Monday, September 4, 2017

Vitamin D and Follicular Lymphoma

The Blood Cancer Journal just published an article "Vitamin D Insufficiency is Associated with an Increased Risk of Early Clinical Failure in Follicular Lymphoma." This isn't the first study on Vitamin D and FL, and it builds on the others in some important ways.

Let's go back a couple of years first. In 2015, the Journal of Clinical Oncology published a study on Vitamin D and FL that said low blood levels of D were associated with lower Overall Survival in patients who had been given Immunochemotherapy (Rituxan or RIT + CHOP). There were lots of alarming headlines in the cancer media about the study, and is the case too often, many of them misrepresented what the study actually said. I wrote about it in the blog -- the study's conclusion said "serum vitamin D might be the first potentially modifiable factor to be associated with FL survival." Might be. It was an interesting study that called for more research before we could know for sure.

The Blood Cancer Journal study gives us some of that research. But let's get this out there right away -- even these researchers say we need more research ("Further investigations are needed to determine whether outcomes could be improved in FL by supplementation with this readily available vitamin.")

I know I haven't even gotten to what's in the research yet, but I think it's really important to make sure, near the beginning of this post, to remind everyone to not jump to conclusions. I've been reading a lot of stuff online lately where people are taking small bits of information about cancer and making them into Big Things that they aren't. This study isn't saying Vitamin D will cure your cancer. I want to be clear about that.

So, about that research.

The researchers looked at 642 Follicular Lymphoma patients who were enrolled in the study between 2002 and 2012. Unlike the earlier JCO study, which looked only at patients who were given R or RIT + CHOP, the patients in this study had a number of different treatments, including R + chemo (CHOP, CVP or Bendamustine), but also straight Rituxan, watch and wait, and other treatments (which they don't list separately). That range of treatments is important, given that there really isn't a standard treatment for FL.

The researchers measured whether low Vitamin D levels had an effect on Overall Survival, Lymphoma-Specific Survival (whether lymphoma was the cause of death), and EFS12, or Event Free Survival at 12 months (this same research team had found that EFS12 was a predictor of Overall Survival -- that is, having FL get worse or come back within 12 months was a sign that Overall Survival was lower than with other patients).

The results (after a median follow-up of just under 5 years) --
For patients given R + chemo, low Vitamin D levels were associated with lower Overall Survival, Lymphoma Specific Survival, and EFS12.
For patients who watched and waited, low Vitamin D levels were associated with lower Overall Survival, but not EFS12. Lymphoma Specific Survival could not be calculated.
For patients given just Rituxan, low Vitamin D levels were NOT associated with lower EFS12, and Overall Survival and  Lymphoma Specific Survival could not be calculated.
When all patients receiving any kind of Rituxan treatment were lumped together, low Vitamin D was associated with all three -- lower OS, LSS, and EFS12.

The researchers are careful to say that more research needs to be done to confirm all of this, though they are especially hopeful that the study can help patients with low EFS12. While different studies have shown that low EFS at 12 or 24 or 30 months can predict low Overall Survival, the challenge is finding a treatment that can help those FL patients with an aggressive form of the disease. Maybe low Vitamin D levels are one way to help?

There are no easy answers here, as the calls for more research demonstrate.

But from my perspective as a patient, I would say that asking your doctor about your Vitamin D levels is probably a good idea. My own doctor (my regular doctor, not my oncologist) had me start to take Vitamin D supplements many years ago, and I continue to take them. She thought D levels were important for lots of reasons (none of them related to Follicular Lymphoma). Did my good D levels help when I took Rituxan? Have they helped me not need treatment since then?

Who knows? Follicular Lymphoma is a funny disease, and it goes down such a strange path that it's hard to know if any of the things we do (aside from actual treatments) have any effect. Follicular Lymphoma is like a toddler on a walk through the woods. It runs ahead sometimes, then stops and looks at bugs, then walks back in the direction it started, then lies down and cries in the grass, then walks ahead again. Same with FL, with its slow progression, waxing and waning, speeding up a little and slowing down again. We really can't know if our diet or exercise routine or supplement regiment is really doing anything for us. We really can't put our hope in something we can buy from a grocery store.

That said, ask your doctor about Vitamin D. It's worth having that conversation.

3 comments:

Anonymous said...

When I was first DX 3 yrs ago, I came upon Robert's lymphoma survival site.
I was convinced all the vitamins and supplements he writes about would keep my cancer from progressing. I was already stage 4, what was I expecting?
Anyway, long story short, after months of following his suggestions, my blood levels got worse.
I have stopped all those expensive supplements, dietary restrictions, and now just take a multi vitamin and I do take a D supplement. It can't hurt.
I also read more about Robert, maybe on your blog. His FNHL was grade 3, maybe more like aggressive NHL and that's why he has survived so long...from treatment, not supplements.
As always,
Thanks for your information.
Donna

Lymphomaniac said...

Donna, I don't think you read about him on my blog. I came across his site when I was diagnosed, looking for the same thing you were looking for. But I'm too cheap to pay for information I can find on my own. I've read some things about him since then, too. He doesn't hide the fact that he's had conventional treatment, but it does make me question some of what he writes about, too.
Bob

Anonymous said...

Ha! I'm too cheap ( frugal lol)too. I got the free year.
I was obsessed at the time with getting all the info I could find.
I was obsessed with following all his suggestions. That lasted maybe 2 months, until my oncologist told me that diet cannot change the course of this unpredictable disease.
That was such a relief to hear. I didn't want to live a life with no sugar! And having to eat Brussels sprouts every day!
Anyway, I did have the doc check my vitamin D which was normal.
I take a supplement as I mentioned, but for all considering it, make sure you don't take huge doses as it's toxic then.
Donna