Mum Just Diagnosed Stage 4 - folfiri + cetuximab soon, sage advice please about supplements and diet

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

Mum Just Diagnosed Stage 4 - folfiri + cetuximab soon, sage advice please about supplements and diet

Postby deanfromuk » Fri Aug 24, 2018 3:14 pm

Hi all, just found this forum and have to say what a godsend to know such a supportive and knowledgable place exists my head has been spinning last few weeks. My mum is 58 and was diagnosed with IBS but after being rushed to hospital early July they found a cancerous adenocarcinoma 2-3 inches in size growing in an unusual place on the outside of her right colon pushing in creating a partial blockage. She had an emergency stoma fitted when she deteriorated due to her colon malfunctioning. We had her first meeting with her onc today 5 weeks after the OP (NHS UK). The mass was left in place during the surgery as the emergency surgeon didnt feel it was appropriate to cut it out at the time

She has mets described as spots by the surgeon locally spread throughout her abdomen on her colon and her last remaining ovary, nothing found on her liver and lung fluid was tested and is clean. The onc and my mum agreed to a plan of 3 months of 5fu, irinotecan 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.

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 after reading up on the various clinical trials on the pubmed databases

My question is when she is having her folfiri and cetuximab is there anything other than grapefruit she should not eat that will interfere with the chemo? Is it safe to still eat her berry smoothies and drink her matcha even though they are antioxidants? 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 ...

Sorry for the barrage of questions but here in the UK 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 I wanted a simple list of foods / supplements to avoid and ones which would be safe to consider

Any advice would be super appreciated as to what we can do, she is very scared since hearing her diagnosis and we are pretty shook up too. We are totally out of our depths and unsure which way to go.

Thanks to anyone who reads this

stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

Re: Mum Just Diagnosed Stage 4 - folfiri + cetuximab soon, sage advice please about supplements and diet

Postby stu » Fri Aug 24, 2018 4:28 pm

Hi ,
Welcome to the forum . I am also in the UK .
My mum is nine years into a stage 4 diagnosis and now find myself careful as most of what we were told may in fact be outdated . We were however told to be careful with the amount of green veg as it contained folate which interacted with the chemo . Not sure if that’s still relevant but it’s worth looking into .
Whilst on chemo my mum lost so much weight calories became the focus for us . After chemo she was able to resume a healthy diet and has done so every since . That’s as much as she has done . She keeps her immune system strong .
Can your mum exercise at present ?
I hope she is coping well in the circumstances.
Others will share their view points I just wanted to say “ hi” .
Take care,
Stu
Last edited by stu on Sat Aug 25, 2018 2:41 am, edited 1 time in total.
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: 1391
Joined: Mon Jun 13, 2011 1:13 am

Re: Mum Just Diagnosed Stage 4 - folfiri + cetuximab soon, sage advice please about supplements and diet

Postby rp1954 » Fri Aug 24, 2018 4:40 pm

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).
watchful, active researcher and caregiver for stage IVb/c CC since early 2010. 8 yrs immuno-Chemo for mCRC, now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher

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

Re: Mum Just Diagnosed Stage 4 - folfiri + cetuximab soon, sage advice please about supplements and diet

Postby deanfromuk » Fri Aug 24, 2018 5:10 pm

Thanks for the warm welcomeguys and great news about your mum Court , mine can walk about a mile (to her gp) and get up the stairs but exercise is out of the question for a while, pain from her stoma and the operation lingering a bit. Calories def an issue for us too, smoothies are a good source and i would love to be able to keep making some for her

To reply to rp1954

no peritoneal carcinamatosis (yet) thankfully the mets seem to be on her remaining ovary (she had one removed 30 years ago) and the diagnosis sheet the onc gave us says ''colon cancer that has spread to other areas within the abdominal cavity including ovary and lining of the bowel'' and details of her chemo and 6 cycles before a scan

The onc didnt explain it too much my mum was upset at hearing it is stage 4 she assumed it was terminal and broke down. The onc said they had tested the tumour genetics and my mom was viable for cetuximab in addition to the standard 2 chemo drugs, the NHS does tend to ration cancer drugs

In terms of dosage 2x 700mg curcumin daily with piperine, 1-1.5g of each of the mushrooms depending on how many pills she feels she can pop, 2x 500mg ashwagandha and 1x 500mg pill of the other herbs as stated as a suitable dose on the packets. I am really looking for something to help kill cancer cells in addition to the folfiri and not replace it or damage its efficacy.Also intending on buying Lifemel honey to try and keep her white cells up

Glutamine I will look into thank you and thanks for the advice about the folates and folic acid, sounds like I have some research to do about which foods to avoid

NHMike
Posts: 1842
Joined: Fri Jul 21, 2017 3:43 am

Re: Mum Just Diagnosed Stage 4 - folfiri + cetuximab soon, sage advice please about supplements and diet

Postby NHMike » Fri Aug 24, 2018 5:26 pm

rp1954 wrote: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).


My sister recommends Lexington (she lives there) as she has had two Stage IV friends do well under the doctor's care there.

Your mother is the same age as when I was diagnosed and it's a tough diagnosis. I do hope that her doctors can come up with a plan to take care of her cancer.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

Re: Mum Just Diagnosed Stage 4 - folfiri + cetuximab soon, sage advice please about supplements and diet

Postby stu » Sat Aug 25, 2018 2:56 am

Hi ,
Form what you have quoted from the report I would be linking in with one of the HIpec centres . Christies has some very experienced surgeons in that field and will give her a consultation. That would be our starting point .
To be honest I am not sure how you go about getting other blood panels here but you could ask your GP .
Beating Bowel cancer Uk has a group of patients with a similar spread . You might find it helpful to review what approaches are available locally .
You are correct in that we don’t have a lot of dietary advise in the UK but I would in addition spend some time seeking surgical options . Reducing the tumour burden was our number one priority.
You will get lots of good info here .
Take care,
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 .

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

Re: Mum Just Diagnosed Stage 4 - folfiri + cetuximab soon, sage advice please about supplements and diet

Postby deanfromuk » Sat Aug 25, 2018 5:39 am

stu wrote:Hi ,
Form what you have quoted from the report I would be linking in with one of the HIpec centres . Christies has some very experienced surgeons in that field and will give her a consultation. That would be our starting point .
To be honest I am not sure how you go about getting other blood panels here but you could ask your GP .
Beating Bowel cancer Uk has a group of patients with a similar spread . You might find it helpful to review what approaches are available locally .
You are correct in that we don’t have a lot of dietary advise in the UK but I would in addition spend some time seeking surgical options . Reducing the tumour burden was our number one priority.
You will get lots of good info here .
Take care,
Stu


Thanks Stu
I originally thought she had very late stage ovarian with ascites and weeks to live (thats what the docs thought) cos the probe they put up her into her bowels found it was on the outside pushing in and it is where her missing ovary should be so I had looked into HIPEC (we are in the west mids so Manchester is reachable) but it was trapped gas and some non cancerous fluid / bile build up not malignant ascites. They were pulling litres of nasty brown bile out of her for days before she went downhill but the stoma set everything right and the bile began circulating

Our onc didnt mention HIPEC, just that there was spread in her abdominal cavity mostly on her colon walls and to her ovary but I will bring up HIPEC when we see her in a week or so and also to our MacMilly nurse about how to refer my mom, I imagine my mom would want to try the 6 rounds of chemo first though like her onc suggested rather than potentially have to wait months for an op and recovery and risk liver or lung mets ?? Not sure how fast it can potentially spread and they didnt test her nodes

The Christie is a great idea I hadnt considered HIPEC would be suitable for this sort of cancer. Will get on it

stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

Re: Mum Just Diagnosed Stage 4 - folfiri + cetuximab soon, sage advice please about supplements and diet

Postby stu » Sat Aug 25, 2018 10:11 am

Hi .
My mum has always had chemo first and for very good reasons . It really did give her good shrinkage and also gives the opportunity to deal with potential spread .
I am no expert as you will have gather and no other experience either as my mum has had liver and lung involvement . I guess you would need more information on what is involved with her abdominal cavity and see if that is included in the guidelines for Hipec . You sound as though your good at research so you could check out the NICE guidelines for her primary and spread and the NICE guidelines for HIpec and you will see the documents the surgeons practice from . It is big surgery and some patients and oncologist prefer to only use chemo so it would be up to your mum I guess .
Chemo has a really big role to play and if that can be backed up by surgery then even better but some patients do well on maintenance chemo and the surgical break is too big a risk so they will only advise her to go for it when all the specialist MDT meetings have agreed . But it might be worth checking out . The oncologist are very good at guiding .
Hope the chemo goes well for her . It sounds as though she has had it rough but glad to hear she is in a better place .
Take care,
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 .


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