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?
2 years - Ribociclib/Anastrolze
Hi Everyone, I just wanted to share some positivity and hope for any of you that are on the Ribociclib & Anastrolze combo.I have just completed 2 years and feeling pretty good. Hair is thinning at crown, the feet are disgustingly dry and the hands and nails are peeling BUT ... who cares, I can live with it... I’m well and enjoying life. I hope you are all doing ok and really wish you the very best of health for 2021 xxx
Two new compassionate access schemes for metastatic breast cancer patients - 17 June 2020
Hello everyone, BCNA is pleased to advise that after many discussions with relevant pharmaceutical companies, two new compassionate access schemes are now open for patients wishing to access a CDK4/6 inhibitor for second or later line treatment of hormone receptor positive, HER2-negative metastatic breast cancer. To enquire about either of these programs, please speak with your medical oncologist. Ribociclib – first and second line treatment (Novartis) The SPARK Plus access program, being offered by Novartis, allows eligible patients to access ribociclib (Kisqali) free of charge for first and second line treatment. In this setting, ribociclib is given in combination with fulvestrant (Faslodex), which is not currently available through the PBS. Fulvestrant is not provided as part of SPARK Plus and must be accessed independently, which will incur a cost. AstraZeneca currently has an access program for fulvestrant as a monotherapy. BCNA is not aware if the program is being extended to patients wishing to use fulvestrant with a CDK inhibitor. Please speak with your medical oncologist. Abemaciclib – third and later line treatment (Lilly) Lilly has opened a special access scheme to provide abemaciclib (Verzenio) for third and later line treatment. Patients will be assessed on a case by case basis but must meet the eligibility criteria for the MONARCH1 trial. These include: Prior endocrine therapy (but no prior CDK4/6 inhibitor) At least two prior chemotherapy regimens, with at least one but no more than two in the metastatic setting and one must have included a taxane Adequate organ function Measurable disease according to RECIST v1.1 ECOG performance score of 0/1. In this setting, abemaciclib can be given as a monotherapy or with fulvestrant. PBS applications for ribociclib and fulvestrant The July meeting of the Pharmaceutical Benefits Advisory Committee will consider applications for ribociclib for first and second line use, and fulvestrant in any line of treatment. BCNA has provided a submission to PBAC in support of both drugs. The outcomes of the applications are due by the end of August. For more information, see the agenda for the PBAC meeting.
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.
Recent MBC - sternum
I was diagnosed with MBC on 5 November, (first diagnosed with BC in August 2016). I have been told that it's detained in the sternum and no other areas of the body and it is thought that it was there when the breast tumour was removed in Sept 16. The suggestion is that I stay on Tamoxifen or as I am premenopausal that I have my ovaries removed and I would then have access to either Palbociclib or Ribociclib. I could have a monthly ovarian suppression injection rather than have them removed. I am currently looking into the options presented and will see the medical oncologist in two weeks time. I am just wondering if there are any others here on this network that have experienced the same thing?6 months on Ribociclib
Well it’s been 6 months and the Ribociclib combo seems to be working. I started this Mets journey in Dec 2018 with tumour markers at 114. My latest blood tests were in early June with tumour markers at 42. It’s a nervous week this week with scans, blood tests and Onc visit, so fingers crossed that my results stay positive for another month. One thing I have learnt on this journey is it takes the emotional rollercoaster ride to help you cope with the good and bad days and aids the process of learning to live with cancer rather than focusing on dying of cancer. Hang in there 🤪😍
new bone lesions....help whats next for me
Hi all, I thought I was off this merry go round that is cancer. I've just been diagnosed with METS on 2 ribs(one each side), humeral head, scapula and a also in pelvic bone. I originally thought it was only in the 2 ribs which were discovered via a bone scan and then a follow up MRI. I elected to pay the exhorbitant fee for the PET scan and my breast surgeon has just called tonight to tell me it's in the places other than ribs. He has said they are only tiny spots. At my oncologist appt the week before xmas (when all i had was the 2 rib mets) the game plan was shit hot drugs as she called them - letrozole and ribociclib, then a massive single dose of radiation to the ribs. Now, I'm not sure what next step will be seeing as though its in different spots. She did tell me at my last appt not to google but to come in here so here I am. Sorry, this is really rambling. I am absolutely shit scared, I have 2 kids who are young teenagers and have recently divorced my partner, long story but he couldn't cope with my ongoing medical issues as cancer was 95% caused by me according to him and I couldn't live with the ongoing guilt. Now I'm in limbo land with everything. <My oncologist is away until mid Jan when I have my next review. Hoping for any words of wisdom, the letrozole is absolutely killing my joints in my feet particularly and I haven't even started the ribociclib and won't until the review with her. Thanks in advance xoxox