Well now Lovely Ladies - I soo apologise for "crashing" this thread, BUT, I'm on a "mission".
Firstly, I hope you're all doing well, haven't yet in depth read into your thread, but have already recognised extremely familiar faces - Janey2, Ladyballbowler!! Hi gorgeous Fluffies - so this is where you come to avoid MOI?? Hummm, gonna tell Charys on yers!!
Sorry, but it's Magic I'm after - that Magical_Moon woman?? You there flower?? Get the feeling you've gone off the Forum radar and did I read something about you "cutting the apron strings"?? Understandable darlin girl. But can you please get in touch with me by pm email, if you would do me honour of. I'd really love to be in contact with you and know how you're doing. I've recently been reading back from the origins of the "Fluffy" thread, having a right good giggle and quite frankly . . . . . I've "missed" you girl. Please get in touch. Taaaa, in advance.
Right, I'll leave you's all to carry on after my friendly interruption. May stop for a bit, and have a read.
Love to you ALL
Hello again Emma 111
I start Rads at Exeter on 16th January. First few appointments are around 10 am but the rest are around 5pm. We still might meet up. I have to have transport as we are in Axminster and husband would find it tooo much to drive every day for 3 weeks.
Hope to meet up with you.
Happy New Year Emma, and everyone. So pleased to know you started taking the dreaded pills and all is ok. I felt a bit silly after I had my panic about starting the pills, but it is comforting somehow to know I wasn't the only one! (my imagination must be a bit like yours).
It might be helpful to know that I had one day, during the first month, when I felt very sick for about 15 minutes, which I attributed to Anastrozole. Told my BCN about it and we think it was because I had forgotten to take it the night before so took it in the morning. She advised taking it at night. Now if I forget at night I don't take it until the next evening....I'm sure missing the odd one is not harmful.
As you may have read in an earlier post, I have a friend who was on Anastrozole for five years, as part of a drug trial, and she had NO side effects at all so anything is possible. Please report again when you're further along the journey as I'd love to know how you get on. Hope all goes well. X
I'm sending my good wishes to you all too. I had 15 sessions of radiotherapy just over a year ago and had no real problems at all, no skin problems and only a couple of days of fatigue. Hope it goes as well for the ladies on here who are starting treatment soon. Let's hope 2017 is a better year for all of us. Xx
I started on Anastrozole about 6 weeks ago. Apart from feeling hot at times I have not had any other problems yet. Fingers crossed. Everyone is different. Chin up!
I start Rads in January, not looking forward to that as I had a lot of problems after my op. Be optimistic!!
Hello again Emma. Sorry to know you are also suffering with anxiety. My husband suffers with anxiety so I understand what you're going through. Fortunately I don't usually suffer with it myself but have to admit to being very anxious about starting the Anastrozole, to the point that I phoned a friend to talk it over and I actually took the first pill while I was on the phone to her. I don't know what I thought was going to happen but it felt almost like a panic attack and, of course, nothing drastic happened but I think when we've been through what we've all been through, sometimes we are not rational and we do get uptight about some things, but I think we have to try not to be too hard on ourselves. We're doing the best we can, and we are allowed to be vulnerable and look for reassurance. Keep your chin up and be kind to yourself. Brenda. X
I am 71 and have been on Anastrozole since March 2014. Yes I get a few arthritic type aches, but nothing really to worry about. It may even be nothing to do with the drug but simply old age wear and tear.
I understand from reading posts here that some people have a reaction to different Brands of the same drug and therefore ask their pharmacist to only supply the Brand they have least side effects from. Talk to your pharmacist about your symptoms and see what s/he says. Your doctor may be prepared to prescribe the one brand if the pharmacist isn't prepared to help. If all else fails, talk to you BC nurse - they have heard it all before and may well be able to tell you what other people have found helpful.
Hi Emma. Please don't be petrified.....only the people who have the unwelcome side effects post on this site. I am sure plenty of people don't feel as we do. In fact, I have a friend who took Anastrozole for five years with no side effects at all. I am 68 so the aches and pains are probably worse because of my age. If I was younger I would still be able to work, despite the aches etc. It is fairly unpleasant but nothing to be petrified about. Personally I wouldn't resort to coffee enemas, but have resorted to taking Amitriptyline (prescription only) and it has taken the edge off the aches and has the bonus of making me sleep well, which I have never done. This site is great for help and advice, and great support....it's a bit like an exclusive club!! Please keep in touch and let us know how you get on. Will be thinking of you. Brenda.
Had double mastectomy in June for stage 1 cancer. Did fine on Anastrozole for first three months before starting to notice joint problems. Within a few weeks I felt like I had aged 10 years. Extreme joint pain all over, but worse in hips, pelvis and hands. After contacting oncologist stopped drug 8 weeks ago, much better, but finger joints remain swollen. Have now been prescribed Exemestane, but afraid to start taking this as I just had Expander and fat transfer surgery 10 days ago. Anyone here switched drugs and had good results or suggestions.
Hello and welcome. Must admit I haven't tried any "alternative" remedies but haven't ruled it out either. I have been taking Amitriptyline now for a couple of months and I think it has taken the edge off the pains, and I do feel better first thing in the morning, which is a huge relief. I still have trigger fingers on both hands and the aches and pains certainly haven't gone, but feel less troublesome. I now feel I can live with these side effects but, of course, would be delighted if anyone has any ideas for getting rid of the side effects altogether! I don't feel brave enough to come off Anastrozole, but don't blame anyone for doing so as the aches and pains are quite annoying and debilitating, to put it mildly. I hope you will get support and help from this forum. I have found it very helpful. X
I have had the joint pain from all 4 types of breast cancer drugs to the point I was practically crippled. My consultant finally admitted that this happened to 10% of woman in the trials who dropped out. After lengthy discussions with my oncologist I have decided that the 1.4% extra life expectancy it bought me statistically was not worth the misery I was experiencing, and stopped all drugs. I feel so much better and I am sure the ability to exercise again is a huge health positive. Each decision about these drugs depends on the personal circumstances but the news this morning that someone wants to prescribe anastrozole as a preventative to healthy women makes me shudder.
Hi Treeze, welcome. Sorry you are feeling so rough. I think you will find medical people very understanding about this and am sure you will be able to change pills, but I was told that side effects will be at their worst in first 2-3 weeks and then calm down a bit.
Just a thought from my own experience; I decided from the start that I would take the pills at night but I forgot to take it one night so took it in the morning and felt VERY sick a few hours later. I rang my Breast Care Nurse and she advised taking pill with/after food and always at night.....which the leaflet in the tabs doesn't say, but since then I have only very occasionally felt nauseous, and if I forget pill at night I don't take one until following night. Not chancing feeling so sick again! I realise you may already take yours at night but thought it worth mentioning. It may be that chemo makes nausea more likely, but I was lucky enough not to have chemo so not sure about that. Please report back to let us know how you get on. You will get a lot of good advice and support on this forum....I know I have!
All good wishes.
Hello cajunsurvivor, good to hear about your experiences, and pleased to know that now you're off Anastrozole you are pain free - must be great for you after all that pain. Have you changed to another pill or come off all medication? It's great that you are back to being sporty as you were before the A. How encouraging for you. You have obviously made the right decision for you. It's always good to hear of other people's experiences, so thanks for joining in the discussion.
With all good wishes
Hello MM. So pleased to know that your check up went well. As you say, it's a good feeling isn't it. I've only been on Anastrozole for 14 months so have a long way to go but, like you, I feel I'd rather stick to the devil I know, and I think the joint pains are not exclusive to Anastrozole. I do think the Amitriptyline is helping a bit and I don't feel quite so seized up in the morning, but doubt whether the trigger fingers will improve, and they are quite painful, but like you I feel that the Anastrozole is a security blanket and gives me a bit of peace of mind. I find exercise helps with the aches, and still go to gym twice a week, and this week intend to join a walking netball group if I can pluck up courage to do so!
Thanks again for your suggestions and advice. Will keep visiting this forum as I have found it really encouraging, and I think we're a friendly lot!
All good wishes
How kind of you to ask.
Everything went well. My mammogram was clear showing NED (No Evidence of Disease) which was a huge relief.
I am now three years in remission which is a very good feeling. I would like to think that my good news will give you and all the ladies who have posted on this thread hope and inspiration.
It can be extremely challenging to continue with hormone therapy when Anastrozole causes such awful joint pain. There have been many times when I have felt I couldn't carry on taking it but, despite this, I have managed to persevere. Mainly because this little white pill continues to give me the comfort blanket I need for peace of mind.
Sorry Brenda, I forgot to ask about Hemp Oil. I did talk to my BCN about my chronic joint pain. The only thing she could advise was to try either Letrozole or Exemestane. I had already told her last year that I did not want to take Exemestane because it is a steroid AI and its aromatase inhibition mechanism is 'irreversible'. I'm too worn out to try Letrozole and feel I'd rather stick with the devil I know for the remaining two years.
Peace and Positivity to everyone.
Welcome to the thread.
I do not think the oncologists have a definite timeframe before switching you to a different hormone therapy. As Brenda has said, it really is up to you.
You must take priority, therefore, if you are having a difficult time with Anastrozole, you should tell your oncologist you want to try something else. You have been taking it for 5 weeks which is a reasonable amount of time to judge how it is affecting you.
Oncologists would rather you tried a different hormone therapy, which hopefully you can tolerate, than reach breaking point where the side effects are too awful and you just want to ditch hormone therapy completely.
Good luck to finding the right medication for you.
Thanks M. How kind of you to say you will ask about Hemp oil when you see your BCN. Please don't worry if you forget.....you will have enough to think about. I spoke with someone in Holland & Barrett this morning and they said they have to keep the Hemp oil behind the counter as it gets pinched off the shelf because people think it contains cannabis, but apparently the substance that makes you high is extracted during manufacture!!
I will be thinking of you on Thursday and look forward to good news. Thanks again for your support..
Sorry if this has already been asked but how long do the oncologists like you to keep on the anastrozle before they will change it? The chemo left me with terrible muscle pain especially upper body which they say is due to the taxotere/taxol and 5 weeks of anastrozole hasn't improved it! Have tried naproxen with cocodamol but the naproxen upset my stomach now on tramadol/paracetamol. 49 feeling 99 .
Thanks for posting to tell us how you have been getting on with Amitriptyline. Sounds like you have noticed some improvement to help with your joint pain but perhaps not as significant as it was for me. Maybe given more time you may get more reduction in the level of pain.
I've not heard of Hemp Oil in relation to chronic pain only cannabis.😱 No chance that the NHS will be supplying spliffs to pain sufferers.
I go to the Breast Clinic for the results of my third year anniversary mammogram on Thursday, so will ask my BCN about Hemp Oil.
Peace and Positivity,
Hello again MM and all. I THINK my aches and pains feel a little better, having been on Amitriptyline for about three weeks, and I am enjoying sleeping well. Has anyone tried Hemp oil in relation to chronic pain? It has been recommended to me but I know my BCNurse said they don't recommend taking supplements, apart from vit D so I will have to check with her anyway, but wondered if any of you have tried it? Thanks as always for your anticipated help and advice. B. xx
Great news on the sleeping.
Every cloud........as you say.
Hello M M, good to hear from you. I have only been taking Amitriptyline for a week so not expecting much yet but I feel hopeful that it will help, and at least I am sleeping well, which I have NEVER done, so every cloud.......!!! I will report back when I have been on the A for a while longer. Have to see GP in three weeks to discuss how things are going. Thanks for your interest.......it helps to know we are not alone doesn't it? Hope all as ok as possible with you? X
How are getting on with the Amitriptyline? Any noticeable changes in pain reduction yet?
Looking forward to hearing from you.