Here are my suggestions for the early days
1. Get a blood tests with extra cancer markers
and discuss them here.
Potentially a big hospital is fastest (report today possible) but will often bog down for days or longer. The other question is whether they accept patient requests/demands for uses (extra tests) when they don't understand about underutilized research. I'm not sure if you can order blood tests yourselves in UK. The biggest deal is finding a tolerable but effective formulation with chemo and supplements.
2. Find integrative medical support including by phone.
deanfromuk wrote: mets described as spots by the surgeon locally spread throughout her abdomen on her colon and her last remaining ovary,...
That's deadly serious stuff and needs chemo. She might
qualify for HIPEC somewhere or some other multimodal series of treatment. Did they give any more description or grading between peritoneal mets and peritoneal carcinomatosis or mention HIPEC, EPIC for later?
and due to the genetic test of the tumour coming up OK she will be on cetuximab too, once the 3 months are up she will have a scan to see how it is progressing.
They are doing an empirical trial of Erbitux to determine treatment without the genetic data??? Did they cite other data or statistics? What we did was look at CEA, CA199 and LDH and make an estimate on other drugs while working on tissue data. We eventually got the most answers with living
tissue data but had to make the most important decisions from blood tests first.
My mum has been following the eattobeatcancer.org anti-angiogenic diet, lots of matcha green tea, berry smoothies, green cruciferous veg and nuts and fish and herbs when I raised this with the onc and asked her what my mother should / could eat that wont interfere with the chemo all she said was no grapefruit and pomegranate which isnt much help and eat whatever. Also have been giving her curcumin with piperine, supplements of mushroom extract (turkey tail, maitake, cordyceps), astralagus and ashwagandha to boost her immune system, grape seed extract and mediterranean herbs
1. Nutrition is not a substitute for chemo, especially 5FU content, it is in addition to. What dosages have you used so far?
2. the issue is whether she can improve the situation more than Folfiri and/or Erbitux and how to do that best.
Should we refrain from feeding her these a few days before her chemo and a few days after only or does the chemo continue to work the whole 2 weeks? Are the supplements i am giving her safe with chemo or should I discontinue all or some? Are there any supplements / foods you guys recommend I have missed to either help with the cancer or help with the chemo side effects? I have seen IP6 and others mentioned on the forum after browsing it the last hour ...
Opinions will vary. Actual experience counts vs speculation (both sides). After chemo, gastric upsets may make oral supplements difficult for some days. One patient used IV vitamin C to help Folfiri Avastin for several extra years, after she almost quit the first year, but that is best for Kras/Braf mutants.
Glutamine is often recommended for Folfiri gastric side effects, now even by oncologists. For any 5FU based chemo, minimizing (eliminating) folic acid is beneficial because of unnecessary toxicity for most people, sometimes severe toxicity. Folic acid is the common, cheap, inferior synthetic form of vitamin B9 in many multivitamins and fortified foods. We use the natural folates in liver to improve the healthy cells while my wife is on daily chemo. The lack of accurate folic acid / natural folates information damn near knocked my wife off chemo after 3 months, and the dose reduction had unsatisfactory efficacy too. With natural (liver) folate, and perhaps some extra supplements, she was able to increase her chemo dosage 33%-50%, with fewer side effects.
....the oncs seem to have very little interest in the diet / supplement aspect and integrated oncology is not really a thing here as we cannot go shopping for an oncologist as you can in other healthcare systems. I was not impressed by the responses to my questions today
Welcome to the club. You might get some naturopathic type diet and supplement advice for chemo by telephone, both paid (e.g. Lexington
) and for free (Riordan clinic or Life Extension).