A little about myself
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Hi Marion,
Don’t know if this is related, but my husband’s appendix burst & was removed but it was way before he started to have the problems related to CC. (that we knew of, or were aware of) I want to say it was about 10 years previous. After seeing some of the posts I too wonder if there is any connection as we now know that although we were not aware of the CC it probably had been there for years. A year or so before that he also had a problem where his kidneys almost failed and after outpatient IV’s he was fine and never had a recurrance until all the issues that lead to the CC diagnosis. It is interesting now, when you think back and start to put these things together.
I was hoping you would have some time for yourself in NYC too, as it really is a great place to visit, especially during the holidays!
Darla
There are several members with appendectomies on this site. I would love to know how often his occurs with CC patients and will start another thread with this subject.
Best,
MarionDear Barbara,
I’m glad my thoughts were helpful to you. I wish I had more time today to tell you the whole details of my cancer journey but on Monday I’m leaving on a business trip to Japan and Korea and I’m really pressed for time.
The short version: got sick in 2003, diagnosed in Feb. 2004, resection then, a recurrence in 2006, failed resection, 7 weeks of radiation and Xeloda, the tumors are still there but not growing (except for one incident last year) and I’m doing very well. I practice meditation and qigong, have acupuncture every week, take lots of supplements, run (well, not right now, I had a burst appendix at the end of September…) and just try to enjoy the hell out of every day! (if you are interested in more details they are in these two posts
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1311
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1312
Hope you are having a beautiful weekend!
Kristin
Hi Barbara,
Please can I join everyone in wishing you a warm welcome to this site, that I hope will be a goldmine for you of information, support, guidance or a safe place to vent whatever…
Sadly, I only found this site after my Dad had passed away from a failed liver resection for a Klatskin tumour, but the support and encouragement I have found has been invaluable.
Good Luck with your treatment and keep us posted, Katie
Thanks everyone for such a warm welcome. It makes me so happy to hear that there are others in the same situation as I am. The isolation that comes with the diagnosis can be difficult. As a runner when I was first told that I had cancer my thoughts ran more toward why have I worked so hard to do things for good health when this could happen. Now I have discovered that going into this disease in good health and strength will only help the outcome. I am sure that is why I seem to be tolerating my treatments so well.
Kristin – you are my inspiration! I would love to hear if you are in treatment now and what you have experienced, etc over the past six years.
Thanks again for all of your kindness. My daughter is the one who found this site and has encouraged me to visit it. I was a bit hesitant not knowing what to expect. Now I am really happy that I made that first step.Take care,
Barbara
Hi!
We’re SO glad you found us!
I’m a runner too (though nowhere near as accomplished and disciplined as you) and used to do pretty serious weight training, and like you, I always took good care of myself and ate a clean diet. When I was first diagnosed, I thought, “It’s not FAIR!!” Later I realized that being in really good shape probably made my body stronger to deal with the cancer and a recurrence. So far, so good! (I’m still here, six years later.)
Everyone here is SO helpful and supportive. We’re all here to cheer you on, so please keep us posted on how you’re doing.
Wishing you all the best,
Kristin
Hi there,
I just wanted to join the others in welcoming you to the site, although I’m sorry that you have to be here but glad that you found us. This is such a great site and everyone here has been such a great help to me and my dad since his diagnosis last year. His CC was inoperable and he was treated with Photodynamic therapy.
I hope you stick around and ask a bunch of questions as we are all a very friendly bunch and you will get answers from people who have been and are going through what you are. That is good to hear about the shrinkage from your last scan and I hope the next one will also reveal more good news.
My best wishes to you.
Gavin
Hello bjcaraugh. I would like to follow Julia in welcoming you to our very special site. You are bringing up something many of us have pondered and that is related to being a runner. When I first came on this board in 2006 several of the members had been just that, runners including, those competing in Marathons. I also often wonder about the so called “return” of the cancer and believe that the cells are there but can not be detected in the very early stages. The cells are so miniscule and very difficult to detect under a microscope. I believe it to take 40.000 cells before being visible. Don’t hold me to this because I am not a physician and just pass on information given to me which may or, may not be accurate. The good news is that you are being treated and that you have searched out another opinion from a center very familiar with this cancer. Your tumor has responded well to the current treatment and I wish for an even more positive scan result next month. Has any type of radiation ruled out?
I am so glad that you have found us. And, please stay in touch. The first hand experience shared on this site is invaluable to all being diagnosed and treated for Cholangiocarcinoma. And, we are all in this together.
Best of all wishes,
MarionWelcome bjcarbaugh to the best little club in the world that no one wishes to have to join. You are already a survivor having won the 1st Marathon in February and now winning this one as well. You have a great attitude and attitude is a good part of the run. If you have questions, we have a lot of experienced “family” on this Board. It was very wise to go to Mayo MN for a second opinion as they are one of the very best. Wishing you continued success so that we can read that you won this Marathon also.
Welcome, bjcarbaugh. I’m sorry you have to be here but it’s a wonderful place to be in circumstances like these.
I’m so excited to hear of the shrinkage of your tumour – GOOD LUCK with the CT scan. Please come back soon & tell us how you’re doing.
Very best wishes
JuliaHi everyone – this is my first posting on this website, so please bare with me. I am a 56 year old female that has been extremely healthy my entire life. I was a marathon runner (completed 9 marathons including qulaifying for Boston). I have always been conscious about my weight and have always tended to have an extremely healthy diet and lifestyle. I had surgery this past February for removal of a tumor and a rather extensive liver resection. My cancer was first diagnosed as hepatocellular, but later re-diagnosed as cholangiocarcinoma. After surgery I was declared cancer free with clear borders and margins on the tumor removed. The cancer returned in June. I did 6 weeks on Nexavar (post the cholangio diagnosis) and then started Gemzar. I will have my tenth weekly treatment tomorrow. I went to Mayo in Rochester a few weeks ago just to get another opinion and to be sure we are on the right track. My last scan showed some improvement – shrinkage – in the tumors. I go in next week for another CT scan. Needless to say this has been a hard year – I have felt like everything was pulled out from under me – but I think I am learning to cope pretty well. I believe in a positive attitude and pray daily for healing from God. I am anxious to hear about other treatments and how people are doing with all that cholangio brings with it.
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