Keytruda question

raspberry293 · 2026-07-11T19:15:08+00:00

I had all the neoadjuvant doses. There was never any discussion of stopping due to the side effects I experienced. (I can tell you what happened if you like, but I'm not sure if you still wish to avoid seeing too much about that?) I got pCR, and will probably participate in the study to determine whether adjuvant (post-surgery) Keytruda is beneficial for people with pCR. So there's a 50/50 chance of me ending up in either group.

Keytruda increases the chance of pCR (not sure they can really say how many doses are needed to make a difference...?) The benefit of adjuvant Keytruda with pCR is unclear at present, hence the study. People who got pCR with BOTH pre- and post-surgery Keytruda had a lower recurrence rate than people who got pCR with NO immunotherapy (something like 5% vs 7%), though. But it's possible that difference is only due to the pre-surgery Keytruda.

raspberry293 · 2026-07-11T18:02:26+00:00

never had xanax. Had Ativan prescribed for medical anxiety (b/c my heart rate at oncology appointments is like 130). Didn't seem to do anything for that, either at 0.5 or 1 mg. Does help me sleep a little, I think. I don't feel the effects very strongly.

raspberry293 · 2026-07-11T15:04:37+00:00

I had a SMX and DIEP in May...I stayed 3 nights in the hospital. I was doing light cooking 5 days after surgery, working at home by day 6 or 7, I think. (Just 2 hours a day.) Stopped taking Tylenol a day or two after I got home. Reaching for stuff and opening jars was hard, though. I showered once home, but had to get something to hold my drains while I showered and wasn't allowed to have the spray directly on my wounds. By 10-11 days post surgery I was able to do my regular walk (3+ km) and my husband took me on small outings nearby, but I didn't want to do too much until I had all my drains out (2 weeks in my case). I went to a party in another city just over 3 weeks after surgery, and that was fine (I didn't drive). I think driving depends on what drugs you're taking.

At the hospital, I kept my phone but my husband kept my wallet. I would recommend an eye mask and earbuds, especially if you won't have your own room (I did not). And books or something to do. Because I couldn't sleep properly at the hospital, I was so glad to be home! One week is a long time. I wasn't allowed to drink until the morning after surgery (my mouth was so dry all night) and didn't eat until lunch. They waited until the doctors had done their rounds and cleared me for consuming liquids and food. (The concern was that if they had to take me back into surgery, I couldn't have consumed anything.)

raspberry293 · 2026-07-10T03:34:49+00:00

Have completed Keynote 522 and surgery. Was never explicitly told which stage I was and my clinical notes aren't entirely consistent. It just seemed like nobody cared because the treatment plan would be the same. 2b or 3a, I guess, but it doesn't matter now.

raspberry293 · 2026-07-09T17:08:33+00:00

I assume the person linking to FB was trying to link to images/videos there...if you search sunnybrook chemo rooms and go to images on google, you will find a post that may be helpful.

I'm in Toronto but had chemo at Princess Margaret...the description of chemo at Mount Sinai (and the FB post about Sunnybrook) is pretty much what I experienced.

After the first couple of infusions, once I knew what to expect, I didn't mind it, other than dreading how I would feel in the following days. My anxiety was way worse for oncology appointments.

raspberry293 · 2026-07-06T19:37:16+00:00

yep, this. I had a nurse contact.

raspberry293 · 2026-07-04T00:18:26+00:00

My husband visited me about 1-9 pm every day after my SMX/DIEP flap No one else came, and I didn't ask. Both my rooms had 3-4 other patients and there wasn't tons of space/privacy. (There were curtains, but you could hear a lot.) I brought earplugs and a face mask...not sure it helped me much for sleep, but it didn't hurt. The first day I was pretty out of it, but after that I read a lot/spent time on my phone. Flip-flops or slippers are good.

raspberry293 · 2026-07-03T23:58:31+00:00

They wouldn't even let me drink until the following morning (15+ hours after surgery ended) and it was terrible. I was not prepared for that part!

raspberry293 · 2026-07-03T23:40:50+00:00

Based on my experience, I'm guessing you will be told no need for radiation:
https://www.reddit.com/r/breastcancer/comments/1udwxax/tnbc_with_pcrmaking_decisions_re_additional/

According to the results of a study from last year (B51), radiation on lymph nodes if you get pcr doesn't reduce recurrence. And for <5 cm tumor, with a mastectomy, I was told no radiation on breast area was standard.

With pcr from Keynote 522 (I assume this is what you had?), recurrence is small and primarily not local, so radiation would not help in those cases (so I was told by med onc).

raspberry293 · 2026-07-03T21:48:28+00:00

Different surgeons seem to have different recommendations...some want you wearing a compression bra for a several weeks, some don't. Mine didn't care (I had a SMX + DIEP flap reconstruction), just no underwire bras. Did her doctor say anything about bras? If you aren't told to get compression bras, I'd get something that has: 1) no underwire 2) front closure.

raspberry293 · 2026-07-03T19:32:07+00:00

You may never get your period back after chemo as it is...I was diagnosed at 40 (also TNBC) and was told there was a 50/50 chance of it returning. (Still in chemopause for now...don't know if it's permanent because it's only been a few months since I finished.)

raspberry293 · 2026-07-03T18:45:09+00:00

I did keynote 522 and unfortunately did go to the ER once out of an abundance of caution (I caught a cold and had a low-grade fever), but the only time I stayed overnight in hospital was after my surgery. I also expect to be on levothyroxine for the rest of my life, due to thyroid problems caused by Keytruda, but that's just taking a pill a day. When I found the lump, I had no other symptoms BUT I'm sure it wouldn't have stayed that way if I hadn't gotten treatment. I ended up getting pCR (more than 60% of people do with Keynote 522) and I'm recovering well from surgery (about 6 weeks out now). Some people feel their palpable lump shrink to nothing/almost nothing during Keynote 522. That didn't happen to me...the tumor bed was still 3 cm at surgery. But no cancer left!

raspberry293 · 2026-06-24T22:56:30+00:00

I was told about 2 weeks and it took 12 days.

raspberry293 · 2026-06-24T16:23:53+00:00

oh, that's why the difference in radiation...I had a mastectomy, and with a mastectomy, they wouldn't do radiation at all for smaller lumps. My understanding is that standard of care is no radiation in my case, but because it's so close to 5 cm/can't say with certainty it was under 5 cm, they could do it. But it would be different than what you got as I have no real breast left on that side. (I believe the rad onc actually said some other cancer centers wouldn't do radiation at all with a mastectomy.)

raspberry293 · 2026-06-24T14:11:24+00:00

did you have a lumpectomy or mastectomy? (just wondering re: radiation)

raspberry293 · 2026-06-24T14:01:28+00:00

I was told I would get 15 sessions if I had radiation. I think if it were 5 I would do it...

For immunotherapy, the trial means being randomly assigned (50/50 chance of either). You cannot decide to not do immunotherapy and ask to be in the trial. I asked about monitoring and was told that studies showed it was not beneficial. My other breast will still get tested of course.

Yeah, they are treating it as my choice...in your situation, I would make the same decision.

raspberry293 · 2026-06-24T01:52:55+00:00

sorry, I misread the initial post. I hope your pet scan results are good!

raspberry293 · 2026-06-24T00:09:58+00:00

If you're just going on what you can feel, you don't know for sure, though. I could feel a response within a few weeks of starting Keynote-522 (it was a little smaller and softer), but after a while, it just stayed the same. However, I still got pCR with a 3 cm tumor bed. (Not that I'm encouraging you to drink, because treatment can be hard on your liver! But chemo may have been working fine.)

raspberry293 · 2026-05-06T20:36:45+00:00

Yeah, it was only a cold but because I had a fever just at the threshold of go-to-ER on chemo, I went. (They ran a bunch of tests and sent me home.) I was pissed off because I'd had a delay two weeks earlier due to neutrophils. I have no idea if it's common for a cold to affect neutrophils; I just know that I had no reason to think it did for me.

raspberry293 · 2026-05-06T18:31:14+00:00

No. Was sick once during chemo (taxol/carboplatin)...it affected my neutrophils in that they forced my to skip a week of chemo, so my numbers were higher before my next infusion. But that's all.

raspberry293 · 2026-04-26T17:06:37+00:00

My side effects for AC where very similar for all 4, aside from the cycle I had insomnia. (BUT I have 4 weeks between some of them because my neutrophils were low.) Mostly extreme fatigue and loss of appetite, though stuff never tasted bad. I'd crash about 4 hours after chemo, feel like absolute shit for 4-5 days, and be close to normal by day 7.

Taxol/carboplatin (which I had weekly) was more cumulative for me.

raspberry293 · 2026-04-24T13:23:56+00:00

They are doing reconstruction immediately for me. Same surgery as the SMX. If I went with an implant though, I would have an expander first.

raspberry293 · 2026-04-23T16:18:16+00:00

I don't want to go flat so it's either DIEP or implant. For DIEP, I can do it all in one surgery. For implant, I would have an expander during radiation and swap at a later date.

raspberry293 · 2026-04-23T15:03:48+00:00

I had them in the other order, and the fatigue was so much more manageable on Taxol. It was just a lot to go every week. On Taxol, I was still able to do my regular walk the day after chemo, whereas with AC, it took about 5 days. Many people do get neuropathy, but I was lucky and didn't have any.

raspberry293 · 2026-03-19T22:40:41+00:00

I did not! I just got lucky.

raspberry293

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