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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Hi all- I am so glad I found this! I was just diagnosed triple positive and having my lumpectomy in a couple of weeks. I have also been offered the clinical trial (as long as my pathology comes back within the criteria). I have been looking all over for side effects of Phesgo without chemo and this was great to see! I look forward to hearing more about anyone else’s journey! Thanks!
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Hi @cbctn2025! So glad to hear from you. I hope the lumpectomy goes well and the node biopsy comes back negative. Not having to go through chemo is a big plus! Let us know how it goes and give a shout if you have any questions.
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I started trial 12/2924. Had proton radiation left side after denial appeal by Medicare advantage plan as Illinois state retiree. On 12/18 today at Md Anderson. .9cm no lymph node. After 2 injection started dry eyes so using drops ointment and heat while finding dry eye specialist to diagnose accurately then after 3 rd shot and 6th dose Anastrozole tingling in thumbs and 2nd finger. After acupuncture and massage while doing radiation for 2 weeks almost gone. Then went to wrist orthopedic in central il and had to do emg which made it worse and he didn’t get report 10 days after so said arthritis( emg young Dr said neuropathy and carpal tunnel duh) no diarrhea just mushy no heart lung issues. Skin, nose,scalp mouth dry but use products to manage them. Hoping this study shows + results
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Hi beautiful warriors! I am so sorry I have not posted an update. Since I was enrolled in the clinical trial, there were three people. participating, now over 30 women are enrolled - which breaks my heart. Do we really have that many women that have the same type of breast cancer or cancer at all in the same area. 1 in 8 crazy will have breast cancer. 😥
Great news! I've had a dexaScan done. I've had three echograms done. I've had numerous amount of blood work done. All come back as great so I'm very very encouraged. The shots are every 3 weeks only 5 minutes you wait 15 minutes and you are to go if you don't have any issues now.
The wonderful news is that I had first mammogram since I was diagnosed last October. Very nervous. Didn't know what was going to happen but I knew God was going to put me on a path one way or the other. I was very blessed to find out when the surgeon came in that I was cancer-free so she said see you in a year so I know the clinical trial is definitely working because the cancer has not returned. I am in the phase two of the clinical trial and still have 6 months to go so I will update everybody.
Thank you so much for all your support and for us being here for each other. Reach out if you have any anything that I can help you with. ♥️
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@coachg - Thanks so much for the update. What wonderful news about your clear scans and mammogram! So glad the trial is going well. Please keep us posted on how things go. We're here for you!
The Mods
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Thank you so much! I love this forum! It's amazing support for all of us who are battling breast cancer. 🥰💪💪💪💪🙏🙏🙏♥️♥️♥️
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@coachg - We’re so glad you’re here and love your positive spirit! You look amazing!
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Hi Ladies,
I am so grateful to have found this group! I too am in the ADEPT trial. I was diagnosed with Stage 1a triple positive breast cancer on 8/13/2025. I had a lumpectomy on 9/22:2025. I received my first injection on 11/3/2025. I will start radiation on Monday, 12/1, and the hormone therapy will begin after radiation.
So far my only side effect has been loose stool/diarrhea. I started eating oatmeal, brown rice, and applesauce to firm the water in my gut. I also started drinking coconut water. All of this has helped tremendously. I take Imodium if I need it.
This journey hasn’t been so bad so far, but it is still quite stressful. My faith has carried me.
Any side effects with PHESGO/radiation combined?1 -
Yes - with God nothing is impossible and Isaiah 41:10.
God bless.
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