lisacraine
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Gramos,
When I was diagnosed I wasn’t given many options until I was referred to a multidisciplinary team at The Cleveland Clinic Foundation. I have had two resections. Please consider a second opinion at a medical facility that has experience with CC and also a team of doctors so that all treatment options and clinical trials are reviewed. I’m sorry you had to find us but also thankful since this is such an amazing group of people.
Hugs
LisaTrisha,
I had upper right pain under my breast/rib cage area for about a year. I was told after my mammogram that is was common for larger breasted woman to have this pain. I wasn’t satisfied so the doctor did an ultrasound which showed nothing so I thought everything was fine. When pain persisted and I was becoming more fatigued, a friend/gastroenterologist suggested an ultrasound of the abdomen. The ultrasound showed a large mass but it was not till the mass was biopsied that CC was confirmed. Please don’t wait, get to a medical facility that has experience with CC and demand blood work ASAP. I am not trying to be an alarmist just want you to have the correct diagnosis.
LisaIs it possible to get cards with foundation information to put at my oncologists office at The Cleveland Clinic Foundation?
I have him direct patients to the website but it would be nice to have a card in case they forget.I had some ringing in my ears during therapy but it has gone away. Have you tried Emend for your nausea or ativan or a combination?
LisaMelinda
I had six months of Gem/Cis after my resection. I tried Zofran and some others but the combination of Emend and Ativan seemed to help me the most. I think the steroids helped too. I usually felt good on my off week, I think part of it was my excitement of not having treatment.
Hugs
LisaJason,
This disease is a chronic illness with many ups and downs. Please don’t give up hope. I have had five reccurences and yes, it is disappointing but new treatment options are popping up, have you looked at any clinical trials?
LisaDaisy,
I saw the pictures of your Mom at the race and she looks fabulous. You are such a blessing to her and your Dad. I think the most important advise for anyone diagnosed with CC is to get many opinions and never give up hope. I have learned so much from this board about our disease and treatment options.
Hugs
LisaHi Duke,
I found this site after diagnosis while googling Cholangiocarcinoma. I have now shared the link to this site with my oncologist, his PA, my radiologist and surgeon. I also shared it with Scott Hamilton’s 4th Angel Program. I am hoping to get some generic business cards from CCF to give to The Cleveland Clinic so that they could give them to new patients.
Lisa
