Folic acid / folate and 5FU dangers, L-glutamine and asian mushrooms - some questions

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deanfromuk
Posts: 10
Joined: Fri Aug 24, 2018 1:36 pm

Folic acid / folate and 5FU dangers, L-glutamine and asian mushrooms - some questions

Postby deanfromuk » Sun Aug 26, 2018 7:43 am

Thanks to a heads up by rp1954 i have been reading up on his monumental journey with her partner and also the dangers of folate with 5FU and how it drastically cuts the potency of the chemo https://www.ncbi.nlm.nih.gov/pubmed/27175995 and the aforementioned toxicity. I have read through many of the forum posts about folic acid and it seems avoiding folic will be a must (easier said than done it seems since it seems here in the UK folic acid is added to everything even my mums fortisips)

What I have learnt so far is folic acid is water soluble and eliminated from the body quite quickly without being stored so is it safe to assume my mum who will be starting FOLFIRI soon should avoid folates at all costs a day or two before her infusion, the 2 days her pump is going and then she is OK to add some modest folate ie greens / fruit / cereals to her diet again as the 5FU will have been eliminated from her body? Or should she refrain from folic acid / folates for additional time after the chemo is finished?

Her diet is quite high in fruit and veg and cereals at the moment, any ideas on folate-free meals / snacks we can feed her up on during her chemo weeks or healthy high cal foods? As I mentioned in my previous post her onc merely said no grapefuit, wasnt keen on supplements but didnt really say no (typical British by the book onc) just said she can eat what she want but i have read other oncs are perfectly OK with glutamine to potentially reduce chemo symptoms. Does anyone have experience to share with glutamine supplementation during chemo and if it works and what their oncs said?

Do people recommend mushroom extract and if so at what doses did you find they helped ? I also have her on turkey tail, maitake and reishi after reading in multiple sources and pubmed studies Asian countries have used them for decades as adjutant therapy for chemo with promising result so does anyone have positive / negative experience with mushroom extracts? I am slightly concerned the reishi which I recently started her on has caused some stomach pain / nausea although these bouts coincided with her taking laxido laxative which apparently lists such as a side effect, i have also read these side effects can be temporary with reishi

I am aware of cimetidine although the hospital has her on ranitidine, would it be worth buying cimetidine or asking for cimetidine or is ranitidine marginally superior as potentially suggested in this study? https://www.ncbi.nlm.nih.gov/pubmed/15573918 My guts say keep up on the ranitidine but as I have said this is all very fresh to me and I am learning as I go

Thanks once again to all the knowledgable angels in the forum. Her cancer is quite serious so we dont want to fluff the folfiri and are in very uncharted territory at the moment and due to our health care can't change our onc for an integrated treatment one or one willing to move outside of the NHS checklist. Her oncologist is competent just uncommunicative regarding my diet / supplement questions, an upper and lower GI specialist and we are at a big hospital here in the West Mids for any brits so unless we try for another hospital which would be dangerous we are stuck with what we have which while OK for now i admit I trust the onc in regards to chemo choice / surgery options but the advice in this forum regarding supplementary

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Folic acid / folate and 5FU dangers, L-glutamine and asian mushrooms - some questions

Postby stu » Sun Aug 26, 2018 2:02 pm

To be honest I think you will be hard pushed to find anyone with more knowledge than rp1954.
Glad you got the info about the folate sorted . It’s in everything now . So difficult to avoid .
All the best to your mum ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Folic acid / folate and 5FU dangers, L-glutamine and asian mushrooms - some questions

Postby rp1954 » Sun Aug 26, 2018 3:47 pm

Our usage is somewhat different, 24x7 oral 5FU, intensified by other milder drugs and natural molecules, rather than 5FU cyclical with iri- or oxi-. We don't use as much glutamine as oncologists recommend for Folfiri patients do. It isn't needed in such great quantitities - covered also by IV vitamin C, PSK, natural human folate (L5MTHF, levo 5 methyltetrahydrofolate) and other nutrients. IV vitamin C, especially with some other molecules - natural and not, inhibits KRAS/BRAF mutant cells and probably most CA199 high ones too.

There are three kinds of vitamin B9 discussed here - leucovorin (abbreviated LV, folinic acid, really calcium folinate), L5MTHF, and folic acid. LV is added to help 5FU bind to a biochemical defect, abbreviated TS, in the cancer cell, not healthy cells. The LV binding to 5FU and TS is more than a 100x stronger than the L5MTHF binding to 5FU and TS. Oncological leucovorin, LV, is supplied in concentrations ~20x (us, daily oral) - 2000x (oncologists) higher than +normal dietary natural folates in any case. There are 7-8 plant folates (B9) that are close to human/animal L5MTHF and are supposed to easily interconvert but I don't know their details with 5FU. We just use liver products from whole liver to pate and liverwurst.

Folic acid in fortified foods, mostly grains, flours and crappy multivitamin versions, is what has to be avoided, largely in agreement with the paper you mentioned. A lot of people don't metabolize folic acid correctly in one or more steps, from folic acid to LV to Cofactor (L5,10 MeTHF) to L5MTHF. Folic acid will even build up abnormally in the bloodstream AND slowly metabolize with 5FU into some highly toxic molecules that kill good cells rather than cancer cells. Folic acid is a conditional poison and for about half the people, 5FU is that condition.
Last edited by rp1954 on Sun Aug 26, 2018 9:46 pm, edited 3 times in total.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Folic acid / folate and 5FU dangers, L-glutamine and asian mushrooms - some questions

Postby heiders33 » Sun Aug 26, 2018 3:49 pm

I might be starting Folfiri soon and would like to know some of this as well. Good to know about folic acid, and also about glutamine, which I had been taking for neuropathy. I took Turkey Tail mushroom extract as well, and I have no idea if it helped me or not, but I didn’t get sick during treatment. I didn’t take it every day, as I had to take it out of the capsule due to the ileostomy, and it was a pain and tasted bad. However now that I can take capsules again, I may start taking it again if my integrative care doc recommends it.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Folic acid / folate and 5FU dangers, L-glutamine and asian mushrooms - some questions

Postby heiders33 » Sun Aug 26, 2018 3:52 pm

rp1954 wrote:Our usage is somewhat different, 24x7 oral 5FU, intensified by other milder drugs and natural molecules, rather than 5FU cyclical with iri- or oxi-. We don't use as much glutamine as oncologists recommend for Folfiri patients do. It isn't needed in such great quantitities - covered also by IV vitamin C, PSK, natural human folate (L5MTHF, levo 5 methyltetrahydrofolate) and other nutrients. IV vitamin C, especially with some other molecules - natural and not, inhibits KRAS/BRAF mutant cells and probably most CA199 high ones too.

There are three kinds of vitamin B9 discussed here - leucovorin (abbreviated LV, folinic acid, really calcium folinate), L5MTHF, and folic acid. LV is added to help 5FU bind to a biochemical defect in the cancer cell, not healthy cells. The LV binding is more than a 100x stronger than the L5MTHF binding and oncological LV is supplied in concentrations ~20x (us, daily) - 2000x (oncologists) higher than dietary natural folates. There are 7-8 plant folates (B9) that are close to human/animal L5MTHF and are supposed to easily interconvert but I don't know their details with 5FU. We just use liver products from whole liver to pate and liverwurst.

Folic acid in fortified foods, mostly grains, flours and crappy multivitamin versions, is what has to be avoided. A lot of people don't metabolize folic acid correctly in one or more steps, from folic acid to LV to Cofactor (L5,10 MeTHF) to L5MTHF. Folic acid will even build up abnormally in the bloodstream AND slowly metabolize with 5FU into some highly toxic molecules that kill good cells rather than cancer cells. Folic acid is a conditional poison and for about half the people, 5FU is that condition.


Rp, do you think IV Vitamin C is beneficial for folks like me with no genetic mutations?
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Folic acid / folate and 5FU dangers, L-glutamine and asian mushrooms - some questions

Postby rp1954 » Sun Aug 26, 2018 4:12 pm

So we use less LV with natural (liver) folates and 5FU daily, NO folic acid, and no problems, along with various adjuncts, natural and not, targeted and not. With a much better track record than most folfox/folfiri for low post surgical residues.

Cimetidine is the original, weakest blockbuster drug as an antiacid. But it is head and shoulders above rantidine for cancer inhibition and immune function if correctly targeted with CSLEX1 and CA199. Note: no hospital or lab does these tissue stains without tasking and $, and most are resistant. We initially decided odds with the CA199 blood test alone.

The rest of the newer proton pump inhibitors are worthless for these side benefits and even interfere with cimetidine. Women seem to tolerate the highest cimetidine dosage, 1600 mg per day, better than men. Cimetidine and others are partly based on information from blood CA199, LDH and CEA, so these tests before and after surgery were non negiotiable for us, more important than any particular doctor ("bye"). In the specific case of my wife, most of her peritoneal deposits were attacked and destroyed by massive immune reaction (including neutrophil recruitment) while on cimetidine and massive natural adjuncts during the initial four weeks before surgery (or chemo even later).

Again cimetidine is mostly a perioperative drug, say 1-4 weeks before and after surgery, unless carefully targeted for 5FU based chemo. Cimetidine usually has side effects (harshness) with fofiri, so easy does it in any case there. Celebrex (celecoxib) is a post operative pain drug that also in many mCRC cases, completely replaced oxi- and iri-. So we eventually used celecoxib with 5FU, extended by a lot of natural adjuncts based on various performance predictions and data.

Turkey tail extracts varieties have two common approaches - alcohol extracts including PSP from China, and hot water extracts including PSK from Japan. PSK-like is considered the highest quality version for daily 5FU, as it was developed.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Folic acid / folate and 5FU dangers, L-glutamine and asian mushrooms - some questions

Postby rp1954 » Sun Aug 26, 2018 5:09 pm

heiders33 wrote: Rp, do you think IV Vitamin C is beneficial for folks like me with no genetic mutations?

That question has several considerations. First considers any CA199, LDH, hsCRP, AFP, CEA history, data points, or series. Second, the mutation tests are not complete or absolute in several senses e.g. missed or treated samples, or mixed, heterogeneous mets, or future changes. Third, IV vitamin C has other uses like infection, wound healing, diabetes, toxic exposures and deep depletions, that are overshadowed by KRAS/BRAF mutations for long term use.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

deanfromuk
Posts: 10
Joined: Fri Aug 24, 2018 1:36 pm

Re: Folic acid / folate and 5FU dangers, L-glutamine and asian mushrooms - some questions

Postby deanfromuk » Sun Aug 26, 2018 7:06 pm

rp1954 wrote:Our usage is somewhat different, 24x7 oral 5FU, intensified by other milder drugs and natural molecules, rather than 5FU cyclical with iri- or oxi-. We don't use as much glutamine as oncologists recommend for Folfiri patients do. It isn't needed in such great quantitities - covered also by IV vitamin C, PSK, natural human folate (L5MTHF, levo 5 methyltetrahydrofolate) and other nutrients. IV vitamin C, especially with some other molecules - natural and not, inhibits KRAS/BRAF mutant cells and probably most CA199 high ones too.

There are three kinds of vitamin B9 discussed here - leucovorin (abbreviated LV, folinic acid, really calcium folinate), L5MTHF, and folic acid. LV is added to help 5FU bind to a biochemical defect, abbreviated TS, in the cancer cell, not healthy cells. The LV binding to 5FU and TS is more than a 100x stronger than the L5MTHF binding to 5FU and TS. Oncological leucovorin, LV, is supplied in concentrations ~20x (us, daily oral) - 2000x (oncologists) higher than dietary natural folates. There are 7-8 plant folates (B9) that are close to human/animal L5MTHF and are supposed to easily interconvert but I don't know their details with 5FU. We just use liver products from whole liver to pate and liverwurst.

Folic acid in fortified foods, mostly grains, flours and crappy multivitamin versions, is what has to be avoided. A lot of people don't metabolize folic acid correctly in one or more steps, from folic acid to LV to Cofactor (L5,10 MeTHF) to L5MTHF. Folic acid will even build up abnormally in the bloodstream AND slowly metabolize with 5FU into some highly toxic molecules that kill good cells rather than cancer cells. Folic acid is a conditional poison and for about half the people, 5FU is that condition.


Thank you for this trove of knowledge and I was considering buying a dual extract turkey tail (yes from china) but I think I will continue with my hot water extracted mushroom. Cimetidine is something i will definitely be pursuing should my mum get to the point of surgery if her tumour shrinks enough

Thanks again everyone

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Folic acid / folate and 5FU dangers, L-glutamine and asian mushrooms - some questions

Postby rp1954 » Sun Aug 26, 2018 9:40 pm

If you want to use cimetidine this late, the extra bloodwork with at least CA199 and LDH to look at, is key. Some people definitely should not use cimetidine and these markers help those odds a lot. Again watch for the irinotecan interaction, for which someone else on Folfiri-Avastin used IV vitamin C on KRAS mutants. We got tremendous benefit from cimetidine in the first weeks before surgery. It is harder to be sure of the later cimetidine benefit although we did avoid some serious metastatic spread that everyone assumed would automatically occur. Later, we were better positioned by events to see the favorable impact of celecoxib on biomarkers.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements


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