For those interested in the cannabis oil I cam accross this article (if I can get the link to paste here)
There is hope yet that the NHS might one day provide access
Hi Carolyn, still not heard back from bcn! Which doesn't surprise me to be honest as she has an habit of that. She usually sees her in clinic on a Thursday so will see if I hear from her tomorrow, as it happens head has been okay since Friday so hoping it's just something and nothing.
Well it is glorious here in the usually rainy manchester 😎 Hope everyone is enjoying the sunshine and keeping well.
Hugs Janette xxxx
Carolyn, I lost my hair with primary and hated it....wore my wig all the time. Then I lost it with the Mets in abraxane and said who cares. I very seldom wore my wig. I seriously wore hankies tied on my head. It was summer and couldn't stand the wig! I will probably lose it forever next time lose it. I think I've used all the chemos that don't usually cause hair loss. Yes, I honestly feel worse on this letrozole. I hurt that bad! Plus I can't believe how it's wrecked my muscles for doing steps. There is another lady on bcmets.org that is having the same problem. I think she is finished with it, but is in physical therapy trying to learn to do steps. I also googled about the leg problems and letrozole . I couldn't believe how many people were complaining of leg issues. I'm nit willing to give up this life line though. FF
Ladies who are worried about chemo side effects, I have had many mire side effects from this letrozole than I did with chemo. I had some SE but never the this much pain. I had a lot of pain from abraxane bug the pain was different. Don't be afraid to try chemo, every one reacts differently.FF
Hello Marie123, glad you are feeling a little better this morning! Hope you continue to improve.
Corey - good luck with your first chemo. I know how nerve wracking it is, but once you get the first one under your belt it will get easier to deal with. Just be aware of any possible se's, but I hope you don't suffer from them.
Avrelia - good luck with your second chemo, and I hope you get to go on holiday!
Carolyn, I hope your bone juice aches subside soon.
Hugs to all. Barton.x
Good morning ladies,
Just want to say a huge thank you to everyone. Feeling a bit better today. I just need to ' run to the hills ' and lick my wounds and be quiet sometimes . The thing is I feel well and I am not inpain, which is brilliant, but very shocking when I am told the meds are not working.
What a great bunch you all are.
Hugs to all
Hey Corey, do not feel that way, yes, true that chemo is said to cause many side effects but that is not necessarily the case with you, I have had only one cycle up to now, but the only serious effect I had is hair loss, and that was a 100% sure since I am not using the cold cap. I have been diagnosed in the end of june, and have had just chemo up to now, since I had 5 teeth taken out and they told me that they will postpone the bone strengheteners till beginning of September. I have been having aches in my back occasionally since November and they have neither got better nor worse, so we will see how it will go on, different people different treatment plans I guess.. Take care everyone
Hi everyone, I am about to go to hospital to give some blood before my second chemo. Fingers crossed results are fine since I am planning to go on holiday for 2 weeks, and if something is delayed I will not be able to...But I do think everything is going to be ok;-) Black sea, here we come!!! My hair has almost fallen, it is everywere in the house, I was thinking of cutting it with the razor, but my partner said, NO. He had always liked me with my long hair, anyway, my wig is not ready yet, and now I am wearing something like a scarf, which makes my head really itchy, probably because i Still have some hair though. Do you think if I buy something which is pure cotton it will help. If someone can recommend me a shop or a website that would be great. Bought another wig on ebay, but still trying to identify how to adjust it on my head
hi everyone, i now have a treatment plan and i will be starting chemo on next monday so feeling i bit uptight as to all the side effects etc. after bone met was diagnosed oncoligist put me on tamoxifen( as i was going for targeted rads to the bone met) .which gave me slight back ache but nothing major that was just 2 weeks ago now he says delay rads and start on chemo first .(change of plan again) i had to stop tamoxifen so the cancer cells wake up ready for chemo to get them . stopped on friday and i have aches in back again. does any one know if the ache might be down to stopping tamoxifen.
Afternoon ladies, what a lovely day!
Daisyjane, great news!! You are now a member of the "stable Mable" club.
Hi Carolyn, so your also walking like a constipated duck are you? I look like a 90 yr old when I've been sitting /lay for any length of time. I put it down to the letrozole though not the denosumab because it only started when I was switched to them last October, I've been on denosumab since I started off with mets in 2014 and have never had any trouble with them.
Hugs Janette xxxx
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.