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.
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
De Novo Metastatic with new progression - first post
Hi there, I am completely new to the discussion boards (first post) and trying to stay positive. I was wanting to reach out to others who might understand what I am going through. I was diagnosed de novo metastatic on 04/07/2018. Originally it was a single spot to my spine (L2) then a few weeks ago I found out there were some new spots (T12 and right sternum) and then yesterday I found out it is now also in a lot of other vertebrae, left hip and that one of my vertebrae has partially collapsed. I am on the ribociclib/letrozole combination as well as receiving monthly injections of Zoladex and Denosumab and am taking Vitamin D and calcium supplements. Unfortunately my regular oncologist was away yesterday with a really lovely trainee oncologist taking my appointment. He was very patient with me but wanted to wait until I can see my regular oncologist in two weeks time where she will discuss what happens next with treatment. He told me it was very unusual but it didn't seem the ribociclib/letrozole combination was working for me anymore but there were other treatment options available. Back in the beginning, I did get a pathological fracture to my spine (L2) which was treated after a month or so with stereotactic radiotherapy which I thought had controlled the tumour. I started experiencing pain in my lower back again and was referred to do an MRI which shows multiple new metastases. I am really worried about getting another fracture as the last fracture I had was so painful and debilitating. I really hate having cancer but I REALLY hated losing my mobility. I am 42 years old and live alone. I am currently taking extremely good care of my health (nutrition, daily low impact exercise and rest) but don't know what else to do. Is there anyone out there who might be able to give me hope or advice about ANYTHING I can do for myself to help my situation? The hardest part about this situation is I feel like I am not in control of this situation at all. I am so independent and it is hard for me to ask for help.Can medication be taken in the evening.
Hi Everyone, I have recently commenced my first three week cycle of Anastrozole and Ribociclib. The fatigue and muscle ache was dreadful from about day 8 to day 13. I was wondering if taking the medication in the evening would make it easier for me during the day time. I asked my Oncologist if it mattered when I took the tablets ( other than the same time every day within the cycle) and he said he didn’t think it would matter. Has anyone got any advice or can share some experiences with taking these specific meds. Hope you are all doing OK xx
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
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