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Re: Anyone on T-DMI (trastuzumab emtansine) chemo ,early BC no metastases
Hi cath62- there’s been changes since that post . Later that year I had back pain and after comparison of old and new scans ‘MRIs the radiologist decided to,amend my diagnosis - L3 secondary ca and it had been there from day 1 ( so technically de novo). Whilst I was taken aback, Onc nurse did help,me process it all and as she said they’d thrown everything at me thinking it was early BC ( sometimes with stage 4 and de novo cases they don’t want to offer surgery ). So it wasn’t detrimental to my health as such although I had time where I thought I may be lucky and escaped it all. So I’m oligometastatic - only one secondary , it’s been radiated and has been inactive since. Nothing else has cropped up , everything crossed . my current treatment regime from Oct 22 I think now herceptin and perjeta (im now up to 54 treatments, every three weeks now )plus hormone blocker aromasin which I find ok , no major side effects add- I’m triple positive BC my only health issue now is a dodgy parathyroid - totally unrelated to BC hi claudia13 - I only had a few TDMI infusions back then and then moved on . Can’t recall any side effects to be honest Am having trouble recalling why it was stopped, but hunk we went with herceptin instead
1 year ago Place General
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Re: Long term Herceptin
It is great to see how many are doing ok on herceptin and perjeta .I’m soon to have no 40 , and am sitting on no evidence of active disease -first diagnosed I. June 2020 . Had initial,treatment as if a EBC case (chemo/lumpectomy/ radiation ) and herceptin post treatment, the L3 spot found and they realised it had been there since day 1 (a radiologist revised his report )So de novo .started H&P regime Oct 21. A few side effects - itchy skin and diarrhea , but manageable .I’m planning a trip to Japan for July
2 years ago Place Living with metastatic breast cancer
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Re: On herceptin and perjeta , stage 4 , itchy skin and now itchy scalp -anyone treated itch sucessfully
Just an update fter being reviewed by dermatologist . I did have a bit of dandruff , and apparently that yeast can cause seborrhoic dermatitis . Dermatologist has me on good anti dandruff shampoo ( nizoral 1%) daily for 7 days, then every couple of days. When foaming, spread foam over back and arms where the scaly bits are . They have definitely improved . I still have novasone lotion which I’ve used when itchy on neck and elbows (oddly, no scaly bits there and that’s where I itch the most now ). Itchiness has improved. She also said to use QV wash , and she recommended La Roche Posay cicaplast baume B5 moisturiser . Learnt a lot about dandruff ! It’s a yeast , opportunistic skin issue . anyhow my skins better -I’ll stay with Dex on day of H&P infusions , and hopefully things will improve
3 years ago Place Living with metastatic breast cancer
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Re: Brain Fog
https://www.abc.net.au/news/2023-07-05/cancer-research-finds-exercise-helps-chemotherapy-brain-fog/102556324?utm_campaign=abc_news_web&utm_content=link&utm_medium=content_shared&utm_source=abc_news_web Here’s link to same report as per abc news very interesting reading
3 years ago Place General
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Re: Anastrozole and vertigo
There’s a condition called BPPV , that also causes vertigo ( one symptom that stands out is moving suddenly from side to side when lying in bed sets it off ) a good physio can give you a exercise to do that settles the crystals . I’ll try and find a link and post it for you . I’ve had it on and off for 30 years but know to head to physio when it plays up https://eyeandear.org.au/patients-visitors/fact-sheets/benign-paroxysmal-positional-vertigo-bppv/
3 years ago Place General
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Re: Chemo first and surgery after
https://www.melbournebreastcancersurgery.com.au/wp-content/themes/ypo-theme/pdf/nac-pt-info-eviq.pdf This is a good link with explanation of why some breast cancer patients have chemo first, then surgery
3 years ago Place General
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Re: Was anyone NOT offered the Oncotype test - as recommendation was for no chemo?
If I’m reading the BCNA info correctly , breast cancer that is HER2 positive and HR negative suits testing if you’re triple,negative or triple positive it won’t help - other factors like size and whether lymph nodes affected or path type (lobular - IDC etc ) come into play does that sound right ? I was triple positive , ductal ca and no lymph nodes affected originally -no family history and was never offered onc-type or genetic testing -was told I needed chemo because of triple positive status
3 years ago Place Living with breast cancer
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Re: Does everyone have a PET /CT scan when lymph nodes positive?
My team ordered me PET scan as part of plan along with lumpectomy and sentenial node biopsies anyhow as part of the staging - at that time nodes were negative . I was told all clear and just completed radiation and herceptin /TDMI and hormone blockers . Unfortunately some 16 months later I developed back pain and a L3 secondary found ( radiologist decided on review of previous scans it was probably there originally ). Lymph nodes still show negative on three monthly scans - L3 has been radiated and im basically naed - no evidence of active disease , on routine herceptin and perjeta three weekly and hormone blockers I think having scans right from first diagnosis is an excellent idea for oncology team so that they know your status ( and any secondaries ) and direct your treatment accordingly. for the patient you’ll know hopefully exactly what you’re dealing with too. For example if secondaries found surgery isn’t always a option , chemo and radiation path may be different For me I’d rather know from beginning exactly what I was dealing with . From people I’ve talked to it seems to be very normal to have a scan before breast cancer treated to try and rule out secondaries
3 years ago Place Surgery
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Re: Anyone noticed Ear infections on perjeta ?
Suspect you’re right blossom ! About side effects I’m starting to worry about hearing loss with chronic infections hence my enquiry here before I get to ENT as audiologist report picked up a few issues
3 years ago Place Living with metastatic breast cancer
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Anyone noticed Ear infections on perjeta ?
Question for those who may be on perjeta treatment I’ve just come back from GP again - three ear infections now in 6 months ( first perforated ear drum , now on 3rd lot of antibiotics ) Ear infections listed as a 1 in 10 side effect of perjeta when you Google side effects If you’ve had them , how did you manage them ? I’ll be seeing ENT next month and I’ll see oncologist later as well so I’ll ask them too of course I don’t normally get ear infections before this stage 4 journey -don’t get head under water normally (don’t go swimming much ) and only wash hair a few times a week.I’ve never been told I have narrow ear canals which I know can predispose you to infections
3 years ago Place Living with metastatic breast cancer
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Living with metastatic breast cancer
This is group for people living with metastatic breast cancer (also called stage 4, secondary or advanced breast cancer). This is a safe, understanding space to connect with others who truly get what it’s like to hear the words that you are living with metastatic breast cancer. Together, we offer each other strength, compassion, hope encouragement and a place to talk openly—whatever you're facing.
Let's talk: vaginas, menopause & me
PRIVATE GROUP. This group is a safe, supportive space to talk about sexual health and emotional wellbeing during and after breast cancer. We discuss topics like menopause, vaginal dryness, pain during sex, UTIs, and changes in libido, and share ideas and products that may help. Whether you're navigating intimacy with a partner or reconnecting with yourself, you're not alone here. This is a place for open, respectful conversations and shared understanding.
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PRIVATE GROUP. Choosing breast reconstruction after single or double mastectomy can feel overwhelming, and deeply personal. This group is here to connect you through others' stories and images. Please respect everyone’s privacy—do not copy or share content outside this space. Information is based on personal experience and is not medical advice; always consult your healthcare team for guidance. ⚠️CONTENT WARNING⚠️ Members may share photos of breast surgeries. These images or discussions may be distressing or triggering for some. If you need support, please contact the BCNA Helpline - we are here for you.

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Living with metastatic breast cancer

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