Phesgo - Clinical trial
Hi everyone! New here. I am enrolled in the ADEPT clinical trial for women that have breast cancer that is invasive ductal carcinoma stage 1 triple positive. I refuse to do chemo for a small tumor and stage 1 cancer, so my oncologist suggested that I enrolled in this trial. I started on April 1st 2025 with the PHESGO shots, radiation after two surgeries. Lumpectomy and negative lymph nodes.
I want to connect with other women that are also under the PHESGO treatment for their breast cancer to find out about their experience and side effects.
I am starting the estrogen blocker this week and I'm very concerned about the side effects and how my body will respond. I know we're all in this journey together. Thank you very much for reading my post and for your feedback.
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I was on PHESGO for years and am triple positive, too.
Side effects I experienced were diarrhea/loose stools, itchy skin, runny nose and eyes. The first dose of Herceptin/Perjeta was the worst in terms of itching for me, my body adjusted after a few shots and both the “D” and the itch subsided. Imodium helped anytime I saw some watery stools happening.The runny nose and eyes never seemed to stop. There were times that the site of the injection became red and//or painful, this very much depended on who was injecting me and where they put it. When I started injections, my cancer center always did it on the side of my upper thigh. Then when I moved and changed hospitals, they were injecting me on top of the thigh! I was told that the drug company recommends the top of the thigh and that is how the nurses were trained…but it did not work so well for me. I started to ask to have the injection on the side again and most of the time, the nurse would comply. That was a much more comfortable injection site for me.
The most serious possible side effect is heart failure. You’ll likely be going for an echocardiogram to start and probably at 3 and 6 months. Now, I am metastatic thus I was on H/P and then PHESGO for a total of 7 years. None of my echocardiograms showed any issue with my ejection fraction…which is what they look at to determine if your heart is being effected. I believe the EF needs to be over 55 or 60 in order to continue on PHESGO, but that’s just an estimate I am making. Mine have always been over 60.
Good luck with the trial and I hope PHESGO will work as well for you as it has for me. 🤗
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Hi @coachg!
I'm also in the ADEPT trial and on a very similar schedule to you. I started with PHESGO (4 injections so far) and hormone blockers around the same time as you.
I had a terrible response to the initial loading dose of PHESGO. Lots of vomiting and severe diarrhea starting about 2 hours after the injection. I ended up in the ER due to dehydration. Thankfully, my last 3 injections have all gone much better in that regard.
With my second injection, I had an issue with severe pain across my entire thigh that caused me to limp for 2 days (started several hours after the injection). I did a little bit of investigating and determined that the likely cause was that they gave me that injection too fast. They are supposed to give the injection slowly over 5 minutes so the hyaluronidase can open up the tissue and let the pertuzumab and trastuzumab spread out instead of pooling in one spot. The person who gave me that injection took less than 2 minutes to give the full dose. Ever since then, when I go for an injection I make sure to remind them to take the full 5 minutes. I also put my phone on my lap so we can both see it, and I set a 5 minute timer. It seems to help. No problems with thigh pain since I started doing that.
One other weird side-effect is a lingering discoloration going up my thigh from the injection site. It's about the size of grapefruit and is a similar discoloration to what I'd see if I pressed something hard against my thigh for a while. It happened on the right thigh after the 1st injection. Then nothing from the 2nd and 3rd injections. Then it happened again on the left thigh with the 4th injection. It does fade over time, but even now there is still some residual discoloration from the 1st injection.
Other than that, I deal with diarrhea on a recurring basis, though nothing as bad as what I had after that first injection.
I've only been on Letrozol for about a week now. Like you, I'm very concerned about the potential side effects with that. I'm trying to do everything I can to take care of my health to help mitigate any of those effects.
Hope all is going well with you. Looking forward to reading an update.
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