LRF Forum: Follicular Lymphoma Advice

Last week, attended some of the sessions for this year's Virtual Annual North American Educational Forum on Lymphoma, sponsored by the Lymphoma Research Foundation. Like so many events, this one usually takes place in-person, letting many lymphoma patients gather to learn and to meet one another. Unfortunately, this one was all online this year. Unfortunate, because it's usually a chance to meet others, and that's often a great way to get some support. Fortunate, on the other hand, because it lets people who couldn't travel get to attend. People like me.

The forum took place over the weekend, so I wasn't able to attend every session I wanted to. But I was pleased to get to two of them. The first was a break out session on Follicular Lymphoma, led by Dr. John Timmerman of the UCLA Jonsson Comprehensive Cancer Center. Much of the session focused on treatment options, and Dr. Timmerman gave a very clear overview of treatments that are available and that are making their way through trials.

A couple of other points he made are worth mentioning. He used the work "unfortunate" in saying the disease is considered incurable (as in "it is unfortunately called incurable.") Many patients die with th disease, rather than from it, which complicates the idea of "curable." He says survival rates are rising for FL patients, though he doesn't like to talk about how long the median survival rate is. He'd rather focus on the prognosis for each individual patient. I understand that way of looking at things -- statistics about all of us as a group don't say anything about each of us individually. Maybe it's better to just say "it's rising" and keep it at that. 

That means many of us have to focus on living with the disease. He had advice for this, too -- 

• Diet is important. Lymphoma is not caused by diet. he recommends a low fat diet to his patients, with lots of fresh fruits and vegetables.
• Exercise is also important. It helps to relive stress and can improve immune functions.
• Supplements are not necessary, and can be toxic or interfere with some treatments, so it;s important to make sure they are on your "medications" list with your doctors. (He gave an example of a patient of his who found an herbal supplement online that ended up causing liver damage. Best to talk these over with a doctor.
  

Another bit of advice -- he says a it takes about a year to get used to the idea that you are living with a chronic cancer. We should make plans, and give ourselves something to look forward to. I'm very much in favor of this advice. I think it's natural, when we are diagnosed, to panic and not want to think about the future, since we're so focused on the present. But with a chronic disease like Follicular Lymphoma, one that we might live with for many years, we have the freedom to look to the future. That's a little harder to do right now, when we are so restricted in what we can do. But my wife and I are already looking forward to what comes next -- some travel to see family and lots of hugs. It's nice to remind ourselves about when that will happen, not if it will.

And one final bit of advice from Dr. Timmerman -- someone asked what the cause of Follicular Lymphoma was, and he said he wasn't sure. There is some evidence that people who use pesticides can develop NHL, but they need to have used large amounts over a long time. For most of us, the cause is harder to figure out, and it's something he doesn't worry about. Whatever the case, it's going to be treated the same way, anyway.

I'm all for this, too. Don't worry about the cause of your FL. As I wrote a few years ago, all this does is cause guilt. We think about things that we did or should have done that may have caused our cancer. There's no changing the past, and most of us had good reason for doing the things we did anyway. Focus on the present and the future, not the past.

I attended a second session on Survivorship, too. I'll get into that one in my next post. Lots to think about in that one, too -- similar advice to Dr. Timmerman, but with a few other issues worth writing about.