Are you a member of the private Living With Metastatic Cancer group?
My name is Rachelle and I am based in Melbourne. I have MBC and joined the newly formed MBC Advisory Group to help BCNA, at this stage, with the revision of the Hope & Hurdles hardcopy guide and to inform BCNA of emerging issues affecting people with metastatic breast cancer. I have also put my hand up to be a group leader of the private ‘living with metastatic breast cancer’ group to encourage people to share their experiences and support one another. I will also keep you informed of the advisory group activities and welcome your thoughts on the good things and gaps in care that you may experience in your local areas to share at committee meetings. I see that people are more active in this forum but I was hoping, along with BCNA, that we can transfer the activity to the private group, where people may feel more comfortable to be open with their posts/comments yet feel reassured that all posts remain private. If you are not yet a member, please consider joining. If you are a member, perhaps you would like to post your story under the Stories announcement.
COV-19 and shopping
Hello! I have stage 4 breast cancer with spinal mets. I am on Ribociclib (600mg)/Letrozole/Denosumab. I am currently self isolating as the medication means I am at risk. I just found out you can register for home deliveries from Woolworths as an at risk person. Here is the link to register: https://www.woolworths.com.au/shop/discover/priorityassistance? It says it will take 48 hours for them to contact me but I thought it might be handy if you are in a similar position to register early. Stay safe everyone! 😃
Metastatic de novo diagnosed 20 July
Hello, I was diagnosed on 20 July with grade 2 stage 4 De novo BC. As many of the ladies on this forum have mentioned regarding their own experiences , it’s been a wild roller coaster ride. The diagnosis of BC was confronting in itself, to find out it had already spread to my hip, well I was just gobsmacked. I’m 58 and keep very fit by running and going to the gym. I run around 40km per week and just couldn’t believe I had it in my hip. I’ve absolutely no pain, and ran in a 10km race the day before my diagnosis. Well, I could deny it all I wanted, the fact is, it’s in my hip. The next complete shock was to be told there is no cure. In the interval between the original BC diagnosis and the PET scan(which showed the hip lesion) I’d been reading and researching everything I could on the various treatments etc. and preparing myself mentally for surgery, chemo etc. to then be told that none of it was for me, as it’s metastatic, well that was just devastating. However, I’ve now received some good news. My health team has recommended an aggressive approach to treatment. Since the hip lesion is small and is the only evidence of BC outside of my breast, and I’m young (😂) and fit with no other health issues, they are going to try for cure by starting with hip replacement surgery and radiation, Two weeks post surgery I will start on Chemo for 5 - 6 months and will then undergo a mastectomy. It’s terrifying, but also gives me hope. It’s been 3 weeks now since diagnosis and I just want to get on with it. I see the orthopaedic surgeon on Monday and hopefully have surgery the following week. I’ve found the comments and discussions on this forum to be such a help, inspirational really, so a big thanks to everyone.
Inspiration from Nightbird
For those of you who need some inspiration. This link takes you to a segment of America's Got Talent where a beautiful 30 year old woman sings her own song about her MBC journey over the last 12 months. The song, her voice, and her attitude is truly beautiful and inspiring (although a little bit sad). https://youtu.be/CZJvBfoHDk0
Immunotherapy Atezolizumab (Tecentriq) Metastatic Triple Negative Experience
I just wanted to share my experiences with accessing the immunotherapy drug Atezolizumab (Tecentriq) that is currently not on the PBS (but hopefully will be soon!). In 2017 I was treated for TNBC stage 3 breast and lymph nodes, had 3 amazing years of good health, family and travel, then in March 2020 found an enlarged lymph node in my neck, same side as the BC. It took several ultrasounds (originally diagnosed as a vein) and then a biopsy to find out if was a small 1cm met tumor. I was referred to a trial at Peter Mac, but after testing (PDL1 Positive) found out the tumor was too small to qualify. Then referred to a different hospital for the same trial, waited 4 week for the tumor to grow only to find out the same thing, however was given the option of self funding through the private system. I had at each hospital ask about this, and somewhat annoyed that I was given a rough cost per treatment, not the compassionate deal that the pharmaceutical company was providing - $25K for 5 treatments, then no cost thereafter provide there is a response to treatment. Referred back to my original oncologist who completed all the paper work to the pharmaceutical company (Roche) and my private health insurance, who would be covering my private hospital day stay costs. I was waiting anxiously for my first treatment bill from Roche when my Oncologist called me to say my Private Health Insurance had agreed to pay the full costs (except the hospital excess) of the Tecentriq drug! Needless to say I was overwhelmed by both my private health insurance and my oncologist who completed all the paperwork. I've now had my first full round of treatment (3 weeks on, 1 week off) and can already feel changes in my neck. I don't know how long I will be on the drugs for, or how my body will react, but think it is important for others who may be in the same situation to know that if a drug is not yet available on the PBS, there still maybe ways of accessing it. Just as a side note, the trial I was referred to was stopped as it was using Tecentriq with Taxol and did not show any benefits to Taxol on its own. The previous trial to this for Tecentriq was with Abraxane which had shown a benefit - this is the combination I am on.
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.
Apparently ok to tell someone incorrectly they have stage IV cancer
Got the decision back from my complaint regarding my previous surgeon. For those of you that don’t know my previous surgeon told me the day after my mastectomy, and before receiving pathology results that I had stage IV cancer and was in the fight of my life (his exact words). I was sent away as a blubbering mess with a blubbering husband at my side for a CT scan which turned out to be clear along with the lymph nodes. I complained to the health commission as I thought this was totally unprofessional and caused so much stress to myself and hubby - what would of happened if one or both of us had decided to harm ourselves after this incorrect diagnosis!! Apparently him telling me this based on a pathology report (after partial mastectomy) that said lymphovascular invasion and swollen lymph nodes at the time of mastectomy (which can also be caused by inflammation and I had recently had 2 other surgeries) means it was ok for him to tell me this. They say him recommending for me to see an oncologist for chemo and radiation was fine. They seem to be missing the whole point of the incorrect grading prior to pathology results. Wait until you get confirmation. I wasn’t going to be starting chemo or radiation the next day so keep your mouth shut. I’ll never forget the horrified look on the nurses face when he told me this. I’ll also never forget that after that news was the first time I got on the forum - blubbering away whilst writing posts and getting support from you lovelies. I have sent sent his response to my oncologist for her review as she was confused by his referral letter which was still talking about stage 4 cancer, she had to request the slides so her pathologist could review them as the referral letter didn’t make sense. I’m also seeing my new surgeon in a couple of weeks and will get her thoughts. Im definitely going to be providing feedback to the commission and asking for a possible review!! Sorry for the early morning rant everyone. Tossed and turned all night thinking about this.
Exciting research showing possible 'on/off' switch for Mets
Exciting research being done on an 'on/off' switch for BC Mets - let's hope this one makes it thru the trial stages. Given this study has produced results from a mouse model, the timeline for introduction at the clinical level for *successfully* approved drugs and testing is closer to 12-15 years. It should be noted that fewer than 5-10% of drugs/tests actually make it successfully through this lengthy research process, which includes 3 phases of clinical trials. https://news.stanford.edu/2023/12/20/breast-cancer-metastasis-off-switch-revealed/
Are you using Kisqali?
Hi, I have an opportunity to talk to the manufacturers of the medication Kisqali. If you are using it, I’m wondering if there is anything about this drug that you would like me to pass on them? For example - was the information you received from your oncologist and in writing informative and easy to understand? Have you had any concerns you might have about taking this medication answered? Would it help to have a phone number or an email address in order to talk to a representative from the drug company? What about the side effects? I’d like the tablets to be smaller - a small thing but perhaps useful for others as well? What do you think? Is there anything else I can pass on to them? I’m very happy to hear all your suggestions, ideas and thoughts. Here is a wonderful opportunity for us, as users, to be proactive in getting the company to understand how this drug is effecting us and how they can further support us. I’m looking forward to your comments and suggestions so that I can have a bigger impact on the way the company works with its consumers. Debbie Packham