Hate to be a downer but I really need to vent.
So after my mom had her first shot of Keytruda on 5 June, she was hospitalized 4 times for pleural fluid and/or ascites tapping. The fluids in both sites reaccumulated rapidly as if actually worsened by Keytruda or progression. So rapid (~800 ml daily) that our onc decided to keep the initially temporary peritoneal tube inserted so we can drain the fluid daily at home. For pleural fluid though, most likely my mom will be visiting the hospital on a weekly basis to have it drained until it gets better. My mom can still achieve a satisfactory SpO2 but the repeated drainage seems to start taking its toll on her energy level. She is also not emotionally coping it well, waking up to symptoms everyday, fearing if all the the fluids are caused by progression or pseudoprogression.
I have rented an oxygen concentrator for home use. Just when I thought my mom would be home the next day, some ascites leaked from the catheter exit site and the skin turned a bit red. My mom is now staying at hospital for a few more days to make sure there is no infection. Meanwhile, our onc would like to drain the pleural fluid again depending on her scan tomorrow. The fluid was only drained on Thursday...
On the other hand, our onc has been pulling all strings to get a source of MEK inhibitor for when MS status test result turns out to be MSS. We are still waiting for the manufacturer's green light. Even if they yes, it may take 2 weeks for the drug to arrive. I really don't want to imagine what might happen in that 2 weeks without treatment.
So while Keytruda hardly caused any side effect for my mom, all the uncertainty in future treatments and symptom implication are very, very difficult to deal with. Less side effects, but more fear. Every time I look at the pinkish soft tissues in the ascites flowing out of my mom's abdomen via the catheter, I keep telling myself they are dead cancer killed by Keytruda. Our onc also said they may just are, but there is no way to tell.
We have heard a story of immunotherapy working like a miracle after 8 weeks of repeated fluid drainage. This is what keeps me going. This may also be what keeps my mom going. For how long, we don't know.
Supporter to my mom (64 yr); KRAS wild type
2012: DX Stage I, rectal cancer; resection and colostomy, no chemo
5/16: DX Stage III, mets found; right groin lymph node and soft tissue nodules
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid, NO visible tumour on scan
7-12/16: Xelox + Avastin X 6 rounds
1/17: Clean PET scan, NED
2/17: Pleural effusion
3/17: Failed pleurodesis
4/17: Starting Iri + Erb
5/17: Ascites; Chemo failed; Starting Keytruda soon