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 🤪😍
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.
New to sharing
Hi all, first timer here I was first diagnosed May 2013, 6 rounds of chemo, 30 radiation treatments, then Tamoxifen til 31st Oct 2017 when my world fell apart, bone , lung, and a few other places mets, nail inserted on 24th Nov, lucky to get a place on the ribociclib compassionate access program, combined with letrizole and denusomab, mixed results so far. I am still trying to get my head around this. I am so tired most days and pain is my new normal. Anyhow, just wanted to say hi, I usually keep pretty much to myself but it's good to know I'm not alone.Fantastic news announced tonight in the budget
From Kirsten Pilatti CEO BCNA Dear members, I am so thrilled to be able to let you know that all our great lobbying has tonight taken a significant step forward to helping women living with metastatic breast cancer. Tonight the Government announced the funding of ribociclib for women newly diagnosed with metastatic breast cancer. It is hard to believe that the CDK campaign began two years ago. But through the lobbying of you and our members tonight we can celebrate. I wanted to acknowledge you, our policy team led by Danielle Spence and the thousands of Australians that signed our petition and wrote to their local members raising the awareness of the importance of this innovative drug. We are particularly delighted with how quickly the listing has occurred following the PBAC recommendation on 20 April. There is no doubt the power of our voice has helped here! The recommendation from the PBAC is for first line treatment and we will now turn our attention to ensuring we increase access for all women living with MBC particularly through the expansion of the pharmaceutical companies compassionate access schemes. Here is a link to our latest news that will provide you with all the information you need. https://www.bcna.org.au/news/2018/05/federal-budget-gives-a-lifeline-to-3-000-women-with-incurable-breast-cancer/ If you or any of our members have questions then they can of course call the Helpline on 1800 500 258 where nurses will be able to assist. You will see in the latest news that we encourage women who may already be taking a CDK Inhibitor that they talk to their oncologist. I hope you can all celebrate with a pink bun – the Bakers Delight campaign is well underway so if you haven’t already please pop in to your local bakery and say thanks! Cheers KP
Thank you!
Just wanted to say a big thank you to all of you who sent letters to your ministers regarding CDK inhibitors and to those who encouraged others to write either by sharing our social media posts or posting your letters and responses on the network. Your efforts really did make a difference and we have finally seen an approval recommendation by the PBAC for these important new drugs. Our work is not done yet though as we now need to put pressure on the pharmaceutical companies and government to reach a cost agreement quickly so that Ribociclib and Palbociclib can be placed on the PBS and therefore be more widely available for first-line treatment as soon as possible. Once they are on the PBS for first-line treatment, we will advocate for Compassionate Access schemes to open up for those requiring the drugs for later line therapies. We know there are many women who could benefit from them who have had other lines of treatment and we want you to know we are fighting for you. Danielle Spence, Director, Policy & Advocacy at BCNA, advised ‘CDK inhibitors, when combined with a hormone therapy drug, don’t just slow down the progression of the disease but can also provide a better quality of life without the toxic side effects of chemo. BCNA will therefore continue to lobby for these drugs to be available to all who can benefit from these therapies.’ We will therefore be asking you soon to write again to your politicians so watch this space!
Kisqali on PBS, very few will get it.
I logged in today to share a couple of community services I have been using in my area and was deeply concerned about the tone of conversation coming from disgruntled members surrounding the availability of a new CDK inhibitors Ribociclib (Kisqali) on the PBS. I am dismayed as I do not believe BCNA has mislead anyone. It is an accomplishment to get any drug up onto the Pharmaceutical Benefits Scheme who are not transparent, so it’s very hard to gauge what, if any progress is being made. BCNA informs, empowers, represents and links together people whose lives have been affected by Breast Cancer. Their existence is for their members and as a Consumer Representative, I have seen first hand the work they put into advocating on our behalf, working with stakeholders such as politicians, pharmaceutical companies, health bureaurcracies, cancer medical services and other groups and who have vested interest in our Health, TGA and PBS systems, it’s no walk in the park. Please don’t disparage or undermine the work that is being done in this area for our benefit. I agree that the scope for the use of this drug is very limited, and this is disappointing, but it’s a start, not the finish. Frankly we are at the whim of pharmaceutical companies who determine if our market is worth investing in and there also has to be political will, this is where BCNA can have an influence but there are no guarantees. I feel BCNA has been attacked because they are a soft target. Its not so easy to get a voice elsewhere, so please don’t attack an organisation that has your concerns at heart. In 2015 there was a Senate Inquiry to consider the availability of new, innovative and specialist cancer drugs in Australia, including "the timing and affordability of access for patients". BCNA’s interest was to advocate for Kadcyla and Perjeta drugs to go onto the PBS. A highlight for me as a cancer survivor, was personally presenting the case for Kadcyla to go onto the PBS. This process took 4 years! Australia is behind in the adoption of medical technologies, and there are a growing number of patients unable to access some medicines compared with their overseas counterparts. Fundamental reform to the way cancer drugs are made available requires broad consultation with stakeholders and society. BCNA gives us a voice. Living for 12 years with metastatic cancer, I do empathise with the group who are struggling to get what they need to live. We do often look down the barrel of a gun but it’s nobody’s fault that we have metastatic cancer. I too have had times when I was going to die but I am a strong advocate for myself and others. We need BCNA to be with us to amplify our voices. Attacking BCNA whose existence is to make our lives better, who identifies us as a crucial and integral part of them isn’t the way. Everyone is entitled to voice their concern, but I for one know that BCNA will continue to fight to get better outcomes for us. In the meantime it’s up to us, through our Oncologist and others to keep ourselves top of their mind as its them who are our personal advocates in getting the latest technology to keep giving us a life. Cancer is just part of my life now, and I always try to have hope. I would like to see a philosophy of “Patient Centred Care” but political will has to be there to make this happen. My medical team are doing a fantastic job keeping me well. Nonetheless as I have expressed, there are many areas that need to catch up, so we need to keep the conversation going so the powers that be start listening and make changes to the existing for the better. I count my blessings that I am still here enjoying life with my family and friends. I want this for other people who need life-changing treatment as I have had. Karen C
Ribociclib now available in Australia
I saw yesterday that Ribociclib is now available in Australia: https://www.9news.com.au/national/2017/11/02/18/13/breast-cancer-drug-ribociclib-australia This is a drug that is similar to palbociclib. Although it's not on the PBS either, I wonder whether the fact that there are now 2 options available from different companies that this will bring the cost down a bit. One can only hope!! Also I believe that ribociclib is available by Novartis through compassionate access for newly diagnosed women that have not been yet treated with chemotherapy for their metastatic breast cancer.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
Recovery from pleurodesis and starting Ribociclib (amongst other things)
Hello Everyone, A bit of background 2013 i was newly diagnosed on my 39th birthday with invasive ductal carcinoma, ER + Her2 negative (Stage 2B, lumpectomy, 2/13 nodes, chemo, rads, tamoxifen) Also left my husband during treatment, for multiple reasons, a good decision. Around my 44th birthday this year in July, 5 years later, the sneaky bastard of a thing has returned! I was getting short of breath, and thought for a while that I lacked cardio fitness, even bought myself a skipping rope. This symptom did not improve and that little voice inside my head piped up to get this checked out. A chest xray revealed quite a lot of fluid in my right pleural cavity, almost 2 litres of fluid was drained, subsequent scans and cytology revealed bone mets to my spine, rib and sternum and adenocarcinoma (malignant pleural effusion) 2 weeks ago I had an operation by a cardio thoracic surgeon called a VATS talc pleurodesis, this is a more permanent solution for the fluid collecting in my chest cavity rather than having multiple aspirations to drain fluid that will just keep accumulating. Over 4 litres drained and a 6 night stay in hospital hooked up to a drain. Recovery has been slow and painful from this procedure and I'm wondering if this has been the case for other people? My lung is still colllapsed, I do hope that it will re inflate eventually, leftie is doing great but righty was squished for some time. 19th Sept I'm schedule for an oopherectomy (ovaries removed to induce menopause), jeez I hope I'm match ready for the next op! I'm sure ladies on here that have had this procedure would have mixed side effects and reactions, I guess I'm after some reassurance that I won't turn into a demon woman. My oncologist will start me on Ribociclib with an Aromatose inhibitor. This drug has very recently been approved by the PBS, are there any ladies on this drug and are you coping well with it? I have 2 beautiful boys aged 9 and 11, I truly hope to be around long enough to guide them through their milestones into adult men. That's the thing that really effects me with this diagnosis, the impact on my children. We all want our mums to be around for a long time, my mother has been an amazing support to me over the years, I could't thrive as much as I have without her. Anyway, thank you for taking the time to read my post, you chicks are amazing and I enjoy reading your posts as getting real responses to people going through the various procedures, drugs and experiences is more supportive and helpful than reading a clinical study on Dr Google. Love and healing energy to you and your families. Trish