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6 month update TNBC Stage 4
TrishV
Member Posts: 10 ✭
Hi everyone, bit of a flat day, thought I would post an update, writing my journey out helps me.
It's also so hard to find anyone with a similar diagnosis to talk to...on this site.
TNBC Stage 4 Mets to lung, lymph
Started Carbo & Gem chemo 4 months ago.
1st scans showed lung spots gone, chest spots gone, tumour shrunk considerably, great news. TNBC responds well to chemo.
I was also given immunotherapy pembro, experienced very severe side effects, fever, liver inflammation and more, common side effects however wasn't permitted to continue on immunotherapy, shattered I was.
Chemo also stopped.
After steroids to reduce liver inflammation went back on carbo gem chemo and the 1st session back gem inflammed my liver.
Today my oncol said no more gem. 😞
I can have carbo until I can't have it anymore eventually effects will kick in.
My liver Dr is wanting me to go back on immunotherapy pembro with infusion of tocilizumab which stops liver inflammation.
Oncol will review this, she isn't keen, but I am and it will be my choice anyway.
My oncol going to have a round table with her oncol team to seek other options if they are available.
TNBC one of the hardest if not the hardest to treat with very very limited treatments.
I research every single week about trials, new treatments just hoping.
I am very healthy otherwise, cruise through chemo, work FT and just feel great, so
Today, I had a huge meltdown. I dont talk to my oncol about life expectancy ever, its too fearful for me and my choice not to, a rule I set on day 1 I met her.
If anyone has a same, similar diagnosis, story I would love to hear from you.
I've said alot here today, helps my mind a little bit.
Take care to you all ❤️
It's also so hard to find anyone with a similar diagnosis to talk to...on this site.
TNBC Stage 4 Mets to lung, lymph
Started Carbo & Gem chemo 4 months ago.
1st scans showed lung spots gone, chest spots gone, tumour shrunk considerably, great news. TNBC responds well to chemo.
I was also given immunotherapy pembro, experienced very severe side effects, fever, liver inflammation and more, common side effects however wasn't permitted to continue on immunotherapy, shattered I was.
Chemo also stopped.
After steroids to reduce liver inflammation went back on carbo gem chemo and the 1st session back gem inflammed my liver.
Today my oncol said no more gem. 😞
I can have carbo until I can't have it anymore eventually effects will kick in.
My liver Dr is wanting me to go back on immunotherapy pembro with infusion of tocilizumab which stops liver inflammation.
Oncol will review this, she isn't keen, but I am and it will be my choice anyway.
My oncol going to have a round table with her oncol team to seek other options if they are available.
TNBC one of the hardest if not the hardest to treat with very very limited treatments.
I research every single week about trials, new treatments just hoping.
I am very healthy otherwise, cruise through chemo, work FT and just feel great, so
Today, I had a huge meltdown. I dont talk to my oncol about life expectancy ever, its too fearful for me and my choice not to, a rule I set on day 1 I met her.
If anyone has a same, similar diagnosis, story I would love to hear from you.
I've said alot here today, helps my mind a little bit.
Take care to you all ❤️
11
Comments
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Gosh @TrishV - you've had a hard trot with all the reactions & inflammations ... just when the scans were looking so good too. xx Sounds like your Liver Dr is on your side re the treatments, so I hope it can go ahead as it is what you want xx
Have you joined the TNBC private group? I am sure they'll talk more about their treatments & stuff, in total privacy .... https://onlinenetwork.bcna.org.au/group/30-triple-negative-breast-cancer-tnbc
And remember, if you'd like to chat with someone, give our Helpline a tingle on 1800 500 258 for a personal chat (Mon-Fri 9-5)
take care & wishing you all the best xx2 -
Sending you very best wishes @TrishV
I am not TNBC but I am moved by how, amongst everything you’re experiencing, you have generously shared your personal story; there’s a good chance someone in a similar situation will be helped by seeing your experience. All the best as you progress through the treatments 🌸1 -
Hi Trish
I am a newly diagnosed TNBC stage 3 just joined. I am 45 and a pharmacist. Happy to talk. I am also be pembro. With stage 4, you will be entitled to a newer drug called trodelvy. If the doc has not mentioned it. Maybe it is worthwhile bringing it up. Hopefully it is of help. https://www.rarecancers.org.au/news/437/new-pbs-listing-trodelvy-for-the-treatment-of-metastatic-triple-negative-breast-cancer-from-1-may#:~:text=Trodelvy%C2%AE%20(sacituzumab%20govitecan)%20will%20become%20available%20on%20the%20Pharmaceutical,with%20two%20or%20more%20therapies.2 -
So sorry to hear of your diagnosis, @nuinui89, I hope you are going OK ....
There is a Triple Negative Group on the forum that you may like to join, where you can discuss your diagnosis & treatment in total privacy:
https://onlinenetwork.bcna.org.au/group/30-triple-negative-breast-cancer-tnbc
@TrishV - How are you going? I hope the treatment isn't being too rough on you xx I also hope your Onc has raised Trodelvy treatment with you and the team.
take care & all the best with your ongoing treatments, ladies xx
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Hi everyone
Thanks for your messages
My liver is back to normal now after 4 months of meds, weekly appts, and a tocilizumab infusion. Liver Doc gave the ok to get back to treatment.
I have just started Capecitabine for a week.
My scans showed tumour growth however we weren't really concerned too much as I haven't had treatment for 4 months due to inflammed liver, it's was a given there would be activity, no new areas of growth which was good.
Hoping Cape will help and yes SG is next line of attack if needed.
Feeling great,.working full-time so getting on with it. Hope everyone is doing well 💗
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