Creative Corner!
CREATIVE CORNER: Because art is good for you Inspire and be inspired Creative Corner group is gone but that doesn't mean we should mute that creativity! Time to get inspired by each other. This thread is just for fun and expression, be it craft or drawing or photography, from a snap of your colouring-in to your take on a Degas painting, a wild exploration of your soul or just a stick figure you drew on the bus, you can share it here. Your work as well as your tips, tricks, tutorials, tasks, fun little DIY's, and anything that fuels your creative side are all welcome! Bookmark this thread (click the little star at the top right) to find it easily.
Help test a new online database that shows interactions between cancer medicines, herbs & vitamins
Hi all, Researchers at Satori Medicine, an independent consulting group, in collaboration with an Expert Committee comprising of consumer representatives, including consumer representatives from Breast Cancer Network Australia, health professionals and other researchers are conducting a study to test, evaluate and report on the usefulness of IMgateway, which is an evidence-based database that has already been utilised by doctors and pharmacists for 18 years. The database provides information about interactions between pharmaceutical drugs and complementary medicines. The researchers are working to adapt the database so that it is directly available to consumers including Australians diagnosed with cancer. They are inviting you to test the suitability of this adapted database for consumer use and provide feedback about its usefulness. The researchers will collate and analyse the results from the information you provide and prepare a published report. About the IMgateway database The adapted database will allow people affected by cancer to enter the name of a pharmaceutical drug or a complementary medicine (e.g. a herb, vitamin, mineral or food) and receive information about potential interactions that may interfere with the effectiveness of the drug. For example, if you are taking an aromatase inhibitor and considering whether or not to take vitamin D, by using the database you can find information about whether or not vitamin D may interfere with the effectiveness of the aromatase inhibitor. Who can participate? You can participate in this study if you: have been diagnosed with breast cancer, or are a carer are comfortable reading and writing in English. What does the study involve? The survey will take approximately 15 to 20 minutes to complete and your responses will be confidential. You will be asked to complete an online survey. The survey includes several general questions, such as: Whether or not you use (or have used) a complementary medicine. Where you would go for information about complementary medicines (e.g. your doctor, friends, online, family). Whether you are concerned about possible interactions between cancer medicines and complementary medicines. You will then be presented with a short, fictional scenario of a patient who is taking two pharmaceutical drugs and is considering taking two specified complementary medicines. You will be asked to use the online IMgateway database to see whether there are any interactions between the drugs and the complementary medicines. You will also be asked to provide feedback about the database and how easy it was to complete the task. How do I take part? If you are interested in taking part in the survey, please click the following link which provides a Participant Information Form providing details about the study: https://www.bcna.org.au/media/7146/participant-information-form_10-feb-2019-final.pdf. Once you have read the Participant Information Form and you consent to take part in the survey, then click the Survey link below. Please take the survey by 27 February 2019 on a computer and not on a phone or tablet. Survey Link By clicking this link you are indicating that you have read the Participant Information Form and consent to take part in the survey: https://www.surveymonkey.com/r/6D3SDKT. Privacy Your name and any other identifying information is not asked for in the questionnaire. The data collected will be reported as aggregated data. Any quotes used from answers given to any of the questions will not be able to identify any individual. By taking this survey you are providing your consent (agreement) for the researchers to collect and store your answers on Survey Monkey’s overseas server (large computer). For further information on BCNA’s Privacy Statement please click here. For a copy of SurveyMonkey’s Privacy Statement please click here. Thanks so much for considering this opportunity!
Micropapillary
Hello everyone, I was diagnosed with invasive micropapillary breast cancer 2 weeks ago. I only had an 8 mm tumour but unfortunately 1.5mm micrometastisis was found in my sentinal node. I had a bilateral mastectomy and the offending node removed. In the UK 1.5 mm micrometastisis is regarded as a nil read and no further treatment necessary. I have been told here because it’s a rare cancer (micropapillary) I must have chemo and radiotherapy. I am in a dilemma as I feel as if I am being rail roaded in the medical machine. I know the doctors are good people. But I just think the treatment is so harsh. I am scared of the long term side effects of chemo and radiation as I am a natural health rep and in my industry have had many negative opinions of this and the big Pharma machine. That said I want to live and don’t trust naturopaths either as unsure if there is enough evidence to put my life in their hands. My head is about to explode! I’ve always led a healthy lifestyle and feel a loser if I talk the talk and don’t walk the walk. Has anyone out there had micropapillary and cured it naturally? Im dreading Chemo side effects
Herbs , vitamins and minerals
Was reading an article today which mentioned Memorial Sloan Kettering Cancer Centre site so thought I’d put the web address up again as many of us like to try complementary therapies. Thankyou to the people who told me about this site as I have found it both interesting and useful on several occasions but that said always check with your medical team as well. Here it is www.mskcc.org/cancer-care/patient-education/herbal-remedies-and-treatment It details how a complementary therapy works , what it’s benefits/side effects are and also what medicines they conflict with.Well worth a look.
Stable - schmable...
Hi pink ladies, Clinic today - basically the disease is stable - schmable. I'm pretty down about it. I have had all of my hopes pinned on remission. It is unlikely that this will happen. So I have to get my head in the space that stable is a good result. The CT cannot tell what is active and what is scar tissue but basically since I started my weekly treatment 19 weeks ago, the lung mets have barely changed and none of them are gone - yes they are small but they are very numerous and even the tiny ones are still there. The axilla node is 50% reduced in size and the skin met is about 50% smaller too. I still wonder if the lung "things" are actually mets - especially as they do not seem to be reducing but am not willing to have the invasive surgery to biopsy them. We just have to assume that they are as the skin met was positive. So I keep going on the treatment as so far nothing is growing and that is a good thing. I've decided that I need to take a break from the cancer world a little - disengage from it as much as I can despite having advanced cancer and weekly treatment. I need to get on with life. I don't want to talk about cancer anymore, I don't want to read about cancer anymore (hell I don't even want to have it anymore - can anyone arrange that?). I am getting back into exercise - yoga, pilates and bike riding; back into my photography; very into xmas and new year and life with my beautiful little family while I feel extremely well. Who knows - miracles happen - so one might just happen to me - but it is not worth sitting around waiting - I just have get on with living. Love and light to all of you. You are angels. Amanda xx
Acupuncture study at Chris O’Brien Lifehouse
For ex-patients who have been treated for breast cancer at Chris O’Brien Lifehouse in Sydney; they are recruiting people who completed the cancer treatment but still experience pain, fatigue , sleep disturbance and/or numbness / tingling to participate in an acupuncture study that will run for 6 weeks from mid August to September. Free of charge. At the Living Room (for info [email protected])
First time blogger
I am new to blogging but have finally calmed myself down enough to decide to try writing as additional therapy. My story is all over the place like my emotions. I had a miscarriage around 1999 and the gyno said to get a breast check done as they can start nasty things happening in women my age. I did get a check a year after as advised and they said you are so lumpy you will never feel a small lump so you should have annual breast screens as well. OK. No worries. Back in 2001 in August I found a lump. I only noticed a week before that one boob seemed bigger but then one always is. I put it down to the poor eating and biscuit munching. My GP didn't think the lump would be anything but I should get it checked anyway. I went to the breast clinic and had xray and ultrasound. Then fine needle biopsy and then core biopsy. Then ultimate diagnosis. You have cancer and need a mastectomy. Not only one pea sized lump but basically the entire right breast. How can a girl not know that? How could I not have felt that? How did I miss the changes? Seriously how is that possible? I know I am lumpy but truely couldn't I have felt that? I was diagnosed with invasive breast cancer and self flaggellation did not help. So I got a grip. Drove home and told my husband. OMG that is a surreal time. I almost felt that if I told enough people then maybe I would have to apologise later because I was wrong. Nope, That didn't happen. My GP on the Friday managed to get me an appointment with a specialist surgeon on the Monday. From meeting my surgeon to mastectomy was only 2 days Surgery was on the Wednesday...testing and results all through so quickly and he visited often...fabulous man and still is to this day. He takes me seriously and offers frank advice but understands how it impacts on family and is caring too. My tests showed that I was ER positive and HER2 positive...double whammy. 4 out of 14 lymph nodes showed cancer cells so everything was taken all lymp nodes up to my collar and right down to my chest wall to ensure clear margins.. You can see my ribs! (it has been a long time since that was possible haha.) Damn. Why me? What did I do wrong? If only... ! All those terrible emotions and feelings and more churning in turmoil inside. Devastation to my husband and my sister and her family. It really is a family diagnosis. I blamed myself for lack of diligence but then was reminded that even the GP didn't realise I had such a big tumour. The specialist likened it to a field of flowers suddenly blooming and it just took over. Not much consolaton but then we have to look forward not back. Only the future is able to be changed. My daughter was about 6 and son only 4 - I thought I wouldn't see them finish primary let alone leave high school or go to Uni. After surgery I had chemo (FAC) and radiation. Chemo was hard initially but after we discovered I can't have maxolon or codeine things swiftly improved. I lost my hair and bought a wig. I personally don't do bald anywhere near as well as Sinead O'Connor and I look like a crazy hippy 60's child in scarves. So hats and wig were my choice. Radiation was a breeze by comparison. My treatment finished just before my 40th birthday and I was given a surprise party... all my Sydney family travelled to Brisbane to celebrate with me....even Grandma who didn't fly for anyone. I went on hormone therapy - Tomoxifen and tolerated it quite well. I actually didn't realise it made me feel sub-standard until I went off it and on another drug and felt a lot better...amazing how you can adapt. I believe I was on Bonefos about now too. Things are a little hazy now because it was a long time ago the actual dates etc really don't matter as so much has gone on since. Way more time than I thought I had considering my type of cancer. I had regular scans and one such scan about 5 years later showed a lesion of about a golf ball size on my right sacroiliac joint area. The Dr asked if I'd had any falls lately. Well, I had been doing ice skating lessons and was up to jumps and spins and so have had some terrific spills. He sent me for an MRI to see if it was consistent with my falls.... alas it was not. It looked moth eaten and that I' m told is how cancer can make the bone look. No more skating and off for radiation. Change of drug to Femara to see if that would continue to hold things at bay. That was the only spot for a while but they continue to appear. On my right hip and treated with radiation. In 2008 when I finished radiation and changed to another Hormone drug... Aromasin? I travelled to the US for a family wedding and came back feeling on top of the world. Full of energy. I had about 1.5 years of no problems you almost forget about having a chronic disease then damn it you are reminded. Another routine scan showed that more spots had appeared in my hip socket. The story repeated many months later like ground hog day and in 2012 we found another spot on the pelvis (the bony bit you sit on) and on my spine at T7. More radiation right around my 50th celebrations in April. Ten years....wow time had marched on. I was surrounded again by family and friends and the people who I can turn to and who have been with me both before cancer and during. What a lovely celebration at my niece's soon to be opened restaurant. We were their first proper function. We decided to go off all meds except Bonefos and see how I travelled. I wasn't that keen on the idea initially but thought well, maybe it will be the decider. I didnt feel better or worse being off the drug just one less tablet to take. In Sept/Oct I went to the movies and tripped over my husband's foot. I fell into my seat and heard a pop! Well, that can't be good. OMG I couldn't move, couldn't take a deep breath. I stayed still and braced myself in the chair. I whispered "I have hurt my back and can't move - just so you know". I am sure my husband had no idea just how much pain I was in but he sure got the message after the movie. Nearly called an ambo to get me out of the cinema - but my pride wouldn't allow it. Days later and physio and Drs visits I was a lot better. Possible broken rib but didn't show up on scan. How could such a nothing event turn into 2 weeks of hell? Oh well. Life kept ticking along. Shortly after I had my annual breast clinic appointment and Dr visit and told him I still didn't feel right. He ordered a body scan which came back clear. Thank goodness for that. And as I had no bone pain we left it until my scheduled New Year bone scan. My body continued to heal from the injury and I was determined to get fit again. I tried valiently but was so exhausted from walking just 20-30 mins on the treadmill on the flat. I even went to the Dr and had bloods and ECG I felt so worried. The only marker in the bloods was elevated calcium....ahhhhh alarm bells ringing in my head. My daughter graduated from high school and applied for Uni. My son was about to start in Year 11....not my little babies any more. I never thought I'd make it this far.I also had such a stiff neck I went to physio again but it only relieved my neck slightly. So, along comes Jan 2013 and I had the scheduled bone scan. I watch the screen as the bone scan progressed down my body...I lit up like a Cristmas tree! Damn again. Not good. Holy guacamole it is in my skull and neck and in more places in my spine and in my sternum. When do I start freaking out? Is now a good time? The visit to my Dr was as expected. He had put me on notice a year ago that he thought the cancer was on the move and that our next progressive step would probably be chemo again and he recommened it this time. The cancer is definitely on the move and we need to stop it as best we can. I have to say though, he knew I was not feeling happy with the interference that chemo can make in your life and he gave me other options to try first if I wasn't ready. I like that he gives me choice. I knew his preferred option but also that if I chose not to take that path then he would support me in any choice I made. In the end, after lots of research, soul searching, talking with a girlfriend, husband, family and reading other stories on this website (thanks everyone) I decided to bite the bullet and be aggressive towards this aggressive cancer. Chemo it is. Portacath on Tuesday 5 Feb. First chemo on Wed 6 Feb Abraxane and Herceptin....and beyond......My Journey - (new) article 'Managing Stress & Mindfulness'
Hi members, My Journey has a new article you may be interested to read and share (I admit I have a very keen interest and passion in the management of stress, particularly to empower people to develop their own toolkit of strategies). BCNA are looking at diving into this topic further next year so watch this space. https://myjourney.org.au/article/3518Getting on with Life
Good afternoon ladies It's been a little while but I'm still around :-) My nails are under control - look a treat but at least they are no longer oozing - blurgh! Of course the range of antibiotics given to me then resulted in me getting a bowel infection so I am on AB's to control that now! You have to laugh really. It's all good though - I feel well. My latest scans have shown a partial response - the node in my axilla is still shrinking while the stubborn lung mets are about the same - so stable (c'mon guys - get with the program!) The skin met is also shrinking. I am hopeful next scan will show reduction everywhere again. I was down in the dumps about the lung mets until it was pointed out to me that nothing new is growing and it's all stable and I have no symptoms and am tolerating the treatment and the next scan may very well show further reduction - I pulled out of my funk and thought "geez girl - live while you are alive!" - it is something that can be said for all of us - cancer or no cancer - the cancer bit just messes with your head a little more. I was wondering how I was going to get through Pinktober - the thought of survivor stories, stories of early detection and treatment success and then stories of recurrence and how that was going to get to me. Am I still a "survivor"? Am I still part of the "sisterhood" - the quiet minority with ABC/Stage 4? Well, the initial stories got me down - Stage 4 stories of accepting the "inevitable" got me in a funk, EBC success stories saw my little green man come out full of envy. Wasted emotion - other women's stories - not mine - I'm writing the book on that one - planning on it being a long book full of fun and exciting chapters - grandchildren anyone? So I thought to start Pinktober I would occasionally post positive quotes to my FB page - no statistics allowed. Then my friend and I have got together to organise a Pinktober Breakfast - see link below - if you are in Melbourne and would like to come please message me (we need to have a rough numbers guide for catering). http://fundraise.pinkribbonbreakfast.org.au/bernadette_burnes I have to say gettng involved in this has me pumping again. I feel alive and like I am doing something worthwhile. I just hope that more of the money goes to ABC research. I know early detection is best but it didn't help me (a little selfish I suppose) and a hell of a lot of other women. Then of course there is the whole PBS palaver and issues for rural women - it quite simply is not good enough! I am still attending the Gawler program and learning a lot with the lovely Leonor and Augustin. I am not merely a sponge but am learning with a critical eye to ask more and investigate more. I am still receiving counselling which is of enormous benefit. I still see my shrink - also beneficial. I am still eating a plant based diet with fish and no dairy or other animal products (aside from fish) - want to lose weight anyone? I am still meditating and love the inner peace it gives me. I am still having regular accupuncture and chinese medicine and believe this is helping me manage the weekly chemo better. I am still on the search for a naturopath to work with. I have hair growing back and went without headwear in public today - most wouldn't but I don't care! We have had a lovely beach holiday on the Gold Coast where I returned midway for treatment. The kids and B had a relaxing time - it was nice to be back in my home state, see old friends and relax. I love the surf and the beach - it is my special safe place and hearing the ocean daily warmed my soul. You know what? I might have ABC but I'm still a SURVIVOR and I'm living for now (and still hoping - not worrying - for tomorrow) Much love and light to all SURVIVORS. Amanda xxxResearch Study - Western Sydney University (Free yoga)
Hello members, Our BCNA Policy and Advocacy team have provided the current study information that may be of interest to some of our members: Researchers at Western Sydney University are undertaking a 6-week clinical trial exploring the impact of either group yoga classes or individual yoga sessions for improving mental health in people diagnosed with cancer. Who can participate? You may be eligible to participate if you - Have been diagnosed with either breast cancer or gynaecological cancer (ovarian, uterine, cervical, etc) in the last 5 years - Are not currently receiving chemotherapy or radiotherapy; however, you may be receiving stable hormone-blocking therapy, targeted therapy or immunotherapy - Have increased symptoms of depression and/or anxiety - Have adequate general health to be involved in a yoga program - Have reliable access to the internet and a device with a web camera - Are aged 18 or older What’s involved? To register your interest to participate in this clinical trial, you will complete and submit an anonymous online survey. The purpose of the survey is to assess your eligibility to participate in this clinical trial. Participants who meet the preliminary criteria to participate will be asked to submit their contact information, which will be used by a clinical trial officer to arrange a teleconferencing screening call. If you are eligible, you will be randomly allocated to either group yoga classes or individual yoga sessions. Group yoga classes if you are allocated to group yoga sessions you will be required to attend six (6) yoga classes with a qualified yoga teacher online via the Zoom platform over a 6-week period. You will also be asked to do additional yoga practice between classes, and record your practice weekly. Individual yoga sessions If you are allocated to this group you will be required to attend six (6) one-on-one yoga sessions with a qualified yoga teacher online over the Zoom platform over a 6-week period. You will also be asked to do additional yoga practice between sessions, and record your practice weekly. During the program, all participants will complete a short (10 min) weekly survey and 3 sets of questionnaire and assessment measures (approximately 30 min each) as well as having occasional 5–10 min phone calls with a research team member. Interested in participating in this study? To indicate your interest in participating in the study, please visit NICM HRI | Online yoga and mental health in cancer study or contact Maria Gonzalez NICM Health Research Institute, Study Chief Investigator - PhD Candidate, by emailing [email protected] Complementary therapies can improve your physical and emotional wellbeing. They can also help you to manage some of the side effects of breast cancer treatments, such as anxiety, pain and fatigue. Yoga is a form of complimentary therapy. While many complementary therapies can be very helpful, it is a good idea to talk to a member of your medical team before starting anything new. This will help you to prevent any possible effects that the therapy may have on your breast cancer treatments or general health. You can check out BCNA's website for more information regarding complimentary therapies https://www.bcna.org.au/health-wellbeing/complementary-and-alternative-medicines-and-therapies/complementary-therapies/
