Joint pain, muscle stiffness
Hi all I am 5 weeks post radiation for invasive lobul ar carcinoma. 6 lymph nodes removed. I am on letrizole. I started getting joint pain and muscle stiffness in my knees shoulders hips and muscle tightness. When I mentioned it to radiation doc she said it would not be from radiation to breast area. Has anyone experienced similar symptoms. I had a mastectomy. No chemo.
Abemaciclib Verezenio side effects
Hi Ladies, I have recently started on Letrizole/Hormone Therapy, and Verenio / Abemaciclib and am struggling with the side effects. I am in the fortunate position in that both these drugs are being given as a preventative measure. I don’t have Mets, but am at very high risk of re-occurrence. Originally diagnosed with bi-lateral early breast cancer back in March 2023. Had a small 1cm triple negative tumour, and a larger (5cm), more aggressive (grade 3) oestrogen positive tumour with lymph node involvement. After initial breast reduction to remove both tumours and additional auxiliary clearance, I had 6 months of chemo, plus radiotherapy to both breasts. I managed to keep fairly positive throughout these treatments, and while at time a struggle did manage to work albeit at reduced pace throughout. Just as I finished radiotherapy my oncologist recommended abemaciclibb as part of a trial that is showing reduction in recurrence rates of around 6%. I’ve only been on these for 5 weeks, and while the side effects are manageable, they are not a lot of fun - diarrhoea, fatigue, vertigo, and just generally feeling unwell. Hot flushes and insomnia with the hormone therapy which again are manageable and on their own no big deal, but the combination has me exhausted. I was soooooo looking forward to end of my active treatment and getting some energy back, getting back to working full time aswell, but now with two years ahead of me on this regime, I am wondering if it is worth it. Oncologists reluctant to reduce dosage and are keen for me to stay on the Abemaciclib, but I’d love to hear from anyone else is in a similar position and how you are managing the pros and cons of the treatment options versus quality of life, and from anyone who’s been on Abemaciclib for a while to know if side effects improve over time. Thanks Jenni
Ribociclib Side Effects
Good morning, Sharing my experience with Ribociclib for early stage BC. (Diagnosis Nov 23, Stage 2B, Grade 2, WLE, Rads and then Letrozole / Ribo / Zometa / monthly zoladex) I had been on the Ribo medication (400mg daily, 21 days on 7 days off) for 5 months when my standard blood tests came back with high liver enzymes. I'd been feeling more tired than usual, but figured this was because I was slowly starting to do more. My wee was very dark, so I figured i wasn't drinking enough water. 2 weeks later (whilst off the ribo) my LFT was even worse. After seeing a gastroenterologist, having a liver ultrasound, MRI, and luckily avoiding a liver biopsy, the conclusion was Drug Induced Liver Injury. An uncommon but known side effect of Ribociclib. This will no longer be part of my treatment regime, and it'll be weeks to months before my liver function is back to normal. I was wiped out for a few weeks. No appetite, nausea, constipation, fatigue - i lost 4kgs in 4 weeks. My med onc has been away and I've been seeing a locum, but when she returns (my next appointment is early November) I'm going to ask if there are any other side effects I should look out for on my other meds. Just when I thought i was doing so well, and now i have to get physically stronger (again) and then mentally get my head around the fact that the Ribo for early stage isn't for me. My BC nurse said 'well, the letrozole is the main one, the ribo was a bonus' and this really concerned me. Significant (but very luckily) reparable liver damage as a 'bonus'? The gift that keeps on giving. Trying to not let this get me down, but boy oh boy. Sharing so that hopefully others can be aware of this rare side effect. Kelly
Paclitaxol and neuropathy - decision to stop
Hi there, What are people’s experience with weekly taxol treatment and neuropathy? I’m currently having weekly taxol + Herceptin for a recurrence of HER2+ BC. I’ve manage to do 8 taxol infusions but the neuropathy is getting tough. I’ve already had a 2 week break and steriods but the pain keeps coming back. My symptoms aren’t only in my hands and feet, I also feel like I’m being stung all over my body at times. Pressure and drying off after a shower can set it off too. My oncologist is talking about stopping the taxol and I’m meeting with her next week to discuss. Just wondering if anyone a had any experience stopping taxol early (I’m supposed to have 12) and how you felt about weighing it all up? I’m exhausted by the side effects but also want to have the best chance that this doesn’t come back a third time! Thanks!
Kadcyla - feet numbness
My concern is around nerve damage in my feet and how stopping this regime will affect my prognosis. Has anyone got some advice. Hello and thank you for creating this forum. I was diagnosed in late Jan 2024 and straight in at the deep end with 6 rounds of chemo then mastectomy in June. I was advised that there were still cancer cells present and told I needed to move to trans2 + Kadcyla. thanks in advance
Heart Question?
Hello all, its been a hot minute since I've been on here, but I'm back with a heart related question please? After my treatments chemo, stopped in Easter this year, long story but I got 1/2 way though the 16 cycles, Radiation completed on 5th July after 6 weeks. Not yet on hormone blocking tablets, that's another story for another time. Waiting on my KI67 results before I make that choice. But I got given my results today from my echocardiogram done 2 weeks ago - my oncologist has now referred me as a cat 1 to the cardiologist as they have found thickening of my heart chamber on the outside, this wasn't present in the echo prior to chemo starting. They say its not life threating and I'm unlikely to just up sticks as have a heart attack, always good know. So has anyone else out there in the breast cancer land experienced this? Not to sure what to expect, or how to manage this, I still get fatigued, I still have brain fog days or moments, I've returned back to my swimming pool exercises and swimming, the gym - as well as yoga and all my physio exercises I do. So I'm pretty active - I don't drink ( very much or at all) , my choice, think the last glass of wine was over a few weeks ago, I'm not a smoker, I watch what I eat since this dam cancer nightmare, I take all my victim's and supplements, I'm in menopause, sleeping is very very difficult due to the insomnia - I retain fluid, in my ankles and hands, this is how the oncologist picked up on this, that and I got on my high horse about testing the heart after all the treatments had been done, to see if there are any changes - after watching breast cancer trials webinar about heart health and breast cancer, it was an incredible watch, so much info given and shared. So they agreed to do a follow up echo. And now this ?? So any one out there with anything they would like to tell me about, share etc, I should hear back from the cardiologist department at the hospital with in 30 days, guess Ill know more then, just for now, I'm completely guessing as to what happened now? Thanks so much :):smile: I'm not worried (much)
