› Forums › General Melanoma Community › Probiotics and nivolumab
- This topic has 6 replies, 5 voices, and was last updated 4 years, 9 months ago by
DoubleTT.
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- July 17, 2019 at 2:05 am
Hey guys, before I started my nivo adjuvant therapy for fully resected stage 4 melanoma at the end of last year I had read various medical journal articles stating that it could be very beneficial to take probiotics while being on immunotherapy. Encouraged by the findings I started taking probiotics to boost my gut microbes.Fast forward to today, and I came across various articles stating that over the counter probiotics could actually do more harm than good. In some cases they could lower the response to treatment by up to 70%.
Don’t really know what to make of it at this stage. Should everybody taking probiotics stop using them? I’ve been taking probiotics since I started my nivo treatment at the end of last year and so far all my scans were clear with no sign of disease. The only side effect I’ve been getting is a bit of fatigue so thought nivo+probiotics are working quite well together. Have 10 more, bi-weekly treatments left at this point. (12 months adjuvant therapy) considering stopping the probiotics for the remainder of the treatment. What’s your experience/advice on probiotics and nivolumab?
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- July 17, 2019 at 2:19 am
Our oncologist said no to probiotics. For the reasons that your stated. It was shocking due to all the GI issues he was having. -
- July 17, 2019 at 2:38 am
We have lots of studies that show that the microbiome in the gut might be helpful in predicting patients who may be more likely to experience colitis, and if the gut contains the proper cooties, it seems that that condition can even aid in a good response to immunotherapy. These reports along with additional bits and bobs in other scientific studies as well as pop culture buy-in combined with a HUGE advertising campaign by companies selling the stuff, had folks jumping on the probiotics from a bottle band wagon! I’ve been reporting on this fluctuating data for years. Here is a recent report with links to others within: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/01/microbes-againand-how-they-may-be.htmlIt stands to reason that we are also finding that antibiotics, while helpful in killing cooties we don’t want, can kill off good cooties that we do – thereby impacting our gut biome and potentially our response to immunotherapy. More reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/04/decreased-progression-free-survival-in.html
And finally in this saga, we have begun to see that while the good cooties help us – something we’ve always known, really – getting them from a bottle doesn’t, as the report you shared points out.
Melanoma never makes things easy. So – what to do? Do the best you can with the information you have. I would choose to stop the probiotics from a jar and instead enjoy kefir, yogurt, sauerkraut, kimchi, etc. Eat high fiber foods. Get some exercise. Try to get good rest. Laugh as much as you can. Cry when you need. And don’t beat yourself up for trying to do what seemed best at the time. Hope this helps. I wish you my best. Celeste
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- July 17, 2019 at 1:22 pm
Big thanks for a quick response. Yeah, it sometimes feels like navigating through a minefield when deciding on a particular course of action with regard to melanoma. Stopped taking “bottled probiotics” as of yesterday and will aim to deliver the good cooties through actual probiotic food, will so how it goes. Fingers crossed the bottled stuff didn’t affect the nivo treatment in my case but I guess we’ll never know. On the side note, I checked your blog and you’re doing an amazing job with it, well done. I bookmarked it and will be checking it regularly, big thanks for doing it. -
- July 19, 2019 at 5:57 pm
I have been looking for this Aim at melanoma link and finally found it, around 33:00min mark dr. DAvies gets into probiotics.https://m.youtube.com/watch?v=wwup6wOizdo&list=PLOnM_erAQqIBK-ASSZujKruJemGc-FQQR&index=5 -
- July 19, 2019 at 5:59 pm
sorry I should have written 23:00 min mark!!! -
- July 20, 2019 at 2:47 pm
Hi it’s me Tracey DoubleTT. My doctors are at Princess Margaret. Three oncologists love that I changed my diet two years ago. I only eat plant based high fiber foods that dont case inflammation, no nightshades no gas forming foods, and fish but a good assortment of white and good omegas. They told me absolutely no probiotics, no cannabis for bone and muscle pain, no turmeric, curcumin supplements for the inflamed reactions I get , and no antioxidants as I had my first mets to my T12 vertebrae last year. They say radiation does not want antioxidants fixing the bad cells they were killing with the 2 blasts of high radiation surgery. I’m in my 10th month of Nivo. I go every 14 days. I get nauseous for 3 days, and muscle joint pain. I’m very sparingly with the Aleve. But I swear it’s the food I eat that make my issues way less severe. I’m am fir the first time in my life regular, no indigestion, no gas, I started on probiotics 3 years ago when I was on a clinical trial. (Didnt work…but we knew it wouldn’t just a great way to keep a close eye on me.)They made me so upset in the tummy I just stopped…That was over a year ago. It was at the same time Princess Margaret docs said not to use them, any supplements, no cannabis, antioxidants etc….Now all the proven research is out there to back this up. They dont even want me taking Tylenol as it actually as an effect on my liver. The odd Aleve when I’m really bad is okay. Ice packs, cold showers, and or heating pads, pescatarian diet, minimal gluten, HUGE difference for me. Now I’m having trouble kicking wine off the Don’ts list LOL LOL so out 14 days I have my wine roughly 3 to 4 days out of 14 . Never before blood work lol! My liver is good. I wish I could meet all of you people in person. I have no one around me experiencing this or cancer. It’s tough! I see that Ed I think is from Ottawa? fellow Canadian. You are 4.5 hours from me as I now live in Collingwood. I’m going to Ottawa August23 would love to meet you and give you a hug. I read your posts all the time.
All my best to you all.
Hugs abound!
Tracey DoubleTT
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