Anyone who does take supplements may be interested to know the Bodykind website has 25% off most products this weekend. Have used them many times, sell some excellent brands that avoid using fillers, (not all so do check) which are often the problem in the cheaper brands (even my Oncologist commented on that when I took my bag of supplements for her to see). Free postage if you spend over £15 too! Kate x
There is a lot of information in Jane’s book which I remember you saying you have now. Thank you, I’ll look forward to hearing about it..and good luck with the appointment, hope it goes well. Kate x
Hi Kate, I heard that the new drugs were not as severe as palbociclib because they are improving the drugs all the time. They will have side effects but I heard they have been improved since the Palbociclib. I will ask about them at the next Oncology visit. I will let you know what our Oncologist says when I mention the COC. The drugs they use are not chemotherapy drugs. Two of the drugs Philomena has had or still has and we would like to know about the other two. We will research very carefully before agreeing to anything. It maybe that she is not suitable for treatment from the COC because she has other illnesses that she takes meds for and this might make her unsuitable for treatment at COC. We will have to see. I am only just beginning to research everything. I will let you know on this thread. Our appointment is 11th December. Thank you, Kate xxx
I wasn’t aware these drugs weren’t as harsh as Palbociclib, I was under the impression they, and the side effects, were pretty much the same.
Please let me know what your Oncologist says about the COC, I hope I’m wrong and I don’t want to sound negative but many don’t approve because there isn’t enough research. I believe COC is conducting their own which should be interesting if/when released.
Hi Kate, thank you for telling me about why you wasn't given Palbociclib. The reason given does seem a bit harsh, however, the new drugs you mention and Ribociclib (?spelling, lol) are not as severe as Palbociclib but Philomena's Oncologist won't allow her to have any chemotherapy now. She says she can't chance how Philomena will react to it. I understand why she is taking this course of action. If she gives her any chemotherapy after what the Palbociclib did to her she fears it will kill her. We prefer for her to have a good quality of life rather than be ill from the treatment all the time. The taking of her temperature every day and having to go to A&E every time it went over 37.5c was very stressful. That's why we are going to see if her Oncologist will work with the COC in London and provide the information they require and still scan her every 3 months. It's expensive but we have to try everything we can. Thank you so much for the very valuable info you have given to us. Without it I would still be stumbling around blind. xxxxx
Re Palbociclib, it’s only available to those who were diagnosed after NICE approved it, I was already taking Letrozole so didn’t qualify. Like I said earlier there are now several other drugs in the same family, so to speak, as Palbociclib and my Oncologist has told me I will qualify to have one of those, Abemaciclib, when I need to change treatments. I understand you’re very upset about Philomena but my Oncologist told me when I asked her about Palbociclib/Abemaciclib that it doesn’t work for some people, some have a very tough time on it and then luckily some it works well for.
Gazegill sells organic cheese, goat and sheep when in stock, as well as cow. They produce raw cows milk, which they also sell, can’t say if that’s used for cheese as I only have sheep or goat.
Agree, Magnesium was one of the first supplements I started taking after my diagnosis! I had taken it on and off over the years but still felt my levels could be on the low side. I use Epsom or Magnesium flakes quite regularly too and agree very relaxing! I now use a Magnesium spray rather than taking orally. There is considerable research to suggest you should take Magnesium if you’re taking Calcium...vitamin D3 too.
Thank you, Gina. I have Magnesium oil because I have very painful muscles and I have used that on them with excellent results. The only issue I have with it is, I hate the way it dries out my skin. I also have a big box of Epsom Salts so this is a good time to use it up. We both take Vitamin 3D and have done for over a year. We were both short of Vit D so we bought the D3 because we heard that was better, now both our Vit D levels are normal but we still take it. I have to ask the Oncologist if she can take Calcium tablets because I read there could be an issue with one of her other prescription tablets. Thanks very much, Gina.xxx
Thank you, Kate. As Gina says, a lot of positive stuff and information on this thread. May I ask why you don't qualify for Palbociclib, Kate? I thought it was given to everyone with secondary breast cancer? From our experience it's a tough drug but not everyone will have problems with it and it's a good drug if you can take it ok. We are upset it's not suitable for Philomena. I will look at Gazegill Organics and I will probably order from them, thanks, Kate. We have always bought organic produce when it's been available. It's just a shame the supermarkets don't sell more organic chicken and meat. We love cheese so that makes a nice after dinner treat instead of sweet stuff. I haven't come across any organic cheese up to now though. Thank you, Kate. God bless you. xxxx
Can I stick my nose in. Great information you have, really helpful and optimistic.
Can I also suggest Epsom salts baths.
A good way to get magnesium into the body, as well as being relaxing for the body. Magnesium also important for bone health, along with calcium and Vit D.
I have stage 4 with bony mets. Diagnosed in Jan 2018.
Just to add Dot, the farm I order meat from is Gazegill Organics. The couple who run the farm are lovely, it’s been on Countryfile a couple of times, they raise the cows, sheep and pigs but the poultry they sell comes from a nearby farm, still organic though, and the delivery system they have works brilliantly! Kate x
Thank you Dot, it’s refreshing to post about such things and it to be welcomed so positively, which hasn’t always been the case on here!
I think you’ll find quite a few with metastasis who are doing well on just Letrozole and Denusomab who, like me, do not meet the NICE guidelines for Palbociclib at present. That said my Oncologist has told me I can try another of those drugs when this treatment stops working.
If it isn’t too far for you I can thoroughly recommend Unicorn, not everything they sell is organic but all the fruits and vegetables are and they have so much choice. Things like nuts and spices, some will be organic others not but everything is labelled. They also sell organic bread and cakes, nothing at all that they sell contains processed sugar, only natural sweeteners, but do be aware as it’s vegan they do use margarine, not butter, but they list all ingredients. It isn’t expensive either and the staff are lovely. Another option would be a veggie box delivery, again I haven’t used one but know people who do.
Hi Kate, thank you for some very good information. I didn't know Letrazole without Denusomab cause issues with the bones. Philomena's Oncologist did have her go to have dental checks and get a letter from her dentist so she could have Denusomab injections but with all the issues surrounding the Palbociclib it hasn't been mentioned again. It's on my list of things to ask when we go on the 11th. We live about 10 miles from Liverpool city centre so we are around about the same area I think. So your cancer is stable even though you haven't taken Chemotherapy drugs? We find that very encouraging, Kate. I know everyone is different but to read a few positive stories is uplifting for me and Philomena as we start out on her cancer journey again. Thank you for telling me about the Unicorn shop. It's not that far to travel and we can go there for produce. I will look on line for organic grass feed meat suppliers. I am very grateful for the help and advice you are giving to me. It is priceless when you don't know these things and we have not been thinking straight in the last 10 months since they found the cancer had come back again and the awful side effects she got because of the Palbo drug. We are both extremely grateful to you. God bless you, Kate. xxxx
You’re very welcome! In my opinion if you enjoy red meat then have it occasionally but buy organic grass fed, would be my advice. I just don’t like beef, never have, but I do sometimes have lamb. There are excellent farms that you can order from on line, I buy my meat from one in Lancashire. I’m thinking you live in the Liverpool area from what I’ve read on here?? I don’t know how far it is from you but there is an excellent organic cooperative in Chorlton, Manchester called Unicorn. I go there when I’m in the area, the fruit and vegetables are amazing, they sell other things and have a deli counter which they make things for such as curries, salads, dips. There’s also a place in Ormskirk but afraid I don’t know the name or much about it and haven’t been myself.
I had to stop my Denusomab when I had issues with my jaw, because that meant I wasn’t getting any bone strengthener and Letrozole weakens bones I was changed to Tamoxifen. I’m now back on Denusomab, but only 3 monthly, and wanted to go back to Letrozole but my Oncologist preferred me to stay on Tamoxifen for now to allow my bones to recover, other than that I haven’t had any other treatment.
Best wishes, Kate x
Hi Kate, thank you for your very kind message. We have been buying organic foods for a long time but sometimes it's hard to get hold of them. We did eat red meat but kept it to Sunday roast but we will be giving it up. We are going to go for similar food as you are buying. We need to buy a juicer so we can juice green vegetables as well as the right fruit. Having the greens in a glass of juice will help her to get the right greens in to her stomach as her taste is still affected from the Palbociclib. We have begun by getting rid of all processed sugars as I read sugar feeds the cancer more than anything else. Being on the Metformin already is helping, I hope. We only need the other three drugs mentioned on the COC website. I was a nurse too until a car accident put me in a wheelchair aged 37. So, like you, I am careful what I advise her to have. She does have mild to moderate heart failure with AF but it's not causing any problems. She is taking a blood thinner so we have to be careful that she does not take anything that will interact with that. Looking at the drugs the COC would give her I can't see they would cause any problems. As she can't have any chemotherapy now so we have to look elsewhere for help and we have a lot of faith in the COC. Kate, are you taking a chemotherapy drug now or are you tackling it without in the way you have written to me with Letrazole and diet etc.. We have both been taking Vitamin D3 since last year so I will start us both on fish oil. Philomena has started taking Pharmaton multi vitamins. We asked her Oncologist if it was ok and it was so she will get some of everything in that capsule. We are going to follow what you have told us and we will cut down on dairy as well. I have unsweetened almond milk anyway and she said she will go on it too. She has started taking the dog out for her daily walk again now she is feeling better and stronger so that is a good exercise for her. We have always been night owls too and we are bringing back the time we go to sleep by an hour every week. I am aiming for sleep at 11 pm. That is a work in progress but we will get there. On Philomena's last scan the cancer was stable so I take that to mean similar to you (NEAD). I haven't heard of the Penny Brohn Charity but I will look it up, thank you for drawing my attention to it. Thank you so much, Kate, for all your advice and information. You have been a great help. I hope you continue to be NEAD for many years. Thank you so very much for telling us what you are doing to help fight your breast cancer. God bless, Dot & Philomena xxx
I’ve read your post several times, and have wanted to reply, because I appreciate how much you want to help your partner, but I think it’s a case of doing your research and deciding what is best for her, especially as she has other health issues. That said, the changes I did first were to eliminate processed sugar from my diet, I’d always eaten a lot of fresh food but I eliminated processed foods, although I had never been a big meat eater I started to follow an organic (wherever possible) plant based diet, any meat I now occasionally eat, lamb or chicken, is organic and grass fed, fish is wild caught as this is often better than organic, which tends to be farmed. I reduced dairy and use goat or sheep when I do. I made smoothies and juiced (personally I only did this with organic produce). I exercised more and started going to bed earlier (I was a real night owl). and tried not to stress about things, appreciate this is much easier said than done!
I was diagnosed straight to stage 4 with metastasis to my upper spine, I was put on Letrozole and Denusomab (Palbociclib hadn’t been approved by NICE then), I had a repeat scan three months after starting treatment and it was NEAD (no evidence of active disease). I wasn’t taking many supplements during that period as the nurse in me makes me read up before I add them, and I thought it important to not make all the changes at once. Will add at a talk I went to given by Chris Woollams, he said if he could only take one supplement it would be fish oils, closely followed by vitamin D. Also, have you heard of the Penny Brohn charity? It’s based in Bristol. If not please look it up, they run courses, both residential and via out reach, which may help you and your partner. If you decided to go to Bristol you could go with her, and the courses are free for both of you. They cover, diet, exercise, meditation, mindfulness etc, but there is never any pressure to do anything. I went after diagnosis and would thoroughly recommend it.
Hope your partner is doing okay now after her set back on Palbociclib.
Hello ladies, I have bought Jane's book, Starving Cancer without Starving yourself, and we have both requested to join her Facebook group. What I would like to ask of those ladies with breast cancer mets after being clear for several years, what do you do to help fight the secondary cancer please? Including diet, medication, off label drugs, supplements, anything else? My partner and I are very new to this and there will be supplements she may not be able to have due to interaction with other prescription drugs she takes for other conditions. I am hoping to put together a 'cocktail' of drugs and supplements that she can have and present my research to her Oncologist on the 11th December when she sees her again. My partner can't tolerate Palbociclib and after some drastic events following 2 lots of treatment with it, amounting to 5 months, the last 2 months on a reduced dose, her Oncologist said her body cannot cope with it and she doesn't want to take the chance of giving her more chemotherapy. So she is on Letrazole only for the cancer. We both want to give her the best chance possible of living as long as possible with as good a quality of life as possible. I would love to know your stories about your journey and what you do and take to give yourself the best chance of surviving. We need to get some hope from somewhere and be proactive to do the best we can to ensure her survival as long as we can. Thank you to everyone for your kind help in advance. Best wishes, Dot13 xxx
I’ve written about HTSC and drug repurposing on my blog if anyone wants to have a read:http://lifeafterlola.blogspot.com/p/blog-page_30.html?m=1
There are lots of links to positive research projects.
I feel there is hope around many of the drug repurposing projects which will deliver benefits earlier rather than later. Of course there are always incredible new research projects geared towards developing new drugs in the future but the benefits of these may not be in our lifetime.
Thank you for this, Kate21. I am grateful. Let's hope it works to arrest the spread once it is in the bones. All these drugs are worth a try and not as severe as chemotherapy drugs either. xxx
You’re very welcome Paris, it’s great that more re purposed drugs are being researched, I only hope that the research won’t take so long as these drugs have been around for some time. It does make you wonder just how many more drugs are out there! Kate x
Thank you Kate for sharing that. I did hear briefly someone talking on bbc breakfast this morning about this, but only caught the back end of it. I tried to Google bbc news but nothing came up. It's great news! X
An interesting article on another drug being researched for re purposed use to help prevent metastasis to bones.
Hi Jefner, I agree! Thanks for your reply, I’ve been thinking I need to up my dose, just not sure which way to go about it!! Kate x
Hi Kate21. I take 1500mg twice p/d of Vit C. I made that dosage up myself quite randomly. Must check it out properly with my herbalist. I haven't heard of lipsomal (I've just looked it up) so there's something else for me to find out about - the list is never ending! x
Hi Kate21, thank you for the information and advice. I will get the book and join the FB group. I have already sent for a couple of books, one is Jane's book. My partner has type 2 diabetes and takes Metformin 3 times a day that's why I was so interested in what you said about Jane McClelland taking it. I will also buy the other two books you mention here as well. My partner doesn't want to research anything or be part of any groups. She just wants to ignore it but I am hoping with a bit of knowledge I can help her get as long as possible with us. Thanks, Kate21. Hugs xx
Hi Jefner, a list with some similarities to mine! Can I ask what dose of Vitamin C you take please? I’m a bit unsure about what dose to take as I read that low doses can help cancer cells to resist apoptosis, then it’s long been said that excessive amounts are just excreted! I’ve been taking liposomal 1000mg once or twice daily. From what I’ve read in Jane’s book I wonder if it would be better to take larger doses 2-3 times a week! Thanks, Kate x
Hi Paris. I've heard it's better to take turmeric with black pepper, but I don't do that. I'll ask my herbalist about that at my next appointment. I'm following a plan devised by my herbalist, who had cancer and medical treatment herself, so in a way she has a foot in both camps. I take:
- curcumin and boswellia
- recha (mushroom) powder
- strong multi-vit
- vit D3
- pre-biotics and pro-biotics
- Vit C, especially when feeling stressed (haha, too often!)
- a herbal tincture to support my nervous system and build my immune system
I also have a green smoothie or green juice daily, eat a mostly organic veggie/vegan, low carb diet and have eliminated sugar. I do drink alcohol and caffeine, but in very small quantities.
I think even more importantly for me, are the steps I'm taking to reduce stress in my life and to increase my sense of joy. Sometimes it feels like too much work, or I read a book and feel like I'm not doing enough, but there is life to be fitted in on top of all this extra stuff. But I want to give myself the best chance of being a 'radical remissioner' so I'm going for it as best I can, as are we all.
Hi Dot13, Metformin is one of the drugs Jane McClelland took, and one prescribed by the COC clinic. The Facebook group is Jane McClelland Off Label Drugs for Cancer https://m.facebook.com/groups/697546077022478?ref=bookmarks It’s a very helpful group but I would agree with what Jane herself says and advise reading the book first, because it’s really a discussion group for the book. Also, it’s useful to either make notes as you read, or use highlighter in the book, because at the moment it doesn’t have an index and there’s so much to take in. I haven’t yet read How Long Have I Got but can thoroughly recommend Radical Remissions and The Cancer Revolution. Kate x
Hello Kate, my partner has been taken off Palbociclib as it is too toxic for her. Oncologist said it was killing her and she couldn't prescribe any more. She said there was no other chemo she can have and to stay on the Letrazole only. I was interested in you mention Metformin. My partner is taking Metformin as she has type 2 Diabetes. Is Metformin helpful to secondary cancer? Can you also tell me the name of the Facebook group please?
I am researching the best supplements and foods for her to eat so it will help the Letrazole get her as many years as possible. We are told the mets are only in her spine and are slow growing because they are oestrogen dependant and it is breast cancer that has come back in her spine, mainly T4 vertebrae. I am going to buy the books mentioned in this thread. Thank you so much, Dot13
Paris, good luck with the neuts. I was in and out of hospital monthly due to mine crashing and I’m afraid I’ve found nothing to help. There wasn’t much the hospital could do either, but when I was in a bad way ( neuts of .05) they gave me gsf injections for a few days and I did pick up. I take Manuka honey daily for sore throat and ulcers and find it quite magical. It took a year to get me stable but I’m doing great. I’m on 75mcgs, 2 weeks on and 2 off. Unfortunately some supplements do interfere with both Palbociclib and Letrozole so I would check with your Onco. Keep in mind there is no research to provide evidence that they work but just lots of anecdotal evidence by vulnerable people like us who are willing to give anything a go. 🤫 I started off by buying loads of stuff but then have adjusted my diet so I include loads of natural herbal ingredients in it. The Royal Marsden cook book is a great source of information. Best wishes with your treatment. My mets haven’t grown in three years. X
Hi ladies, interesting piece on BBC news re supplements. My Onco is not averse to my taking supplements but likes to check what I take in case of contra indications with my cancer meds. C
Hi Paris, as I’ve said previously I take a lot of supplements and have for several years, another book that I find very useful if you haven’t heard about it is The Cancer Revolution from the Yes To Life charity. It has an excellent chapter explaining many supplements and is also a good all round handbook about integrative treatment. Just to add the Sloan Kettering hospital website is an excellent resource for checking drug/supplement/herbal interactions and incompatibilities, Kate x
Hi Jefner. Do you mind me asking what supplements you take? I currently take vitamin b complex, tumeric & black pepper, omega 3, half an aspirin per day, Adcal, plus palbo, and letrezole. I've ordered some melatonin which is on its way to help with sleep and I've been recommended Life Mel Honey too to help with my neuts which keep crashing below 1 so will give this a go too. The lady who recommended it to me said her bouts never fell below 1.9 whilst taking the honey. I have my next appointment on 18th December with my Oncologist so will be asking him about berberine and also metformin. I must literally rattle after I've taken all the supplements each morning but none of them can do me any harm! Thanks for the other book recommendations, I will get them ordered too! X
Hi Jefner, I couldn’t agree with you more! Radical Remissions is one of my favourite books and I regularly return to it, just to say I’d say How To Starve Cancer, although a story about Jane’s illness, it’s more medical (for want of a better expression!) but certainly if you like those books I’m sure you will this. I’ve just got How Long Have I Got, so it’ll be my next read! Kate x
Thanks for highlighting this book. I've read Radical Remission by Kelly Turner and am now reading How Long Have I Got by Fi Munro, which both have suggestions about lifestyle and dietary changes which can strengthen your own body's healing systems. They sound similar to the book you recommend, which I will read, as I find it encouraging, empowering even, to read such books; they give me a sense of control, knowing that I am doing all that is possible to give my body the best chance of keeping the cancer at bay (alongside conventional treatments).
I saw a herbalist (in Edinburgh, would highly recommend) when my I received my cancer diagnoses and started taking some cancer fighting supplements; the results I got after a few months of chemo were apparently 'unusual' in that all residual deposits had disappeared (yay!). I don't of course know if that was solely down to the chemo or the supplements, or a combination, but I'm certainly not coming off the supplements now!
I have the book and also went to hear Jane speak last year (I have posted about it in another thread). I’ve been adding and taking supplements since my diagnosis over 4 years ago now, and do believe they have really helped me, along with the other lifestyle changes I’ve made (which Jane also did) such as getting more sleep, regular exercise and of course diet, which I personally think is paramount, and as you will have read Jane agrees with this. The research she uncovered is incredible and it does make you wonder why there aren’t more trials into these drugs, especially when you consider the side effects compared to chemotherapy!
You probably know there is a Facebook group, which I have found very helpful and informative, especially when working out my Metro Map, and also a website.
I asked my Oncologist about Metformin at my last appointment, she didn’t want to prescribe it at that time because my scan was stable, but agreed to discuss again in the future. I had just added Berberine to my supplements prior to the appointment so I was happy with that. My Oncologist has never objected to me taking supplements but she knows I do research them first and if I have any doubts ask a pharmacist before taking. Please let me know how you get on and what you decide to do after reading the book.
Hi everyone. I was at an oncology appointment and a lady sat opposite me started to tell me about supplements that she swore were effective alongside conventional treatments. She told me to read "How to Starve Cancer...without starving yourself" which was written by Jane Mclelland who was diagnosed with stage 4 long cancer and given 12 weeks to live. 17 years later she was cancer free. I've started reading the book and I cant put it down! It's so informative. I would recommend everyone to read this. It will make you think about your role in your treatment and how supplements alongside conventional treatments can starve the cancer. I plan on discussing what I've learnt to my oncologist next month. Apparently it's important they are on your side, as a lot of doctors dismiss alternative therapies despite research proving otherwise.