TNBC with node involvement & lung mets.

Bsnow 8 months ago

6 replies
38 subscribers
257 views

Hi all, I was diagnosed just before Christmas with invasive ductal BC. Ater many tests and scans if was found to have quickly spread to my lungs. My treatment options are now much more limited.

I have been offered a place on a trial that I have been told has been pretty successful for many patients. All of the side effects seem pretty similar to standard treatment.

Has anyone else taken part in a trial & how did you get on with it?

Look forward to hearing from anyone

latchbrook 8 months ago

Hi Bsnow

I wondered if you meant to post this in the secondary breast cancer forum which I can see you've posted in before?

"Never regret a day in your life, good days give you happiness, bad days give you experience"

Bsnow 8 months ago in reply to latchbrook

I have got TN secondary breast cancer . Should I post in the TNBc group?

latchbrook 8 months ago in reply to Bsnow

The secondary breast cancer group would probably be the best one for you as you'll then connect directly with others whose breast cancer has spread.

"Never regret a day in your life, good days give you happiness, bad days give you experience"

Bsnow 8 months ago in reply to latchbrook

Ahh, okay. I'm confusing myself .

Mmum 8 months ago

Bsnow said:
Has anyone else taken part in a trial & how did you get on with it?

Hi there. I have kidney cancer and I'm on a trial. I started standard treatment in Jan 2022 and in June 2023 bolted on the trial. I didn't do it because I needed it, my initial treatment was working, but because I was suitable and I wanted to help development. The trial has proved the treatment is safe but no participant has sustained tumour shrinkage. My oncologists have another trial lined up for me in due course.

I saw it as "tomorrows drugs today" and because I want to help tomorrow's cancer patients have demonstrable treatment.

You're probably wondering "what if" and whether to bite. Something I look back on, is when I started immunotherapy I thought it would work or not. Any problems, we would backout. But I suffered degradation in my kidney function because of an over-reaction by my immune system. It won't return to normal now. That's the thing with these drugs - you never know whether you are starting down a one-way alley or not. For me the trial was fine, but the standard treatment had impact. Trials aren't necessarily dodgy - they have already done lots of tests so there is high confidence about the trial drug. The oncologists can't predict how your body will react to the drugs, but they can advise expectations. It's all a bit of a leap of faith, but some leaps are bigger and have more uncertainty than others.

Good luck in what you decide. There's no wrong answer, whatever you decide is the appropriate one for you.

Bsnow 8 months ago in reply to Mmum

Thank you so much for your response and taking time to explain.

I'm definitely keen on taking part in the trial I've been offered. From what I've been told it's had promising results with some of the participants. I'm also happy to help with medical progression.

Best wishes & thanks again.