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/Things that Francis R. Croken wished he'd been told when diagnosed ...
I've copied the 'sources' at the bottom - but I thought you may like to read it below in one piece: Part 1 Cancer - things they don’t tell you about, at diagnosis …. Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well, might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won’t help your recovery. Fighting for anyone to stick with you won’t cure you. Those who can, will. You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out of fuel. Your body will change first and your mind will follow. You won’t lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it. You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You’ll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it ‘chemo brain’ for a reason. You will feel 'normal', eventually. Just a new kind of normal. When you feel afraid, let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologise for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand. The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don’t understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You’ll cry together too. Then you’ll get to a place where you will just live in the world again together and that is when you know that you have beaten this. The sooner you recognise that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don’t look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won’t have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won’t die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive. Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn’t be a game played on anyone’s terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money, or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won’t do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don’t have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that you will inspire others. Part Two: You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren't so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world -- strengths and vulnerabilities and everything between. Be that person forever. You will inspire others. It will feel weird. People you haven't spoken to since grade school will be in touch. Ex-girlfriends, former colleagues... even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realise that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100 percent investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking. When you get to the other side you won't believe it. Some will chose not to believe you have terminal end stage cancer and they will tell you the disease is gone or in remission due to your appearance and attitude. This is not true, so let them rejoice and return back to their lives-- just let them go. You'll constantly wonder when it will take you-- it will. Slowly this feeling will fade, but end stage cancer will always be a part of you and will eventually take you away. It will define how you see the world moving forward. You're going to feel like the future is a funny thing to think about because it is now limited and the present is going to suddenly seem so incredibly important. Keep moving. You'll be more productive. You'll understand who truly loves you, because they will still be there. You'll want to meet new people that connect to the newly evolved version of your old self. You'll want to let go of those that don't "get" who you are now, let them go. You'll feel a little guilty doing it. Then, you'll move on. You don't have time to waste. The greatest gift you've been given is that you now understand that, and you're going to make the most of every second. You're going to be the most passionate person you know going forward. Translate that passion to a greater purpose. Be fearless again. Leave the world a better place by putting your experience to good use for others to reference. Then, one day you will realise that you have reached the other side of cancer. Now, it is on your terms. Fight, Fight, Fight. Of course you are going to fight your cancer with every grain of your being. But, that may not be the only fight. You will have to fight to control your life and live the way you wish to live. Your family and friends will want to talk every day about your cancer, your test results, your pain. They will act in such a way that will seem like pity and offer patronising comments. Forgive them. This does not help you, as this forces you to face cancer every day, rather than on your schedule and on your terms. You must let them know that such comments do not help. I limited my family and friends to one day a week to inquire about my cancer, the other six days I placed it in the back of my mind. I found this very therapeutic. Those who love you will understand. Live your life on your terms, not theirs. Will the drugs and chemotherapy change my personality ? Only if you allow it. There is no cancer of the soul. Be fearless. You have faced it down. Let your spirit soar. With much love, appreciation, and affection to the staffs of the Melrose-Wakefield Hospital, Beth Israel Hospital, Melrose Medical and Surgical Associates, and Commonwealth Haematology and Oncology for their remarkable care and compassion. Born and raised in Malden, Francis R. Croken is a stage 4 cancer patient who is writing a journal with the intent that it will assist others in need of direction and hope. This is an excerpt from that journal. Francis was born and raised in Malden until High School. He attended Saugus High School and Salem State College. After joining the Peace Corps he attended graduate school and enjoyed a 25-year career in hospitality and event management. He was diagnosed with stage 4 incurable cancer at the age of 54, which spread to several other organs with little or no pre-diagnosis symptoms and was given a short life expectancy. After diagnosis he retired and now devotes his time to travel, writing, volunteer service, and giving. He underwent a clinical study chemotherapy regimen after extensive surgeries to remove some of the cancer. Francis R. Croken passed away in Feb 2015. Part 1 https://www.wickedlocal.com/story/herald-citizen/2013/07/06/cancer-things-i-wish-i/39458131007/ Part 2 https://www.wickedlocal.com/story/herald-citizen/2013/07/28/cancer-things-i-wish-i/39441997007/
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.
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.
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.
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.
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! 😃
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
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.