Kisqali on PBS, very few will get it.
those of us who were waiting to get Ibrance or Kisqali on PBS we will not get either. Only newly the diagnosed who have NOT had an Aromatose drug. ( there would be very few of them ) BCNA failed to include this in their news item. Those who were on a trial or compassionate grounds will get Kisqali on the PBS. Go to the PBS website, put in Ribociclib and click on ' Authority required ' then read the sorry tale. BCNA applauded the health minister for his decision deliberately ignoring all of us who have stage 4. BCNA should be condemned for there reaction. Good luck every one. wendylou
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.
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
Join our campaign to have ribociclib and palbociclib subsidised in Australia
BCNA is calling on its members and their supporters to write to their local federal Member of Parliament and state or territory Senators to urge them to support the listing of ribociclib and palbociclib on the PBS. Information regarding the campaign including letter templates and a list of federal members and senators can be accessed via this link. Please take a look and encourage your family and friends to do so too.
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.
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 CFantastic 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
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?
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