Best Of
Re: Chemo first and surgery after
Hi @JuneXie...I was diagnosed in September 2016 with Stage 3, Grade 3, Triple Positive (so Her2, ER and PR +), multifocal and with at least 1 node involved. I was (and still am) a public patient, and when advised to do chemo first, to be honest I was quite sceptical of their explanations. I thought their surgery lists were very long and that they were fobbing me off by doing the chemo first to keep me occupied and in a 'holding pattern' until surgery could be done. My instincts were to chop them both off now...give me a weedwhacker and I'll do it myself... Well, as it happens, when I did have my bilateral mastectomy with axillary node clearance on the left (the known to be feral boob), and sentinel node on the right. The pathology report on all the removed tissue, breasts and nodes, showed a complete pathological response, with no live cancer cells found at all, only the (quote) empty tumour beds. I remain NED (No evidence of disease) almost 7 years on. I was 58 at the time. Good luck with your treatment, and remember, this is the first time you've had breast cancer, but to your medical team, this is their bread and butter. They've treated hundreds if not thousands and are very up to date in the ever changing treatment protocols for different types and stages of breast cancer.
AllyJay
5
Re: Our Gardens
This chap has been roaming around our block for years. He has now decided that our back verandah and garden is a better home.
I still, after all these years, not got used to him grinning at me when I step out of our back door.
The Kimberley name for him is "Bungarra". He is approximately 1.5 metres from tip of nose to tip of tail.
Totally unafraid of us, can't say the reverse!
Annie C
5
New metastatic diagnosis
I’m new to this group. I’m 43 years old and today I was told I have ER, PR negative, HER2 positive metastatic breast cancer. I have mets in lymph nodes, bones and liver. No symptoms- only had a mammogram as my Mum was diagnosed with breast cancer 2 months ago. I’m married with an 8 year old son and 11 year old daughter. It goes without saying that I’m absolutely devastated. Not only for myself but more so for everyone else this will affect.
I’m starting docetaxel, trastuzumab and pertuzumab on Tuesday. Can anyone provide me with any information on how long this treatment has controlled their cancer for?
I’m starting docetaxel, trastuzumab and pertuzumab on Tuesday. Can anyone provide me with any information on how long this treatment has controlled their cancer for?
Thank you.
sal1979
4
Re: Our Gardens
Bob The Builder - Year Two
Last year I wrote of our resident Greater Bower Bird and his antics on our Kimberley block.
Bob is at it again. Only this time he has competition. A second Greater Bower Bird has built his bower less than 50 cm from Bob. The two bowers are 5 metres from our front verandah.
Bob tidied up and redecorated his existing bower, it faces north / south, however Ben has constructed his, using material stolen from Bob's, in an east /west direction. Ben has a lot to learn, building wise. Ben's bower is the scruffy pile of sticks on the right side of the photo.The two bower birds spend much of the day building, wrecking, decorating, strutting, running through each others' bowers and thieving from each other.
Many "decorations" have been stolen from the shed. A bucket of reticulation fittings in the pump shed has been raided.
Whenever we required any building fittings, washers, nuts, bolts and sundry other bits, we in turn raid their bowers.
Over the past two weeks a female bower bird has been interested. She too has been strutting her stuff. Bob and Ben have been too interested in demolishing each others bowers and so have ignored her.
The female bower bird hormones must have been raging, in the end she gave up interest and a few days ago she was observed paying attention and strutting her stuff to a different male Greater Bower Bird who has a magnificent bower, beautifully decorated at the back corner of our block where I suspect tbe deed was done, she is no longer around and the third male bower bird is looking most pleased with himself.
The third bower and resident male we discovered two days ago when we were clearing the fire breaks. And so, smack bang in the middle of the block's perimeter fire break is a bower and two back hoe bucket runs on either side of it! God only knows what the Shire Ranger will say.
Annie C
6
Happy birthday wishes to @arpie
Happy birthday to you
happy birthday to you
happy birthday dear @arpie
Have a lovely day & thank you for all the care you show to the online group through all your lovely messages of support 🧡💛💚🩵
happy birthday to you
happy birthday dear @arpie
Have a lovely day & thank you for all the care you show to the online group through all your lovely messages of support 🧡💛💚🩵
gumnut
5
Re: Starting Letrozole & palbociclib tomorrow
Hi, I am just coming back on to the website after a few years of not being on here.
Since I last posted back in 2017 with Stage 2 and went through all the chemo, radio, surgery etc. I was doing well.. then in Oct 19 I was diagnosed with Stage 4 with mets in my bones. I started Palbociclib and Arimidex in Oct 2019 and now 18 months later I have been stable for the past 6 months with the CA 15-3 markers. Occasionally I will get some nausea, but I find the tiredness is the hardness part and the joint pain in my body and mainly my knees is the problem. I am Ostrogen positive so this is a huge issue with joint pain.
The Palbo is working so I am happy with that. Most of the 12 lesions in my bones have shrunk but not gone.
Each month I have a blood test to check the WWC and Neutrophils and CA 15-3 markers... Neutrophils are around 1.2 which is way too low but I have not moved much in the past 18 months 1.2 - 1.9 is my range now. WWC is around 3.5 or sometimes lower but only once hit 4 which is the base range for the "normal" range. So yes I am in the "don't get a bug" category. I work in and out of the hospital system so it is challenging at times and especially with the COVID situation.
I have never stopped the meds except for 1 week last June when I was supposed to have another operation to clean up the boobs from July 2016 but as I am now stage 4 my Surgeon does not want to "put me in the grave" by operating. She is very upset about this as am I cos they need some work done but "it is what it is" as I say.
I am living my life and getting on with not dying just yet.
Since I last posted back in 2017 with Stage 2 and went through all the chemo, radio, surgery etc. I was doing well.. then in Oct 19 I was diagnosed with Stage 4 with mets in my bones. I started Palbociclib and Arimidex in Oct 2019 and now 18 months later I have been stable for the past 6 months with the CA 15-3 markers. Occasionally I will get some nausea, but I find the tiredness is the hardness part and the joint pain in my body and mainly my knees is the problem. I am Ostrogen positive so this is a huge issue with joint pain.
The Palbo is working so I am happy with that. Most of the 12 lesions in my bones have shrunk but not gone.
Each month I have a blood test to check the WWC and Neutrophils and CA 15-3 markers... Neutrophils are around 1.2 which is way too low but I have not moved much in the past 18 months 1.2 - 1.9 is my range now. WWC is around 3.5 or sometimes lower but only once hit 4 which is the base range for the "normal" range. So yes I am in the "don't get a bug" category. I work in and out of the hospital system so it is challenging at times and especially with the COVID situation.
I have never stopped the meds except for 1 week last June when I was supposed to have another operation to clean up the boobs from July 2016 but as I am now stage 4 my Surgeon does not want to "put me in the grave" by operating. She is very upset about this as am I cos they need some work done but "it is what it is" as I say.
I am living my life and getting on with not dying just yet.
Re: Choosing to stop treatment
I’m very sorry that you find yourself where you are. I think this decision is a very personal one. I just have a bit of a far-out comment, and that’s that no one can tell you how much time you have left. Time and again patients have far out-lived their doctors’ predictions. The mind is a very powerful thing, so if your mind tells your body that it will live a lot longer, then it has a much better chance of doing so than if it listens to a doctor who is not God.
I wish you serenity in your decision and happiness 💟.
FLClover
5
Choosing to stop treatment
I was diagnosed with metastases in October last year and was given ~12 months. We tried Trodelvy but it was too hard on my body. Tried Eribulen but a recent CT scan showed it’s not working.
my onc has said we could try liposomal doxyrubicin but I had a horrible time on doxorubicin last year. He estimates I have maybe 2 - 3 months left and the next treatment has about a 20% chance to work, and if it does, it would only buy me a couple more months at most.
im thinking it’s time to stop treatment and just enjoy the days I have left.
has anyone else made this decision? What is your experience? Were you in pain or have other bad symptoms?
my onc has said we could try liposomal doxyrubicin but I had a horrible time on doxorubicin last year. He estimates I have maybe 2 - 3 months left and the next treatment has about a 20% chance to work, and if it does, it would only buy me a couple more months at most.
im thinking it’s time to stop treatment and just enjoy the days I have left.
has anyone else made this decision? What is your experience? Were you in pain or have other bad symptoms?