The medical journal Leukemia and Lymphoma just published a study called "Comparison of the Effectiveness of Frontline Chemoimmunotherapy Regimens for Follicular Lymphoma Used in the United States."
It looks at how well Follicular Lymphoma patients responded, over the long-term, to three traditional chemotherapy treatments, all with Rituxan: R-CHOP, R-CVP, and R-Fludarabine.
It made me think immediately of another study from Italy from last year (April 2013 Journal of Clinical Oncology) that looked at the same three treatments, and with similar results.
In the more recent study, which looked at patients in the United States, overall response rates were high for all three (R-CVP 87%, R-CHOP 93%, R-Fludarabine 94%). Five-year survival was higher in R-CHOP and R-Fludarabione (86%) that R-CVP (76%). Same with Progression-Free Survival after 5 years (R-CVP 49%, R-CHOP 58%, R-Fludarabine 64%). Similar to the Italian study, which looked at 3 year statistics.
When I wrote about that study a year and a half ago, my question was this: why bother with a study like this? Traditional chemo is halfway out the door. Do we really need to know that R-CVP won't do as good a job as R-CHOP, when we have so many other targeted options to choose from right now?
Looking back, it's kind of an unfair question, for a couple of reasons.
First, this study involves a 7 year follow-up. So the patients in the study were starting their treatment even before I was diagnosed. To be fair, those three options were on the table for me way back when. So it wouldn't be fair to tell those researchers that their life's work is useless at this point.
Second, their work really isn't useless. There's still a place for traditional chemotherapy in treating Follicular Lymphoma. I haven't seen anything that says R-CHOP, for example, isn't a valid option for transformed FL, though we are seeing more options being explored these days. And I know there are still some oncologists who go to chemo for a first treatment, whether or not there are other options available. If it's still happening, it's good to know what the best options are.
All that said, a study like this is still a reminder to me, more than anything, of how far we've come, and of how many options we have now -- better options than I had when I was first diagnosed. I remember, almost seven years ago, laying out for myself what I thought I would need to do when treatments failed: I'd start with Watching and Waiting, and then go to straight Rituxan. After that, R-CVP. Then R-CHOP. Then an Auto Transplant, and then, if my body could deal with it, an Allo.
Other than Rituxan, I can't say any of those things are even on my list any more.
And that's all changed in just six years.
I've been talking about Hope lately, and this is a great illustration of why we should be hopeful -- look how far we've come. How many of you have had a conversation with an oncologist about Fludarabine lately? How many of you even know what it is?
Now, I'm not saying I would never consider R-CHOP, or that an Allo Stem Cell Transplant is out of date. Those options are valid, and they are available.
But we have so much more to talk about now.
And so much more to be hopeful about.
How can you not be excited about the future?
Hi Bob,
ReplyDeleteThanks for posting. Posts like these give follicular lymphoma patients like us reasons for optimism.
I was diagnosed 10 years ago. Like you, I figured back then that R-CHOP and a transplant (autologous and/or allogeneic) was somewhere on the horizon. I did undergo R-CHOP in 2008. I've since "harvested" my stem cells for a future autologous transplant, and my only sibling, my younger sister, was tested for a future allogeneic transplant. She is actually a full match for me, which I understand occurs only 25% of the time.
However, as you said, things have changed in the interim. Last year, as it became apparent that treatment would again be necessary, I enrolled in a clinical trial using a PI3K inhibitor, during which I achieved a partial remission over 4 months of usage. I am now participating in another trial, this one a Phase 1 trial using the BCL-2 inhibitor ABT-199.
Not so long ago, I wouldn't have considered a Phase 1 trial until circumstances became dire. But as my oncologist pointed out, trials today are very different from what they were when he was doing his fellowship. His attitude is, if I can hang around another 3-5 years without undergoing high-dose chemo and a transplant, there will be so many options available that chemo and transplants will slowly recede into history.
Anyway, thanks for sharing. Reading your posts has inspired me to possibly start blogging myself, if there is interest in following the story of a fellow fNHL traveler.
Take care,
-- Ben
Wishing you good results along the way!
ReplyDeleteThanks!!!
ReplyDeleteWow, Ben -- great story of someone who is "living the life" -- 10 years as a survivor, doing the old school chemo, now doing some inhibitors. That's really awesome. Thank you for the inspiration.
ReplyDeleteAnd start that blog. It's certainly been good therapy for me. Send along a link when you have it up.
Bob
Thanks to all for these postings! They give me hope for the future!
ReplyDeleteThank you for your blog! It has been really informative and helpful. I was diagnosed a month ago and reading your blogs has provided much insight into the medical and emotional aspects of this disease. I was wondering if you would consider doing an outline of the current treatment options available at this time. There is a lot of information out there and it can get confusing in terms of what the current options are. Thanks again!
ReplyDeleteGosh, there are a lot of them out there. There are traditional chemotherapy agents (like CHOP and Bendamustine), monoclonal antibodies (Rituxan), RadioImmuno Therapy (like Zevalin), newer pathway-focused treatments (like Ibrutinib), then Stem Cell Transplants. I think if I tried to name them all, I'm sure I'd miss something. I think the best place to look for something like that is Lymphomation.org's "Treatments" page at http://www.lymphomation.org/treatment-overview.htm
ReplyDeleteI'll think about doing some kind of summary of treatments in the future, but I'll have to be really careful about how I describe things and making sure I get it all in!
Wow, diagnosed a month ago. I remember I pretty much didn't eat or sleep my first week after diagnosis. Little did I know I would be still be alive and feeling so well a full 10 years later!
ReplyDeleteIn addition to Bob's suggestion re lymphomation.org, I would suggest checking out Dr. Jeff Sharman, whom Bob has already referenced here in his blog:
Dr. Sharman's CLL & Lymphoma Blog
http://www.cll-nhl.com/
I like how he puts things in layman's terms. I've passed his blog on to my family to read.
Assuming your lymphoma diagnosis is Follicular Lymphoma (fNHL), as are Bob's and mine, I might also suggest checking out Robert Miller's site:
Follicular Lymphoma - Treatments|Natural Strategies
http://lymphomasurvival.com/
I discovered Robert's site when I was diagnosed 10 years ago. If you become a member, you have access to a lot of articles he's written over the years, as well as a monthly newsletter he publishes. He also actively maintains a chat forum where the members keep themselves updated on the latest info.
I *think* membership is now free, although he asks for a small donation just to cover his costs in keeping his site up and running.
For what it's worth, Robert is in his 70's, and was diagnosed with fNHL 27(!) years ago, and is currently "NED" (No Evidence of Disease).
Hope that helps, and if you would like any other info, you can email me at
benmo@optonline.net
Wishing you lots of good health!
-- Ben
Amazing! Thank you so much! I am diagnosed with Follicular Lymphoma and I can relate to the first week comment. I think that reaction to the first week (or longer if required) is completely necessary to just wrap your head around the word 'cancer' and this disease. Thanks again and I will be in touch!
ReplyDelete