đź©şLeaN On Program: reducing the risk of lymphoedema
LeaN On - a research initiative led by Professor Bogda Koczwara and developed by Flinders University in partnership with BCNA, was developed in response to a long‑standing gap in survivorship care. Lymphoedema is a chronic condition affecting the arm or hand that can develop weeks, months or even years after breast cancer treatment, yet many people report receiving little guidance about early warning signs, risk reduction or when to seek support. LeaN On is an evidence‑based digital platform designed to support people who are living with, or concerned about, lymphoedema after breast cancer. The platform guides users through a simple 12‑step online journey, with each step offering small, manageable and practical information to help people: understand what lymphoedema is recognise early signs and symptoms take actions now to reduce risk know when and how to seek professional support The platform is currently being trialed through a research study, evaluating how lymphoedema support can be delivered online, including both self‑directed and nurse‑supported options. Its online design allows people to access guidance regardless of where they live, including in regional and rural areas where access to specialist care can be limited. Consumer perspectives have been embedded throughout the project. Participants for co‑design activities were recruited through the Review and Survey Group, and BCNA supported the research by appointing a trained Consumer Representative to the project team. This ensured lived experience informed both the development of the platform and the research approach. Both the platform and the study underpinning its development have now been published, and people affected by breast cancer are invited to trial LeaN On by contacting info@mylean.online Learn more about the LeaN On project: BCNA overview article Flinders University article and trial information Published studyTrials
I heard this segment on ABC Nightlife last night. It's always interesting to learn about clinical trials and achievements. A caller brought up Tamoxifen Listen to the lady from Adelaide.....what an inspiration "What is a clinical trial? - Nightlife - ABC Radio" https://www.abc.net.au/radio/programs/nightlife/clinical-trials/13460910
First dose Palbociclib down the hatch... Pallas trial
For those who have an interest in clinical trials or the drug Palbociclib... The Pallas trial follows early er+ bc ladies at high risk of recurrance. The drug, Palbociclib, is given alongside hormone drugs for 2 years to one group, whilst the other has just hormone drugs alone to see how well Palbociclib is tollerated and if it can help prevent recurrance. So, just when I thought I'd done all I could to keep my cancer from returning, I was invited to participate in the trial. There are some possible unpleasant side effects from the drug, so not an easy choice. I got randomised to the drug group, and away we go with the trial that I was soooo hesitant to join. After a lot of fumbling around to get the right blood tests through the lab, and several hours waiting around for results, I got the go ahead. First dose taken this evening and so far so good. Hoping not to wake up shitting or spewing. I was feeling fairly guilty about getting this drug on the trial, as I know there are stage 4 gals out there desperately wanting access to this wonder drug, which is not on the pbs and thousands a month. My treating team were able to reassure me, though, that the more research etc is done, the better the chances of Palbo getting on the pbs. I hope in some small kind of way my participation aids bc treatment for future patients. We all know how important research is and has been at giving us hopeful futures.
Sexual Wellbeing After Breast cancer (SWAB) study
i everyone, Just in case you're in Melbourne and interested in this study - I've heard about this a couple of times on the radio. "The aim of this study is to assess the effectiveness of the hormone testosterone used intravaginally on the symptoms of vaginal dryness, itch or pain affecting sexual wellbeing in women with breast cancer on aromatase inhibitor (AI) therapy. Current guidelines recommend that women with hormone receptor positive breast cancer who are postmenopausal at diagnosis are treated with an AI either initially or after 2 to 3 years of tamoxifen, for at least 5 years." You can find out more details on their website: http://www.med.monash.edu.au/sphpm/womenshealth/current-research/swab-study.html?_ga=1.196887276.1126249470.1487720646 Nikki x
Clinical Trial
Hi Everyone, Im currently taking oral chemotherapy due to more bony mets. Thank goodness it hasn't spread elsewhere. My tumour count flew up to 232, having not gone down since October last year, very frustrating. My oncologist has referred me yo Peter McCallum hospital and I'm due to hear from a doctor this week to discuss what is available for me. Does anyone have advice about what is involved with a clinical trial? It would be fantastic if someone has experience, or is involved in a trial. Cuddles, Trace
More details of trial .It will run for a year Help!!!!!!!
Feeling devastated today and I received details of trial. One year.... six months weekly then monthly for six months. I will have to travel to Peter Mac Parkville. All drugs have side effects this one not too bad. My husband is over it wants a break for me. As I am triple negative I cant take any drugs. So what am I complaining about when others have to take drugs for five years plus. I am probably venting my sheer frustration at not being able to leave hospitals and doctors behind. Thanks @Primek who mentioned a positive experience for her sister. I cannot say no as I will feel guilty if I do. I have a chance to reduce my chances of cancer reoccurring I know I should take it . Another year of being a patient........I was looking forward to being normal ..long holiday...climbing Mt Everest (not really).Has anyone been on a trial ?
I have been offered to go on a trial for a new drug. I will be going tomorrow. Part of me is saying hey this is good finding more cures for cancer. The other part of me is saying noooo no more blood tests checks mirs etc. I try to pretend cancer never happened to me. Well guess what it did. I feel if I can help anyone and even myself beat this disease I should. The other part of me wants to be left alone and just enjoy life. After a full year of treatment no more. Guess I will do the trial.
