🗣️ Share your views: Finding My Way Advanced+
Finding My Way-Advanced was one of the first self-guided web-based programs designed to improve wellbeing for people with metastatic breast cancer. Flinders University are now seeking participants to take part in Finding My Way-Advanced+, which aims to test whether adding human support and/or guidance to Finding My Way-Advanced, improves how much people use, and benefit from, the program. The aim is to find out whether guidance improves engagement with the program and outcomes, such as quality of life and distress, and if this differs by whether people received guidance via email, phone-call, or video-call. Recruitment is open for 12 months, with the closing date expected to be mid-2026. You can particpate in this program if you are a person who has been diagnosed with metastatic breast cancer. If you are interested, simply complete the following baseline survey and the researchers will be in contact with you shortly; https://redcap.link/findingmywayadvancedplus.
Video re Mets BC .... EVERYONE needs to watch it
My sister just shared this video on Facebook - this video went viral in 2015 in the USA and around the world, currently with 54,000,000+ views on Facebook alone. Holley Kitchen passed away in January, 2016, from Mets BC, age 43. 30% of those diagnosed with 'early, treatable, non spread' BC who have been told there is NED (No Evidence of Disease) will go on to be diagnosed with Metastatic BC - whether they have had their breasts removed or not. Most with BC are not made aware of this possibility in consultations with their surgeon or Oncs - but you NEED TO KNOW - so that if you DO GET unexplained ACHES & PAINS in the coming years - GET CHECKED OUT! It COULD be an indication of a problem. https://www.youtube.com/watch?v=QDQ0FjP7J-c And her follow up video a few weeks later - a 40% increase in awareness of Mets BC due to her earlier video. https://www.youtube.com/watch?v=63yTZxj7FOk An interview with Holley Kitchen re Mets BC https://www.youtube.com/watch?v=ijN11LLteTw There needs to be more research into Mets BC - to be able to identify it earlier & treat it better.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
New Study for Stage 4
I was really heartened to read about this study in the metastatic area of breast cancer. "Stage Four Needs More" is a phrase I've heard a lot and I know several members here have voiced concerns about the number of studies being done. Hope it's of interest. K xox https://nbcf.org.au/research/our-research/search-our-research/can-exercise-and-diet-help-women-with-metastatic-breast-cancer/
PIKNIC clinical trial
I was diagnosed with metastatic breast cancer in 2016. I've tried a few different chemos in that time. The latest was Eribulin. All the scans show the cancer is stable but my tumour markers have been rising. I've tolerated the chemo well up until the last 6 weeks where I have been getting almost daily headaches & numerous migraines. So when I saw my oncologist recently he suggested I take a break from the Eribulin for a month which I agreed to. He also asked me if I wanted to be part of a clinical trial. It is called PIKNIC & being run out of Peter Mac in Melbourne. It is a drug you take orally every day. I saw the clinical trial doctor last Friday to get more information. She said the major side effects of this new drug was diabetes. This really concerns me. Is anyone on this site on this trial or know someone on it? What has been your experience? What are the side effects for you? ThanksResearch
Today I have been in touch with a friend who is the director of a research institute. I asked him about funding for metastatic breast cancer: if there was 30% of research devoted to metastatic breast cancer. He was non commital. He did however tell me that 2 oncologists associated with his institute were doing research into metastatic breast cancer. I checked on his institute's web page and there were at least 9 people researching breast cancer. It is a bit frustrating that this is the case.
Immuniotheraphy - my last resort!
I have just begun an Immuniotheraphy drug (Keytruda) for mTNBC as I have hit the final wall without success after my beginning in July 2104. I have been on several chemos & I was on a targeted trial for TNBC last year and early this year that looked promising, but after 8 months the cancer has again spread this time to my lungs. I'm interested in contacting anyone that has trialed or is using an Immuniotheraphy drug.
Why do some breast cancers come back?
Recently, several EMPathy Breast Cancer Network researchers collaborated to produce an article that was published by 'The Conversation'. The article is entitled, 'Explainer: why do some breast cancers come back?' The article link is below, and as the BCNA Consumer Representative for the EMPathy BCN I'd be interested in your thoughts ... https://theconversation.com/explainer-why-do-some-breast-cancers-come-back-40547 Background Funded by the National Breast Cancer Foundation (NBCF) the EMPathy BCN is a national collaboration of scientists, surgeons, medical oncologists and a BCNA consumer representative (advocate) investigating the role of epithelial mesenchymal plasticity (EMP) in breast cancer recurrence. I am the BCNA consumer representative volunteer and have spent many days over the last few years working with this extraordinary team of researchers who are investigating why some breast cancers come back as secondary (advanced, metastatic) breast cancer in the bones and organs. At a recent meeting we discussed the need for articles to be published that are reader-friendly and not too heavy on the scientific explanations. Like many others diagnosed with breast cancer, I don't have a science background, but I do want to read articles I can understand. For more information about the EMPathy Breast Cancer Network, a link to the website is below. Thanks for reading. http://www.empathybcn.org/EMPathyStructure.html
