Breast Cancer Care Forum

Hi again Liz, I get honey from a local bee keeper and he told me to try and put some on the affected area, it isn’t easy and I usually ended up swilling it around my mouth! I’m sure you know this but just keep your mouth as clean as possible, I only cleaned my teeth twice, occasionally 3 times, a day but I would regularly use saltwater to rinse my mouth. My Max Fax team said main reason they thought mine healed was that I didn’t get any further infections after the one which turned out not to be a blocked saliva gland. After all the courses of antibiotics I’d had I really think my gut was wrecked and the bacteria needed replenishing. I’d definitely recommend Kefir, it’s so easy to do yourself but many supermarkets sell it now, and you can get it at most Polish shops. I make my own because I avoid cow dairy as much as I can, and make it with goat milk.  Let us know how you’ getting on, Kate x       ... View more

Hi Liz, Sorry to read you’re going through this!  I don’t know if you’ve read any other threads about ONJ? I had dental work done, all healed and was well for 8-9 months and then I spontaneously got an infection, several courses of antibiotics followed but things would only temporarily improve before another infection. Then my mouth swelled up and I was told it was a blocked salivary gland, more antibiotics followed and I was then referred to Max Fax. I had x rays, and an MRI, I knew they were suspecting the cancer had spread and I was told my case was unusual because I’d only had 5 or 6 doses of Denusomab beforehand (my dentist had missed some decay under a crown at my check up prior to starting treatment) and it had initially healed so well, but my MRI was clear and it was just infection! While taking the antibiotics for the suspected blocked salivary gland I took pre and probiotics and started making my own Kefir and Sauerkraut and never got any further infection which was a relief because at that point I’d had about 6 or 7 courses in as many months! I believe replenishing my gut while having the stronger courses of antibiotics was definitely worthwhile. I was a nurse so have seen the body do some amazing things but what followed surprised me...where the initial infection had been caused a splinter of bone to separate away from my jaw bone, and it was that which appeared to be my jaw breaking down while underneath it my gum healed, sealing off any exposed bone. That was almost a year ago and I’ve had no further problems..touch wood 🤞🏻 !! So, while not exactly like your situation, there are some similarities. I hope all goes well for you and the results are positive. Please let us know how you are getting on, Kate xx ... View more

Thanks Mummybob! That’s how I understood it re Palbociclib etc., was just a bit confused when I read your earlier post. Had a similar discussion with my Onc, have been told when I need to change treatment I can go onto what you’re now taking. Kate x ... View more

Hi Mummybob, can I ask you please, you’ve been diagnosed for 6 years, is this 6 years with metastasis, or since primary diagnosis? Just interested as you’re on Palbociclib, so thinking you’ve been diagnosed with secondaries more recently?? Thank you, Kate x ... View more

Daylightdancer, good luck on Wednesday! Let us know how you get on, Kate x ... View more

Exactly how I feel! Max Fax could have discharged me with the option to go back if any problems arose and I’m so grateful they didn’t. I’m seen every 3 months, which falls between my 3 monthly Denusomab, so hopefully between them and my wonderful new dentist any issues will be picked up before they become a problem. Sounds like you’re in a similar position, but as you say 🤞🏻 it won’t be necessary! Kate x ... View more

Hi Daylightdancer, sorry to hear you couldn’t continue on Denusomab. You’re right you should, and I did go to the dentist before starting it but my dentist missed a problem under a crown I had. I’d been going to him for over 20 years, I’ve now changed my dentist! Kate x ... View more

Hi Janey, sorry to hear you’ve still got problems, when my jaw was healing, but it didn’t look that way to me, my Max Fax team would always be very happy that I wasn’t getting any infection in the area, more so than the bone being exposed. I did when it first started to break down but none when the work was done, and none after the first couple of months. I can understand your worry but from what I was told keeping the area of exposed bone clean and free of infection, which you’re obviously doing, is the most important thing. Are you under a Max Fax team? My dentist is very good but he agrees that any future dental work, other than more simple fillings, should be done by them. Kate x ... View more

You’ve done well Nicky!  While my Oncologist says I’ve had ONJ my Max Fax team don’t! They say it was heading that way but a slice of bone, which they believe had got infected when I had the dental work done, kind of splintered off from my jaw leaving the rest healthy. That piece of bone was being pushed out and the bone underneath healed over. After nursing for 40 years it never ceases to amaze me what the body can do! Kate x ... View more

That’s good to hear Nicky. I’ve been told by my Max Fax team that any dental work I need in the future will be done by them at the hospital, and I’m so glad about that, think it’s definitely the way to go! I’ve been told my case was rare but my jaw broke down over 8 months later. The work I had done which caused my problems was done at a dental hospital by the Consultant Dentist, I had only been on Denusomab for 6 months, and had only had 5 doses. Just goes to show, you never know in this game! Kate x ... View more

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 ... View more

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 ... View more

Hi Dot, 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. Kate x     ... View more

Hi Dot, 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. Kate x ... View more

Hi Gina, 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. Kate x ... View more

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 ... View more

Hi Dot, 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. Kate x   ... View more

Hi Dot,    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   ... View more

Hi Dot, 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. Kate x ... View more

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 ... View more