Have CC & want to connect with others.
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Hi Bill,
My husband has been a survivor for 3 years and 9 months after an unsuccessful resection attempt. They have been talking to him about a liver transplant also but he sounds just like you. He kind of likes the liver he has regardless of it’s limitations! He’s also battled infections-the last one just 2 weeks ago. Just like Tom above he was hospitalized for 5 days and we thought we might lose him. He’s fine now- he says about 95%. All I can say is we work very hard to keep his liver healthy in order to fight the cancer and infections. I’m intersested in what you are doing- there is a lot of info on here re: what others are doing, supplements, treatments etc. Best wishes to you and I’m glad you have such a great caregiver. MaryBill and Jenny:
Welcome to the best CC site that I have found on the internet. I’m sure that like me you really didn’t want to join, but having said that welcome to the site. You will find lots of support here from others who are either fighting this cancer, or from their caregivers.
Your situation is much like my husband Tom’s. He had 3/4’s of his liver removed in 2008 and had a tumor reoccurance in Nov 09. The new tumor is unresectable. His original oncologist told him to go home and get his affairs in order and gave him 6 months. We found new doctors.
After 28 radiation treatments, an external bile drain bag (aren’t they a joy?) and he has now started chemo. They told him that PDT was not an option for him. They have tried 5 times to place an internal stent and have been unsuccessful, so the external drain bag remains. At one point his bilirubin level was up to 24.7. It is currently down to 4.3.
Tom just spent 5 days in the hospital due to a nasty infection from the biliary tube exchange. He was seriously ill and I thought we may be loosing him, but it was just a bad bump in the road. Infections and hospital visits seem like the ‘norm’ with this cancer. Tom just turned 63 in Feb.
Prayers from Wisconsin are coming your way.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
Dear Bill & Jenny, Welcome to our wonderful Family! It sounds like you have things pretty much under control with your game plan. Mayo is one of the best for treating CC as you now know. Those little nasty infections just seem to go with the territory. And don’t we love the “bile bags”? We were so happy when my husband Teddy could go off his, one would have thought he was cured! It’s amazing the little things we look forward to. Keep up the good work Bill and especially keep up the good attitude. Please keep us posted.
Hi, I guess I’ll start with the basics. My name is Bill and my wife is Jenny.
We’ve been married almost 3 yrs. She has been my biggest supporter and cheerleader I would not be here if not for her.
I’m 58 years old and how this all started was back in October of 2008.
The first indicator was pressure under my right rib cage and breast along with a shortness of breath. Gall bladder was the first culprit to blame so my GI doctor tried to scope it and couldn’t get the scope up the bile duct because it had a querky bend in it. He spent 30+ min trying but could not. So he sent us to the Mayo Clinic for the same procedure a month later and they couldn’t do it either. They did do a CT that showed a turmor and it had spread to the lymph nodes.
In a converence on 11/14/08 we met the doctor who is in charge of my case.
We exchanged formalities, sat down and the next sentence he said was
“we normally recommend a liver transplant in this situation”. Well, I nearly fell off my chair. We were completely surprised, as is everyone w/CC.
But my gut said no-way, I like my liver, its been good to me.
(He did not know at the time that the lymph nodes were affected.)
The next day the same doctor said, can’t do it, it spread to L-N’s and I was actually relieved. He then recommended PDT and Chemo but it would only
buy time, without any treatment I had a few months to live. That makes one pause. In the mean time to alleviate the pressure they did a procedure that goes through the rib cage and liver to the bile duct with a drain and bile bag. Lots of fun. We went back to the motel after being released and I had a blood infection within 8hrs and was in their ER by 3am. It was extremely serious, I was on my way out. They are the best. They worked like no team I had ever seen and kept me alive. I have a lot of respect for those folks and many thanks too.
A week later we left the Mayo to regroup and decide what to do.
We elected to go with the PDT but not chemo and a month later I had my first procedure. It went very well. The stents they put in are
plastic and last up to 12 weeks with great luck 4 weeks has been my worst. Over the last year, 2009, I’ve had 2 more PDTs, 6 stents (which I can get replaced here at the Kalispell Hospital), a lot of fevers that indicate infection, lost 50 lbs ( I was 200), drastically changed my diet (a big help), have friends and family praying for me (the biggest help), I meditate and
prayer a lot and have improved my relationship with God enormously.
Some of the details of how I handle infections, the diet I’m on, why I am not
doing chemo, I’ll share in other dicussions. Right know I’m tired of writing and your probably tired of reading this. So I am closing. Oh yeah, the stent I have now is partially blocked and I may have to get it replaced next week, we’ll see. God Bless You All. Bill
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