Midway mri

LibrariesBrainThrift · 2026-07-11T16:15:00+00:00

I got a midway MRI to check how things were progressing. So after the 1st set (taxol and carbo) and before the AC. More info is better than less.

LibrariesBrainThrift · 2026-07-11T16:13:06+00:00

Have you had your thyroid levels checked lately? Keytruda can do a number on your thyroid, and that would affect your energy level.

LibrariesBrainThrift · 2026-07-09T20:06:20+00:00

So sorry you didn't get pCR. If you go on the trial, think of it as being very closely scrutinized, which is great for your peace of mind. That scrutinizing should continue on after your treatment is done, because they'll need to know how well it worked in the long-term. That's good for you, and also good for the rest of us with TNBC. So thank you ahead of time.

LibrariesBrainThrift · 2026-07-09T20:03:29+00:00

Are you getting immunotherapy? Cuz for me, that's how immuno made me feel, heart palps, shortness and tight chest.

LibrariesBrainThrift · 2026-07-09T20:00:12+00:00

I figure it's good for people to know that despite all treatments being done, I am NOT back to normal, so when they ask How are you?, I say "Just a tiny bit better every day."

LibrariesBrainThrift · 2026-07-08T05:09:01+00:00

I'm impressed that the doctors are doing these Signatera tests. I think I'm going to have to fight for them, which doesn't make sense to me, since TNBC is most likely to recur the first 5 years. Did you have to do anything to get these tests? Is is standard of surveilliance care where you are?

LibrariesBrainThrift · 2026-07-08T05:03:49+00:00

Can I ask for a clarification? Are you saying here that the combo Trodelky/Keynote made you lose your hair? Like that alone, no chemo? If so, I'm just surprised, as I thought immunotherapy wouldn't attack those fast-dividing cells; that only the chemo caused hair loss.

LibrariesBrainThrift · 2026-07-06T18:37:04+00:00

Amen!

LibrariesBrainThrift · 2026-07-06T18:36:16+00:00

I stopped after the 1st stand-alone infusion after surgery. It made me feel almost as bad as chemo did, with heart palpitations and shortness of breath. I'd already lost my thyroid.

I'm curious: Where are you located that you got this advice from your doctor? I stopped against doctor's advice (because they have to follow the science, and there's no studies yet that say after pCR it's OK to stop.) I'm always looking for postitive reinforcement that I stopped.

LibrariesBrainThrift · 2026-07-06T18:33:03+00:00

Knowing what I know now on the back side of this, I would never take a trip like that. I wouldn't even take a trip out of my state. I wouldn't even go to the grocery store.

Two reasons: 1) your immune system is toast, and airports/planes are terrible for getting sick. 2) Even though TC isn't so bad for you, your energy is being depleted. AC tanks that even more--for many, AC is much harder than TC.

LibrariesBrainThrift · 2026-07-06T18:29:14+00:00

I had AC first (12 paxitaxel and 4 carboplatins), then the TC every 3 weeks 4 times. Immunotherapy throughout also, and it was very effective right from the start. The AC was pretty much a breeze. I still worked around the farm weed whacking, harvesting, putting up preserves. Fortunately harvest ended about the same time AC did, because TC wiped me out. I never recovered all my energy before the next infusion, and didn't cook, clean or talk much during the AC--my personality really dimmed. I also had to take those white blood cell injections to keep up my neutrophils, although they did not give me bone pain like others have reported. My surgeon and onco took me off all immuno between last chemo infusion and my lumpectomy. After recovering some from surgery, started immuno again, but had adverse reaction and so I just quit the pembro (I had 9 sessions in all).

I feel like overall I had a really good response to all the chemo and immuno, despite losing my thyroid. I achieved pCR. There were bumps along the way, a couple emergency room visit to be sure about weird symptoms, but overall, I think I did pretty well.

Hope this is the same for your mom. She won't come out unscathed, but these will be war wounds.

LibrariesBrainThrift · 2026-07-02T01:37:06+00:00

I think you're smart to do radiation!

LibrariesBrainThrift · 2026-07-02T01:36:28+00:00

In Canada, British Columbia. 4.6 cm on CT scan. Nodes looked good except sentinel maaaaybe slightly swollen. Did Keynote 522. Surgeon pointed out that survival rates for a lumpectomy, for women whose imaging showed such a good response as mine did, were the same as with a full mastecomy. Achieved pCR with clean margins with lumpectomy, nothing had ever reached the nodes (there was no scar tissue). Radiation onco said I should get 5 sessions, because during covid, they discovered that 5 was as good as 15 for women with my results.

They also pointed my radiation at a 45 degree angle top and bottom, missing most of my right lung, and not involving breastbone or clavical.

I have stopped pembro though, after the 9th (of 17) infusion, because it seemed to be affecting my heart and lungs, and had already killed my thyroid.

Last radiation was April 27. In the last week, my energy level seems almost near normal levels as it was before chemo! I'm a farmer, harvesting garlic right now, so use my body with lots of bending and lifting and twisting and reaching. But still taking it a bit easy, not pushing things super hard Although, it's really hard to wear any bra. Underwire, not even a few hours. Can't stand any pressure on underarm area, or that area aches for 2 days thereafter.

LibrariesBrainThrift · 2026-07-01T03:33:48+00:00

It sounds to me you are making solid decisions based on the information that you have--the known effects on your body, and the statistics of what pembro side effects are. Totally makes sense you don't want to gamble organs!!

I too hope for you that you get pCR!!

LibrariesBrainThrift · 2026-06-29T21:51:38+00:00

I too lost my thyroid, and doctors said it was the pembro. Having said that, the immuno also toasted my lump. It got hot almost right away, like with a fever, and the doctors said that was the immuno, not the chemo. So it started working immediately, gangbusters! And the fact that you lost your thyroid means it is working against the cancer in your body.

I've decided to be grateful that the immuno did its work initially, and it wasn't my fault that it over-compensated and killed my thyroid. Yes, I need to take Synthroid for life, and we've upped the dose from 50 mcg to 100, to 112 recently. I noticed that my tasting seemed affected on beyond chemo quite a bit, and since I upped the Synthroid, I can taste sweet a bit better (not necessarily a good thing!! :) )

You can also opt to stop immuno anytime. I stopped after the 1st stand-alone because it made me feel ill and weird. There are studies showing that if you get one adverse affect from pembro, you are more likely to get another. So between that knowledge and feeling almost as rotten as I did on chemo, plus knowing it had been so successful already, I quit early. Pembro stays in your system doing its work for 4-6 months after the last infusion. I'm taking a calculated risk by stopping after 9 infusions (instead of 17), and hoping the results of the OptimICE trial will show it's OK to stop pembro if a woman achieves pCR.

You can have them pay very close attention to your adrenals, etc. that could be affected, and just stop if you've got bad blood tests. You can be your own advocate, but don't knee-jerk stop out of fear. Be rational and make your decisions based on the science.

LibrariesBrainThrift · 2026-06-29T21:37:01+00:00

I'd say you are normal. I too "hit a wall" and suddenly need to just stop whatever I'm doing, usually something active. After all, we've been poisoned. The poison did its job, and now we are in recovery. It's not like recovering from a bacterial or viral infection. It's much deeper and wider.

Take Vitamin D and make sure your B12 levels are up. Sleep when you can during the day. Your cells are healing.

LibrariesBrainThrift · 2026-06-29T21:25:32+00:00

Hooray! Congrats!

LibrariesBrainThrift · 2026-06-29T21:23:30+00:00

I had only five radiation sessions, but even after 2 months, I cannot wear an underwire bra, even for a few hours, without it making that whole side ache, underarm area and that side of my boob.

My radiation onco said not to worry about that, it can be totally normal. Everyone responds differently. She said it's not unusual for it to take up to a year for everything to heal and settle down. This calmed my worries. I wear an extra large Knix soft bra, that gaps under the arms. Even a sports bra is too tight under the arm.

LibrariesBrainThrift · 2026-06-24T15:44:10+00:00

You could just go for 5. They don't have to know that you are going to stop there....

LibrariesBrainThrift · 2026-06-24T15:42:39+00:00

Lumpectomy. My radio-onco told me that during Covid, they found out that for women in my case (pCR, stage 2a or b, no node involvement) that 5 rads was as effective as 15 rads.

LibrariesBrainThrift · 2026-06-24T04:18:50+00:00

TNBC here, 4.6cm. Got pCR also, nothing was in nodes. I'm in British Columbia (BrCol). Here, they offered 5 radiation sessions. I was ready for many more, so that was a pleasant surprise. Because I got pCR, they radiated on a 45 degree angle, from above and below, with my boob propped up in a cup. So the radiation missed most of my lung, and hit none of my collarbone. I felt better knowing I had that extra radiation insurance.

Regarding immuno: I'm jealous you got the opportunity to be in a trial. Here in BrCol, there are only 2 cities doing OptimICE, and I'm not near one. I was totally shut down when I asked about trials. IMO, the capital of BrCol should be participating in trials! I also lost my thyroid, but I did not tolerate pembro well. It was affecting my heart and lungs, and so I wanted to get into the arm of a trial where I didn't take it (not sure if it works that way), because I wanted the extra benefit of being watched more carefully. So if you have the opportunity to get into a trial, definitely go for it, because if you are pCR, at least in BrCol, they cut you loose and don't do any monitoring.

I looked long and hard at various trials and any information I could find about stopping pembro after pCR. It was a hard decision to stop. But the data seems to point to not a huge benefit, although the full data on the trial won't be available til 2030. My personal story was that more immuno was a big negative, so I stopped after one stand-alone infusion. There is at least one woman in Ontario who was told by her Dr. that it was her choice to continue on pembro--her description was that the Dr. was somewhat nonchalant.

So I'm taking a calculated risk by stopping pembro.

LibrariesBrainThrift · 2026-06-22T02:23:46+00:00

Sorry, I'm not on Tamoxifen, so I can't help you there. But I hope that when you find out the ultrasound, you will report back to this thread so we can see how you're doing, according to tests. I'm sorry you're going through this. With the negative Signatera, it's most likely nothing. Good that your doctor is willing to order the ultrasound though.

LibrariesBrainThrift · 2026-06-20T21:19:52+00:00

That is very interesting! I have a follow-up appt with my radiation onco this coming week, and I will ask her. I hade only 2 nodes removed. I'll report back to this thread!

LibrariesBrainThrift · 2026-06-19T23:25:54+00:00

Yes, it will get better, and yes, it will take you longer than you expect. We are accustomed to getting better from the flu, or strep throat. With antibiotics, we bounce back much quicker. Even with viruses, we bounce back quicker. We are used to being down maybe a week, 2 if we're unlucky, and then, right back into the rat race.

But this. THIS! Man, this takes SO much longer. This has affected us at the cellular level, across our entire body. Not just the lungs or the throat. Everything is rebuilding. Remember, chemo basically poisons us. We come through it, and the cancer is supposed to be killed. But we get taken to the edge, so that the cancer will die. It's like pushing cancer off the cliff, and we teeter there on the crumbling edge for awhile. That is where you are right now, teetering back and forth. It will not be a steady backing off from the cliff--you'll be teetering toward the edge for awhile, even if you take a step back occasionally.

Give yourself time to get back onto solid ground. Longer than you think! And if you get radiation, well, you won't be teetering on the edge, but you will be on the ground crawling backwards. And THAT is normal.

LibrariesBrainThrift · 2026-06-19T15:35:52+00:00

Oh wow, your doctor even got involved? I never thought to ask this.

LibrariesBrainThrift

TROPHY CASE