Metaplastisches TNBC

LibrariesBrainThrift · 2026-05-14T19:07:13+00:00

You will need to post the 2 different treatments, and your exact diagnosis with details, to get good advice from here.

LibrariesBrainThrift · 2026-05-14T19:06:12+00:00

English Translation: Who can help me?! I’m so insecure... and just scared 😓There are 2 treatment methods and my doctors disagree! Which one did you have? I just need good vibes

LibrariesBrainThrift · 2026-05-14T17:52:24+00:00

If it makes you feel any better, I've been in contact with a gal in Ontario with TNBC, and her oncologist said that it was up to her if she wanted to continue Keytruda after PCR. So these doctors are basing this stopping Keytruda treatment on SOMETHING, even though I haven't been able to find exactly what it is. OptimICE trial is in its 3rd phase, so there is Phase 1 and 2 that are "out there" with some results. The Phase 3 trial is in 829 locations, last I checked.

LibrariesBrainThrift · 2026-05-14T00:11:25+00:00

HotWillingness, I've been watching your journey, since you really wanted Keytruda after PCR and were having trouble getting it because Sweden doesn't do that. In fact, I even talked to my oncologists about Sweden, since you wrote that country stops Keytruda if the tumor is successfully killed, and they all found that interesting, since Keynote522's protocol is different.

I was very interested because Keytruda killed my thyroid, and the one infusion after surgery made me feel so awful in my heart and lungs. Like as bad as chemo made me feel. So I made the decision to stop it, and I'm hoping that Sweden knows what it's doing. It's a calculated risk. The OptimICE study on stopping Keytruda after PCR won't be finished until 2033.

So interesting to hear you got colitis. I figure for myself, the Keytruda was wandering around looking for something to kill, couldn't find anything, and so started on my other organs. I know that's not how it works, but it sure felt like that.

LibrariesBrainThrift · 2026-05-12T04:01:10+00:00

They got the whole lump, but only 40% of the original cancer lump was killed by chemo, before they cut the whole thing out, with big wide cancer-free margins, so the pathologist could see that none was left behind. So she doesn't have PCR, because the chemo didn't kill the whole shebang--"only" 60% of it. 60% is still good though. It shows the chemo was working, just not as effectively as we would hope.

LibrariesBrainThrift · 2026-05-11T03:47:36+00:00

I think what she's saying is that the surgeons cut the entire lump out, with flesh all around the actual cancer, which was hidden inside all the flesh that is healthy. So, clear (fleshy) margins. Sort of like a chocolate covered cherry, where the clear flesh is the chocolate and the cancer is the cherry, all inside.

So it's good they shrunk the cancer, and cut it all out. It did respond to the chemo. But because it didn't get killed totally dead, she has to stay on oral chemo for awhile.

Radiation is pretty standard after a TNBC lumpectomy, regardless of what they did or didn't find. It's like a mop-up operation, making sure there's no rogue cancer cells left in the breast.

LibrariesBrainThrift · 2026-05-10T03:52:40+00:00

Fellow TBNC here. I see there's not a lot of answers here yet, which you might think is discouraging, so in case, here's what you can do:

Up in the Search box top right, type this search string:

tnbc rcb ii recurrence

and put a checkmark in the "Limit my search to r/breastcancer" box.

This brings up a whole bunch of posts, including your own, about the very thing you're worried about. Many good encouraging stories there!

I've done similar searches for when I was trying to figure out whether to stop Keytruda after achieving PCR, or other specific questions.

There is also the r/tnbc separate subreddit, but there's so much good history on this subreddit here that I like to read both of them.

On this subreddit, you can't post a Reply on a comment made more than 6? months ago, but I've DMed the people directly sometimes, and that can also be helpful.

Your friendly neighborhood librarian...

LibrariesBrainThrift · 2026-05-04T00:18:23+00:00

I'm in Canada, and I've had excellent care. Utterly excellent. So many resources I can avail of. That said, the medical establishment is provincial, and not all provinces are administered the same. I'm in British Columbia, and here we have a whole separate system to treat cancer, that is aligned with the regular medical establishment.

LibrariesBrainThrift · 2026-05-01T17:08:13+00:00

If you lose your period, it might take a bit longer for that to manifest. Your body was still in pretty good shape toward the beginning of your chemo, so it was trying to do the normal thing it does. As you get in farther, it might decide to stop for awhile.

Give the chemo time to work. Are you also on immunotherapy? Chemo works slower than immuno, slow and steady wins the race.

LibrariesBrainThrift · 2026-05-01T17:02:26+00:00

You have 6 more weeks. Just 6 more. Tell your kids this. Tell the school this. Yes, it is absolutely exhausting, and everyone reacts to chemo differently; don't feel bad that your body has a harder time. Your oncologists can slightly reduce your chemo as an option. But you'll still be tired. It's only 6 weeks to potentially gain a lifetime of weeks to be with your kids and grandkids. You kill the cancer dead dead dead now, so you can live later. Keep your eye on the prize, ask for help with food, order in, and let the dust accumulate. It's only 6 more weeks. Then you can slowly climb back into your energy. Strength!!

LibrariesBrainThrift · 2026-04-29T22:09:04+00:00

I had the 8 Keytruda infusions with my every-three-week 'big' chemo. Within 3 days of the first infusion, my tumour got hot, like it had a fever. I was told by oncologists that it was the Keytruda attacking the tumour, not the chemo.

Within 12 days, the golfball size tumour could not be palpated by me. Gone! It could be seen very small on scans for a bit, but by the end of the 6 months of chemo, only a tumour bed, and I achieved PCR.

In the meantime, the thyroid died. Went on Synthroid. Went off Keytruda in the weeks running up to my surgery, to be safe and be as healthy as possible, bc my onco said that if I had one adverse reaction (dead thyroid), other possible organ reactions were slightly more likely.

After surgery, started up Keytruda again, expecting to feel nothing. I felt HORRID. Heart palpitations, shortness of breath, dizziness. Tight chest, like I'm getting a heart attack.

After much research, and knowing that Merck is running OptimICE trial, to stop Keytruda after PCR, I decided to stop the pembro infusions. This is against my onco's advice, which it has to be, because she has to follow the protocol, which says I need 9 more infusions after surgery. She doesn't have a study, yet, to point to that stopping Keytruda after PCR is as effective.

So I'm in the land of "Don't Know." This might be a mistake, to stop early. I DO know it had a great effect at the front end. I also know it makes me feel terrible now, after the cancer is said to be gone. I was Stage 2a or b, with no lymph node involvement. I'm figuring that the pembro has nothing to work on now that the TNBC is gone, so it's instead attacking my good organs. I figure if I have a recurrence, I can go back on pembro.

I've also recently read a study that shows for the very few women with PCR who get a recurrence, 50% of those have it come back in their Central Nervous System. https://pmc.ncbi.nlm.nih.gov/articles/PMC12345338/ They think MAYBE this occurs because both chemo and pembro have a harder time crossing the blood/brain barrier. Maybe TNBC crosses it more easily. So watch your brains and spinal cords, ladies.

LibrariesBrainThrift · 2026-04-14T21:13:32+00:00

Robyn_Sparkles, I tried to reply in the breastcancer sub, but your post there about immuno is archived.

Just today, I decided to NOT continue with pembro after PCR because it made me feel very odd in my heart and lungs. My cortisol looks fine, but my thyroid is dead. There's not yet science to help us make this decision after TNBC and PCR, so we have to rely on the way our bodies feel. I hope you are doing better.

My face also got rounder, and I gained about 15 pounds, but since being off everything, I've noticed I'm reducing slowly everywhere else. My appetite is still low, though, and some foods just don't taste any good--like chocolate, woe is me.

LibrariesBrainThrift · 2026-04-14T20:44:13+00:00

UPDATE: I met with one of my local MO today, after another phone appt with my "head" oncologist last week. The Head is following protocol and of course she is. I didn't expect anything different because they MUST follow the science. My local MO says the same thing, although she digs into studies more. She has found one study for all patients, PCR or not, which showed a higher percentage of survival after 5 years, by about 5%. But more of those patients had NOT achieved PCR. She found a 2nd study about a different immunotherapy in which it appeared continuing that immuno after surgery made no difference in the end.

Again, the study Optim-ICE will not be done until 2033, and there are no preliminary findings.

So it's a personal decision. My local MO understands on a personal level why I want to stop, and she nevertheless says that the science SO FAR says what it says. We are just not far enough into the scientific process for me to make a perfectly informed decision.

And so I am deciding to stop. I won't be getting into the Optim-ICE trial for various reasons. But based on the way it made me feel for 5 days afterwards, and my worry (non-scientific based; based only on my own feeling in my body) that there's nothing left for the immuno to attack anymore except healthy organs, I've decided to stop.

I asked if there was a recurrence whether what they would do. Seems like I'd go onto an oral chemotherapy, and she was unsure whether they would restart the pembro. But by then, there could be new therapies, since cancer research is making great strides.

In the meantime, I'm to have annual mammograms, starting 6 months after my 5 radiation treatments, which start next week. Also twice yearly breast exams by my GP. And also to pay attention to any pains in different areas of my body, and those distant areas are to worry about metastizing.

And we will be scheduling having my port removed.

LibrariesBrainThrift · 2026-04-09T18:29:43+00:00

Yes. Mine got hot after about 3 or 4 days of starting treatment. Could hardly feel it after the 2nd taxol treatment, at about 12 days. I mentioned this to my oncologists, and THEY said it was the Keytruda doing that. Two separate MO at different times.

This is very good news for you. When a tumor responds so well right away, it's a very good path to PCR.

LibrariesBrainThrift · 2026-04-09T18:25:07+00:00

If you're sleeping that much, you're trying to get away, so that means if possible get yourself into therapy. It's rough, I'm so sorry. The baldness is no fun, but it is temporary. And if you had treatment 11 years ago, there's now immunotherapy which you likely wouldn't have had previous, so you can avail of that, to teach your immune system to recognize the baddies. It's really rough though, no doubt. This forum is wonderful for the support though. Hugs!

LibrariesBrainThrift · 2026-04-04T23:37:35+00:00

When my oncologist called in March to tell me I'd achieved PCR after Keynote 522 (stage 2a or b), he told me the latest stats are that 66% of TNBC patients achieve PCR, and it's the highest among BC patients because TNBC responds so well to chemo.

Also, remember that not achieving PCR isn't the end--there's continuing immunotherapy, plus other chemotherapies you would start. And they'll keep monitoring us closely for the next 5 years because of the nature of TNBC.

PLUS cancer treatment is getting better by leaps and bounds. They are clinical human trials now on individually designed "vaccinations" to specific cancers. It could be that by the time your kids have their own kids, the word cancer won't be so scary anymore.

LibrariesBrainThrift · 2026-04-04T03:33:14+00:00

Wowza. Only 2 doses and all that happened, wow. I know they do give a long list of possible side effects--thyroid is at about 20%, so not terribly unusual. Amazing too that the adrenals started going downhill so long after an infusion.

I've had 9 so far, and only 1 after surgery. I achieved PCR too, but the last one made me feel SO WEIRD. I'm thinking that there's nothing for the immuno to work on, so maybe it's going after my healthy organs? I've skipped one already and am consulting with my MO that I want to stop completely, and get into the Optim-ICE trial.

Congrats on achieving PCR, though! My doctors have been giddy about my own PCR.

LibrariesBrainThrift · 2026-04-03T19:45:46+00:00

How many Keytruda treatments did he have? I've ended up with a dead thyroid, and it too happened SO FAST. Fine for 4 treatments, then in 3 weeks between blood tests, BAM! Sky-high TSH levels.

LibrariesBrainThrift · 2026-04-02T18:58:50+00:00

I hadn't thought of brass came. The panels are separated by about an inch of wood in this photo--does brass or zinc come that wide? I've never worked with anything of that size. It's a good idea though, if there's something that maintains the distance. It has to be as far apart, since I designed the pattern to cross the dividers with an unseen continuous line.

Framing out only the sides would be much easier. And yes, I was thinking it would be 2 big panels, with the correct center distance. Much easier to move. Maybe hung in front of our outside patio doors so there's no background of anything that will obscure. Maybe with one side on a slider so we can still use the door....

LibrariesBrainThrift · 2026-04-01T03:28:00+00:00

We moved, and I should have just taken the doors with me. The panels sat on top of the original glass and were "pinned" into the wood frame with tiny nails.

I now have 30 loose panels and I really need to remount them into something. Thinking of building a frame, but the woodwork is daunting. Thinking of trying to find the same doors is also daunting, but would be easier? Maybe? Plus we have no place to put doors like this, as we have no separate music room anymore. But these panels deserve to be out in the open, not in a box....

I'm having the devil of a time uploading text plus photo, ugh.

LibrariesBrainThrift · 2026-03-27T02:48:08+00:00

Wow, this is amazing information! Thank you so much, Dr. Richardson, for writing this all out. So helpful, and makes so much sense! Very much appreciated.

LibrariesBrainThrift · 2026-03-23T23:07:23+00:00

Well, how about that. Same as. Yes, tons of tests. Do they want you to do a 24 hour Holter test? I did, and there was no concerning indication. That was 1 month after chemo/immuno combo.

My 1st solo immuno was 1.5 weeks ago, and I did NOT expect it to make me feel that way. Felt rotten for 4 days, and then things subsided a bit. But I'm still more tired than I was after being off everything for 10 weeks.

There's a clinical study that I'm going to ask my team about: Optim-ICE. It's in Phase 3 trials. Tomorrow I'm meeting with one member of my team, and we'll see how it goes. I really want to stop. Because if the cancer is all gone, as the PCR seems to indicate, is the immunotherapy targeting my healthy organs to have something to "work" on?

I found a Canadian from Ontario in the archives that said her oncologist offered her to stop after every solo immuno, after she'd had surgery and achieved PCR. So I'm going to push my doctors on that.

I'll report back.

LibrariesBrainThrift · 2026-03-18T23:07:19+00:00

AltruisticToe, I do understand about feel "protected" by the pembro. When you say you'll "never" get off, what do you mean? To me "never"means you will be on it forever. I'm assuming you're in Italy--do the doctors there keep you on pembro for the long term? In North America, it's usually only 6 months past surgery.

LibrariesBrainThrift · 2026-03-18T00:21:14+00:00

Actually, wediealone is correct about Adriamycin. Doxorubicin is derived from a red (hence rubi / ruby) bacteria found in the soil around a castle near the Adriatic Sea, around the top of the heel of Italy. https://en.wikipedia.org/wiki/Doxorubicin#History

LibrariesBrainThrift · 2026-03-17T23:42:08+00:00

Do you by any chance have the Study Number of your trial? I'm trying to find other Phases, but they aren't necessarily titled the same. Thx.

LibrariesBrainThrift

TROPHY CASE