How do you know if its progressing?
Hi Everyone, just a bit of a dumb question... I'm Stage 4 De Novo with bone/spine mets. I've been on Letrozole/Ribociclib/Denosumab for about 7 months now. I'm having restaging scans every 3 months... The first set of restaging scans showed "significant improvement" in my breast tumour and no further commentary re lymph node or spine mets. I'm about to go in for my 2nd restaging scans in about 2 weeks time. I don't feel much different than before I was diagnosed (except from the side effects of these drugs). So far, so good :) I'm just wondering, aside from results that may show on scans/blood tests, do you feel any different when the cancer starts to progress please? Should I be looking out for something? Pain? Or something else? What else have people encountered please? Any experiences shared would be greatly appreciated. Cheers
Starting Xeloda and would appreciate any insight and shared experiences / success stories please :-)
This is my first post to the on-line Network although I frequently read the wonderful and raw posts you all share that unite us and provide strength and inspiration! I was diagnosed 3 years ago with liver mets and had my ovaries removed and started femara.....which has been successful up until now. Liver mets now count 20 with 19 only 1cm and unsure whether they are all active but one at 5.5cm which is active hence my oncologist has opted to start me on Xeloda and that treatment began today. I am taking 5 x 500mg daily .....two weeks on and one week off. I visit him in 3 weeks for review of how I am responding. He is confident I will do well. I feel blessed and like I am living the dream given that I am 3.3 years down the track albeit I am using lots of energy at the moment to stay optimistic and positive given I was hoping for a liver dissection last week which the surgeon declined to do upon discovery of multiple lesions including new ones post my original diagnosis. I have a 22yo son (only child) who lives with me (still at Uni) and I am a single mum. He is my everything. I am not afraid for me....but I am scared for him. I know this emotion will settle but would appreciate any feedback members may have as keen to give the Xeloda a very good run and hoping symptoms are manageable so as I can show him daily strength and continued capacity to be as well as possible. Keen for anything anyone may be prepared to share re their own experience in terms of symptoms, management and success. Thank you my cancer sisters. Tracey (aka Traleee) xx
Olivia Newton John now has metastatic cancer
Just read this on facebook and i've got to say i'm very saddened by this news how dare cancer come back after so so many years. For Immediate Release OLIVIA NEWTON-JOHN POSTPONES JUNE CONCERT DATES May 30, 2017 - Las Vegas, NV — Olivia Newton-John is reluctantly postponing her June U.S. and Canadian concert tour dates. The back pain that initially caused her to postpone the first half of her concert tour, has turned out to be breast cancer that has metastasized to the sacrum. In addition to natural wellness therapies, Olivia will complete a short course of photon radiation therapy and is confident she will be back later in the year, better than ever, to celebrate her shows. "I decided on my direction of therapies after consultation with my doctors and natural therapists and the medical team at my Olivia Newton-John Cancer Wellness and Research Centre in Melbourne, Australia,” says Olivia Newton-John. There will be no interview requests accepted at this time as Olivia’s focus is on her treatment and healing. Ticket buyers for the upcoming concerts should contact venues directly about refunds. Rescheduled concert dates will be posted at OliviaNewton-John.com in the coming weeks. # # # ##
Just need someone to talk to.....
Hello! Since my my diagnosis in Feb this year I have read through online discussions but never had the confidence to join in. After being up all night looking up websites etc I have decided my time would be better spent seeking support rather than looking up scary statistics (I know! Everyone tells me to stop looking up things but sometimes it actually reassures me). Anyway a week after diagnosis I started neo adjuvant chemo which was hard but I did really well. Surgery was performed just over a week ago and whilst I am healing really well I'm devastated that I need to go into surgery again next week as my margins weren't clear. As I am very small (A cup) they have said I will now need a mastectomy as they can't remove anymore tissue without it looking terrible. I'm actually okay with this (or in a bit of shock) but what is really worrying me is that they now want to do more scans. The oncologist said they wouldn't redo scans unless there was a reason but now the surgeon says they need to be done to restage the cancer? My tumour did shrink with the chemo but it was still there and nodes were also positive. I'm so scared they are redoing scans because they think it has spread. The nurse said it was routine? I feel like I'm back at the start again - waiting, worrying....... Hopefully I get a bit of sleep tonight! C x
Update on stable bone mets but increased tumour markers - Part 2
Hi all, You may recall I posted yesterday about my stable bone scan but rising tm's and fearful of possibility of going onto chemo. Today I went to see my medical oncologist and she did a little "happy dance" in her chair. When I asked her about the rise in tumour markers - up from 71 to 143 in 3 months, she advised that tm's are not viewed in isolation. White cell count, kidney function, vitamin D, calcium, haemoglobin, protein levels were all good. Was also a timely reminder of where I was in January with tm's - 941. Given that the blood test was taken 2 days before my sore throat and mouth ulcers that I was affected by last week, possibly had more to do with it. If I had new or persistent bone pain, less than favourable bone scan and generally poor blood results it might be an issue. Given that I look well, energy levels are ok, bone pain is manageable - she is happy. "Have a great Christmas and I will see you next year" were her passing words ! Thanks to all those for your support. Sheryl :) <3
Friday Update!
Hi everyone and welcome to the Friday update. This week we have 18 new members. Please help me welcome @caseymmcc, @susieq2, @breast65, @el46 and all our other new members. Community highlights Each week we have lots of different discussions take place in the online network. These can include questions, updates, celebrations and so much more. Here are some conversations this week you may have missed: @ccasper - Fertility post chemo @wndsrfn - 2nd year check up @becmac - Annual scans and stereotactic biopsy @wendh67 - On line support friends Congratulations to our wonderful member Karen who completed a Certificate III in Fitness as part of BCNA’s partnership with Fernwood Fitness Foundation Scholarship Program! After being diagnosed with breast cancer Karen became passionate about the use of exercise to manage the side effects of treatment & reduce the risk of reoccurrence. Karen is excited to use her training to help other breast cancer survivors in the Darwin community. To read Karen's story click here. News & events Tamoxifen added to PBS for women at increased risk of breast cancer. To read more click here. Do you know someone who has a disability and has been affected by breast cancer? BCNA would like to understand what information and support people with a disability who have breast cancer need. We also are interested in the breast cancer information and support needs of people who support people with a disability. To find out more information click here. Newcastle Information Forum - Tuesday 11th October. To register click here Our partners & supporters BCNA is fortunate to have partners and supporters that help us ensure we deliver our programs and services free of charge to Australia's affected by breast cancer. Florsheim has just released a new BCNA range of shoes for men and woman. Our Partnerships Coordinator, Zoe Jennings, tells us how this idea was born at one of our information forums. When I started working at BCNA in January, I got to know a few of our wonderful volunteers and their sense of fashion when it comes to footwear. I thought it would be great to have a beautiful, comfortable hot pink wedge for our lovely ladies to wear to support and promote BCNA. After doing my research on the various shoe companies, I knew that Florsheim was the best fit with BCNA and our members. A meeting was set up and we pitched the idea. Florsheim immediately agreed. They were very generous and I knew it was going to be an incredible partnership. The BCNA range recently launched in all Florsheim stores. There are six women’s and three men’s shoes. The best part is that with every pair purchased, $40 is donated to BCNA. This helps support our programs and services such as our information forums, kits, and the online network. So head into any Florsheim store to pick up your favourite pair! For more information about our partnerships. Active & wellness tip Start where you are. Use what you have. Do what you can! Everyone is different so it is important to set yourself realistic goals and to listen to your body, start excising at an appropriate level for you. No gym membership? No problem. Use basic items that are already have. Cans of food for weights, walk up and down the stairs. Any exercise is better than none and more is better than less so try and avoid inactivity. Here is a little inspiration leading into the weekend from our creative members of the online network Have a lovely weekend, Ann-Marie x
the plan to get over the hurdle
Hi wonderful ladies Firstly let me thank you all so much for your messages of support. I haven't been able to reply individually but know they are gold to me. Devastated, shell shocked, angry, frightened, sad, desperate, hopeful, empty, bereft... there are so many words to describe the gamut of emotions I have been through since Friday's test results. I still cannot believe that I have developed metastases while on the gold standard treatment for my form of cancer. I'm not sure my treatment team does either (they they obviously do and are not emotionally attached). I haven't even noticed the effect of the taxotere this cycle because the pain in my heart is so much more than any pain in my bones or tingling in my fingers. The sick feeling in my stomach is fear not nausea, the shaking has been from my uncontrollable sobbing - when I finally let it out - it was a physical release - who says emotion is all in the head? After a very, very hard weekend Monday saw us visit the Gawler Foundation shop which is near our home. I saw a counsellor there and found it immensely helpful - she let me cry and scream and showed me that releasing my emotion actually provided me with some peace and space to be hopeful, that holding the fear and sadness down was actually more harmful to me. I have felt better since then - I am able to brush my daughters' hair without tears slipping down my face, watch my son kick his foot ball without wondering if I will ever see him play an actual game, listen to my other daughter sing without it tearing me apart. I'm not saying I don't feel anything anymore, I'm just managing it better. I have tears now as I write this - I'm bloody frightened. So, the plan... Today we saw my oncologist who has spent the weekend and yesterday discussing my case with colleagues and she has recommended that a clinical trial is my best chance to try and suppress the cancer - it will give me access to cutting edge drugs and is, she and her colleagues think my best chance. There are a number of trials with pros and cons - we have decided on a trial at Monash that ensures that even in the control group I am getting a combination of drugs that she feels will still be worth trying - if I get the experimental drug even better (perhaps). I have to go through a whole battery of tests and depending on my bloods will start as soon as possible. The treatment will involve weekly chemotherapy - indefinitely... It is herceptin and navelbine (IV form) + the experimental drug/placebo (daily tabet) We cannot cure the cancer - it will always be there. We have to hope that we can suppress it and hopefully shrink the tumors and that I can live with the disease and it's treatment as a chronic disease state. It is a lot to come to terms with but I have a lot to live for. Amanda xx
Feeling scared and uncertain
3 years ago I was diagnosed with stage 3 breast cancer and underwent a right mastectomy, chemo radiotherapy and then started on tamoxifen. Whilst always living in the shadow of it returning, I got on with life, saw my stepson marry, my son become a father and my daughter is just completing year 12. I thought I was ok. Then 5 weeks ago my world crumbled around me when I discovered the cancer had returned in my scar tissue and I have now been told I have advanced breast cancer. I consider myself lucky it hasn't spread to my bones or organs but I am terrified that it will. My oncologist is putting me on levistol along with a new clinical trial which she says has amazing results in the USA. She sounds very optimistic and assures me that if my cancer doesn't respond to these drugs there are plenty of others. So why do I feel so scared this time round? I guess I am now facing my own mortality and that scares me. I am only 52 and have so much more living to do. I understand that many women live with secondaries for years, I would love to hear from you and how you coped with this news. I am a positive person, I have to keep fighting as I don't fancy the alternative, but realistically I feel I have just been handed a death sentence. I am sorry if this sounds blunt, but this is how I am feeling right now. Any guidance or words of support would be greatly appreciated. Also, I live in Perth so if anyone can recommend any good support groups that may be a help to me. Thank you xx
