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. KellyEarly Access Program - Kisqali / Ribociclib for EBC
Hi there, My medical oncologist called me yesterday to discuss the issues with the current early access program for early BC and Kisqali / Ribociclib. Apparently, the current formulation contains very small quantities of 'nitrosamine' which have been shown in studies to potentially (in a very small number of cases) cause another cancer. The new formulation will not be available for a few months from the manufacturer. Has anyone else who is on Ribociclib had this discussion with their med onc / decided to pause the drug - or decided that the risks are OK and chosen to continue with the medication? Noting there is a BC conference in Berlin next week (my med onc is going but not presenting) and there are a number of sessions discussing CDK4/6 inhibitors for early BC with high likelihood of recurrence. Not sure also if this affects mets patients who are on Ribociclib already too? Just when I think I'm on a certain path things change ... again. Kelly (totally acknowledging personal choice etc - but keen to know what others have been told, and if anyone is OK to share, what they have decided to do).
Adding Kisqali to hormonal therapy to early stage BC after surgery reduces recurrence risk.
People who took the targeted therapy Kisqali (chemical name: ribociclib) plus an aromatase inhibitor after surgery to remove hormone receptor-positive, HER2-negative, early-stage breast cancer had better invasive disease-free survival than people who took only an aromatase inhibitor, according to results from the NATALEE trial. There's recently been a study done on adding Kisqali to hormonal therapy after surgery reduces recurrence risk - up til now, it has also been used in combination with the hormonal therapy Faslodex (chemical name: fulvestrant) to treat advanced-stage, hormone receptor-positive, HER2-negative breast cancer that hasn’t been treated with hormonal therapy yet, or has grown while being treated with a different hormonal therapy, in post-menopausal women. It is reputed to have less nutrapenia than some types of chemo - but may induce diarrhoea The NATALEE trial included 5,101 women and men diagnosed with early-stage, hormone receptor-positive, HER2-negative breast cancer over 3 years. My initial thoughts are that 3 years isn't 'long enough' to really give accurate long term results on reducing recurrence - but any trial that helps reduce recurrence has to be better than no trials! Sometimes just combining a totally different drug to an existing regime can help big time. Some years ago, they added Itraconazole (an anti fungal treatment for nails) to Prostate Cancer treatment & it (and other anti fungal treatments) is reducing tumour growth and side effects in Prostate Cancer patients .... so thinking outside the box, helps! There is a podcast to listen to here, as well as more information on the treatment in the link below - it could be something to raise with your Onc, if or when it becomes available on PBS for patients in Australia ...... https://www.breastcancer.org/research-news/kisqali-reduces-recurrence-risk?
Would you take part in a clinical trial?
So I've been approached by my oncologist to take part in a clinical trial of drug called Ribociclib- from my understanding it is one that has been used in the last few years to treat metsatic BC with good results. They are now trialling this with pre menopausal women like myself who have just finished treatment. Like all trials it entails many scans, appointments, time off work, blood work, having to deal with possible side effects.. all on top of looking after ny young family. And I just don't know if I can do it. I finally feel like I'm getting normality back in my life but I don't want to regret forgoing this opportunity (touch wood if I ever have a relapse..And then think how this trial could have helped me). This study is for 2 years. What would you do?
CDK4/6 inhibitors PBS
Hi, Can someone share their experience or knowledge of who can access CDK4/6 inhibitors? I’m trying to establish what my situation would be in the current PBS environment if I became stage 4. I am on an AI for endocrine therapy. The wording in the PBS documents is unclear it says exclusion criteria - treated with AI for more than 28 days. Is this for mets though or all stage cancers? Given that AI is now preferred choice of endocrine therapy for hormone positive cancer, does this mean if those of us on AI for early stage would not be able to use palbo, ribo or abemociclib if we progressed to stage 4 under PBS ruling and would need to self fund? Thanks everyone.