50 Years of Lymphoma Lessons

I like to think I've learned a lot in my almost 18 years as a Lymphoma patient. Of course, I'm not an expert -- not like the actual doctors and researchers who have made Lymphoma their life's work. But I've read and written enough to know that there have been some major changes to the Lymphoma world since 2008.

But someone who has seen all of that and so much more is Dr. Bruce Cheson.

If you're a long-time reader of the blog, you might recognize his name. He is a now sort-of retired Lymphoma expert. I linked to him a lot because he wasn't just a well-known and influential researcher (he was responsible for introducing Bendamustine to the U.S.), but because he was very good at explaining things in a clear and often entertaining way. (I have a memory of him making a presentation at a conference somewhere with a glass of wine on the podium as he speaks.)

Dr. Cheson retired a few years ago, though he's still very active in many ways in the Lymphoma community.

A couple of weeks ago, he published something in the ASCO Post, the blog for the American Society for Clinical Oncology. The piece is called "My 50 Years in Lymphoma: Lessons Learned?" 

From the title, I expected a celebration of all of the progress we have made in 50 years in treating Lymphomas. But it's not quite that -- it's more of a list of the things that the research and treatment community still needs to make better.

He looks at different elements of the Lymphoma diagnosis and treatment spectrum -- classifying it, staging it, grading it, treating it, and deciding how successful the treatment was. For each, he gives a brief history (something a Cancer Nerd like me finds very interesting).

But he also points out how stuck we are in the past in many ways.

Take FLIPI for an example, which he discusses under "Prognotic Scoring Systems. I sometimes get emails or comments from readers asking me what FLIPI is, so I've seen how confusing it can be. FLIPI is the Follicular Lymphoma International Prognostic Index. Originally, FLIPI was used to categorize patients in clinical trials. The idea was that using a kind of "quiz" could help make sure everyone in the trial was basically the same, as far as their disease goes, so the can be more easily compared to one another. It doesn't make sense to see if a treatment worked on an asymptomatic stage 1/grade 1 patient who is 40 years old and then compare it to a 70 year old with stage 4/grade 3 bulky disease. So the FLIPI used categories like age, stage, and LDH levels to give a score from 1 to 5. A score of 0 is "low risk" and a score of 5 is "high risk."

One of the problems with FLIPI is that it is sometimes used by patients to guess their future. The link above will take you to a quiz that gives you a FLIPI score and prognosis. A score of 0 means you have a 70% survival rate for 10 years -- at least according to the quiz. A score of 5 means your 10 year survival is about 35%.

But the FLIPI is so general that it really tells you nothing about YOU as an individual. There are so many more factors that determine your situation than something like age. FLIPI is not a crystal ball. It cannot predict YOUR future. 

Back to Dr. Cheson. As he pints out, different versions of FLIPI have been prposed over the years, like FLIPI2 and FLIPI-m7, which looked at other biomarkers, but which really never caught on. (It was tried out on larger groups of patients and found that it didn't really hold up. Biomarkers have always been an issue for FL.) For Dr. Cheson, the problem is kind of the opposite of the one that I point out (which is that FLIPI probably makes your future look worse than it is). For him, the problem is that FLIPI doesn't accurately identify high-risk populations. It's that biomarker problem again. Being over 60 doesn't make you higher risk. It makes you average. 

He thinks most prognostic systems like FLIPI are decades old and do not reflect what we have learned about Lymphoma biology (despite the attempt at FLIPI-m7). They are useless in helping a clinical oncologist figure out the best way to treat a patient. And certain factors have changed with more effective treatments. Have three sites with swollen nodes instead of four sites doesn't change the recommended treatment. It's really not helpful -- not for patients who are worried about their futures, and not for the doctors who are trying to help them. 

Dr. Cheson points out lots of other things that are similar -- old habits that don't really apply any more. 

The question is, what to do about it? 

For Dr. Cheson, the answer is "a revolution": "To improve patient outcomes, a revolution is clearly needed for integrating staging, prognosis, treatment, and response assessment in the context of the remarkable proliferation of exciting new, nonchemo therapeutic agents for lymphoma." 

I hope the solution isn't quite as drastic as a revolution would suggest. But I can also see where someone like him, with a 50 year perspective, would think so. There is so much exciting news in the world of treatment that the basics of diagnosis and staging still haven't caught up with it. 

Here's hoping that revolutionary spirit spreads through the whole Lymphoma community.