Friday, May 3, 2013

Watching and Waiting

The excellent CLL and Lymphoma blog by Dr. Jeff Sharman had another very good post a few weeks ago, this one on Watching and Waiting.

As you probably know, I am a former watch-and-waiter, having waited for two years (to the day) between diagnosis of my Follicular Lymphoma and my first treatment with Rituxan. I guess I shouldn't say "former" -- really, unless we're being actively treated, we're all watching and waiting, looking for symptoms but trying not to obsess, and hoping that we won't need treatment. But it's kind of always there for us.

Which is why it's also known as "watching and worrying" -- or, as Dr. Sharman says, "watch and freak out." The point is, it's awfully hard to do, especially when you're first doing it. it makes no damn sense at all to have cancer and do nothing about it. Except that sometimes it does make sense.

Watching and waiting remains controversial, and lots of oncologists have moved away from it, since we now have Rituxan to provide a first treatment with minimal side effects, and a bunch more second-line treatments to try, with more on the way. Still, for some patients, the idea of holding off treatment for as long as possible is attractive, once they wrap their heads around it. As I said in a comment/response recently, I'm happy with my decision to watch and wait, 5+ years later.

Dr. Sharman's post does mention Follicular Lymphoma, though the new research he discusses is focused on CLL, another slow-growing, indolent lymphoma. Here's his list of the lessons we should learn about watching and waiting, based on new developments:

1)      Watch and wait was historically based on ineffectiveness of therapy

2)      Newer treatments have led scientists to revisit #1 but the answers are not in yet

3)      One risk of treatment is the emergence of resistance but not all patients experience this

4)      We may be able to begin measuring a patients risk for resistance based upon “subclonal driver mutations” soon

5)      To date, we do not have much insight into what sorts of therapies influence emergence of resistance

6)      Watch and wait is not crazy in appropriate patients – there may have been benefit to it for a long time that we are only just now starting to figure out.
7)    Patients should not wait too long otherwise they just feel lousy when they could have been feeling better with treatment.

You can (and should) read his full blog post here. I won't comment about the research on "subclonal driver mutations" that he mentions, because I'm not completely sure about their relevance to Follicular Lymphoma, but it's all very interesting stuff. As for the rest of the list, it raises some questions that have been around for at least 5 years. it would be great if they were finally answered, but for now, there's nothing to suggest that watching and waiting does any harm to anyone who is asymptomatic and is observing the "watching" part of things closely.


Anonymous said...

Hi ! i came across an article in the molecular oncology report (but it was written in 2007) that based on the studies conducted, the researchers found out that although no difference in overall survival rate, ,immediate therapies prolong disease free survival and that the benefit of w and w might need to be revised, i've read something like this too from other articles, about immediate therapies might lower the risk of transformation, but most top doctors still favor watch and wait from what i read, so we are confused, btw my husband 2nd opinion report came out as FL grade 1, so far he is asymptomatic and blood work is good except for his usual triglycerides and uric acid are a bit off, next week will go for PET/CT scan, like always, he is optimistic and not overly concerned, and happy that at least its not aggressive, also he thinks W and W is good if that will be his initial treatment - Jeanne

Lymphomaniac said...

Jeanne, glad your husband is still optimistic. Thanks for the update, and good luck with the scan. As for the W & W research, there's still nothing definitive enough out there to make doctors choose immediate treatment over waiting. I think we're all hoping for something....

Anonymous said...

By the way, if im not mistaken ur doctor's visit is within the month? Good luck too!! Looking forward to more of ur articles! Take care - jeanne