I'm grasping at straws here but as I told DH, I'll do anything!
Background: FOLFOX failed in May with CT showing increase of largest liver tumor from 3 cm to 5 cm. Bilirubin up to 6 with obvious jaundice (blockage of any way out says onc), LFTs are all bad, abdomen filled with fluid, as did lungs. DH was exhausted and slept a lot. Both lungs were drained. 1st round of Vectibex then added 75% Irinitican to the mix and DH is feeling much better by June. July CT scan shows big tumor back down to 3 cm, bilirubin under 1, LFTs good, abdomen fluid decreased. Continue on with I and V.
Last week was the next CT scan and it shows the largest liver tumor is now up to 7 cm. Surprise to all. No lung fluid, same abdomen fluid as July. Bilirubin at 1.4, LFTs good. DH still going to work and walking over 7,000 steps (he used to do 10k) a day. Doctor wants an immediate switch to Lonsurf in 2 weeks and to look at clinical trials.
I can't wrap my head around this. How can 5 cm cause issues in May but up to 7 cm hasn't? I"ve scoured our friend Google with how to diagnose if this is indeed pseudo...MRI? Another imaging system? Another PET? Wait and see...how long? I've seen a few scholarly articles on the topic but my next chore will be getting the onc to listen to us because he's a great one for pooh-poohing stuff. Ideas?
Last edited by mhf1986
on Wed Oct 24, 2018 4:43 pm, edited 1 time in total.
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials