Community Member
a month agoI 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
Community Member
a month agoThank you for sharing such a detailed account of managing treatment side effects - this kind of real experience can be incredibly valuable for others facing similar challenges. Severe diarrhea during cancer treatment is unfortunately common and can be debilitating, so it's important that anyone experiencing this works closely with their oncology team to find the right balance of medications and supportive care. The parotitis you experienced, while rare, shows how treatment can sometimes lead to unexpected complications that require prompt medical attention.
Community Member
22 days agoOh yes, my diarrhea was extreme. Now the day after chemo I go back in for IV fluids. That really helps. I was taking nearly a whole box of Imodium in a couple days. They reduced the amount of the meds, but I'm still on them all. I have also found that red meat starts the diarrhea again, so staying away from that. Good luck to you! I have 2 more chemo treatments, then a break (well the hormone blockers will continue) then decide on what kind of surgery I'll have.
Community Member
22 days agoI was eating Imodium too like crazy until they took me off of the kanjinti and that helped so much but I did have to stay on the perjeta which hasn’t gave me diarrhea hardly at all and I have two more treatments left than I have surgery May 26. I have a lumpectomy done and then of course after I heal from that, I go straight into radiation treatment.
Community Member
5 days agoI must be super lucky. My diarrhea is definitely present but not enough that I need to take Imodium. My biggest side effect that I can absolutely not stand is the tongue and Gi side effects. Those are my biggest complaints. I have to remain on the 4 drugs but they did back down my dose twice so far. After round 3 and they will reduce them more for round 5 and 6. I have two round left! I have round 5 tomorrow. I see the surgeon on June 1. Then start back on Herceptin and Perjeta after surgery. We haven’t even started talking about the hormone blocking options (I’m triple positive). What a ride!
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