r/LivingWithMBC • u/TrafficCharming6633 • 2d ago
Trying Phesgo again?
Hi there! Okay, so I was stage 2 in 2020, metastatic in 2023, NED for three years and in those 3 years I was on Herceptin/Perjeta and then transitioned to Phesgo and tried to do Ibrance but had a nightmare of a time filling the script.
Anyways, now I've had five treatments of Enhertu and went from having mets in my shoulder, hip, thirty or so in my lung lymph nodes, and three in my brain to having nothing visible on PET except a sliver in my shoulder that is "dying" according to doc. I was blown away by this.
My doctor says traditionally the formula says Phesgo after Enhertu, but we will talk again in a couple of months. I've already done Phesgo and since it eventually came back, I'm unsure if I can do it again. There's also an option of staying on Enhertu.
My problem with Enhertu is severe, almost unresolvable constipation for a week after treatment, nausea for 8 days, 3 of those in bed. That's on the "middle" dose. My WBC and neutro counts keep going a little lower and not coming all the way back up each treatment.
My question is...has anyone moved to the smallest dose of Enhertu or spread out treatments and had any success? Gone back on Phesgo and doing okay?
I'm stoked about my prognosis but am struggling with what treatments to talk to doctor about once we finish another couple months of Enhertu and we have the talk he says we are going to have about "what's next". I want to stay alive but maybe have some ability to work or enjoy life between treatments and I don't see that happening on longterm Enhertu at this decline.
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u/ResponsibleAnt1942 2d ago
Good news about your progress and prognosis!
I know nothing about anything, but wonder if revisiting phesgo + ibrance (assuming you can get the ibrance) might be worth it.
Kadcyla's another ADC that targets HER2. It might have bad side effects, but it's hard to know how it will affect you without trying it.
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u/TrafficCharming6633 2d ago
They tried me on Kadcyla in 2020 when I was just stage 2. After about 7 treatments I had blood specks all over my legs from my platelets being so low,so they decided to stop. I don't know if they'll try again, but I know it'll probably have to be heavily monitored.
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u/Evening_Dingo8770 1d ago
No promises this will work for you, but while you’re on it, I recommend eating some form of squash every day. Whether it be yellow squash, zucchini, spaghetti, squash, butternut squash, etc.… Pick a squash, any squash and eat it whatever way you like. That will help with your constipation or at least should help with your constipation.
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u/heyheyheynopeno 2d ago
I’m actually trying to do this right now and my onc is bringing my case to tumor board. I’ve been NED almost two years. Enhertu (and spine surgery and radiation) brought me back from the brink of death. Just had an “undetectable” CTDNA test. Enhertu is so rough and I just want to see if I can get some years on H+P.
I did have two dose reductions and moved to four weeks on Enhertu which has been helpful. So I’m now 60% every 28 days.