Newly diagnosed - Triple Negative - Chemo underway - Family history
Hi everyone, Well this is the group you really don't want to join, but it appears to be a great resource and source of support, so here goes. I was diagnosed with a triple negative tumour in my left breast on 9th May (grade 3), following a biopsy. I count myself lucky in that I have been part of a High Risk Breast Cancer Clinic at RNS Hospital since 2018, when I found I had the BRCA2 gene mutation. I have a strong family history of breast cancer, with my father having breast cancer at 64 and ultimately passing away at 68 from secondary cancers (way too early - he thought he could massage away the lump). His mother had breast cancer as well and my mother had ductal breast cancer in her 70's. So the annual mammograms, MRIs and ultrasounds since 2018 may have been a nuisance, but they picked up this cancer. I knew something was up when they did the mammogram and kept on calling me back into change again for another scan and then bringing forward the ultrasound appointment, where they did the biopsy. I am going to remember the call I received from the breast specialist's office saying that I needed to come and see the specialist "today" - no delay. I burst into tears and knew straightaway. I'm ahead of my parents in having been diagnosed at 59 - thinking of postponing my big family celebration weekend away in late July until after all this! Quickly into an oncologist and the treatment plan set up within a week. Because of the triple negative category, I'm starting with 6 months of chemo - first 3 months weekly sessions of Pembrolizumab ('the' new immunotherapy drug my oncologist says has only been approved in the last few months), Paclitaxel and Carboplatin - then 3 months of 3 weekly cycles of Pembro, Doxorubicin and Cyclophosphamide. Following that, they hope the tumour will have shrunk and they will then do surgery to remove the remainder - with the decision then on a lumpectomy or mastectomy. Radiation is a possibility after that. My twin sister (same genes of course) had a double mastectomy as soon as she found out we had the BRCA2 gene in 2018 and her initial reaction was to 'get them off' - but I'm following the treatment plan suggested - and I think a bit grateful I don't need to make that decision yet. I am down 2 weeks of chemo. The side effects I've experienced so far are the usual fatigue (have been trying to work in mornings, but I'm quickly realising that's even hard), inability to sleep the first few nights (the steroids I understand), yukky mouth sensation, slight nausea in morning with cooking smells, some slight rash spots on face - and the worst, the bloating/constipation (I won't share the details but I'm quickly realising I need to change up diet and liquids). I don't have any great questions just yet, but look forward to interacting with you all in the future and thank you in anticipation. Sorry for the essay. Kathy
Newly Diagnosed with TNBC
Hi everyone my name is Nique. I am 54yrs old and I was recently diagnosed with TNBC in December 2023 and I have had my first chemo and Immunotherapy on Friday Jan 12th. It is taking me a long time to process this information and sometimes I think it is surreal. My family has been really supportive throughout all of this especially my husband and one of my sister who herself went through her own journey with Breast Cancer (She had the Hormone positive). It is hard at the moment to say if the side effects are bad or not as I recently had COVID. Apart from the body ache (Which could be from COVID), everything taste metallic in my mouth and I do feel tired. I made the decision to cut my hair really short and then my husband will shave it off once it starts falling. For me cutting off my hair was a reality that this is real but it is still hard to digest at times. I am still working full time as I work remotely for an interstate company, but I Know that eventually I will need to decide whether to stay fulltime or part-time. My Chemo is every Thursday from my next session and I was lucky to have my sister there with me during my first one, unfortunately she is here on holidays and will be returning back to Dubai. I honestly don't know what I would have doe if she wasn't with me. She was there in the doctors office when I got the news and as I was in shock she took over and asked all the questions. Her and my husband have been with me to all my appointments, apart from being my support person she was also my husband's support person and for my kids. I honestly don't know how I am going to go through Chemo without her being there. Thank you for listening to me.
Triple Negative diagnosis - Mindset challenges
Moderator moved @Andrea_S post from activity section to the main discussion forum: Hi everyone! My name is Andrea. I got diagnosed late November with TNBC, and I’m 6 weeks into chemo and immunotherapy. I’m 47 with two kids - 15 & 13. My side effects haven’t been too bad so far. Lost my hair and taste. My biggest hurdle is my own mindset especially when I have to go in for a long treatment. At this rate I go every Monday for differing hours but I really really dread having to lie there for hours. Music is the only thing that’s seems to help. Plus some meds to help me sleep a little worked. Thanks for letting me share. I look forward to hearing what others are going through. ❤️
Has anyone looked into Car T Cell Therapy Immunotherapy for Advanced/Stage 4 cancer?
Anything that lessens the time in the production of Car T therapy that can assist patients hopefully achieve remission ... particularly as time is of the essence as they deteriorate quickly upon harvesting .... CAR T cell therapy is a type of immunotherapy used to fight cancer with a patient’s own altered immune cells. T cells are taken from a patient’s blood and changed in the lab by adding a gene for a receptor (called a chimeric antigen receptor or CAR). The CAR T cells are then infused back into a patient to find, bind to, and destroy cancer cells. Read more here: Promising laboratory and early clinical results led to a phase I clinical trial involving patients with mesothelioma and pleural metastases from lung or breast cancer. https://www.medpagetoday.com/meetingcoverage/asco/80318?xid=nl_mpt_DHE_2019-06-08&eun=g1307935d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%202019-06-08&utm_term=NL_Daily_DHE_Active&fbclid=IwAR307MNn5WT72SGVu-TNlyXVJ_RujQxE5T9XhWg4Sapi9LN1_pfhgaL8hvU US Company is Reducing the time to 24hr 'turnaround' .... https://www.pennmedicine.org/news/news-releases/2022/march/penn-researchers-shorten-manufacturing-time-for-car-t-cell-therapy?fbclid=IwAR3DAdNzbXHyvdpnRfRf6QEXdIqhjt2_X-f34oGgehdlNJRK3aGknI2VI94 Australian Trials: https://www.petermac.org/services/treatment/haematological-treatments/cellular-therapies-program/car-t/car-t-cell-clinicalBreast cancer treatment researcher awarded Prime Minister’s Prize for Science
The Peter MacCallum Cancer Centre’s Professor Sherene Loi has been awarded a Prime Minister’s Prize for Science for her research into innovative treatments to improve the survival of breast cancer patients. Click on the below link for the full coverage: https://www.skynews.com.au/lifestyle/health/breast-cancer-treatment-researcher-awarded-prime-ministers-prize-for-science/video/988424ceb2b4596fd15ac51d67584962
