Diet and supplements: Is anyone here following a... - My Ovacome

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Diet and supplements

Kittycat76 profile image
51 Replies

Is anyone here following a so-called cancer diet, or taking supplements that are supposed to help? I'm really confused because there is so much advice out there, and some of it is conflicting. I'm thinking it's probably wise not to take supplements during chemo, but maybe after? And should I go vegan? Eat only raw foods? No raw food? High protein? Low protein? Should I only eat whilst standing on my head and tapping my feet on the wall to the beat of the Macarena? It's all so confusing! What works for you?

Kitty

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lesleysage profile image
lesleysage

Hi Kitty,

Maybe ask Ovacome as at their Health and Wellbeing Day last Saturday there was a session on diet and cancer. I wasn't able to get to the day, but I'm pretty sure the Support Service manager, Anna, will be able to share the information given to members on the day. Lesley

Kittycat76 profile image
Kittycat76 in reply to lesleysage

Thanks for the tip, Lesley!

Seasun36-uk profile image
Seasun36-uk

Hi Kitty,

‘Can of worms’ comes to mind! 😂

The overall consensus seems to be keep all foods natural, focussing on vegetables, some fruit, protein and a wide variety of nutrients.

The Oncologists seem to shake their heads (no) while you are on treatment, re trying supplements, but afterwards seems ok.

Cancer seems to ‘like’: inflammation, comprised immunity, low oxygen.

So anything to reverse that (for me) makes sense: anti-inflammatory foods (mainly fruit/veg), deep lung-fulls of air (walking etc) and reduced ‘stress’ (seeing people you love, doing things that are good for you etc.). Making post treatment plans, having (good) treats. Seeing animals, sunshine, green plants/trees, the sea (for me).

Just a few ideas! 😀 oh and a glass of vino (although it doesn’t taste the same on chemo!). Nice afterwards though.

Hope this helps..

Linda xoxo

Kittycat76 profile image
Kittycat76 in reply to Seasun36-uk

Yes, I thought I could sense those worms squirming their way out of the can even as I was typing!

Those are some amazing tips that I will definitely take to heart, so thank you.

My oncologists told me they were ok with turmeric supplements during treatment, and to check with them before taking anything else, so they are not too strict.

Welshandproud profile image
Welshandproud in reply to Seasun36-uk

Linda so very true. You echo my thoughts precisely x

Kryssy profile image
Kryssy

Linda has hit the nail firmly on the head. Big, big can of worms. No one person's advice is going to be the same as another. We are told in France, NO SUGAR in any shape or form where others are told sugar is fine. I eat healthy foods and yet here I am stuck in hospital with two blockages. Who is to know? I think it is wise to eat what you think is best for you and if it doesn't agree then don't eat it again. But, treats are essential. After all, dark chocolate is supposed to help raise the red blood cells so bring it on - but then there's the sugar content.

I do take my supplements and have never stopped. If you are on Taxol then it's worth looking up the role that L-Glutamine and Alpha Lipoic Acid may play in protecting the nerve ends. My oncologist was more than happy that I tried it as I was in such a bad way. It's all clear now but I still dip into the L-G and ALA if I feel a tingle. Plenty of info here. Just type in the search box top right. Leave Google alone.

No two people are alike with their cancer or their chemo responses so no two people are going to need/want the same diet. Do what is right for you and what makes you happy.

xxxx

Kittycat76 profile image
Kittycat76 in reply to Kryssy

I was also told no sugar, except from fruit. But you are absolutely right. No "one size fits all" in cancer treatment. If only!

I will look into L-Glutamine and Alpha Lipoic Acid. Thanks so much for the tip.

Kitty

27-359 profile image
27-359 in reply to Kryssy

Hi Kryssy.

I have neuropathy still, one year after finishing chemo, and thought it was too late to take the L-G and ALA now. Do you think it might help if I take it after this amount of time?

Jenny

Kryssy profile image
Kryssy in reply to 27-359

Hi Jenny.

Yes, I really do think it will help you. If you read my profile you'll see how bad I was on just one dose so it was stopped. I spent a week in hospital last August paralyzed and told that it would be like that forever. They didn't know about my strong will. Through this forum - and ashamedly a bit of Dr Google - I read about L-G and ALA. Started them about a month after my paralysis. Onco was all in favour of trying anything since he was upset that I had had such a bad reaction to just one Taxol. Hubby having to cut my food up was the worst shame for me. I refused a zimmer frame as that would have been the end. After about a week or so I noticed that the pain was subsiding and I could move my fingers more, so I carried on until Christmas. I took up knitting again, badly, as I needed woolly hats for my baldness. Every night, without fail, hubby would sit next to me on the sofa and massage my feet and hands for hours and hours whilst he watched t.v. All this, I'm sure, speeded up the recovery. By Christmas I was virtually back to normal so came off the pills. I would get a flare up after chemo but just took the pills the night before and for 3 days after and it never amounted to anything. Caelyx did have a small impact on the PN so I did the same. I noticed that when I got shingles I had pain at the site but not a lot. But, my fingers and toes started to tingle. As shingles affects the nerve ends I thought that I may as well try my pills again - and it worked. Whilst in hospital this week I wasn't having the shingles pills and the tingling increased. So, it must all be linked. They've now given me the pills but at 3 times the dose I had from the GP. The tingling has all about gone and I've certainly not had any of my supplements since being here so it must be the shingles affecting the PN.

So, on that rather lengthy subject and the fact that some of us got shingles, as it's brought on by low immune etc., I would strongly recommend you ask - nay, demand - to have the new shingles vaccine which is out now. Once you get the virus you cannot have the vaccine. It is called Shingrix and is made from dead cells rather than live so is much better for us chemo patients. Please try. Here is a link. health.clevelandclinic.org/...

I wish I had known about it beforehand - as I'm sure does Lorraine. We've both suffered but Lorraine especially as it was in her eye. Another girls wrote of it earlier than I did but I missed it. I don't know how to make sure all new girls get this news. It could save such a lot of pain and suffering on top of what we already have to put up with. xxxx

27-359 profile image
27-359 in reply to Kryssy

thanks Kryssy. I will definitely look into trying those supplements but know I won't get them on NHS! I have had the shingles vac though mine was the live vaccine. My oncologist was ok with it. When o asked th nurse why they didn't use Shingrix, she hadn't heard of it. Perhaps it isn't available in the UK.

I have been following your posts religiously and want to thank you for all the support you offer while involved in a constant struggle yourself. Really hope things are on the move at last.

Jenny

KBM22 profile image
KBM22 in reply to 27-359

Sorry to jump in Kryssy, Jenny & Kitty but this is really useful info thank you Kryssy. I have neuropathy in my toes not too bad but didn’t think was anything could do so will def look into this. Thank you xx

coksd profile image
coksd

Hi I follow a diet which makes me feel really good and energetic I am not claiming it cures cancer or reverses its damage but I try to avoid carcinogenics. I fast from 7.00pm to 7.30am sipping fluids then for breakfast I have a green smoothie containing, raw spinach, raw kale, raw cucumber, tumeric,ginger,green apple and Koko vegan milk and a shot of frozen wheat grass. I drink green tea and water and orange juice during the morning. I take frankincense oil orally. I try to eat as raw and natural as possible. I don't eat meat I use the Koko brand as a dairy alternative. I practice yoga and go for reflexology I have stage IV ovarian cancer and its almost a year since diagnosis. try and use as many organic and unprocessed foods as possible. Avoid refined sugar as much as possible. take care Clare

Kittycat76 profile image
Kittycat76 in reply to coksd

Thanks so much for replying, Clare. Your diet sounds very healthy! I did fast the day before chemo, and might try other forms of fasting as time goes on. I will definitely look into the other things you mention.

Kitty

Alifit profile image
Alifit

Hi Kitty,

There are so many ideas about diet. I was at the Ovacome Well Being day and the lovely dietitians gave a great presentation. There was a printout of the presentation given to the attendees - I wonder if Anna could share the link if she has it. It was suggested that we should follow the recommendations on the World Cancer Research Fund website - I haven’t looked yet so that may be worth a go. Other recommended websites - BDA Food Fact Sheet, Macmillan and NHS Eat Well Guide.

Best wishes, Ali x

Kittycat76 profile image
Kittycat76 in reply to Alifit

Thanks so much, Ali. I will have a look on the websites you mention.

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team in reply to Alifit

Hello Ali and Kitty

Just to let you know we're in the process of adding the slides from the talk to our website - hopefully they'll be available soon.

Best wishes

Anna

Ovacome Support Service Manager

Kittycat76 profile image
Kittycat76 in reply to OvacomeSupport

Hi Anna. Thank you, that's great news!

Alifit profile image
Alifit in reply to OvacomeSupport

Thanks Anna xx

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team in reply to Alifit

Hello Ali and Kitty

Just to let you know it's up on our website now: ovacome.org.uk/Handlers/Dow...

Best wishes

Anna

Kittycat76 profile image
Kittycat76 in reply to OvacomeSupport

Wow, that was fast! Thank you Anna!

Katmal-UK profile image
Katmal-UK

Hi Kitty. I haven't changed a thing in my diet. Eat well, no supplements. Still here 11 years on. Mum didnt change a thing, never had a recurrence of her OC. Maybe we were/are just lucky, maybe I should do more but I honest dont think it makes a difference. Just my view :) xx

Kittycat76 profile image
Kittycat76 in reply to Katmal-UK

You are doing what works for you, and that's the important thing! Thanks for replying. xx

27-359 profile image
27-359

Hi Kitty

I work from the point of view of trying to keep my body as strong and healthy as possible so that it can get on and fight the cancer. I don't actually think that any supplements etc are naturally cancer fighting. I take high strength vitamins and minerals, which I also took throughout chemo. I believe that anti oxidants can affect chemo though. I also take vitamin D additionally during winter and a low dose aspirin . I am lately trialling CBD capsules.

Jenny

Kittycat76 profile image
Kittycat76 in reply to 27-359

Hi Jenny, thanks for replying. I did read about the benefits of low dose aspirin, so that's something I'm considering. Which high strength vitamins and minerals do you take?

27-359 profile image
27-359 in reply to Kittycat76

Hi Kitty. I take something called Propac Gold. It was recommended to me by a naturapath and I have taken it since being diagnosed.

Jenny

Kittycat76 profile image
Kittycat76 in reply to 27-359

Thanks!

Andrea63 profile image
Andrea63

Hi Kitty

I haven't looked at all of the replies but I can see already that some people have mentioned "can of worms". There is a charity called Penny Brohn based down in Bristol who offer fantastic advice on diet, as well as residential courses the do outreach courses at some local cancer centres. They also have leaflets on eating well so it might be worth looking at that. I think Maggie's centres and other local cancer centres run diet workshops.

The talk at the Ovacome day on Saturday was run by two dieticians from Guys and St Thomas'. It was interesting to hear that their advice is pretty much along the same lines as Penny Brohn (PB used to be considered quite alternative). The main difference is that PB recommends a few more vegetables.

The advice from Saturday was to focus on maintaining weight during treatment (I assume that this is unless your surgeons/oncologists advise otherwise) and make any necessary weight loss to maintain health after treatment. The focus is on having a healthy balanced diet with lots of colour and really cutting out the crap (however we do need to have a bit of fun sometimes!). If you are having a healthy, colourful balanced diet, in theory you should be getting all of the nutrients you need from your diet.

The dieticians also talked about some of the diet myths and how our bodies will naturally regulate to balance out any extreme dieting.

Just one tip from me, during treatment I found avocados were good for the hard to eat days. High in calories, good fat and nutrients.

I know that some ladies have done more research into which nutrients we lack and they take supplements but for me the simple approach works:)

Good luck

Andrea

Kittycat76 profile image
Kittycat76 in reply to Andrea63

Thank you, that's great information. How funny that you mention avocados - it was the only thing I could stomach on the third day after chemo!

Januk2612 profile image
Januk2612

If like me, conventional treatment fails miserably (or eventually fails, which is the case for many of us unfortunately) and you discover they have sweet FA to offer after that....the only choices you find you are left with are either doing nothing and waiting for the inevitable or looking at alternatives. Most will put all their faith behind conventional treatments until it’s too late for anything else to be of benefit other than a peaceful acceptance - sorry to be blunt - I really started with masses of faith in conventional medicine so it came as a bit of a shock to me that i’d even have to look at anything else. It’s individual choice but I’m in the camp of looking at / researching integrative / complimentary treatments (conventional AND alternative). A multi-treatment approach....but researching seriously - not so much the stab in the dark bottle of multi-vitamins. Some are useless if taken in isolation. Vegans and healthy athletes get cancer too, so their lifestyle and diets alone will not protect them.

I’d start from here - keep an open mind. Read as much different info as possible. Discount what you believe doesn’t make any sense and if something is working for YOU stick with it. If you can afford to involve an integrative therapist, go for it.

P.S. My opinion of Google is it’s only a tool and as “good or bad” as the user. It will depend on what the user types into it.

google.co.uk/search?rlz=1C9...

google.co.uk/search?client=...

google.co.uk/search?hl=en-G...

Kittycat76 profile image
Kittycat76 in reply to Januk2612

I'm so sorry to hear conventional treatment has failed you. Here's hoping the integrative route makes a massive difference! I read about berberine, but like so many things that have been shown to have an effect, it's not sold here in Norway and is illegal to import. It's really frustrating sometimes.

Coldethyl profile image
Coldethyl

I think that a diet high in unrefined foods and low on what I call beige ( so empty carbs like bread, padtw , rice ) is good for all us , cancer or not - the simple test that a lot of the doctors I follow on instagram use is if it has more than 5 ingredients and/or they aren’t recognisable as real food that your Gran would have known, then avoid - lots of colour on your plate and think about feeding your gut mictobiome with natural probiotics like kefir and fermented food and prebiotics like leeks and garlic - losing weight to reduce oestrogen and some exercise that gets your heart racing as well as some relaxation techniques - none of these can hurt even if they don’t rid you of cancer or prevent recurrence x

Kittycat76 profile image
Kittycat76 in reply to Coldethyl

That's great advice. Thank you.

I can't lose weight - I would fly away like a sad helium balloon, so I'm trying to figure out how to keep my weight up while still keeping away from unhealthy food.

koffeekat99 profile image
koffeekat99 in reply to Kittycat76

I had a similar issue with being underweight. Fortunately post surgery I acquired the most amazing appetite and managed to get up to a healthy weight within 6 months. I admit it included eating scones with jam and cream. I actually don’t like cream but was craving it. I stopped craving it and eating it when I got to a good weight. The jam and scone made it more palatable.

It depends where you are in treatment and with appetite as to how best to eat. If you have no appetite then a dish of ‘kale surprise’ won’t go down well. Though I have discovered the ‘kale martini: making kale palatable’.

One thing I always have in my food cupboard is a pot of almond nut butter (the organic stuff that is just blended nuts and nothing else). As long as you can eat nuts (not allergic) and swallow ok it’s a nice source of protein and good fats for low appetite/low weight. But it is quite sticky, hence you need to be able to swallow ok.

Kittycat76 profile image
Kittycat76 in reply to koffeekat99

Almond butter is a great idea! I'm not allergic, so will pick some up from a health shop tomorrow. I'm glad to hear you got up to a healthy weight after surgery. I'm sure your body needed the cream as you were craving it. I should really learn to pay more attention to what food my body wants instead of giving it what my mind thinks it "should" want.

lesleysage profile image
lesleysage in reply to Kittycat76

HI again Kitty,

Read through, briefly, all the replies. My GP, during my second chemos, also advised not to lose weight as had lost two stone during the first chemo. He prescribed, with the help of a dietician, a tasteless white liquid called Procal (almost 200 calories in a 40ml dose) and also a tasteless white powder, Maxijule, which I added into mashed potato, the vegetable lasagne I made and my rice pudding recipe. I could manage a small portion of rice pud so I made it nutritionally rich using full fat milk (now would use almond or coconut milk) plus dried milk plus Maxijule powder and sultanas and raisins to 'sweeten' it a little. I realise it is 'grey' or 'cream' coloured but it settled happily in my tummy. I also enjoyed almond butter on a ryvita crispbread with a drizzle of honey...and as someone else has shared avocado is a great food. As you are in Norway, are lobster, crab or good prawns cheaper than UK? If so, my GP recommended those for protein.

I'm now 5 years since my second op and chemo and still NED so have noticed how my tummy has gained in ease with more foods...but, like many others here, rainbow colours of foods and starting with raw ingredients as much as possible do settle best for me.

Good luck and, hopefully, happy exploring with new eating!

Lesley

Kittycat76 profile image
Kittycat76 in reply to lesleysage

Thank you Lesley. Lots of great advice. Yes, shellfish is quite reasonable here. So is salmon, which I really love, so I might have to check if salmon is considered a 'safe' food.

Rachael47 profile image
Rachael47

I find a diet of maltesers, toast and coke works for me. Just had much improved scan after 3 rounds of chemo!

Kittycat76 profile image
Kittycat76 in reply to Rachael47

Whatever works! I'm imagining those maltesers rolling around in there like falling boulders, chasing the terrified cancer cells away.

koffeekat99 profile image
koffeekat99 in reply to Kittycat76

Hahaha love the imagery.

koffeekat99 profile image
koffeekat99

Similar to comments above. Common sense.

I did cut out sugar and carbs for a few weeks. After realising that I was shaking a lot I reintroduced carbs.

I’ve found listening to my body is the most useful way to decide what to eat.

I also found that cutting out sugar improved my energy greatly (after the initial period of feeling rubbish as my body adjusted). So on the basis of feeling better without it I limit sugar intake. The discussion around sugar and cancer is complex with a few different takes on it. Personally I do think that processed sugar should be restricted. However I also know that with zero appetite and inability to chew it can be the only way to get some energy. Fortunately I currently have an appetite.

I’d echo that Penny Brohn does good intro to nutrition advice though I’m always hungry after eating there as what they serve up isnt quite right for me. Maggie’s centre do a nice cookbook called ‘The Living Well with Cancer Cookbook’ which follows similar dietary advice.

I’m also not averse to the occasional malteser. I particularly like it when the whole bag accidentally melts together into one big malteser splat.

Kittycat76 profile image
Kittycat76 in reply to koffeekat99

Lots of great advice, thank you! I honestly haven't missed sugar since cutting it out, but now you've got me thinking. Maybe a celebratory malteser is in my future after finishing treatment.

I have been following a cancer diet and take a variety of supplements since my surgery 2 years go. I refused chemo/radiation as a top cancer center told me if they found right drugs I could tolerate, it would only add 8-10% to my overall survival and none of my relatives who did chemo lived past 18 months. For the first year, I was on Budwig (cottage cheese with flaxseed oil) and juicing (carrot/apple) like Gerson therapy. I am now vegetarian with 80% raw diet - no meat/limited dairy/no processed sugar - and take Essiac tea daily. Supplements I take are ginger root, turmeric, black seed oil, D3, B12, Host Defense mushrooms, moringa powder, amla fruit powder, curcumin powder, and pHresh greens. So far my cancer indicators are still normal but the risk for recurrence is always present so I do what I can. I am considering adding RSO oil to my protocol but it just became legal in my state (USA). Praying you find what works for you against this horrible disease.

Kittycat76 profile image
Kittycat76 in reply to

Thank you. How wonderful that you've found something that works so well for you! I will look up everything you mentioned.

KBM22 profile image
KBM22

Hi Kitty

It is indeed a can of worms and so much is a personal choice and this can be an issue people feel very strongly about. Think a few people have mentioned the Ovacome well-being day where the dieticians from Guys & St Thomas spoke. They were very clear that when on treatment weight maintenance is key and as I know from

Other posts you have no pounds to spare that’s probably the most important thing right now. So their advice was that during treatment obvs try and follow the healthy eating guidelines but the priority is getting those calories in and if that’s 6 chocolate muffins it’s belter than not eating! I ate a lot of macaroni cheese.. which I now can’t look at!!

The only non standard thing I did/do is that my mum decided carrot juice was going to save me. I was quite clear that carrot juice wasn’t going to save me the chemo was but I went with it as it gave my mum a plan and something she could do to help and I also decided it wasnt likely going to kill the cancer but it was going to get a lot of good stuff inside me and if it helped in any small way I would be up for it. Obviously as my treatment was successful I am now still drinking the carrot juice (although in smaller quantities) just incase that was what helped it work! I hate carrot juice 😂🤢 but I love my mum!!

I do think it helped avoid some of the chemo side effects and it gave me a lovely carrot glow... seriously!!

Anyway what I think I’m trying to say in v long winded way is I’m not recommending carrot juice but do whatever works for you and don’t beat yourself up if it isn’t always what you think you should be eating x

koffeekat99 profile image
koffeekat99 in reply to KBM22

I know what you mean. For a month family members appeared with meals for my freezer: I don’t have a freezer.

Someone brought a bag full of soya milk to replace my dairy milk: I didn’t drink milk anyway.

I could go on.

But well meaning. I smiled politely, accepted their wonderfully intentioned gifts and then later passed them on to others who could use them.

Kittycat76 profile image
Kittycat76 in reply to KBM22

You're right. I do need to keep my weight up. I've actually bought a bathroom scale to make sure I'm not losing any weight. Your mum sounds lovely! My mum is the same way, but she has decided that broccoli will save me. So I do eat some broccoli every day, even though it's not my favourite thing in the world. I'll start drinking carrot juice too though, just in case. A few people have mentioned it to me already. How much carrot juice do you drink each day? You made me laugh by mentioning the carrot glow, because when I was in my early twenties I drank a LOT of carrot juice. I can't remember why. Anyway, everything was fine during the winter months, but then spring came. There isn't much sunlight here during winter, but when the sun came out, it became pretty obvious to me and everyone else that I had turned a wonderful shade of orange. Not a glow - I looked like an oompa loompa. I remember seeing my reflection in a shop window and wondering why there was a big satsuma floating above my scarf where my face should be. But I'm willing to look like I fell in a tub of bad self tanner if that's what it takes!

bluepeterella profile image
bluepeterella

I was a vegetarian before diagnosis and switched to a vegan diet post diagnosis, including a leafy-green smoothie every day. I have been feeling fine and rather smug since. However I am now reading The Metabolic Approach to Cancer (recommended! Lots of knowledgeable advice) which positively attacks veganism. Lentils are bad, beans are bad, porridge is bad. Meat is good hooray.

While not taking on this approach completely I have changed quite a few things around and am eating a lot more protein-rich foods including meat. I have cut out most grains but can't resist my own spelt and rye bread a few times a week. I think green smoothies are also frowned upon, but the habit is far too ingrained in me now.

I find it all fascinating but if only there was a simple right/wrong formula for us.

Kittycat76 profile image
Kittycat76 in reply to bluepeterella

Yes, it's so confusing. There is so much conflicting advice everywhere. Did you feel worse on the vegan diet than you do now?

bluepeterella profile image
bluepeterella in reply to Kittycat76

I'm not sure I felt worse but had more gripey belly moments before and think my gut appreciates the lowered grain diet. When I look back at what I was eating I can see that I wasn't having enough protein and also that I was eating huge amounts of carbs - so even though I had cut out sugar I was still getting plenty of sugar through carb intake.

I think I'm a bit less breathless and haven't used my inhaler for a long while - don't know whether that could be because of higher iron consumption or more or better proteins?

It's hard to say because I have felt generally well since chemo finished.

Kittycat76 profile image
Kittycat76 in reply to bluepeterella

It does sound like you've found a diet that works for you, which is wonderful because there are so many different diets out there. Do you still eat fruit? I know some cancer diets ban fruit completely because of the sugar. But then there are also cancer diets that consist of fruit only.

bluepeterella profile image
bluepeterella in reply to Kittycat76

Well, it possibly works for me - as my daughter said as she left for her Uni term, we'll see what diet Mum's on when I get back again! I know, so confusing, grapes are supposed to be really good I think, but also high in sugar. I currently eat about one piece of fruit a day and avoid bananas.

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