Interesting research from ASCO: A look at whether Vitamin D helps extend Event Free Survival for Follicular Lymphoma patients.
It's not really "research" yet, since there are no results. But there was a presentation at ASCO on the study,which is called ILyAD (Indolent Lymphoma and Vitamin D). Clever name. I'll do my best to resist any puns on the Iliad, that great Ancient Greek poem about the Battle of Troy.
But bad puns are kind of my Achilles' heel.
(Dang it. Sorry.)
In all seriousness, the abstract for the presentation is called "ILyAD (Indolent Lymphoma and Vitamin D): A phase III double blind, prospective randomized trial to evaluate the supplemental effect of vitamin D on progression-free survival in patients with low tumor-burden indolent non-Hodgkin lymphoma treated with rituximab therapy."
It builds on some research that's been done in the last few years that shows that there might be a connection between low Vitamin D levels and Overall Survival, and Event Free Survival within 12 months. I wrote about it last fall, and if you want to see more, you can use that cool Search feature that I moved to the top of the blog and enter "Vitamin D.")
The ASCO research describes a phase III clinical trial. It is still recruiting, if you're interested -- you can find more about it here.
Basically, the researchers are looking more directly to see if there is a connection between Vitamin D and effective treatments. About 2/3 of the patients will get Rituxan (4 weekly doses), plus 2000mg of Vitamin D every day. The other 1/3 will get the Rituxan, but no Vitamin D. After 13 weeks, patients will be evaluated, and if the treatment isn't working, they'll be taken off the study to try another treatment. But if there is a response, they will continue for 3 more years to see if the Vitamin D group does better.
"Does better" will be measured by Event Free Survival, with an "event" being no response at week 13, having the disease get worse, needing a new treatment, or dying.
Again, the study is actively recruiting now, so there are no results to report.
But I think there is a big lesson to learn from it.
Vitamin D is one of those things I read a lot about -- there are many people who think it has some miracle properties that will take care of a long list of health problems. I will freely admit that I take Vitamin D every day. Every time I tell a doctor that I take some, or my wife tells a doctor the same thing, we get a thumbs-up. We hear it often enough to think we're doing a good thing by taking Vitamin D.
Do I think I've gone over 8 years without treatment because I take Vitamin D every day?
I have no idea.
And that's the point.
Without rigorous study of treatments, we have no idea what works.
A few days ago, a friend of mine who is a breast cancer survivor posted a link on Twitter, a story about a social media personality who has been saying that her veganism and her belief in God cured her cancer. Unfortunately, she died when the cancer came back.
I'm not going to link to the article, because it's a little too gleeful in its "I told you so" tone. That's not helpful to anyone.
Being vegan can be a good thing, especially if it gets you to pay more attention to what you are eating, and it gives you incentive to be healthier.
Belief in God is also a good thing, especially if it brings you comfort and helps you pay more attention to the needs of others.
But neither of them has been proven to cure cancer. Not in any rigorously tested way.
Same with Vitamin D. I believe in miracles. I think there are things that can't be explained.
But for every 1 in a million miracle, there are 999,999 instances where the miracle didn't happen.
So if I have a choice between a miracle and a treatment that induced a response in 65% of patients, I'm going with the 65%. Much better odds.
I'm hoping this research on Vitamin D does show us something. Wouldn't it be great if we could make treatments more effective by taking something that costs about 5 cents a day?
But we need the research to show us that it's really true.
That, to me, is the lesson.
(Also, consider participating in a clinical trial when you need treatment. Otherwise, there are no lessons for anyone to learn.)
Big fan of the blog been following for about 5 yrs. 41 yr old pt follicular lymphoma diagnosed at 35 still W and W. I am a skeptic and I think it is good Bob isn't unreasonably optimistic about anything however I think the more relevant question is what does it cost and what are the side effects of taking vit D if it can potentially help me vs thinking well it hasn't been clinically proven yet so I won't take it.
ReplyDeleteAlso there is a distinction between the fat soluble vit. D3 (animal source) you get from a pill or liquid vs the water soluble substrate from the sun. (UVB rays best at noon during summer lower latitude) Some scientist hypothesize it is the water soluble form from the sun and not the fat soluble that has the immunological benefits. I get mine from the sun everyday, nude preferably for ten minutes. I live in the desert so this helps. You can research this easily via the web.
I also take alfacalcidol a water soluble analog 1 mcg a day. Easy to get a script but you have to get it dispensed out of the country as US pharmacies don't provide this. Here is a link to a clinical trial that showed a benefit to follicular lymph. pts. with no side effects. Would like to see you blog on this Bob. https://www.ncbi.nlm.nih.gov/pubmed/2003990
Do you research people, a little learning is a dangerous thing as Alexander Pope said, not all Vit D is equal. Experts can't even agree on the amount to take. There is a home test to check your blood level. Get your in the upper range. I also am very skeptical like Bob and my first inclination is to doubt. But again for me the ONLY relevant question is what will it hurt to take this, and what are the potential although unproven benefits. I'm posting this to try and help contribute to fellow pts.
Thanks for the comment. Interesting study that you linked to. It's old -- published in 1991 -- and I can't find any follow-up to it anywhere as a larger study. Not sure why, though it was a small study (34 patients) and a little more than half had a response or stable disease (complete response in 4, partial in 4, and stable in 10, with 16 having the disease get worse). Maybe that wasn't enough to justify a larger study of alfacidol?
ReplyDeleteI think the larger point you make, though, is a belief that I share -- there's no definitive research that says Vitamin D is helpful, whatever form it's in. But it's relatively inexpensive (and even cheaper if you rely on the sun instead of a supplement), presents few to no side effects, and I'm not relying on it as the only source of treatment, should I need treatment.
Thanks again. I'm fascinated by the idea of Vitamin D, and I'll keep an eye out for more research on it.
Bob
I don't want to take up too much space on your blog Bob, but my guess is that because alfacalcidol is not patentable no private pharmaceutical company one wanted to invest in a larger clinical trial. Maybe NIH should have done something, isn't NIH research subsidized by the government? Bottom line though it seems is there is no money to be made.
ReplyDeleteOf all the treatments available it's hard to deny it has the least side effects (zero it would seem for most) of all existing treatments. There are other water soluble vitamin D analogs as well some of which are even more powerful. One needs to monitor his calcium levels on the analog or vit D for that matter. Vit D is a misnomer really it's a hormone and all your cells have a Vit D receptor. Low vitamin D levels have become endemic in our sedentary indoor society. A home test or test with your doc. I think would be the way to go and shooting for the upper range.
Before I was diagnosed I lived for 6 yrs in Western WA where there isn't much sun ost of the year, and never thought about Vitamin D had very little sun exposure and am sure my levels where low as a results. They say it's like surfing the web with no firewall, you invite problems. Thanks for all your good work, this blog is a blessing for us. Many years of health to you sir. We are both "young" patients.
Hi Bob, thank your for this article. My Onc has me take a Vit.D supplements because my levels were low (even with the supplements, they are low). She said Rituxan (if I should ever need it again) is not as effective if you have low Vit. D levels. I'm 11 years NED and feel great. I was DX in 1997 with Stage 4 Grade 3a Follicular NHL.
ReplyDeleteYour blog is indeed a blessing to us all.
Thank you!
Thank you, Jacqueline. Congratulations on the 11 years NED. Wishing you many more.
ReplyDeleteBob
Thanks for this Bob!! Its realy fascinating indeed, ive read some medical articles and videos about how vit D might be able to fight against not just cancers but diabetes, heart diseases and even hormonal imbalances for women , my husband is taking 1000IU per day, 5 years out stil on watch and wait, asymptomatic and recent Ct scan shows stable disease and blood work is "rock solid ", just wondering what is the dosage of vit D u take? - Jeanne
ReplyDeleteHi Jeanne. Glad to hear your husband is doing well. For a long time, I look 1000IU per day in the summer and then 2000 in the winter when there was less sunlight. A few months ago, at my last physical exam, my GP (not my oncologist) told my D levels were still in normal range, but moving toward the low end. It made me kind of angry, since I've been paying attention to D for a while now. So I'm taking 5000 now, which is probably more then I need, but I'm just being a baby about it because I'm mad. I'll probably go back to 2000 soon after I'm over it.
ReplyDeleteHope your husband keeps doing well.
Bob
Thanks for the info Bob! Will up his dosage to 2000IU, we are now living in Manila, tropical country so i reckon 2000iu shud be ok , i myself is also taking 1000iu per day, just started, take care always Bob! And regards
ReplyDeleteOK Jeanne, but just to be clear: I'm not a doctor, and I'm not giving medical advice. I'm just sharing my experience. My guess is that upping to 2000 won't hurt, but you should talk to the doctor about how much D he should take. Good luck with everything.
ReplyDelete