Topic: New to site; husband has CC
I think this website is an incredible support system, and I am looking forward to joining in.
My husband Marr was diagnosed in Aug/Sep 2010 and we were quickly referred to Mayo clinic. During the initial phases, he had stents, drains, and all of the scans/tests you can imagine, including radiation therapy and brachytherapy. We were lucky enough to have 4 possible donors evaluated, but none were a perfect match. This ended up being a blessing because when they did a transplant with a deceased liver, they found the cancer was farther along than they thought (extending into pancreas). They switched out the liver and did a Whipple procedure. Recovery went well until he contracted a CMV infection that landed him in the hosptial for six weeks. He recovered and although it took a while, he really improved.
Beginning in 2012, he began having significant pain in the area near the abdominal incision that also came with back pain. His 4 month post transplant visit went well, but his 8 month was less than stellar. They found a slightly enlarged LN (but it turned out to be a slight infection pocket) but no tumors or signs of cancer on the scans. The really worrisome result ws that his CA9-19 level is now up over 500. He's taking pain meds for the pain and we are waiting for a follow up scheduled for early June.
I have become increasingly less optimstic of his outcome.... The doc(s) gave off the vibe the they pretty much thought that the cancer would come back... because the liver translplant was so much more involved and it took a couple of attempts to get a 'clean margin" during the whipple.
It feels good just to talk about this with others who will understand. I am constantly thinking about the tumor market level of 560 and doctors somewhat negative vibes.
Feel free leave me a note or message, i look forward to getting to know everyone!