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Discuss unique challenges of treatment (Herceptin, Perjeta, and Kadcyla) and side effect management.

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Long-term body pain after TCHP chemo treatment - anyone else?

RO

Community Member

11 days ago

Hi everyone, I'm wondering if anyone else is dealing with long term pain after TCHP treatment? I finished 6 rounds of chemo in Aug '25 and am on my last 2 HP treatments (all of it every 3 weeks for a total of 1 year) I had stage2 HER2+ hormone neg breast cancer with no lymph node involvment diagnosed @50 yrs. I had a double mastectomy and was declared complete response/cancer free shortly thereafter. Starting in October 25 (chemo ended August 28th '25) I began experiencing pain in basically my entire body. It was very bad at first, but now is ever present but some days are worse than others. It is manifesting as what I can only describe as body aches like when you have the flu. It's in my upper thighs, my hips, my forearms and upper arms, my shoulders, my wrists and hands feet and ankles along with tingling and extremity numbness. My knees have osteopenia and they HURT. I can't get up off the ground and sitting for prolonged periods has me limping and in pain. I feel like I'm a hundred!! Also now my hands and feet randomly cramp up like a Charlie horse and I find them stuck and painful. Basically my whole body feels sore and achy and locked up like the tin man. I've had blood tests for inflammation markers and a bone density test and they show nothing. I've even now developed severe tendonitis on one wrist which is incredibly painful.Oh, and my scalp feels like it's on fire too! My doctors don't seem too concerned with this but of course I am! Is ANYONE else experiencing pain 6+ months out of chemo? At this point we're just waiting to see if it subsides after immunotherapy ends but as you can imagine I fear it's something serious!

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How do you manage severe diarrhea from Perjeta breast cancer treatment?

CW

Community Member

17 days ago

I am taking the perjeta Kanjinti taxotere and carboplatin and after my first treatment I had so much diarrhea, and when I say diarrhea I mean 15-20 times a day, I lost 10lbs in 3 days and was so tired and nauseous on top of that I had to go in on the 4th day and get fluids and then they adjusted my nauseous meds and got Imodium on board which helped some but I was still going 8-10 times a day so I did that for my first 3 treatments finally I had to do something about it. It was getting so ridiculous and I told them every time I went to the dr and when I went for my appt with my breast surgeon she said I cud come off the Pergeta but I obviously needed to stay on the other three which scared me a lil bit so then I talked to my oncologist she agreed I cud come off the pergeta and then I went for my 4th treatment and the diarrhea almost stopped almost completely now I still went some but nothing like I was cause I was taking 3-4 Imodium daily to keep it controlled. I still get the dry heaves at least once a day but that’s better to since they adjusted my nauseous meds! And after only 3 treatments my tumor shrunk from 5cm to 1cm so I felt comfortable coming off that! I go for my 5th treatment in two weeks and we r going to keep the perjeta stopped for now and see how my tumor does! I still get very tired after chemo but I can handle the tiredness. They said if fo some reason my tumor grows I cud try the pergeta again after im done with chemo and maybe the diarrhea won’t b so bad without the other meds. But I’m doing really good now just waiting to finish treatment so I can have my lumpectomy and radiation! But that’s my experience with the pergeta and if any of u r going thru the same thing u might mention that to ur drs. Hope this helps someone. I’m sure im not the only one to experience that. And something else happen to, after my 3rd treatment I went for my one week post chemo checkup that morning and by the afternoon my whole left side of my neck swelled and was extremely painful and they admitted me to the hospital and did a ct scan cause I was so scared my cancer had spread even though I still had had my checkup and I got got those results, and it end up being perotitis which is Inflammation and swelling of the parotid salivary canal glands, typically caused by dehydration, viral infections (like mumps), or bacterial infections. Symptoms include painful swelling in the jaw/ear area, fever, and thick saliva, so I spent 2 days in the hospital getting fluid for dehydration and strong antibiotics then went home on 14 days of augmentim-amoxi- clav And it went down to normal after about 5 days so have any of u ever experienced that? My dr said she had not ever had anyone do that before and we still don’t know what actually caused it! Thx for letting me share my experience! Clarissa

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