Breast Cancer Care Forum

Thank you, Kate, that's good to know. 🤗xx ... View more

Thank you Paris. I have bought some but not arrived yet. I know Philomena isn't taking chemotherapy now but I want her immune system brought back to what it should be and her blood tests to show better results. If we can do that with the Life Mel Honey then it will be worth the price. I am not attending the Royal now. I had my spine biopsy there because the Orthopaedic surgeon there is the only one who can do those biopsies for the region. But it would be nice to meet up one day and have a chat. Since January when they found Philomena's spine secondaries I have often wondered why there are no groups set up around the Merseyside area for people to meet and compare notes and chat about how they feel to people who understand and maybe have a cup of tea or coffee or whatever. I think it would be good because talking to someone with the same or similar illness to you is comforting. It's hard keeping your feelings hidden for the sake of family and friends but at such a group it would be easy to let them out to someone who knows how you feel. I will let you know how we get on at the Oncology appointment on the 11th. I have a big list of questions to ask. Stay well xx ... View more

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 ... View more

Thank you Ri and Paris for your kind information. Paris, Philomena wasn't given the option of 2 weeks off instead of one but I doubt it would have helped. Palbociclib just didn't suit Phil. As her kidney's went in to failure and her heart has already been treated for mild heart failure, I think her Oncologist is afraid Phil will react further and get total organ failure. We have mixed feelings about it. In one way we know the Palbociclib was working and her cancer was responding well to the drug and we were happy about that. On the other hand we are happy she is off the drug that has ruled our life since she started on it in May and she has been in and out of hospital practically every month. Her taste is still affected too which adds to her appetite loss. We have reduced our sugar intake drastically to and we are eating organic vegetables when we can get them. We are getting a juicer to make smoothies with too. Philomena already takes Metformin as she is a type 2 diabetic. She tolerates Doxycycline too. I will ask about the Berberine too at next appointment. I have a list of items I want to ask when we go on the 11th. Philomena is taking prescription tablets for other illnesses so we will ask the pharmacist if any will react with the Turmeric and black pepper we want to start taking. The doctors don't have a clue but the pharmacist is the one to ask about drug and suppliment interactions. Ri, ask your pharmacist about supplement interactions with the drugs you are taking. They know better than anybody. Paris, it's on my list to ask why no other treatments when Philomena has recovered. I think it's fear of complete organ failure. We are going to go down the route of the COC in London. It's expensive but we will find the money by doing without other things. Thank you both for taking the time to write to me, you have both be very helpful. Is that "Life Mel Honey", Paris? God bless you both. Keep as well as possible. Hugs xxxxx   ... View more

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 ... View more

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 ... View more

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 ... View more

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 ... View more

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 ... View more

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 ... View more

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 ... View more

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 ... View more

Hi Kate, I have already signed up to receive his newsletter and I have bought the book, Oestrogen The Killer in our Midst which was available via his website. I am going to see if I can get the magazine too. We need as much information as possible. When my partner had her primary breast cancer in 2008, I stopped her drinking tap water because there is a lot of oestrogen in it because of the Pill use and HRT. The water companies can purify water but it can't remove the oestrogen so we both drink bottle water from a spring not just filtered tap water. I watch what she eats that has Soy in it and lager because oestrogen is in hops.. I am sure this book will help further. Thank you Kate for putting me on to this website and Chris Woollams. Hugs xxx ... View more

Thank you, Kate. I will check that out. It's always important to be aware of new information so I will subscribe to his newsletter and see if I can get the magazine. Thank you for thinking about us and sending the information to us. Hugs xx ... View more

Hi Paris, thank you for your really kind message. I am sorry you are going through it too exactly 10 years later. It is criminal that patients were not told it can come back in the bones after 10 years. The fact that now patients are left on hormone tablets for 10 years shows I was right to ask for my partner to have more years on it rather than end it at 5 years. Like you, I am really angry at what has happened. She was supposed to have Denosumab injections but somehow that was quietly forgotten. That is another item to add to my list of questions when we see the Oncologist next month. Thank you for reminding me, Paris. It's such a stressful time and it's been very stressful for the last 10 months. It's hard to think straight. I am consumed with anger and fear and my partner is very frightened and in complete despair. Are you having Palbociclib drug as well as Letrazole and Denosumab? How are you on the Palbo? It has been a dreadful drug for my partner. It almost killed her. Are you taking any supplements like Turmeric capsules etc.? Wishing you all the best and keep as well as possible. xxx ... View more

Hi Nicky, I am so relieved to read your message. I didn't know Letrazole was used solely without any added chemotherapy drug until the last couple of years. My partner had Anastrozole for 5 years after her primary breast cancer in 2008. We were under the impression that after 10 years it wasn't likely to come back but that is so not true. When she went to Liverpool Royal for a biopsy on her spine she was told that most secondary breast cancers do return in the bone after 10 years, it's just not told to us at the time of the primary. I can understand why but it's a form of lying by omission. When she was finishing her 5 years on Anastrozole I had read about it being a good idea to leave a woman on it for 7 years not 5. I asked the Oncologist at the time could she have another 2 years on it and he said there was no evidence it would help. We had a visit from the McMillan nurse today and I wish she knew what you have told us. We are beginning to accept the decision to leave her without more chemotherapy as being the best one for her. She has been through so much since starting it in May. So many hospital admissions and only one arm to take blood from and use for IVs. She has been very poorly several times and we were told any more chemotherapy is likely to kill her. I now believe I will have her with me for longer without the chemotherapy drugs and just taking the Letrazole. I am trying to build up her body, her mind and her hope. We have been together 33 years and I don't want to lose her. Although she is 70, she is a very young 70. Thank you Nicky for giving us our hope back. Hope is such a powerful emotion that to have it taken away leaves you adrift with no life jacket in a raging sea. We are so grateful you were kind to write to us. You have helped more than you know. Hugs xxxxx ... View more

Hi Annie, thank you for your welcome reply. You have offered some good advice. I asked the Oncologist if there was another drug we could try and she said no. We see her again on 11 December so I will go armed with Ribociclib and Aminociclib and Radlotherapy. Surely something else can be tried rather than cut her adrift with just Letrazole regardless of how good the drug is (talked up by Oncologist) but I am not convinced. I can't remember the dose she was on but the Oncologist didn't offer her 2 weeks on and 2 weeks off. She just said the drug is toxic to her and it had to be stopped. The Oncologist admitted the Palbociclib had done a lot of damage to her organs and hence she is a lot weaker than she was before the Palbo. She told us she wasn't prepared to give her anything else in case she died from the treatment long before she would do from the cancer. I can understand what she is saying and I have thought about that a lot even before she said it to us. Do you push for treatment that could hasten your demise long before the cancer would get you or do you take your chance just with the Letrazole and probably live longer with a better quality of life. On the Palbociclib she had no quality of life. She was always very ill and in and out of hospital. She has Lymphoedema in her left arm so there is only her right arm to take bloods from and put up IVs in. Her arm is a complete mess now from months of IVs and daily, sometimes more, blood tests. She is still very weak and emotionally fragile and I need to build her up in both body and mind. The McMillan nurse is calling tomorrow to see us. Thank you for your kind reply, Annie, I appreciate it very much. I wish you continued good health for many years. xx ... View more

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 ... View more