Hello! I’ve not been on here for weeks so am just catching up. It’s so good to hear how far everyone has come but equally it’s horrid that there are so many ongoing side effects.
From a physical point of view I’m almost through the bad nails and lashes stage but my eyebrows have gone again! My hair is RIDICULOUS! Salt and pepper poodle perm that I’ve had shaved at the sides, can’t decide whether to shave it off again,dye it blonde…!
The main issue are the aches and pains. I’m like an old woman at 47! I’m sure it’s the Letrozole / Zoladex. Getting up in a morning is awful, I hobble around. Back ache is almost daily, my knees are terrible. Oh, add brain fog to that as well. However…I’m so grateful to the treatment too!
In sad news I lost my little cat Winifred last month, she was only 7 and I’ve been heartbroken. I’ve still got her twin brother Winston but life is just that bit emptier now. I just hope the rest of the year will be kinder!
Sending love to everyone as we carry on ploughing through this! x
I’m sorry to hear this, animals are such lovely companions, sending you a big hug
My hair is also coming back spiral, pepper grey and black in colour and has a world of it’s own, it’s going to be very challenging.
I unfortunately heard that the cancer they took out of me from my op was still active so I have to undergo between 14-18 sessions of Kadcyla - a chemo combo. Which was hard to take in as I thought my chemo journey was finished I also still need radiotherapy so it’s at least another year of treatment for me.
Nice to hear from people who’ve not been on for a while, some good news but also some bad. It does all feel a bit never ending some days. Sorry to hear about those who need more treatment, that must be tough to handle.
My hair is growing fast, it’s almost completely white and all different lengths so I’m wondering whether to chance it with a hairdresser to get it tidied up….Ive realised I’ve been avoiding mirrors and sometimes I forget I’ve got this weird short hair! I have to say I’m enjoying how easy it is to manage, I may not grow it back long again….
I feel very lucky to have finished everything apart from 6 monthly bisphosphonates; obviously I turned down the Letrozole. When I hear about other people’s side effects I have no regrets about that. I hope those who are struggling with it improve soon .
I’m very focused now on diet and lifestyle which I’ve posted about recently. Happy to share any tips if anyone is interested in something specific
So glad your CT scan is clear. It’s just really hard when you think you are on one path and then things change. Hope it all goes well during your next stage. What chemo will you be having?
Yes I get tightness in my finger joins and sometimes it’s so sore it wakes me up at night but currently I’m only doing PHESGO which is changing to the herceptin jab next time. I think it’s long term effects from the aggressive chemo
Mine has only started following starting Zoladex. Once I’m up and moving it’s OK. So key to keep moving and be active generally but especially whilst on these meds.
I’m about to start letrozole, anxious ref the side affects but as I had high ER/PR scores, I have to give it a go as I’m high risk for reoccurrence.
Has anyone started oral chemo yet?I started it last Tuesday (abemaciclib) 150mg. I’m not having a great time, just wondering if anyone has any words of wisdom.
Diarrhoea! Taken loperamide which does work, but stomach still upset and I’m nauseous and exhausted. I’m keeping a food diary, but there doesn’t seem to be any specific triggers. I’ve got a review a week on Tuesday. Didn’t react this badly to actual chemo.
@w0rnout80 It’s your first week so it’s likely it may be settle-or not! I also had terrible nausea-as I did on chemo-the first couple of weeks but that did pass. Diarrhoea is an issue for 85% on this drug & I’m right there with you on it. The evidence is also that it often settles after 3 months or so. I’m giving it the 3 months & then deciding what to do. They’ve been very open to a dose reduction from the beginning with me but I’m trying to get to the 3 months & then decide. My bloods have been good. Agree with you little reason to what prompts the diarrhoea although I’ve found cutting right back on fruit does help which for someone who loves it is really hard. Smaller portions/more frequent smaller meals than big ones. Dairy. Lots of fibre. Spicy. These do all seem to trigger it. Sourdough bread and white pasta seem to keep mine calm but it is trial & error. Do keep in touch in the coming weeks. I’m also struggling with fatigue. It’s not an easy drug for many but I’m determined to get through the 2 years as I have such a high risk of recurrence,
Sorry I’m only just answering. I’ve actually been feeling stronger and out and about more. I’ve been enjoying days at my beach hut and paddling in the sea. The oral chemo is Capecitabine. I’m not looking forward to it as there’s a lot of side effects in the booklet!
Hi, I’m not entirely sure why some are offered it and not others, but in my case I am er/pr +, her2- stage 3, grade 3, lymph node involved and I’m 45. I know another lady who is on ribociclib rather than abemaciclib and she is meant to take that for 3 years - she had no lymph involvement - and that was the only difference between us. I think anyone who is classed as a high risk of recurrence is offered it.
Thanks @w0rnout80 . I wonder if it’s also to do with age/stage/grade of the cancer? I have a friend (male) who has been on oral chemo for years for chronic leukaemia, he has ups and downs but I’d say his experience is nothing like chemo infusions. Hopefully it’s reasonably plain sailing for those who have to have it here
I also still need radiotherapy so it’s at least another year of treatment for me.
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