Dear all,
I've written before, but not frequently so I will tell you a bit about our case:
My husband was diagnosed at 40 with CC, sent to Mayo Clinic for treatment
Accepted into the LT program and completed all of the standard pre-transplant regimens (brachy, 5FU, etc). At LT (41), there was a lot of cancer, deeper than they would've liked so to get a clean margin, they did a whipple. He recovered really well from both LT and whipple.
At the 8 month post LT appointment (age 42), it was shown that his CA19-9 level and the CT that the tumor had returned to the BT and in the liver, I think. The tumor is around the portal vein, etc. and was already starting to push on this and cause slight blockage of blood flow. He was doing less well at this point in time, but still functioning at about 50% or so.
Mayo said the next treatment would be chemo, if he wanted it, but that time was most likely limited (they did not want to put a time frame on his life, of course). "Less than a year" was mentioned, but so was 6 months... it wasn't clear, plus we all know these are just stats.
They did not do a PET scan, only a chest CT- which showed no tumors. No other scans have been done to date.
We opted for chemo in our home city, 4 hours from Mayo for logistics, etc. He is on a Gem/Cis combo (standard) where he gets a treatment once a week for two weeks and then has a rest week (1 cycle) and then starts again for cycle 2. After his 2nd Cycle 1 treatment, his H/H was so low, he ended up in the hospital needing transfusions and his WBC was also danger low. Once CBCs started up, he was released.
Chemo was halted for an extra week of rest but then resumed. He just finished the 2nd treatment of round 2 last Friday.
His CBCs are all very low, as before, but his kidney, liver, bili are all doing very well. BP, pulse all that is fine. No temps this time. Aside from the neutropenia, you'd think he was a healthy guy...until you look at him...
We are waiting for the next doctor appointment to have the tumor marker results and maybe a scan (if results are positive)... in the mean time I am really questioning the benefit of the chemo right now (at this stage).
Since begining the chemo he has gone from overall health of 50% to about 10% (IMHO) in a rapid amount of time. He sleeps most of the time and when not sleeping, he has a blank and vacant stare that he says he cannot control- he is in an "unexplainable fog" in his words. He still eats well and BM are regular, but he does have constant diarreah (sp). He feels all that he loves to do has been taken from him. He has had problems with sight loss and given systane to help rehydrate. He drinks lots of water. TV, books, playing with our son, talking... have all stoppped.... he's like a ghost walking around the house, and it's so hot outside he cannot go out.
I am so worried about him and wonder what could be causing this other than the chemo (e.g. other tumors they haven't found).
I am mad about the chemo treatment because it's put him in a stupor and his quality of life is in the toilet.
I feel like we are just "waiting for the end" because it has to be better than this, and then I feel guilty.
Basically, everyone feels lousy- sad, depressed, hopeless, and I don't know what to do to break the cycle.
For those of you that have gotten to this stage during treatments... any advice? Any pearls of wisdom? Actually, it helped me just to share this with others.
Thanks for reading.
Jenny
