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?
Caregiver to DH, dx @ 50, mets to liver/lungs/lymphs, MSS, quad wild
9/16 CEA 114, partial blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
4/17 CEA 11
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX caused hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth/ascites; change to Vectibex + 75% Irinotecan dose
7/18 CEA 23, shrinkage
10/18 CEA 28, growth, considering Lonsurf & trials