debnorcal
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Anne,
Wonderful news. Thank you for sharing and for encouraging others to have genetic testing.Debbie
Kathryn,
Welcome to our on line family. I am sorry that you are dealing with Cholangiocarcinoma. This will most likely be a long ride with ups and downs along the way. In my opinion, the best thing you can do is align yourself with a medical center that is highly experienced in treating CC utilizing a multidisciplinary team approach (surgeon, oncologist, radiologist, etc.), and you are doing that by seeking a third opinion from MDA. They should be able to give you a good understanding of exactly what you are dealing with as well as guide you to best treatment options for your specific situation. Try to stay positive – there are many treatment protocols that are achieving success. Wishing you all the best,Debbie
Ali, the rest of my message didn’t make it to my post above. Sorry about that. My husband had 4 or 5 cycles of gem/cis chemo, then surgical resection, followed by SBRT
Radiation on the surgical margins.Bev,
I am so sorry that your husband has Cholangiocarcinoma and has had such a difficult time with treatment. I don’t have specific recommendations for your request, but I’m sure others witH similar experience will respond. Weekends tend to be rather slow on this board. I just want to welcome you to our family”. This board is an excellent source of informTion and support.
DebbieWelcome Stephanie, although I am also sorry you needed to find us. It sounds as though you quickly got the message about how critical it is to get second opinions from CC experts- good for you. We have many patients that are surviving and thriving despite the awful diagnosis of cc. I hope you will keep us posted about your progress and use us as a source of information and support.
Debbie
Melinda,
That is wonderful news! Congratulations to John. His success provides hope to so many patients.
Debbie
Dear Rosina,
Chemo can really wipe a person out exulting in extreme fatigue, nausea, weakness, etc. Plus, coping with such an unexpected and devastating diagnosis can be overwhelming. It seems to me that very patient responds in their own way. It sounds like your brother is too weak to do much of anything at the moment and his way of coping may be to shut down. As upsetting as that may be to your family, it’s okay. I’m sure he is doing the best he can under the ircumstances. I wouldn’t try to force him to talk about it. However, you and others close to him can talk to him and try to encourage him. Perhaps you or someone in your family is able to take the lead in researching treatment options for your brother. In my husband’s case, his job way to rest and feel as well as he could. My job was to research to understand what we were dealing with and to identify the best treatment options. It looked very bleak for a while but we did get several expert opinions advising us to get the chemo in an attempt to achieve enough tumor shrinkage to be able to have surgery. That is what we did and then we found a surgeon that was capable of performing the very complicated resection. I would encourage you to find the most expert medical facility in your general area, one highly experienced with cc, and work with them. You can let your brother know that his current docs may not have all the answers but you will find an expert to guide you. Also, perhaps sharing some of the success stories from this board may give Jed some hope. All my best, DebbieApril,
Welcome to our discussion group and thank you for sharing your experience. I agree you are doing all the right things – being treated at a top cc facility, taking care of yourself, and staying positive. I hope to see continued shrinkage in your future posts.
Debbie
Tania, my husband had a Klatskin tumor. It took many weeks to be diagnosed. He had multiple ercp’s with “brushings” that were negative, ct scans, a spyglass ERCP, all of which were inconclusive. Finally, an mrcp (using an mri) showed the tumor clearly. This was in early 2015 and he was diagnosed stage 3a.
No natural treatments. Initially, CA19-9 tumor marker level was 101. It got a bit higher as the tumor grew, but it never got crazy high, which is a unique typical aspect of the Klatskin type cc..
Initially, Mike was not deemed a candidate for surgery and he did 5 rounds of chemo (gem/cis). We obtained several second opinions, and one, from UCSF , indicated they could successfully resect the tumor. He had his surgery on 1/12/15, has recovered very well, and is NED at nearly two years post op. If you are interested in more details, click on my user name and you can find a full summary under “all posts”.
This is a tough, long journey and I wish you all the best.
Debbie
