Am I being ridiculous?

MrsThetiger

I just had my last of 6 rounds of chemo with docetaxel, carboplatin, herceptin and perjeta Friday. Was told (she wrote it on a price of paper in vivid orange ink) that I would get a break before surgery. Now they want to keep me on H&P during and after surgery. Maybe also during Radiation. This probably means no vacations. I can’t see going away and paying to stay somewhere nice and being sick from the H&P.

Is this schedul normal? I am being a bit of a baby about this because I broke my foot last spring on trip to NYC and then had to cancel a trip to France with the boyfriend. As soon as the foot was better I got the IBC diagnosis. I have not had any kind of vacation in over a year between the broken foot and cancer. They don't think the foot was METs. (I am not so sure as this is a recurrence.)

My skin involvement from my IBC looks and feels much better but there's still something palpable in there.

Is it nuts to want a vacation? I have worked/teleworked through chemo. This last round was pretty terrible with stomach cramping and Imodium the only thing keeping “the big D" kind of under control.

WC3

MrsTheTiger:

Some people get diarrhea from the Perjeta but other than that, you should not be sick on Herceptin and Perjeta only. They are not chemotherapy but targeted therapy. Herceptin is synthetic monoclonal anti bodies that attack HER2 receptors (switches that trigger cell division when flipped on) and Perjeta prevents HER2 receptors from being activated by HER3 receptors.

They used to stop H & P infusions for surgery out of concern that they would delay healing but many health care providers now believe that it is safe to continue them through surgery.

LoriCA

The standard of care for early stage HER2+ calls for one year of Herceptin (with or without Perjeta), and yes that is typically without a break. I think you'll find that once you get over the effects of the chemo, the H&P alone will be much easier to tolerate. The biggest side effect for most people is some fatigue (and the constant drippy nose), but many women have no problem maintaining an active lifestyle (gym workouts, marathons, etc) on Herceptin/Perjeta. I spent ten days camping in Wyoming while on H&P, I just planned my vacation around my infusion schedule. If you have a problem with Perjeta and D, maybe you can get your oncologist to skip just the Perjeta before your vacation. Since you say this is a recurrence and it is IBC, I doubt that your doctor would be willing to skip both drugs.

Bone mets typically occur in the large bones, so it would be highly unusual for them to manifest in a foot bone. I have extensive skeletal mets and they don't even bother to do PET scans below mid-thigh because it's so rare to see mets in hands/feet. If you have a recurrence of IBC I would expect them to do staging scans before they determined your treatment.

MrsThetiger

Perhaps recurrence is not the right word. I had Pagets in 2017. It was Her+ Er- PR- and they said it was DCIS. Took my entire nipple. Got clear margins. Did a reduction on both breasts and a lift so things would be even.

This new funfest is in the same breast but this is ER+ and HER+. Came on soooo fast and my breast got huge red, patchy, hot, orange peel looking in a few weeks. I walked in, told her I think I have IBC and she said I am sorry I think you are right. Had a biopsy within a week. I thought it was scar tissue until my arm started going numb and realized my armpit was full of fluid too and then I went on the Internet and scared myself half to death.

I am only 52 and was in fine shape routinely walking 3-5 miles before I broke my foot. Chemo has absolutely killed me. I don’t know how anyone is doing anything post-chemo. I can hardly walk up the stairs. I have anemia and already had one transfusion. May need a second one.

I really hope the HP turns out to be easypeasy. They seem to blame the Perjeta for everything.

MinusTwo

Mrs - I agree with the previous posts. You should stay on the Herceptin infusion every 3 weeks for the rest of a year for sure. I dropped the Perjeta due to the big D since I'd already lost 60 lbs that I couldn't afford to lose. As long as you tell them not to 'push' the Herceptin at a fast rate, your side effects should be minimal. Make them stick with 45-60 minutes. Once you finish surgery & rads, you can plan your vacations in between.

Moderators

Hi there, MrsThetiger-

We want to welcome you to BCO! We certainly understand your frustrations, and no, it isn't nuts to want a break from all of this! You got some good advice here, so it might be a good idea to talk to your doctors about working with you to plan a trip around your infusion schedule. And as others have mentioned, hopefully you won't have as many negative side effects with just that combo!

The Mods

WC3

MrsTheTiger:

It took me 4 months post chemo to start to feel my energy was coming back and 8 months before I felt "normal" again. That coincides with my CBCs returning to the normal range. I might have recovered a little faster but I guess I bled a lot during my exchange surgery and my CBCs tanked again. I lost most of my muscle mass during chemo and have not built it back yet. I am 13 months PFC and just got a gym membership to work on that.

blue22

I totally understand your desire for a break. I thought I would be done everything but hormone therapy by now, but that is not the case. My tumor changed to HER2+ and now I get Herceptin for a year as well as more chemo once I am done with rads, on top of hormone therapy.

It is exhausting. I missed a vacation last year for personal reasons, then nothing this year because of treatment. I hope that I tolerate the chemo coming up well enough that I can do something. I think the HP is tolerable, the D is not so bad. I have had GI issues all my life, so I just shrug my shoulders at that.

MrsThetiger

Thanks to all who responded. WC3 really valuable info about how it went for you. I think I will ask to have a transfusion if my counts don’t build back quicker than that.

I’ve decided to try the first round and see. My doctor doesn’t live my life and just because I fill out her dumb scales once every three weeks doesn’t mean she’s she knows me. I am stuck in my home, afraid to go to Thanksgiving at my boyfriends relatives. It’s no way to live. The bottom line is I think she thinks I am hysterical and a bad patient for daring to question her. I need to find a different doctor. Blue22, what extra chemo are you getting?

MrsThetiger

An update: I woke up today with a weird quarter sized blotch about inside my arm at my elbow-pit near where you might give blood. But I have not given blood from there in weeks since it’s near impossible to get blood from.

Went in, met with the MO. She said I could skip the Christmas week HP treatment and go on vacation because surgery is 11 days later and then the tumor it will be out out. We will resume H&P after surgery or if incomplete response we go to something else.

My platelets are fine and my RBCs only mildly anemic. No reason for the blotch. No diagnosis of the blotch. Strongly considering a new Dr if the blotch does not go away.

In my brain the blotch is skin METS since it looks like the big blotch that was on my left breast that I kept thinking was just my underwire causing some irritation. She did not diagnosis it, say it was a bruise or say not to worry about it. She did not suggest we’ve biopsy it.

It’s under the skin. A cluster of red and purple to dark purple spots that blend together in places. All smaller than a pencil eraser. Some more like a sharpie marker dot.

WC3

MrsTheTiger:

I had some bleeding under the skin recently but my platelets are "fine", meaning within normal, but they are near the low end of the range and they can fluctuate significantly from day to day so maybe they had been low at the time of the bleeding. I guess I would rather have a bit of bleeding than blood clots from the Tamoxifen though.

I never asked for a transfusion so I'm not sure if my MO would have given me one or not but I think she would have preferred I just recover naturally, which I did. Transfusions are not without risks.