Hello
Oh my word this is all very interesting and worrying and apologies if some of this doesn’t relate to this thread (I’m new to this!!).
When I was diagnosed I was told diet had nothing to do with it and to just carry on eating as I normally would. I have always enjoyed chocolate, cake and bisuits but never ate them regularly maybe once a month. I have been very stressed over the years though and I am certain that this played a part in my cancer although I was told it hadn’t been there long I am sure my body just couldn’t take the stress levels any more.
Anyway my apologies if I’m not understanding this thread correctly but sometimes don’t you think that if more research was done into diet, effect of sugar etc and found it to be a major contributing factor in bc then where would all the drug companies be??
I am full of admiration for my onc and consultant but drugs are heavily pushed, for obvious reasons but nothing is ever said about diet or supplements. Even now nearly 4 months after my treatment has finished I still struggle to eat heathily but after reading this I am determined I will…
Thank you to the people on this thread clever enough to interpret the medical jargon and translate it into something easy to understand…
fluffy xx
I’ve just been catching up with everything on this thread and so interesting.
The research to date on IP6 sounds so promising. It may be possible that the lower fibre intake in the West may be another significant difference with countries who have lower cancer rates (?). I’m back to the porridge for breakfast and sticking with whole grain rice. I’d rather not supplement. Any ideas what other food stuffs would be good?
Fluffy - glad you like the thread. I think the points you raise are valid. I think its sad that there isn’t more emphasis on eating healthily when we’re diagnosed. No-one wants a lecture at that time but a very gentle nudge in the right direction would be good. It would be so tempting to comfort eat but we know the importance of maintaining a good weight, having good nutrition etc.
There has been a lot of dodgy stuff published on the internet etc on diet which has not been backed up with research. I think sugar is one of those things. it can mean that everything gets tarred with the same brush.
That is in marked contrast to the type of research that Finty and others are so good at posting.
Much of the research into diet is still in its infancy. Many of us don’t want to wait to hear about it when it hits the headlines but would rather review what research is currently around. That’s what this thread is all about and its great. Elinda x
Hello everyone
Can I just remind you of our Community guidelines, in particular “Sharing experiences is at the heart of the forum, but please be careful not to give medical advice.”
May I also mention that any changes to your diet are best discussed with your specialist team to ensure it does not compromise your treatment in any way.
With very best wishes
June, moderator
Can I ask about this comment please. I don’t think anyone has been giving medical advice have they or have I missed something?
Elinda I think it was a post of mine responding to someone who asked about dosages from the IP6 supplement.
finty x
Hi, i asked my Registrar about IP6 today. She had never heard of it. I have a meeting with my Consultant Onc on Thursday so will print out some of the articles posted a few days back nd see what she makes of it. I will let you know, but hope this is ok to do on this site? Is this just sharing info rather than telling people what to do?
Sadie Xx Xx
Thanks Finty, but unless I’m still missing something I’m confused. It can’t be your posting because you said to ask our Oncs about IP6. The other comment was by someone who asked their GP - surely we can post what our GPs say?
I would be very grateful if the moderators could clarify what the issue is so we can ensure that we don’t post something wrong again.
many thanks, Elinda x
Hi Elinda
Finty is correct that it was a posting of hers that sparked the message from the moderator, and it was about posting dosages. The information was edited out of Finty’s post, so I can see that it’s now difficult to see what the problem was.
It can be a fine line between sharing experiences / research that you’ve found, and giving what could be seen as medical advice. It is important for the safety of forum members that you avoid giving medical advice, which is why this point is highlighted specifically in our community guidelines breastcancercare.org.uk/forum/community-guidelines-please-read-t25602.html
I hope that makes things a bit clearer.
with best wishes
Leah
Thanks very much Leah, that makes sense now. I hadn’t seen the original post with the doses in so was a bit concerned about what the problem was.
Thanks for clarifying, we’ll know what to avoid in future. Elinda x
Sadie - you should be fine to post what your Onc says about IP6 as long as you make it clear it is what he says for your individual case. I think everyone should always check supplements with their Oncologist before taking. Elinda x
Hi Everyone
I have also raised the issue of IP6 with my specialist team. Got the standard response, nothing you do will alter your outcome and a general non-acceptance that diet has any effect BUT they have agreed to look at the research and I am going to forward it on them.
I have explained that I am keen to try this even if they think there is no benefit so long as they are OK that it will not adversely affect my treatment.
Thankfully, I will not be seeing Dr Nasty again and future meetings will be with the consultant radiologist who is more “patient friendly”, I am so relieved, the thought of trying to raise this with Nasty sent my stress levels into orbit!
Thanks for all the work you all put in on this, it is good to know that I am not the only one who thinks that what we eat makes a difference.
DaisyGirl
Hi all i will let you know what my gp says he commented that they are all stuck by guide lines they are not allowed to offer any dif treatment to what he trained to do even if it works he also told me to go for it as he knows some plp had had amazing results just by changing their diet I don’t think anyone wld say yes take ip6 as one it’s not been tested and 2 they are not allowed I asked my onc he just sd get some and he wld look but wldnt give me a def answer tc laura
Really interesting comment laura. I had relatively young, forward thinking oncs and yet they had only passing interest in the diet issue.
I have recently been on a mediation fast in Bali and met incredible heath professionals who have dedicated their lives to heath, nutrition and well-being. They have worked personally with people who, through diet, herbs and mediation have beaten cancer - stage four cases. There are no guarantees and one herbalist I met thought that a person had to have the right ‘constitution’ or personality to be strong & dedicated enough to overcome major disease.
I am very pleased I took the chemo option, but I actually had a lump grow during FEC chemo! So I am no longer relying on the standard lines peddled out by the NHS.
Loving the info on IP6. Does sprouted brown rice have the same amount? Who is supplementing?
Hi Gretchen
If you pm me what you want to know I’ll try to help
I’m already aware of possible benefits of eating some types of mushrooms when on chemo (ref Servan-Schreiber’s Anti-cancer book) but have now been reading about the “turkey tail” mushroom and it’s supposed to help with breast cancer. The “cultured garden” website writes about it and refers to the MDAnderson clinic in Texas. Just wondering if anyone has any more info - and info on reliability.
Common / Usual Names:
"Turkey Tail
Description:
Formerly known as Coriolus versicolor and Polyporus versicolor – this is a polypore mushroom which can be found throughout the world. Versicolor means ‘of several colours’ and it is true that this mushroom if found in a wide variety if different colours. T. versicolor is called Turkey Tail in the United States because of its resemblance to the tail of the wild turkey. T. versicolor is recognised as a medicinal mushroom in Chinese medicine under the name yun zhi. In China and Japan T. versicolor is used as an immunoadjuvant therapy for cancer. The United States’ top ranked cancer hospital, the MD Anderson has reported that it is a ‘promising candidate for chemoprevention due to the multiple effects on the malignant process, limited side effects and safety of daily oral doses for extended periods of time.’
Hi Gretchen - I started taking an IP6 supplement today.
Hope it helps Flinty
Will definitely get some.
While I can’t offer the scientific research papers, here is a little of what I learnt last week on my mediations fast in Bali:
Enzymes: a big focus on enzymes. Raw food has all the enzymes we need to digest food and go easy on our organs. The body spends less energy on digesting food so it gives us more energy for other activities. Also doesn’t stress the organs. This was tied up with immunity and the idea that cancer is an immunity disease.
Apart from a little cooked rice, I am yet to eat anything cooked. Felling good and before I make any great proclamations, am looking at staying 99% raw. I’ve bought a food dehydrator and trying to make some yummy nut based crackers and ‘burgers’.
Pancreatin was highly recommended. Not looked into this too much, but think I will get some.
Very important to eat organic, non-gm nuts seeds and beans. These still have their digestion enzymes. Sprouting is excellent
The idea that tomatoes need to be cooked to get the best out of them is a bit of a marketing myth perpetuated by a tomato sauce company a few years back, raw toms are great for digestion.
The info discussed on oils was all backed up. Very important to eat cold pressed and not to heat/ heat very gently. Don’t cook any nut or seeds.
NO meat, no sugar, no dairy and NO soya and no alcohol.
Really, really look after your liver and colon and other organs.
Fasting and colonics are also very helpful.
This isn’t advice! (lol), it is merely a few notes that I learnt while away, from very educated people. Take what you want from it.
Hi Gretchen, very interesting thanks. Glad you enjoyed your trip and came away with lots of good things. xx
IP6 - I don’t think we’ve had this article posted. It is a great evaluation of how IP6 works, where they are with the current research and what it may hold for the future in terms of cancer treatment. It is an academic paper published in Current Cancer Therapy Reviews in 2010 (by A Matejuk and A Shamsuddin).
ip6gold.com/wp-content/uploads/2010/02/IP6-in-Cancer-Therapy-Past-Present-Future.pdf
Gretchen - glad to hear you had such a good trip. I think all of us have to find what works for us as individuals and what we’re happy with.
You may (or may not) be interested to see the research about raw food versus cooked which I posted a little while back on here:
scientificamerican.com/article.cfm?id=raw-veggies-are-healthier
Elinda x