Hello Carolyn, sorry to read you are getting your regular bone juice aches! I was hoping you would be getting used to it by now, but obviously your body has other ideas! I do hope they don't go on and on like last time! Take it as easy as you can, but still keep moving around. We don't want you to set like concrete!
Hugs, and thinking of you. Barton.x
Hi Debbie, so pleased that you had good results from your CT scan! Hope you are out celebrating at this very moment! Take care xx
Good morning ladies....just wanted to let you know that I went for my first three monthly CT scan and review last week and got the positive news that my bone mets are stable. This was the news I was so hoping for and I just pray that it continues. My calcium levels (which apparently were normal to start with!) had dropped slightly, obviously due to the Ibandronic acid (bisphosphonates) so I have been prescribed Ad Cal D3 which are OK as chewable and fruity flavour. Just have to remember to take it at least four hours after my Ibandronic acid and two hours after eating spinach, etc. Anybody else on them? I had a feeling that my levels had dropped as I had a tingling tongue and quite a few aches but you never know what to attribute them to do we? Anyway I thank god for giving me some positive news at the hospital and I am sending out positive vibes and best wishes to all of you today. Debbie xx
I too questioned if 'just hormonal' treatment was enough/right for bone mets but that was six years ago and I'm still stable on Letrozole, so yes it's pretty satandard treatment and can work well for a good time Have they moved you on to a different hormone?
I'm on a different bone juice to you, but the risk of ONJ (osteonocrosis of the jaw) is the same. Whilst it is a possibility to get jaw problems the benefits of treatment (as far as I'm concerned) outway the risks, be careful with your oral health, see your dentist regularly and try to avoid having invasive treatment like tooth extractions.
Hope you feel a little less worried. Please ask anything you want, there are no stupid questions, we will do our best to answer xx
I was dx with a bone met at original dx in Oct 09. Recently I have been shamelessly picking the brains of other ladies with bone mets wherever I find them, and have found the process very helpful and often encouraging. It has enabled me to be less panicked about my prognosis, and given me a much better understanding of my condition. I now have a whole new set of questions to ask at my next consult - bet my onc can't wait!
I know I would find it very useful to have a designated thread where experiences can be shared, and advice sought - so if you agree and also have bone mets perhaps you could check in here and we could get the process started. I know it's a bit quiet at the moment, with many away on holiday - but here goes .....
Hi Carolyn, they keep coming and going! Don't worry I will be chasing things up but I know my onc doesn't work on Mondays so don't expect to hear anything til Tuesday. We go to Cyprus on the 10th September so I'm hoping to have had it sorted by then!
Hey why are you resisting chocolate my fellow choco-ohlic?? I have had a magnum ice cream today I will shortly be having my weekly fix of Diary Milk!! Come Mrs don't let the side down!😆
Hugs Janette xxxx
So sorry you are going through this worrying time but if headaches are bad they need to be checked out I agree with what others have said and I do hope you get the right kind of help. We are all here for you wishing you get some speedy results and peace of mind.
Much love and ((((hugs)))) xxx
Hello Janette, sorry to read you are getting such headaches. I can only echo what everyonecelse has said - see your Onc if you can, at least to settle your mind. As the others have said, there can be lots of other reasons for headaches - stress not the least of them!
Hugs, and thinking of you. Barton.x
Carolyn yes your right, this forum is brilliant, the support, advice and understanding we all give to each other when needed is priceless! It's wonderful to be able to off load any worries here without having to worry family and friends. I haven't told hubby that I have contacted my bcn about these headaches, he is so supportive and I don't know what I would have done without him these last few years since my dx so hate to worry him... (hopefully unnecessarily)
Sending all my cyber buddies huge hugs Janette xxxxxxx
I had a CT on my head to begin with but since then it has been MRI scans.Went through a period of feeling dizzy, nauseous and even confused but the MRI scans have shown the tumour in my head as stable so I put the symptoms down to side effects or lack of sleep. Once they started they got worse probably because i was anxious
Thanks ladies, bcn has rang and I have explained things, she is going to email my onc and get back to me once she has replied.
Hugs Janette xxxx
I agree with the others. The headaches could be anything, maybe you weren't hydrated enough, maybe you're gettig some form of migraine, possibly you are sleeping in a position that puts a strain on the neck and causes headaches .......The important thing is that if it is worrying you you need to speak to your team and get your mind put at rest. Hope the BCN gets back to you and you can start to feel a little less worried. A big hug coming your way xx
Well done Jannette, just thought, sometimes a neck massage from a partner or friend can help tackle a headache... lots of love...we are all here for you. Hopefully the bcn will get back to you....but leave it for a little then try again.
Jeanette, I agree, go get it checked out. Worrying can make your headache worse and upset your stomach. You will just feel worse without answers. FF
Thank you ladies for your advice, Carolyn I'm love, just been keeping busy and trying to ignore this headache in the hope it will bog off! I've rang my bcn but she was out of the office so waiting on a call back.
Hi Jeannete, yes, I agree with Carolyns suggestion. I had visual changes and the eye clnic asked m onc to do an mri...which he did arrange..all was ok in the brain, so that was very reassuring. Am sure they would do one if you are really worried. Re ct, well they might, but honestly is prefer an mri!
if the headaches do go away, could it be some form of migraine? That can cause nausea and sickness...as can anxiety too.
keep us posted..hope it gets better
Morning ladies, hope your all keeping well, I've been a little quiet this last week or so. I've had a niggling little worry, hoping my cyber buddies can help me out? For around 3 wk now I have been struggling with headaches, they seem to ease off for a day or so then come back with a vengeance! This week I have also been feeling sickly, so obviously my mind is playing the "omg it's brain mets card"!!! Only saw onc about 3 wks ago and markers dropped significantly and stable CT but they don't scan the brain on CT do they!
Any info / advice please?
Hugs Janette xxxx
Sharon, yes I know the medics wont discuss it. However i believe some studies have used it to see if it relieves side effects of chemo...so maybe things are changing slowly
Dear stresshead, I have heard of Manuka honey being used for wounds but I think its been sterilised...yes Manuka Honey is good for lots of stuff, but honey has some strong bacteria of its own that could cause problems for babies etc, so vulnerable ladies like us need to be careful. I think, if I was ? NUtrapaenic I wouldnt take it. I take it in herbal teas.or on toast for a comfort bite( a bit like Carolyns chocolate!) they use it in a special toothpaste too.
Hi julzd, since the started on letrozole in October last year I really do suffer from aches and pains. Like you if iv been lay or sitting for ant period of time I walk like a constipated duck! It takes me a few minutes to straighten up, even the soles of my feet hurt to walk on.
Hugs Janette xxxx
Sharon, i too am interested in cannabis oil as i dont think i have many options left. No one in the medical circle seems to want to discuss it and i have no idea how to source it. I am going to ask my homeopathist again when i see her. Please let s know how you get on with it.
I have also heard mistletoe mentioned...anyone any knowledge?
I too have heard of different oils but it seems you have to be extra careful what you use...i have skin mets and am sure i read somwhere that something could be applied topically. If anyone has any info i'd be really grateful
I know mankuka honey is supposed to be good fro skin conditions, ulcers etc bt dont know of anyone who has used it...again if anyone has any info i'd love to hear it.
Best wishes. xx
some of my bone mests did shrink a little some time ago, I am never sure if its the Zometa or the chemo tho.
i am totally on your page about wishing tumours would shrink! I often think about trying extra little things like oils...I read that just inhaling certain oils can be beneficial...trouble is, theres little research to back these things up...hopefully soon there will be
our hospital has a drug information line sttached to the pharmacy, it might be helpful for you to see if yours has one..they always warn us about taking extra drugs which could conflict with treatment or reduce its effectiveness.....i also find that the Pharmacist in Boots is pretty good just to check over the counter stuff with.
i find myself contantly checking if I want to try something new.
looking forward to hearing how things go for you, its so nice to be able to share news and ideas with all the lovely ladies on here,