I'm so upset and confused. We went to see Jesper's oncologist yesterday, and he was ALL doom and gloom. He says he doesn't think FOLFIRI will work this time, since Jesper's CEA kept rising while he was on FOLFOX. He says we are probably looking at chemo resistance and his hopes for any treatment working at this point are very very small. He was willing to give him FOLFIRI but wanted to first hear if Lonsurf would be approved (it's never been approved in Denmark before apparently, due to high cost and low efficiency). He basically said it's super unfair but Jesper's life is going to be very short and he should make sure he hurries up and does the things he wants to do in this life.
WTF??? Jesper has basically no symptoms, no zero pain, and tolerated FOLFIRI pretty well. It shrank his liver mets by about 60%, and during his 2-3 month chemo break in the fall, his mets only grew by 4-7mm. His oncologist said it was a bad sign that they started growing so quickly and is a bad sign for any future treatment. But WTF, Jesper has stage 4 cancer! Wouldn't it be stranger if NOTHING grew? I don't understand the oncologist's thought process at all.
I feel like I recall several people for whom FOLFOX wasn't great, but FOLFIRI worked really well. He hasn't had FOLFIRI since September - wouldn't it make sense to reintroduce it??
(Note: We are STILL waiting to hear from MSK. I've been emailing them and calling them, and yesterday I was finally told they haven't done ANYTHING with his documents yet. The person handling his case didn't even send them to the next person. I sent everything nearly three weeks ago!! Another lady took over now and I re-sent everything to her. At this point it's been so long, though, that I'm not even sure it's a good idea to take the trip and further delay treatment).
I hope someone out there has some wisdom to share with me! I need it badly.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!