The British Journal of Haematology has an article coming out that focuses on Watching and Waiting in advanced stage, asymptomatic Follicular Lymphoma patients. Patients who are kind of like I was -- stage III, some swollen inguinal nodes, but otherwise feeling fine. The study looked at 286 stage III or 4 Follicular Lymphoma patients (in Denmark, I think, since that is where the researchers are from).
I'll spare you the suspense -- the conclusion of the article is "advanced stage FL managed by WAW had a favourable outcome
and abandoning this strategy could lead to overtreatment in some
patients."
There are a bunch of statistics, too, though they don't mean much without comparing them to patients who had other treatments. Also, they don't mean much because they are statistics, and statistics might give us a sense of trends for a group of people, they say nothing about us as individuals. I've said it before, and I'll say it here again -- any time I've gotten depressed about my cancer, it has been because of statistics. So I'm not going to say anything about them here.
The important thing is that conclusion -- that Watching and waiting is still a valid strategy. Having been a watch-and-waiter myself, I appreciate hearing that I made an acceptable choice. If I had chosen differently, that would probably be OK, too -- there's nothing I can do to change the past. We all make out choices best on the best information we have available to us. I'm guessing if I hadn't chosen Watch and Wait, I wouldn't spend so much time reading and writing about it. I'd just have moved on.
And moving on is just what I think we should do with the question of whether Watching and Waiting is a valid strategy for this FL population. It seems pretty clear to me that we aren't going to have a clear answer to the question. We have some studies that say it's not worth doing, because we have a clear alternative in Rituxan (and may have a few more in the next few years as more monoclonal antibodies become available). And we have some studies that say there isn't enough of a difference between Watch-and-Waiters and patients who are treated immediately to say Watch and Wait isn't valid. The most recent was a study from Japan, presented at this year's ASH conference a few months ago.
So I'm using my power as Lympho Bob to demand an end to this debate. It's time to move on. Let's focus on those exciting new treatments in the pipeline, train oncologists to get a sense of the whole patient at diagnosis -- her emotional state as well as her physical state -- and involve the patient in deciding the best course of treatment.
Having lots of options is one of our strengths. Let's do our best to make sure patients get all the options they can, and choose the one that they need.
There. It's decided.
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6 comments:
Bob, once again you make wonderfully good sense!! Thanks for helping us watch and waiters relax and move on.
Thank you. I feel the same. I think to answer this question in a meaningful way requires a study that considers the underlying biology of FL (which varies). That would take a large randomized trial comparing w&w to vitamin R in asymptomatic FL ... with pre-treatment and on-relapse biopsies using latest tools (next gen sequencing ... now affordable) to see if features of the tumor predict benefit for either approach. Then we might have a rationale way to guide therapy ... with a test. It might not answer the question with 100% certainty but it would also inform about targets and how the FL evolves over time (with and without treatment). Would patient participate in such a trial ... ?
Interesting thoughts in this article: Is Observation Dead in Follicular Lymphoma? No, But the Apoptosis Pathway Has Been Activated.
http://www.jnccn.org/content/13/3/363.full.pdf
Move on to what ? treatment!
I listened to a podcast by John P. Leonard
He said most of the work on watch and wait has been done in Europe.
Specifically the UK because of their system.
Does this imply lack of funds ?
My UK Oncologist is basically monitoring LDH levels and told me they were normal yesterday.
He gave me a physical exam.
I have some enlarged nodes 2.5cm on the right of my neck which appeared just over a year ago and on the left one around 5cm which popped up less than 6 months ago.
He assures me this is not progression and I should stay on watch and wait.
It feels like playing Russian roulette and I get this feeling that transformation may be his benchmark for treatment.
We put our trust in our health professionals I'm hoping mine is not unfounded.
Hello,
I wanted to share my experience in was diagnosed at 21 with NHL follicular, I had low level bone marrow involvement and many hot spot nodes on the PET scan both above and below the diaghphram . However as I didn't exhibit B symptoms I was put on watch and wait. .....fast forward 7 years I recently went to see the haematologist who has moved me onto yearly appointments so I'm a firm believer in watch and wait. At my initial diagnosis I was told my haemo took my notes to a conference in London and they voted to keep me on W and W. Emotionally it was difficult at first but now I know I probably stand a better chance in future should the lymphoma play up. Ultimately watching an waiting has enabled me to have a daughter something that may have been affected by chemo. So lympho bob I'm so grateful to read your blog and your insightful info you should be proud that you help answer many questions from various ppl. Becky x
Becky,
Thanks so much for reading. I'm happy to hear that you were able to manage Watching and Waiting so well, physically and emotionally, especially since you were diagnosed at such a young age (and I thought 40 was young). And congratulations on your daughter! That's really wonderful. I hope your watching and waiting continues for many, many years.
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