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Hurray platelets! Tell Lauren I say “hello” and hugs to you both!
My surgeon told me based on the size of the tumor, I probably had it for 2 years.
I laugh about it too. He was a young doc and I’ll never forget the look on his face
Right after my liver resection, I had a doctor ask me if I knew how deadly cc was and that his aunt died of it. The next time he came to see me, I didn’t recognize him (blame the morphin!) and I told him about this awful doctor who upset me so much and he said, “That was me!” He felt awful and apologized and he turned out to be and still is one of my favorite doctors. I’m not saying that’s the case for the doctor you saw but it’s food for thought. However, I think it’s very wise to get a second opinion.
Congratulations Sue! P.F. Changs you said? What a perfect place to celebrate. It’s one of my favorite restaurants….they have a great gluten-free menu.
I’ll add my good news to this post. In January 2012, I hit the 3 year mark for being cancer-free.
My surgeon prescribed the bile thinner, Ursodiol. At the time of my resection he said I would probably have to take a bile thinner for the rest of my life. Haven’t discussed this recently so his opinion may have changed. He also prescribed Cholestyramine. Its helps control itching but can take up to 2 months before it works.
Hope this infor. helps. Let me know if you need more information.
I was diagnosed with cholangiocarcinoma in 2008. I was terrified when I read the statistics about recurrence and survival rates. The only thing that kept me from total panic were the people on this website. In January 2009, I had a liver resection. Recovering from this surgery took many months and I felt isolated and lonely. Participation on the patient discussion board helped me deal the emotional and physical task of recovery. Becoming a member of the patient discussion board has also given me the opportunity to help others by sharing my experiences. The Cholangiocarcinoma Foundation has been a tremendous source of information, inspiration and support.
I give permission to allow for the distribution of the content of my post.
thanks for the compliment
I’ve had external drains for a couple of years. Mine are usually changed every 6-8 weeks. I am given conscious sedation and antibiotics during the procedure. I flush them daily with saline. As far as clothing is concerned, I attach mine with a smaller binder clip to my waistband. I can hide the bags inside my pants as long as they have an elastic waistband. The stitches do hurt while they are healing and I don’t feel very good for the first couple of days. I had a knack for catching the tubing on door knobs and kitchen knobs which is very painful. I can’t sleep on my stomach anymore. The good news is, I haven’t had cholangitis since the drains and I’m forever grateful for that.
Hope this helps.
Hi lost soul,
I can’t have dairy either. Doesn’t leave a lot of options for us. I hope your treatments go o.k. tomorrow.
I like this thread. I’ve been thinking about it all day. I would have continued getting annual check-ups. Prior to being diagnosed, I was caring for my elderly mother and we were constantly at the doctor’s office, emergency room or hospital. My mom kept telling me, “Stay away from doctors Betsy. Once they get a hold of you – they never let go and they’ll find something to treat whether you need it or not.” I skipped 2 annual physicals during that time. I would have gone if I wasn’t feeling o.k. but except for some weight loss, I felt fine.
I too would have let friends/family “in” more. I would have had my sister come stay with me. My first surgery, I told everyone to just wait until I was out of ICU and in my room. My last surgery in August, I told everyone to come and had my sister with me from beginning to end. Such a tremendous comfort to me. I’ve turned into the biggest “touchy/feelie” person.
lost soul – Margaret is right. There are lots of restaurants that now offer gluten free menus – my favorite is PF Changs. There are also many gluten free items at the grocery store…..they are little pricey but worth it……I’ve tried them all so if you are considering a brand, let me know. I had a friend make me gluten free chex mix and it tasted just like the real thing. A lot of people are eating gluten free as a diet choice and a way to lose weight so there are more products out there. 5 years ago, my grocery store had one lonely shelf of gluten free items – now there is an entire section.
lostsoul – when I was diagnosed with celiac, my doctor told me I could never eat gluten again – the villi in my intestines were completely flat. It didn’t take too long before I was feeling much better. I am very careful about what I eat and have become a “label reader”. Anytime I have cheated, I have paid for it by being sick the next day. I too miss all of the yummy foods I used to eat….especially birthday cake! I hate feeling left out of the celebration. However, I have found a gluten free/dairy free brownie mix that is wonderful! So if there is a party, I have something yummy to eat too.
Hope your scan goes well.
Marion – I know you are at a higher risk of intestinal cancer is you continue eating gluten and you have celiac. As far as I know, doctors haven’t been able to connect celiac and liver cancer.