Breast Cancer Now Forum

Hi everyone I hope you are doing well and tolerating the joint pain. Mine is more manageable with exemestane, still there, especially hands, but liveable with. Three more years now and one more zoltanic acid! Time passes in a way I felt wasn’t imaginable during chemo! Hugs to all x ... View more

Hi wassoscared I am sorry you are going through all this. I have resigned myself to joint pain after 1 year in Letrozole and then exemestane, both cause the pain and I don’t sleep well either. Wake up with hands I can hardly move and ankle pain, weirdly elbows. Moving around helps. I walk and garden but I just don’t have energy for Pilates etc, I wish I did. four more years but I remind myself it is protective! Good luck everyone with this continuation of treatment, it’s a tough daily reminder but we are protected to a larger extent than if we didn’t take it. Hugs to all.  ... View more

Thank you Sheila for your message. I am 64 and also don’t like this being put down to menopause, done all that! I feel reluctant to stop examestane, any risk of recurrence seems difficult after all we have shine through. But I will talk to my oncologist again and think about Pilates. My main exercise is walking and gardening, I try to do something each day but it’s all quite gentle! I must get the exercise bike out again!! ... View more

Scrolling through the complete list of messages and responses, it seems to me that for the most part this is something we just have to put up with on either tamoxifen or aromatase inhibitors.  There doesn’t appear to be anything that really helps apart from maybe CBD but that seems complicated to obtain and use in appropriate dosage. I get quite depressed some mornings and the nights are awful, I never sleep properly even though I’m tired. I feel as though I must wear my family out so I try not to mention it too much. Cancer really does suck, I had no idea that we had 5-10 years of arthralgia to manage and it could continue after we stop the meds. Chemo was hard but at least there was an end in sight. But this isn’t cancer and therein lies some comfort and there are times during the day when the pain is less obvious,  warm greetings to you all, we just keep swimming and make the most of what we have ❤️ ... View more

Interesting! How did you get CBD prescribed? I’m prepared to try anything! 🙏 ... View more

Hi I am wondering how everyone is now the summer is almost here? It feels different to last year when we were still in treatment but at least able to be outside! So much rain now. My oncologist switched me to exemestane, it’s the same group of oestrogen blocking drugs but he thought the arthralgia might be less. Sadly it’s no different and I remain in constant pain especially at night and early morning. Another 4 years feels hard to bear but I just keep saying it’s not cancer and I will manage. Another suggestion was I could change to tamoxifen, but I think that has its own side effects too. Is anyone taking tamoxifen? Another biphosphonate infusion in July and still having scar therapy, seems we can never escape it.  Sorry to moan, I really hope you are all well and enjoying getting back to a degree of normality! hugs to you all xx ... View more

Hi everyone good to hear how we are doing. It seems incredible it’s almost a year since first lockdown and us going through chemo. I am doing well, I started on Letrozol which gave me awful joint pain so switched to Aromasin but not much different yet. 6 monthly IV infusions biphosphonate. Working 4 days a week and have hair again! Im 64 so already menopause over, I’m sorry some of you are going through it so early. It’s not a comfortable experience. Take care and enjoy this Spring, it’s very different to last year 😊🌷 ... View more

@JPet you are definitely not alone! Today I asked my husband as usual to massage my joints, I said I feel as though I am being punished after all the cancer treatment as I have had so little sleep and my whole body hurts. I can’t get up yet. Probably because I am 63 I don’t have hot flushes - went through all that about 10 years ago - but everything else is so similar to you all. It feels like this is a stage in cancer treatment that isn’t really described in detail or explained. Like your dog walk, I do try to walk every day and I do think it helps until the next day! Take care everyone and try to enjoy Christmas despite all the restrictions we live under, at least we have life ❤️ ... View more

Hi again Sheila, my sleep is awful. I wake every couple of hours with joint pain, I start the day exhausted. I uncurl my body and dont really get going until about 10, my dear husband brings me coffee in bed every morning because I’m so slow. I do improve as the day goes on and walking helps but my work is quite intense so I don’t have time to exercise often. Dark evenings don’t help.  I wasn’t prepared for this at all and by the sounds of things there isn’t much difference between Anastrazole and Letrozol so it’s Hobsons choice! Ah well, it’s not cancer or Covid, this too shall pass eventually. It helps to know we are not alone, hugs to everyone xx ... View more

I feel just like that Shiela, I am the same age as you. Maybe I should try Pilates or yoga in the new year! ... View more

It feels as though we have no choice, I really wasn’t prepared for this and feel I shouldnt complain as at least joint pain isn’t cancer! But I have to uncurl my body every morning, and it doesn’t sound as though there is an alternative unless CBD can help, let us know please! 💕 hugs to you all ... View more

Hi everyone I finished radiotherapy following mastectomy and chemo end of June. I have been on Letrozol since and joint pains just get worse especially my hands and wrists, but also ankles and hips. I call it uncurling in the mornings as it’s so stiff and painful. Can you explain about the Anthony Williams thing please? My oncologist said the joint pain would improve in a about 1 year, I have no idea why it would change but hopefully it will, as someone else said I don’t need any more poison! Thanks ... View more

Hi everyone i hope you are all staying safe and well and able to enjoy the nice weather. I had my last Docetaxel on Thursday and the PICC removed - yay!!! It felt like liberation at last. Feeling some side effects today but hoping as dose was reduced it won’t be anything as awful as before. So my next step is radiotherapy in June x 3 weeks and then Anastrazole. I think it will be Ok compared with chemo. And looking forward to some hair growth, being able to meet my new granddaughter eventually and spending time on my allotment!  What a journey chemo is, but it does come to an end, I wish you all well with yours and thank you for all being here and the great support. It’s just good to know none of us are alone. With love Sally 😘  ... View more

Hi Daisy  I really hope your WBC goes up too and the EC goes well for you. After my last chemo I will start radiotherapy x 3 weeks in June and finally Anastrazole (I am oestrogen positive) for 5 years. i am expecting all that follows to be easier than chemotherapy so that when the restrictions are eased I can be with my newborn granddaughter, arrived last Wednesday! It constantly feels to me that we cancer patients have double and even triple whammy with Covid19, we have to stay so strong. Stay safe, stay well, stay strong all of you. 🌈❤️🙏xx     ... View more

Hi Daisy yes the wbc thing is horrible, mine dropped to 0.5 so I developed neutropenic sepsis but that’s all over now thank goodness!! I had my surgery in November so in that way I am fortunate, it’s done. At least you know your tumour has reduced in size, that must be a relief. Mine turned out to be twice the size they thought it was (I had lobular cancer) which was a scary thought post surgery.  for EC i was given dexamethasone, odenastron and domperidone. They are all supposed to control nausea and vomiting in different ways. I didn’t vomit at all but my nausea was never completely controlled. They are also very constipating so have something ready for that! I lost all my hair after 2nd round of EC butI didn’t use the cold cap so just hoping that my hair will grow back after last round of Docetaxel. It seems everyone reacts differently, you may not have the nausea, I hope you don’t! Good luck with it all, and thinking of you. 🌈🙏 Sally xxx   ... View more

Hi Daisy i started my chemo on EC and found it better than Docetaxel. It did cause nausea, even with the anti sickness medication. But like others I found snacks easier than proper meals, especially savoury or salty things like soups or toast and marmite. Fizzy water, flavoured with lemon/lime was good, extra strong mints, mint tea. Ordinary tea and coffee was horrible! Took about 7 days for the main effects to pass but lingered for longer. For me Docetaxel has been much worse, last one on 7th May and removal of the PICC! Can’t wait to get rid of it. stay safe everyone, we still have a while of isolation to go ......🌈x ... View more

Fantastic Lorna! Having had my surgery first I would say completing chemo means you are over the worst part. Wishing you well for your surgery in a few weeks, hope you don’t feel too bad after your last chemo. with love Sally ... View more

Hi Laura good luck for today, good to get the chemo completed but sorry to hear the surgery is on hold, that must be difficult. I am going through the effects now of Docetaxel last Thursday, I feel as though I don’t have an iota of energy, dry mouth and horrid taste and body aches. I am very alert to the neutropenia I had last time and frightened of being in hospital again, but hopefully it won’t be as severe on the reduced dose. I am full of admiration for you and the other mums going through all this and looking after your children, you are all amazing women! ❤️ ... View more

Hi how is everyone doing now we move into another 3 weeks of lockdown? Another 9 weeks or so for us! I just suddenly found that really hard tonight, isolation until June 15th, feels tough. I had my reduced dose of Docetaxel yesterday (5th cycle), I was very anxious following the last episode of neutropenic sepsis but the chemo nurse was really lovely, explained everything and so far side effects have been quite low level, just waiting to see if anything changes once the dexamethasone has worn off.  I have a full 1 hour telephone assessment with consultant on 27/4 that will mean I can ask him all my questions about next steps, I feel relieved about that. I hope you are all having good communication about treatment and the reassurances you need, I have found the breast care nurse to be so supportive and helpful, I hope you have access to yours.  Have a good weekend, even if a little rainy! Take care, stay safe 🌈❤️Xx ... View more

Dear everyone What a weekend of isolation, it really is such a double whammy for us, even a triple whammy for those who are now not sure about their treatment. I found some distraction and energy in using my exercise bike in the garden (lucky to have both I know) and just gently peddling in the sunshine with my headphones on took me away from chemo and all the trauma of the past 2 weeks. I recommend it if you have access to one! Otherwise I remain in the house, mainly in my room with my husband bringing meals and talking across the room, another 10 weeks feels hard but I have decided to take each day at a time and not to think about it as 10 weeks. We can only hope upon hope that people out there will continue to follow the rules and stay at home. I have not yet received any priority shopping slot from my local store despite registering, perhaps it will come this week. Have others? It will make a difference to my husband shopping which even if only occasionally I would rather he didnt. Regarding treatment I seem to be OK. I had my mastectomy back in November (without reconstruction) - that seems a lifetime ago when I thought chemo would be horrible but not as awful as it has been and radiotherapy a walk in the park. Now despite the horrors for me of Docetaxel (and it might not be like that for everyone) I am actually relieved that my treatment will continue albeit with 1 weeks postponement. Which means that in one month from today I will have my final chemo and the PICC will be removed, that feels like liberation! I will still need radiotherapy and hormone treatment, and bisophosphonate for the bones, but all of that feels manageable by comparison with chemotherapy. So whilst for me it feels like a light at the end of the tunnel (and there are still things that could change on the way) I do recognise that for many women there remains uncertainty about treatment schedule, efficacy of treatment so far, when you will have your surgery etc. alongside managing quarantine, looking after children and the impact of loss of work and everything. We are in the hardest of times imagineable, but none of us are alone and sharing our difficulties through this forum will help us to reach a new place. With love and hugs, Sally x ... View more