Friday, August 11, 2017

Alternative Therapies & Follicular Lymphoma: It's Complicated

Yesterday, the Journal of the National Cancer Institute published an article called "Use of Alternative Medicine for Cancer and Its Impact on Survival." It looks at the use of Alternative Thrapies, and the news isn't good for people who make that choice. And while Lymphoma, especially Follicular Lymphoma, wasn't a cancer that was studied, it's important to think about this topic as it relates to that cancer that effects our lives.

The study looked at 840 patients with several types of cancer -- breast, prostate, lung, and colorectal.Two-thirds of the patients received Conventional Cancer Therapies, which the researchers define as Chemotherapy, Radiotherapy, Surgery, or Hormone Therapy. The rest took Alternative Therapies, by themselves, without Conventional Cancer Therapies. The main finding of the study is that those who took only Alternative Therapies had a lower survival rate than those who took Conventional Cancer Therapies.

There are a couple things that should be pointed out here. While they don't get into what the Alternative Therapies are exactly, they do see the problem with them as being that they are "ineffective and unproven." So while something like Rituxan doesn't exactly fall into any of their categories, it has been around for 20 years and saved and extended thousands of lives, so that doesn't qualify as either "ineffective" or "unproven." They mean treatments that have not been through a rigorous clinical trial process.

And it's also important to note that they are looking at Alternative Therapies on their own, not those that are combined with Conventional Cancer Therapy. That combination approach is sometimes called using a "Complimentary Therapy," since it is used as a compliment to traditional medicine, not as an alternative to it.

Lymphomation.org does a nice job describing these three different approaches. Alternative Practice (they don't call it "medicine," and I agree with that choice) is unproven. Complimentary practices, as they say, help you work through Conventional Therapies: "Yoga for pain or stress relief is an example.  Exercise to help manage fatigue is another.  Such activities are sometimes called integrative medicine when used by medical doctors."  They refer to Conventional Cancer Therapies as "Evidence-Based Medicine," since those treatments have gone through trials to back up the science that created them. I think they do a really nice job of distinguishing between those three things.

Now, my guess is that anyone who has been reading Lympho Bob for a while knows that I am a strong advocate for Evidence-Based Medicine, and not so much into Alternative Therapies. So I will assume that you feel the same way.

Still, it's worth talking about why Alternative Therapies are tricky when it comes to Follicular Lymphoma.

As you know, Follicular Lymphoma is often slow-growing. And sometimes, it "waxes and wanes" -- gets better on its own, and then gets worse on its own, often while we are watching and waiting. So while we might be watching our FL, trying to be healthy, doing yoga three times a week and eating broccoli with every meal, it's tempting to think that it's the yoga and broccoli are the reason we  haven't needed treatment yet. But they probably aren't the reason -- it's just the nature of our disease.

Not that there is anything wrong with yoga and broccoli. They are both great. And if they make you feel good, that's even better. But they probably won't cure your cancer.

And I "probably" because maybe someday we might find out that yoga and broccoli, in some way, do have an effect on cancer. But that would only be after some very rigorous, scientifically-designed, evidence-based testing. And not because you saw on a message board that they might, or that a friend of a friend swears that they do.

As someone who watched and waited for two years before initial treatment, and then who has waited for almost 8 years since then, I know how easy it would be to think that there was something that I was doing that put me in the good position that I am in. But, off the top of my head, if I had to think about something I've done consistently in all that time, that might explain why I haven't needed treatment, it's probably been blogging. Writing about cancer has certainly been helpful for me, emotionally, anyway, but probably not physically. And there are lots of cancer bloggers who have unfortunately not survived for as long as I have.

Also, I have a hamburger and fries about once a week. I don't think that's helped either. Also, I drink Scotch, which probably hasn't helped, either. (Although I'm willing to sign up for a trial for that one.)

The point, of course, is that Follicular Lymphoma is a complicated disease. It acts all weird, and that makes it hard to know what has been helping and what hasn't. The only real way to tell is to trust science.

2 comments:

William May said...

Good article Bob. Another course of action is for your oncologist and you to consider "off-label" use of drugs approved for a different cancer. My wife was responsive to both bendamustine/rituximab and Idelalisib/rituximab BEFORE they were approved for follicular lymphoma. These two "off-label" treatments bought her valuable time until she was able to enter a potentially curable CAR-T trial. She has been in CR for 17 months and counting.
William

Lymphomaniac said...

Thanks, William. Yes, definitely another option. I'd still put them in the safe and proven category, probably -- tested on some patients already, and done with the approval of an oncologist. I hope your wife is still doing well with the CAR-T treatment.
Bob