Pembrolizumab (Keytruda)

Hi all - I’m in the middle of chemo as we speak. Just finished 12 weekly doses of Taxol & Carbo. Move onto AC next week. I also get Keytruda every three weeks. My tumor was 22mm so just on the cups of being able to get it. No lymph node involvement.. I’m in the US (but British) so less of an issue getting Keytruda approved as, well, we pay through the nose for our healthcare (don’t get me started).  Tumor responding well to chemo. Had reduced by 30% about halfway through the Taxol and Carbo. Have another scan with the breast surgeon on May 5. I can no longer feel it. I am negative for any gene mutations. I am also 46.  

As far as I can tell, no side effects from the Keytruda. With Taxol I’ve had neuropathy and some hair shedding - - am using cold cap so still have a decent head of hair overall. 

Currently evaluating surgery options. Leaning towards lumpectomy and radiation, but have come across a fair few people who chose to go full or DMX route so now starting to second guess my decisions. My oncologist has told me that with TNBC, having a single or bilateral mastectomy doesn’t materially lower recurrence risk as they are more concerned with recurrence as secondary cancer. .   

so so glad I found this forum, and truly appreciate everyone on here being willing / able to share their experiences.  

I have to admit I’m worried about that secondary cancer possibility elsewhere - is there anything protective people are advised to do to monitor? Yearly PET or MRI scans for example? I know the NHS in UK  won’t do these - but holding in mind all options going forward.

Yeah, that worries me too. I haven’t had the discussion yet with what long term monitoring would be. I asked my oncologist what the recurrence risk was and she said it depends on mainly three things - size of tumor, if it’s spread and how well it reacts to chemo. 

So for me, as an example:

1. Single tumor - originally 22m, so small and early stage
2. No indication so far that there is anything in the lymph nodes, but obvs will only be confirmed with surgery
3. Responding well to chemo

If 2 & 3 continue to be true, she said I will have an excellent prognosis and a lower risk of recurrence. And if I go 5 years without a recurrence, then the risk drops even more. 

That’s really interesting. I will ask my oncologist and see if those statements match up! I hope so as my situation is this:

1) Single tumour - 16mm x16mm in size - so early stage like you

2) No lymph node evidence - though surgery to confirm (awaiting genetic testing)

3) Responded well to chemo so far - after 2 rounds of EC had shrunk to 12mmx7mm - moving on to 9 weeks of Paclitaxel and carboplatin starting April 25th.

I now how important it is to stay with the here and now but can’t help that head moving forward to future sometimes - and maybe there is some sense in that in terms of ensuring all protective factors in place ?

Based on that, and based on what my doc has said, I would think that you would have the same excellent prognosis as me. Def check with your doc!

I think the hardest part will be going from 100 to zero. With some of the hormone positive cancers, people take chemo drugs for years after. And while I know that in and of itself isn’t ideal and comes with it’s own issues, I do wonder if it doesn’t give some measure of comfort to know that you are doing something on a daily basis to help yourself. With us, it literally - mostly - goes to no treatment at all. 

Let’s stay with excellent prognosis!!!

When I was first diagnosed and reading around triple negative I was literally terrified as some of the stuff online is so bleak - I have learned to stay away

Yes!! Definitely.  And I hear you on the online thing. To this day, I haven’t googled anything. I’ve only gone to websites that my care team has recommended or that other fellow TNBC Thrivers have recommended. There is so much outdated info and nonsense out there, I do not want to go down that rabbit hole. 

Well it is easter - but agree we need to keep out of rabbit holes!!!!

Ha! I’m based in the US - although I’m a Mancunian through and through - and that was one of the hardest adjustments on moving here, no 4 day Easter weekend!

Hope you have good long weekend!

Aaaaaah - not sure we can be friends then as I am in Leeds and we are rivals on the football field!!!

Nice to meet a northerner though really!

The 4 day weekend for easter is perhaps worth relocating for?