From bad to worse, but getting better.
I remember writing in these forums when I first had early breast cancer. I’m back! I was diagnosed MBC last year in March. It’s been a crazy roller coaster! My original cancer was triple positive IBC. It came back in my liver only. It was riddled with them and some were huge. And just six weeks after my reconstruction, when I was “putting cancer behind me”. Anyway I had an amazing response to 3 months of THP and a holiday in Greece last year and they vanished. There was an unfortunate incident involving a hot water bottle that gave me third degree burns to my reconstructed breast. I also had to get a seroma drained ten times (it’s still there). In November I had two small tumours come back, progressing after just six weeks on HP. I went to USA and accessed a new treatment called histotripsy that blows up tumours using only sound. We blew them up and they were gone and I moved onto Enhertu. After six months we saw new progression so I went back to USA in June and blew up the biggest two, which had grown so fast (to 3cm from nothing in two months since a clear MRI). I still have a few in there but hopefully less aggressive ones. Now I am facing a situation where I have discovered I was not offered or given the first line treatment after chemotherapy, and now, I am not entitled to ever receive it on the PBS. I am self funding Perjeta for now but hoping my appeals to the PBS people and to others might help in getting it subsidised or under compassionate access. I feel I am being penalised for my oncologists “mistake”. The truth is I think he did it (called my cancer HER2 only and treated it as such to give me the best chance to access T-Dxd early in the piece I have also now been advised to consider Palbociclib based on the Patina results but this is also not on the PBS for my type of cancer. So somehow on top of the 150k I have spent on blowing up tumours I am expected to find another 100k per year for medicine? Or just accept inferior treatments? Life with MBC can be hard. This week I got an MRI that was interpreted as major progression. I cried I ran off to the hospital to fill the palbo prescription then came home and realised the lesions (extremely suspicious for metastatic progression) were actually the three treatment zones I had targeted (phew). So there are only babies that will hopefully now start shrinking from standard of care 15 months late and largely on me. I’m considering going to India for cheap palbo or back to California for more liver bombing. I never knew cancer would turn me into a jetsetter. I am also a mother of two girls 10 and 13. Keen to hang around as long as I can. Well that was a long story! I remember I got some good support here when I was going through it the first time. I’d love to meet others in the same boat in Melbourne.
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. # # # ##
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
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 xFriday Update!
Hello and welcome to the Friday update! It’s almost here and we are very excited! As you may know, the online network is getting a makeover. Some of you have been following the updates and asking questions over in the Community Shift group. On Monday, 29 August, the online network will go offline around 9am and it will remain offline all week. On the following Monday, 5 September, you’ll come back here and voila! New online network. If you need anything during this time, please don't hesitate to email us at bcnaonline@bcna.org.au or call us at 1800 500 258. Community Highlights We have 24 new members. Please say hello to Rosep, archer21, DebbieT and all our new members. This week we had 41 posts and 381 comments. Here are some you may have missed - Tao - High grade DCIS Dmcook - Concerned DonnaF - One year on Cat4462 - First Chemo BCNA News & Events Supporting people with a disability - Join our consultation on the impact of disability on breast cancer diagnosis and treatment. BCNA wants to ensure that it provides accessible and appropriate breast cancer information and support to people with disabilities and their families. We would like to understand what information and support people with a disability who have breast cancer need and we are interested in the breast cancer information and support needs of people who support people with a disability. More information is available about the project in the participant information statements for people with a disability and for family members, carers and support workers. If you would like to share your experience with us or would like to find out more, please contact Grace Daley via gdaley@bcna.org.au or on 1800 500 258. If you are deaf, or have a hearing or speech impairment, contact Grace through the National Relay Service www.relayservice.gov.au. Pink Lady Luncheons - The Pink Lady luncheons provide an opportunity to support Australians affected by breast cancer and are held in conjunction with Breast Cancer Awareness Month (October) and Secondary Breast Cancer Awareness Day (13 October). Click here for more information. (Our CEO Christine Nolan, our very special guest speaker Ita Buttrose and BCNA Board Member Megan James at our Canberra luncheon) Pink Sports Day - AFL ledgends Mick Martyn & Mark Williams took some time off preparing for the upcoming EJ Whitten Legends Game to organise another Pink Sports Day game for a great cause... The Newport Power on this Saturday August 27!!! To find out how to get involved with Pink Sports Day click here! (Image-Starweekly.com.au) BCNA Information Forums - Our free breast cancer information forums took place this week in Brisbane, Mackay & Roma. We had a wonderful turnout to all three events and look forward to coming to Sydney in October. Have a lovely weekend, Ann-Marie xx
