TDM1 - what to expect
Hi, Am post neoadjjuvant therapy, mastectomy and ALND for 2 separate tumours, one HER2+ and the other HER2-, both estrogen and progesterone positive. 1 lymph node positive. I had near complete response to treatment (<1%) and a tiny mass still in the lymph node. Recommendation is to switch from Herceptin to TDM1. I see the oncologist on Monday for further information and to start this new drug. Any experience with side effects and what to expect would be appreciated. Although I know they do this for any residual disease, there was so little that you do start to question the need. So would appreciate both good and bad view just to get myself prepared. On another note, my breast surgeon discussed CTK4/6 with an AI. This was not even on my radar. I will find out more on Monday but very curious and like to have knowledge to make the best choices. Love to hear from anyone who has experience in these treatments. Best wishes to you all.51Views0likes2CommentsSubsidy for Verzenio (abemaciclib) expanded on the PBS
Hi everyone, I thought some of you may be interested to read about the recent expansion of the Pharmaceutical Benefits Scheme (PBS) listing of Verzenio (abemaciclib) to include its use in combination with Faslodex (fulvestrant). You can read the full details on the BCNA website link below: https://www.bcna.org.au/news/2021/10/subsidy-for-verzenio-abemaciclib-expanded-on-the-pbs/ We recommend talking to your treatment team if you have any questions about abemaciclib or fulvestrant. (This has also been posted in private group 'Living with metastatic breast cancer')41Views0likes0CommentsNew trial
The technology that created the Oxford-AstraZeneca vaccine is being used to develop a jab that could help treat cancer. Scientists from the University of Oxford and the Ludwig Institute for Cancer Research have developed a two-dose vaccine which they believe can target tumours in humans. When tested on mice, the jab increased the levels of anti-tumour CD8+T cells which attack the growths, greater reducing its size and increasing survival rates. It also resulted in an enhanced response to anti-PD-1 immunotherapy - turning a person’s own immune system against a tumour - which is often ineffective as some patients have low levels of the T-cells required. The team created the cancer vaccine with two different prime and boost viral vectors, one of which was used in the development of the Covid jab. To ensure the new vaccine targeted cancer cells specifically, it was designed to seek out too MAGE-type proteins that are present on the surface of the cells. The first human clinical trial will take place later this year, with the jab being trialled on 80 patients with non-small cell lung cancer. Benoit Van den Eynde, of the Ludwig Institute for Cancer Research, said: “We knew from our previous research that MAGE-type proteins act like red flags on the surface of cancer cells to attract immune cells that destroy tumours. “MAGE proteins have an advantage over other cancer antigens as vaccine targets since they are present on a wide range of tumour types. This broadens the potential benefit of this approach to people with many different types of cancer. “Importantly for target specificity, MAGE-type antigens are not present on the surface of normal tissues, which reduces the risk of side-effects caused by the immune system attacking healthy cells.”52Views7likes3CommentsTERRIFIED of Treatment
I’m not sure I can convey in writing how terrified I am I’m not sure there is a word to describe it the worry I feel is debilitating, I already suffer from anxiety and this is just exasperating it, i was diagnosed about a month ago and have had a Lumpectomy with good results margins were clear and lymph nodes were clear, my cancer is triple negative and they are still wanting me to have chemo and radiation. The plan is 12 weekly doses of chemo then about 15-20 treatments of radiation along with Herceptin every 3 weeks for a year. I am supposed to go to Hospital on Tuesday for Echocardiogram, Port Insertion and my first chemo. Everday for the last two weeks I have woken up at 6am in what I think is a panic attack I have tingles all over my body and shaking and I don’t want to get out of bed I’m at a point where I don’t think I’m going to be able to get myself to the hospital on Tuesday, and on top of all this I live in Melbourne so we have COVID to deal with which means no one can come to hospital with me I have to do this alone. I am terrified of having the port put in and the thought of it being in my body for so long is terrifying to me I am also completely terrified of the chemo and all the worry it will cause me between treatments having to monitor temperature etc etc will be so stressful for me. I have tried conveying this to various people (Doctors, Family, Psycologist) and all they say is you have to do this and take one step at a time, I feel like no one is really grasping how terrified I am and no one is helping me with the mental side of this, am I the only one that feels this way please HELP me as I don’t think I can mentally survive this and am seriously considering not going on Tuesday.1.1KViews0likes49CommentsTreatment decisions
Hi everyone! I was diagnosed with early stage, grade 3, ER/PR+ breast cancer in early April shortly after my 28th birthday. I had a lumpectomy early May and it came back with clear margins and clear lymph nodes (but not without a good infection and some extra fun in hospital!) I'm currently in consult with my team on my next stage of treatment. Radiation is a given and I'm yet to see my medical oncologist but chemotherapy seems to be highly recommended for me but ultimately it's a decision I must make myself. I'd love to hear other people's decision making processes in a situation like this and the reasons why you may or may not have gone down that route? Stay strong x151Views1like10CommentsDexamethasone
Who’da thought? Good old dexa may be one of the first effective treatments for those seriously affected by COVID-19. I was one of those who jettisoned the steroids after some obligatory dosing with A/C, as I had no nausea and dexamethasone with Taxol wrecked my carefully honed anti-constipation regime! Delighted to know it may also be useful in the fight against the virus. Possibly the only good thing about a pandemic is we will make all sorts of medical discoveries.201Views5likes10CommentsOintments/Treatments for Mastectomy scar healing
Hi there, This is my first post, although I have read many different discussions. Thank you to all of you women who have gone before me on this journey and given such valuable, important advice, tips and tricks. To those women who have posted their photos, thank you for being so courageous and vulnerable, such big hearts, all of you. I will one day soon post mine to contribute to the collective, in the hope to help other women who come after me. I had my bilateral mastectomy on 6 May (now 3 weeks post), and am looking for your wisdom on ointments or treatments for scar healing. When did you start applying it? Thank you once again, Meghan x131Views0likes12CommentsOut of pocket in the private
Hi lovely ladies, I am wondering if you have any insight. I had a mastectomy last week and of course got charges from my surgeon and surgical nurse assistant (first time I have heard one). I am wondering if you dont mind me asking how much out of pocket you were charged?192Views0likes13CommentsUncertainty
Hello everyone, I have just joined this incredible network as I only just learnt it existed. I was diagnosed end of Oct 2019 with invasive ductal carcinoma, estrogen and progesterone receptor positive, grade 3. I had my strategy informed by my surgeon sorted, that I would complete the 5 month chemo and then have the breast conservation surgery followed by radiation treatment. I was fine and mentally strong progressing through the chemo treatment because I just needed to focus on the here and now and then after all this life would return to normal. Now I have finished the chemo treatment and my surgery is planned for next week and all of a sudden I am second guessing my surgery options. This is in addition to the news that I had recently received that my father has been diagnosed with terminal cancer. All of a sudden I feel nervous and thinking about reoccurrence, what’s in my control, is there a way I can minimise future risk, should I be having a mastectomy instead? I have spoken to my doctors and they say that my strategy is good for partial mastectomy /lumpectomy but ultimately it is my decision. I have a young family and alongside the covid 19 issue happening, could I revisit the full mastectomy later... Has anyone else also experienced this choice, nervousness before surgery and how did you decide? Very grateful for your time and advice.271Views0likes15Comments