Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Latest data confirms what many of us have already known for some time regarding diet and PD-1 response: Diet, supplements may affect immunotherapy response among patients with melanoma

“What we found in profiling patients prior to therapy is that certain features of the gut microbiome were associated with response,” Christine Spencer, PhD, research scientist at Parker Institute for Cancer Immunotherapy, said during a press cast. “While the data is still early, we found that patients eating high-fiber diets were about five times as likely to respond to anti-PD1 checkpoint blockade immunotherapy.”

Let me reiterate. Eat enough fiber, and that $11,000 / month immunotherapy has a FIVE TIMES HIGHER chances of working.

Eat your vegetables, eat your fruits. Don't eat junk food or any processed food that has even microscopic antibiotic doses as this can disrupt the microbiome. Start in advance of receiving your first dose or as soon as possible if you're already taking it.

I am working on a large document with many references in regards to what can affect the microbiome and or PD-1 response in addition to diet. You can wait until I'm done or you can just do this as it's already clear:

1. High fiber diet rich in unprocessed food. Some highlights: walnuts, beans/lentils/chickpeas, fruits & veggies - a high variety.
2. Stay the hell away from antibiotics. Topical is OK.
3. Stay the hell away from probiotics. Prebiotics (fiber) is the right way.
4. Sleep 8 hours or more every day (no, you cannot make it up on the weekend).
5. Do moderate cardio >65% of heart rate, 30 mins 3x or more per week. Strength training is optional but highly recommended 3x a week as well. You need a healthy amount of muscle mass.
6. Make sure Vitamin D level isn't low (blood test) and supplement it if needed as much as 10000 IU per day until it's at the upper range of normal.
7. Minimize psychological stress as much as possible.
8. Optional: intermittent fasting = consume all meals in an 8 hour window of the day and only drink things without calories outside this window.
9. Avoid biopsies and or surgeries if possible ie do your immunotherapy OUTSIDE of a trial. Biopsies will certainly increase inflammation in the tumor micro environment.
10. While on active immunotherapy, beware that autoimmune side effects are much more likely due to vaccinations. Do your vaccinations prior to starting immunotherapy if at all possible.

I will have 50+ scientific references to justify it later, whenever I'm ready to release that document.

Considering that ASPS has most excellent response rates to PD-1, this is now officially the way to go in my opinion.

Thank you for posting this Ivan. I was wondering about the specifics of what kind of diet to go on in preparation for immunotherapy. Do you have any other websites or articles you can post for more references at this time? I want to do more research on this too.

Nhi - We had reviewed this before here so if you missed this you can catch up:
http://www.cureasps.org/forum/viewtopic.php?f=90&t=1630

some of the research is very new and is going to be presented on the AACR Annual Meeting 2019. March 29 - Apr 3, 2019 so we do not have the full text articles only the headline announcements by Christine Spencer, PhD, research scientist at Parker Institute for Cancer Immunotherapy of her upcoming presentation.

But since then our understanding a bit changed with less respect for the supplements and probiotics and even more caution toward them and more respect for the organic and home cooked food. There are traces of the antibiotics in may unexpected points of the food mass production. We now more appreciate the harm the small antibiotics and toxins dozes could inflict to microbiome.

I would also add to Ivan list of the fiber-microbiome-response to ICI things - in some people they might still not work by the reasons beyond control. There is a research done in mice that the fecal transplant is able to restore the response to ICI drugs - as a proof of principle. Looks like a low risk option and in many places you can pay to have it done by a professional, using the verified active culture from someone they work with.

Professionals will only do fecal transplant for treating recurrent c. Deficile infection regularly. Not saying it's not possible to convince them but it's definitely not an indicated medical use of FMT.

Nhi, I'm gonna copy paste a section of the microbiome document in working on below. It's preliminary -

Ruminococcaceae are promoted by eugenol and were found to be reduced by antibiotics in an animal model.8,15 Foods such as basil, cinnamon and bay leaves are good sources of eugenol.73 They are also promoted by the addition of walnuts to the diet, which generally has a very beneficial effect on the microbiome.72 Faecalibacterium are promoted by inulin, short-chain fructooligosaccharides (FOS), and somewhat decreased by Omega-3.21,28 Good sources of FOS include onions, asparagus, wheat, and tomatoes, while inulin is found in sugar beets, leeks, and asparagus. Patients with IBS should beware of possible FOS intolerance.12 F. prausnitzii may require the presence of metabolically complementary Bacteroides thetaiotaomicron which are promoted by a diet high in galactooligosaccharides (GOS) found in legumes, asparagus, and broccoli.33,34 Bifidobacteria are also promoted by GOS, and Omega-3.28

Akkermansia muciniphila is promoted by FOS, inulin, and polyphenols.9,24 Good sources of polyphenols include cocoa and dark chocolate, berries, flaxseed, nuts, olives, and basil.74 Murine and human studies report Omega-3 consumption as beneficial.27,28 An alarming case report noting a significant decrease in A. muciniphila with Omega-3 use exists.26 This reiterates the highly individual nature of promotional strategies, and serves as a reminder that microbiome testing is imperative to verify their effectiveness in the individual. No simple relationship between Omega-3 and gut microbiota exists.28 Additionally, a high FODMAP diet was found generally beneficial to A. muciniphila.29 An increase in Bifidobacteria was also shown to increase A. muciniphila abundance.22

Most of these substances mentioned as promoting by Ivan are avail. in supplements form. Our experience with the supplements is somehow negative as they caused a gastrointestinal distress in Ivan's case, few of them. Also do not assume your own microbiome is insufficient or bad, you just need to feed them well and not to kill them/suppress by something they do not like.

Great info guys, thank you.

But if there is presence of IBS...high fiber diet is still suggested?

Jen
Have all other avenues of possible causes ( ie IBS)been eliminated ?
No diverticulitis ?
And scans and or colonoscopy ?

Primary colitis ( diet and or predisposed) and or secondary colitis ,to immune therapies etc?

Immunotherapy?

Hi Tanya,
immunotherapy refers to immune checkpoint inhibitors here (PD-1 or PD-L1 blocking drugs that take off the immune system brakes and it starts its unlimited hunt all over the body - in that case if the sarcoma was able to escape the immune system control by using the PD-1 or PD-L1 mimicry it gets caught now).

Asking for advice: My son had to go on antibiotics for a spot that was not healing after surgery so he is doing yogurt and probiotics. any other suggestions? He is more lethargic lately too, but his hemoglobin was 8 back in june after surgery. he has labs this wednesday. Thanks

1. He is more lethargic - was his adrenal function measured? Is he getting other endocrine tests?
2. How to improve the microbiome after the antibiotics. He can get a short course of the high dose probiotics from the fridge kept type, he needs Bifidobacterium breve and longum. Although this subject is controversial if probiotics actually improve the microbiome. More whole grain type of carbs or berries with the seeds and skins that provide a food for the microbiome.

Hey Olga, Sam hasn’t had his adrenal gland function checked, so I’ll have to ask. He still has a surgical spot that isn’t healing well so he’s keeping it covered with saline covered gauze. He has been eating blueberries and blackberries. He usually heals so quickly but this last surgery of the jaw was more complicated. However, he was already alittle worn down from brain surgery and radiation. Thanks for your advice!