Radiation + Keytruda Issues
Hi all! Background- I was diagnosed TNBC stage 3C last August at 7 weeks postpartum with my second baby at 33 years old. I’m BRCA1+. I’ve completed 16 rounds of chemo (12 Taxol/Carbo, 4 AC). I’ve been on Keytruda every 3 weeks from the start. I did a double mastectomy with reconstruction- did achieve pCR. I’m 11 rounds into radiation currently- 4 more to go. I’m getting radiation to my reconstructed breast, the axillary lymph nodes, internal mammary nodes, and supraclavicular nodes.
About a week before I started radiation, I started getting an insanely dry mouth. The roof of my mouth also became red and itchy. I noticed it was starting to become painful when swallowing. I have to use a xylitol mouth spray to lubricate my mouth and I can’t eat without taking a small sip of water with every bite to try to get the food down. I’ve had four stand alone Keytruda infusions so far without chemo and steroids. Fast forward a bit, now that I’m 11/15 rounds of radiation in- I can hardly swallow. It feels like I’m swallowing glass. Even water is becoming hard to drink. I’ve already lost over 5lbs from being unable to eat.
I asked both my onc and my rad onc what is going on cause I’m thinking it might be both the keytruda and radiation causing me problems. They both seem surprised by my symptoms and aren’t sure how to proceed? My onc prescribed Nystatin thinking it was possibly oral thrush but the medicine didn’t help at all, I have no other symptoms of thrush so we ruled that out. Rad Onc thought maybe some type of HSV infection since the roof of my mouth is so inflamed and red.. swabbed me for that, HSV negative. Then they thought maybe it was possibly hives? Had me taking Zyrtec but that didn’t help. They told me to take Tylenol every day to help with swallowing pain but that hasn’t helped at all either. Rad Onc is a bit baffled since my issues swallowing started a week before radiation.. but the swallowing issues have only gotten worse so I’m assuming part of this is from radiation. I wonder if I’m also having some adverse immune response to the Keytruda? My theory is perhaps Keytruda caused my body to attack my salivary glands and the dry mouth is causing the painful swallowing.. and now radiation is causing additional throat pain. My onc said that would be extremely rare.
Long story short- anyone here experience any of this? Any insight?! Anything to help with symptoms? Thanks all!!🫶🏼