📣 Survey Invitation: Tucatinib (Tukysa) and Metastatic Breast Cancer
Dear members, We'd like to invite you to take part in a short survey about tucatinib (Tukysa) for people with human epidermal growth factor receptor 2 positive (HER2+) metastatic breast cancer. This survey is for people who have either taken tucatinib (Tukysa), or tried to access it. Your feedback will help us understand the day-to-day impact of accessing (or not accessing) this treatment, including physical health, emotional wellbeing, financial pressures, and overall quality of life. The insights you share will be used to support a consumer submission to the Pharmaceutical Benefits Advisory Committee (PBAC), the body that decides which medicines are made more affordable through the Pharmaceutical Benefits Scheme (PBS). Take the survey here: https://www.surveymonkey.com/r/LJXB3KT The survey is open until 12 September. The survey is anonymous, voluntary, and takes about 10 minutes to complete. You can skip any question you don’t feel comfortable answering. Thank you for lending your voice to this important advocacy. If you have any questions or concerns about this survey, please contact policy@bcna.org.au
New member
Hi. I was diagnosed with mbc in 2021. An MRI done of my hip (me thinking I needed a hip replacement) revealed a bone lesion and further scans showed I had lesions in my skull, breast bone and right shoulder blade. Radiation helped with the pain in my hip and I am now able to walk unaided. I have been on letrozole and Verzenio (abemaciclib) since mid 2021 and so far results have been positive. Lesions have either shrunk or stabilised and there is no sign of cancer in organs. I know that one day treatment may cease to work but in the meantime I remain positive and enjoy every single day. I love to travel, cook and spend time with family and friends. I’m forever grateful for Bcna, my medical team and all the research that goes in to treatments for this disease. I know others are not as lucky as me and I wish everyone well on their individual journeys.
Ribociclib/Letrozole Combo - How long have you been on this plse?
Hi Everyone, I've been on the Ribociclib/Letrozole/Denosumab combo now, successfully since Nov 2018. I take only a low dose of Ribociclib, 200mg daily and so far so good. However, I'm heading towards the 18th month mark now and starting to get a little apprehensive about how much longer it will be effective for. I've read studies that have indicated to up to between 20 months and 30 months success for some lucky people. How long have you had success for? Cheers :)Skin Rash Side Effect with Exemestane (Aromasin) & Everolimus (Afinitor)
Hi All, I'm on week 5 with this treatment combo now. This last week I've broken out in a pretty bad skin rash, starts of red/pimply look and evolves into joining up into large red blotches. Its just horrible - I'm sure people will start thinking I've got Monkey Pox now! :o :D :( I've been to my GP on Onco Nurse's advice as my Once has been away with a family emergency. I've got every known pill and potion to conquer the rash/itchiness - antihistamine, steroid cream, Pentarsal, Chamomile lotion, moisturiser which seems to be managing it mostly. I know its a known side effect. Has anyone else had this side effect please? Does it persist for the whole treatment, or for only a little while and will then disappear in a good time/few weeks? How did you manage it? I did get mouth ulcers Weeks 2-4 (well managed with Dextamestane that I've now stopped), but they seem to have gone away for now anyway... Any help, guidance so very gratefully appreciated. Cheers
Is anyone under Professor Arlene Chan Onc (WA)? Mets BC treatment
The Annabel Crabb Q&A on Metastatic Breast Cancer is on tonight - starting 5pm East Coast time (I've just received the link.) https://www.breastcancertrials.org.au/qa-registration? On the FB page, lots of other Top Mets BC Oncs are being mentioned too - as having 'turned around Mets BC' ..... giving hope to many of becoming NED. Arlene Chan and Mitchell Chipman (Karen_C's Onc) .... Is any one under Arlene Chan (WA) ..... https://www.perthnow.com.au/news/wa/perth-oncologists-cancer-cure-leaves-mums-smiling-ng-14b016a85d9016f50ecfddb3bace0e6d A buddy in Sydney is Dr Nick Zdenkowski's patient.... and she thinks he is wonderful (on the TNBC Webcast here on Feb 17th).
Astra Zeneca vaccine while on Herceptin Perjeta
I just had the Astra Zeneca jab and the dr told me it wouldn’t work as well for me because I’m on immunotherapy (Herceptin Perjeta). I was surprised by this but went ahead anyway. Has anyone else on this been told that? Or that you had to get it at a certain time in the 3 weekly cycle?
Ribociclib and Anastrozole
Hi everyone, I started this combo in January 2019 for Mets lung diagnosed in December 2018. My oncologist told me that results are usually 12 to 18 months and then another line of treatment would need to be considered. Has anyone got any feedback on this combo. Feeling a bit apprehensive at the moment.New USA Drug Trial at preventing cancer cells going to bones
I've put this in the Mets Discussion area as well as general discussion - so that everyone can follow it. This could be a really important development for EVERYONE with BC to follow. This new trial sounds REALLY promising .... how good if this works & can be fast tracked all round the world. This trial comes from a leukemia background and is now being tested on BC patients with HR+ Mets - hopefully even preventing cancer cells getting into bone marrow on patients who are currently NED (No Evidence of Disease, but who may still have cancer cells circulating in the body that may turn nasty up to 5, 10, 15 years later) as some NED patients may go on to develop mets anyway. It has worked in Mouse Studies - stopping cancer cells from turning to bone mets. Now time to test it on humans. Duke Cancer Institute investigators Dorothy Sipkins, MD, PhD, associate professor of medicine, pharmacology and cancer biology, and P. Kelly Marcom, MD, professor of medicine, have just launched a proof-of-concept clinical trial of a new drug for hormone receptor positive breast cancer patients whose disease has spread to the bone. http://www.dukecancerinstitute.org/news/phase-1-trial-new-metastatic-breast-cancer-drug-launchesTrials of new Mets Drug at Duke Cancer Institute - Bone Mets
This sounds promising .... This trial comes from a leukemia background and is now being tested on BC patients with HR+ Mets - hopefully even preventing cancer cells getting into bone marrow on patients who are currently NED (but may still have cancer cells circulating in the body.) Up to 30% of NED patients may go on to develop mets. It has worked in Mouse Studies. Duke Cancer Institute investigators Dorothy Sipkins, MD, PhD, associate professor of medicine, pharmacology and cancer biology, and P. Kelly Marcom, MD, professor of medicine, have just launched a proof-of-concept clinical trial of a new drug for hormone receptor positive breast cancer patients whose disease has spread to the bone. http://www.dukecancerinstitute.org/news/phase-1-trial-new-metastatic-breast-cancer-drug-launches
