Topic: New to site; husband has CC

Hi everyone,

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!

Warm regards,
Jenny

Re: New to site; husband has CC

Hi Jenny,

Welcome to the site. Sorry that you had to find us all and I'm sorry to hear what your husband has been through. He sure has been through so much and I know that he must be such a tough fighter. I'm glad that you have joined us all here as you will get so much support and help from everyone.  I came here back in 2008 when my dad was diagnosed and everyone helped me loads, and I know that they will do the same for you too. Plus, I found it great to be able to come somewhere and talk with people who could understand how I felt and what we were going through. That helped me so much and I hope that it will help you too.

I know that it can be hard sometimes to stay optomistic, especially when you have been through so much already. But please try and not think the worst either. Again though, I know that that can also be hard not to do sometimes. There are tons of posts on the site from the members all about tumour markers etc and using the search forum function at the top of the page will throw up these discussions if you want to read about them.

I look forward to getting to know you too and also hearing more from you. Please know that we are all here for you and I do hope that you will keep coming back here. And please let us know how everything goes for your husband.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New to site; husband has CC

Thanks for the comments and nice welcome, Gavin. Looking forward to hear stories from others like yourself on this site. Time to get searching around!

Jenny

Re: New to site; husband has CC

Hello Jenny and welcome to our extraordinary family but sorry you had to find us.
One of our rules here is to try our best to remain realistically optimistic. Try to read some of our posts as knowledge is a powerful weapon. We have a search engine at the top and just type in any word and you will get back posts on that subject, that helps in grazing through the thousands of posts. I know it is all overwhelming but try to take one day at a time. My husband had a Whipple as well and I am wondering why yours is still in pain 4 months post op. Looking forward to hearing more from you and above all BE STRONG!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New to site; husband has CC

Thanks everyone for the comments and welcome! I will look around at some of the posts and get involved.

Marr had an amazingly good day today, nearly normal activity, so we take this blessing.