It's wonderful that you're reaching out to connect with others who share a similar diagnosis - finding community members with triple positive breast cancer can provide valuable support and shared experiences. Many people in this HER2+ community may have insights to share about navigating this specific type of breast cancer, so hopefully you'll hear from others who can relate to your journey.

I do! Stage 1b grade 3. Idc in right breast. Dcis in left. Did 6 rounds of TCHP. Had bilateral lumpectomy. 12 lymph nodes removed from right side axilla. Doing 22 rounds of radiation now. Will start drugs for the hormone part of this, after radiation. I still have 10 rounds of Herceptin and Perjeta to go. I started those infusions back up after my surgery. Ask me anything. I’m glad to chat!

Hi Melissa, my tumor was in my right milk duct gland with a bit spread outside of the gland. I had 6 rounds of Chemo starting in March and ended in June. I was supposed to continue having the Phesgo injection part of my treatment for a full year. I would be getting Phesgo every 3 weeks and finish up some time next year. The Phesgo injection is used specifically to treat the HERS2+ part of my cancer. Things went well until about the 2nd week in July and even though I was no longer receiving two of the chemos through my port because I had completed the 6 treatments, explosive, watery diarrhea hit me. It’s uncontrollably usually 12 to 16 times a day. Over the counter and prescription antidiarrheal meds don’t touch it. I’ve lost 20 lbs in less than a month. I’ve had 2 ER visits since 7/19 the first lead to 4 nights in the hospital. I’ve had 2 CT scans, 2 stool specimens checks, 2 chest X-rays all in less than 2 weeks of each other and the doctors only tell me they see mild colitis but won’t treat it until I see a gastroenterologist. I don’t have an appt with a gastro doctor until 8/31. I had chose to have both of my breasts removed without reconstruction and that surgery was done on August 10th. I haven’t had a Phesgo injection since July 10th as they don’t want to continue with the treatment her HERS2+ until my diarrhea is under control. It’s concerning to me because the doctors can’t give me a response as to what is causing the severe, uncontrollable diarrhea. Have you heard of a breast cancer patient dealing with this before? Prayers for you and your road to recovery!

Hi Lisa! I heard Perjeta causes that. When I first saw my oncologist I left thinking “could he have mentioned diarrhea anymore?”. I mean he said diarrhea like 100 times. My husband (being a funny guy) asked if he needed to install handles on the toilet! But luckily my diarrhea hasn’t been bad. I had it during TCHP but since just doing the Herceptin and Perjeta (which is what is in the Phesgo shot you get/got) I haven’t had an issue. The reason I opted to do the infusions and not the shot was because my oncologist said people have complained about getting a reaction at the injection site. So since I already have a port I was like why not just keep getting the infusions?! I haven’t personally known of anyone else that is doing the regimen that you and I are. I have read of people online saying they struggled with diarrhea. And some that have said it caused ER visits but i haven’t spoken to them personally. Goodluck!! Sorry to hear you are having such a bad reaction ):

Hi, Lisa! I have triple positive invasive ductal carcinoma. I’ve completed 5 of 6 treatments (TCHP Chemo) before my surgery which will be scheduled for next month. I had an ultrasound between cycle 2 and 3 (should’ve been after cycle 3 but I had to postpone that cycle due to an infection in my port) and the original mass of 1.9cm had decreased down to 1.1cm. The second mass that was found after diagnosis was originally measured at 1.3cm and it has completely disappeared. After surgery (lumpectomy), I will complete 12 more rounds of chemo and 5wks of daily (Mon-Fri) radiation. The hormone injection that I’m given about 36hrs after chemo has been the culprit of most of my negative effects. After my first chemo, I thought “they gave me a placebo… there’s no way I feel this fine…” then I had the injection (Rolveldon) and the next day, I was ready to give up. The bone pain (mine was in my sternum) was unbearable… the nausea, diarrhea and extreme fatigue have been pretty regular since my first trx. I am happy to discuss any questions or concerns you have!