Take Away Points
- Chemotherapy may be part of the best treatment option for some patients.
- Clinical trials using chemotherapy will provide valuable new information.
- Chemotherapy can augment other treatments.
- Combinations using some chemotherapy may be necessary to achieve a cure.
Long time CLL patient, advocate and member of our patient advisory board, Terry Evans, has written a very personal and thoughtful editorial in response to all the negativism about chemotherapy in online patient forums. He tells his own story and argues for a more nuanced and a less knee jerk reaction to the notion of chemotherapy.
Karl Schwartz from Patients against Lymphoma supplements this with some important and well-referenced explanations of the way chemo works and how it may be triggering the immune system for more oomph in its ability to knock down our cancer.
Finally I refer you my monologue on chemotherapy to gain an overview of the particular drugs used in CLL, how they work and what good and bad they bring to the table.
Start here with Terry’s commentary:
A reoccurring theme that is appearing in the online forums is the recommendation for people to abandon chemotherapy and immediately jump to the ‘newer, kinder’ treatments. When someone posts that their doctor has told them that they need BR or FCR for instance, there are usually several comments with people being told, they need to CHANGE doctors, look into one of the new non-chemo treatments. What concerns me is that usually no one really has the complete picture. With few exceptions on the lists, we are not physicians, and even those CLL’ers who are physicians are very hesitant to give specific treatment options to posters. Generally people don’t post their complete make up, or even what the doctor’s rationale was for suggesting a particular regimen. There are many reasons why people are being led into a chemo-based treatment; availability of insurance coverage, travel, prior treatment, age of patient, genetic makeup, co-morbidities, doctor’s experiences in treatments, etc. Even with all the new options available, there are still limited approved drugs for first-line treatment.
I think that ignoring chemo-based treatments as an option are going to cause several problems:
- People will shy away from clinical trials that include chemotherapy because they are being offered a non-chemo agent as a first-line treatment (obinutuzumab, ibrutinib, idelalisib, etc.). If the trials aren’t filled, then we will severely restrict the advancement of newer, better treatments. With a dismal 3% clinical trial participation rate for US patients, this will even further decrease those numbers. How can we get to a CURE if these trials aren’t filled?
- This may be the BEST option for some patients. Those with the right markers, the right age, and good co-morbidities may achieve a 5-10 year remission with only 6 months of treatment. Some early patients in the first FCR trials over 10 years ago are STILL in remission. Are they cured? Only time will tell. Take a look at this video from Dr. Susan O’Brien on treatment options. There is still a role for chemo, and the combination treatment of chemo plus one of the new novel agents, may even be the road to a cure.
- I am afraid that when these new drugs are approved for ALL patients as a first-line treatment, everyone will run to them just because they are NOT chemo. But they will NOT be cured. Keep in mind there is NO data over 5 years on any of the new treatments. That is not a very long track record.
I am aware of the DNA and immune system damage that chemotherapy can potentially cause and that certainly has to be part of the decision-making process. I also understand that some doctors don’t have the full treatment picture, and second and third opinions, as well as opinions from CLL experts are a must before you begin treatment. Chemo is not without risk, but what treatment options are free from risk?
I know that this view of supporting chemotherapy as a treatment option is not necessarily popular, but as someone who has been on two Clinical Trials and has had both FCR and Bendamustine (in the ABT-263 + B + R trial) and ultimately getting into the Resonate trial in 2013 and crossing over to Imbruvica 20 months ago, I feel like I do have some skin in the game.
Do I regret getting chemotherapy? No, I regret my original physician not having ANY OTHER options available for me as my first-line treatment. I regret him not knowing the relationship of my markers (11q, unmutated, Zap70+) to different treatments. Will it have any long term effect on me? Who knows? Will I become refractory to Imbruvica and need another treatment? Probably.
I think the best options for patients are to confirm a treatment choice with a CLL specialist. Believe it or not, there are still top CLL doctors that are suggesting chemotherapy-based treatments for some patients. And some of the most promising trials either compare or include chemotherapy. Please don’t IGNORE these options.
–Terry Evans, patient and advocate since 2000, member of the CLL Society Patient Advisory Board
Finally, please catch my brief explanation and video on chemotherapy here.
After considering these three commentaries, has it changed your perspective on chemotherapy?
Please write us and share your thoughts.
Brian Koffman 8/4/15