Breast Cancer Now Forum

I’ve bought many books since my diagnosis, one or two I’ve only read a few chapters before deciding it wasn’t for me, others I read and take bits from, and then there’s the few that I go back to time and time again and Radical Remission is one of those! Personally I think it’s a wonderful book and often re read a chapter, it’s uplifting and offers hope even if you only make slight changes in your life. Kate x ... View more

Think we’re all different and what works for one, doesn’t always for another! Definitely blue light and also dimming lights right down before bed. Did the getting up and found sleeping on the sofa worked better than going back to bed! Yes to hot water or herbal tea but green tea would have the opposite effect on me, have to drink that in the mornings! Think it’s about trying things and finding what works for you...no blue light, dim lighting, a bath, magnesium spray to my feet and Inulin work for me, although not necessarily all every night! I also take Ashwagandha early evening which I believe helps but that isn’t why I started taking it. I used Chamomilla when I was waking up at 3-4am and I really think it helped to break the cycle, but at the moment thankfully sleeping well. Kx ... View more

  I tried some of these techniques and I’m sure they helped, but my problem wasn’t getting off to sleep it was waking up, and found I’d still be counting an hour or two later! I really don’t stress much about things other than at results time, I was just wide awake. I also found adding Inulin to a drink really helped, which is a prebiotic food not a supplement if anyone’s concerned, this was recommended by Michael Moseley in the programme he did on insomnia. One thing I’d forgotten about that I believe made a difference for me was I now don’t use my iPad for a couple of hours before going to sleep,..definitely worth giving that a try! Kate x ... View more

Just to add Ri, I found when a I took them if I did wake up I managed to get off to sleep again. Hope they help, Kx ... View more

Hi Ri,    I went through spells of not sleeping well and now take a couple of supplements to help but if you’re concerned about taking those Weleda do a natural product called Chamomilla which is worth a try. It can be given to newborns so nothing nasty in it! They do granules for newborns, then drops for older babies/toddlers and tablets for adults. Some Holland & Barrett’s sell them, or can get on line. If you decide to try, don’t swallow whole, you need to chew them! Kate x ... View more

Thank you for your very encouraging post Helen! Reading what you’ve achieved in those seven years is amazing, long may your treatment continue working for you. I hope you have the Christmas you want, and a happy new year which, as you said, is very kind to you. All the best, Kate x ... View more

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