!!!!!!
When I hear these long term survival stories, it is so encouraging. Imagine, 10 years or 13 years with no evidence of disease, no maintenance therapy, no nothing besides living normal lives!!!!! There is nothing I know of that could possibly have given these women back their lives other than RIT.
Because RIT is relatively new, we don't often meet others who have taken it. I would love to hear from anyone who has. Sharing success stories (without using names) is so encouraging to others.
Betsy
I wish to comment further on Betsy's entry on radioimmunotherapy (RIT) as first-line (or front-line) therapy for NHL.
i, myself, received RIT as first-line therapy for my Stage IV NHL, though my treatment was part of an experimental clinical study. Affirming Betsy's comments, oncologists can legally and ethically prescribe RIT as first-line therapy in "off-label" use. (Please read my blog entry dated 6/16/06 on "off-label" use of medications.)
Having spoken with many oncologists, I know that there are those who are impressed with the effectiveness of RIT and would use this class of medication "first-line". But, the patient must often initiate discussion of the topic.
Patients must be their own advocate.
Mort
A reader has asked if RIT can be given as a first line therapy. Maybe. RIT was originally approved for patients who have relapsed after an initial treatment with some type of chemo or Rituxan.
There was a clinical trial using RIT as an initial therapy which showed that it was very effective. The results of that trial were published in the New England Journal of Medicine in February 2005. I am not aware of any ongoing trials using it as such, but it would definitely be worth looking into.
I have heard that there are some doctors who may be willing to use it "off lable," meaning that it might be given as an initial therapy but I don't personally know of any.
Mort's entry on August 8 gave the customer service phone numbers of the two drug companies which produce RIT. You can call both of them for doctors who are using it in your area. The numbers are repeated below:
Biogen Idec: (866) 298-8433
Glaxo Smith Kline: (888) 825-5249
Happy Labor Day to all! I am grateful to be "laboring" around home today. This time four years ago, I wasn't sure I'd ever have that chance again. RIT gave it to me!
Betsy
Blog entries have emphasized the therapeutic power of radioimmunotherapy in treatment of non-Hodgkin's lymphoma.
It would be nearly sinful for me to not mention the power of "adjuvant medication", namely, the non-medicinal therapy that is so very important in tolerating treatment and promoting recovery.
I speak of love and support from those whom we hold dear. In my case, my wife, Louise, was simply wonderful. Her love, laced with pithy humor, was buoyant. The 8 hour rouind trips in our car to and from the treatment facility were filled with laughs, encouragement and the keen sense that I knew that Louise was feeling everything that I felt during the seemingly endless tests and treatment.
Indeed, there are many times when "thank you" is not sufficient.
Mort
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