Your Responses
Thanks to all of you who responded to the informal survey. The comments were interesting and all touched me deeply. Only one respondent had taken radioimmunotherapy, and no others indicated that they were offered the treatment as an option. I'll summarize the readers' comments followed by my own.
Several of the respondents are being treated with Rituxan as maintenance therapy after chemotherapy. One is experiencing flu-like symptoms after each Rituxan treatment. Another's lymph nodes are increasing in size during the maintenance therapy and he wonders if chemo will be necessary again. Another patient, age 87 with follicular lymphoma, has been told that radioimmunotherapy (RIT) is not used for her type of NHL.
Rituxan has not been approved by the FDA for maintenance therapy. However, many drugs are successfully used for purposes other than those for which they are approved, so Rituxan as maintenance therapy is not unusual. However, one must wonder why it is used so commonly when radioimmunotherapy could potentially offer patients less treatment time with fewer side effects and with longer term remissions. Why go through months of flu like symptoms with every Rituxan treatment if there is an alternative?
In the case of the patient whose lymph nodes are growing despite maintenance therapy, a discussion about radioimmunotherapy as a possible alternative to chemotherapy would be worthwhile. In regard to the comment that RIT is not used for follicular lymphoma, RIT was approved for exactly that type of disease! And in elderly patients, it is especially useful because it is so much easier to take than chemotherapy. Another patient wrote that his doctor told him that Medicare did not cover RIT. I checked my sources and found that it does.
Another patient, also taking maintenance therapy, was told that the doctor was worried about retreatment should RIT not work. As I have said before, there is 16 and 13 years of data for Bexxar and Zevalin respectively, and studies have indicated that retreatment is possible.
The one patient who has taken RIT is another long term survivor - since 1991, but she had chemo and radiation prior to RIT.
In summarizing your responses, it seems that maintenance therapy has become the standard of care, and I wonder why when RIT can offer patients a chance of long term remission with a treatment that is given in two doses a week apart. Last year, RIT was given to less than 5% of the lymphoma population who could potentially have benefitted from it. While I am not aware of any study that has compared maintenance therapy to RIT, neither am I aware of any study that has shown maintenance therapy to be as successful as RIT.
A couple of the best RIT specialists in this country have told me that if RIT were a breast cancer drug, people would be lined up at the door to take it. The problem seems to be that breast cancer patients have a unified voice and a network of patients who talk with each other and demand the "latest and greatest" from their doctors. We lymphoma patients don't have that yet. Until we do, RIT will continue to be underutilized. We must demand the same "latest and greatest" from our physicians, and that may mean seeking a second or even a third opinion if your own doctor does not discuss RIT with you.
Please see the entries of September 25 (Profit Versus Patient) and on July 13 and 14 (Maintenance Therapy) for further discussion.
Thanks to all of you who took the time to respond to us. Mort and I always welcome your comments.
Betsy