Ken, I hope things keep getting better.
Ken, I hope things keep getting better.
Thanks Mark. It is a scary business for sure. I am so glad there are groups like this and people like you for support
Thanks Jeff. So far so good!
Hi Ken, I hope you are doing well and chemotherapy was successful…
I was diagnosed with early stage cholangiocarcinoma
a week ago. We have dilemma wether to do resection and radiation first and then chemo or the other way around. This is why I’m interested how things worked out for you…
Sorry to hear of your diagnosis. Early stage sounds good though. I am doing quite well. This past March 11 was my one year anniversary of my resection. I did 6 months of clean up chemo (Capecitabine) and have had clear scans since the surgery. If it looks like the tumor is easily removed, my recommendation would be to take it out first but sometimes this can’t be done and they want to shrink it first. Given the rarity of cholangiocarcinoma, I highly recommend that if you can, you select a hospital that specializes in it. The Cholangiocarcinoma Foundation has a listing. I am certainly not an expert and but if you are on FaceBook, I also highly recommend that you join the group Colangiocarcinoma Warriors - Patients Only. There are a lot of very active patients there who have an incredible wealth of knowledge (and hope). I will keep an eye out for you on that group.
happy to hear that you are doing well
Thank you very much for the Facebook group, I asked to join in.
Regarding The Cholangiocarcinoma Foundation and the list of hospitals, is it only for USA or worldwide? I live in Croatia so I don’t have much of a choice but I contacted couple of hospitals in Austria.
My doctors in Croatia are also still deciding whether to take it out first or shrink it.
How did you cope with chemo?
When you get into the group (I know that you have to be approved first) send a post telling folks a little about your situation (or as much as you want to tell - we have no secrets in that group) then i will see you there.
There is a good chance that you will be on a different chemo than I had but I am certain that others in the FB group can tell you about their experience with whatever your doctors select. The Capecitabine I was on was a little rough in the beginning but once they reduced my dosage, it was better. It was oral - 2 weeks on and one week off for 6 months. I lost a lot of skin on my hands and feet at first. It is important to stay very hydrated and to use a moisturizer on your hands and feet.
By the way, my wife and I vacationed in Croatia a number of years ago and just loved it! I don’t drink anymore with the PSC but I remember enjoying some wonderful rakija (spelling?)
Thank you for the tips and your feedback regarding chemo…
I’m still not approved but I joined the other support group and already got a lot of usefull info there.
U spelled rakija correctly we have some good ones here, I used to enjoy it a long time ago. Our wine is even better but that’s also in the past for me.
That is odd. I will see if I can check on your joining. What is your FB name? It is such a good group - I really don’t want you to miss out on it. Which group did you join?
I cannot speak for others but I was also diagnosed with Cholangio CA and I had resection once I finished my pet scan and MRCP. I didn’t even know I had PSC at that time. My doctor’s advice to me was to get the surgery done asap if it’s operable. I, however, also did adjuvant chemotherapy after my operation for around 2 months until my liver cannot tolerate. It has nearly been 2 years since I had my surgery. My PSC problem still hasnt been solved though and now both my small and large ducts are continued narrowing. If I have the choice, I believe I will go for a transplant in the first place but due to the medical policy here it was not possible to get one.
Hope all is well for you!
Hi Ken, I joined Chilangiocharcinoma support group I’m not yet approved dor the one with patients only…
My Facebook name is Matej Curkovic.
I was diagnosed with PSC in 2005 and lived pretty normal until I was diagnosed with CC in march 2020. The only sympthoms I had were cholangitis attacks which can get painful but they didn’t stop me from living normal life most of the time. In Croatia we have very good liver transplant system and they offered to put me on the transplant list, but doctors that I consulted told me not to do it until it’s absolutely necessary. I don’t know much about the transplant, how is the quality od life , and how long can you life after one?
Tomorrow I have resection, I feel optimistic as I have very good team of surgeons and they said everything should be fine.
Thank you for the support, stay well.
It is by no means a small surgery but it is not as daunting as it sounds! it is great that you have a good surgeon team behind your back! I wish you nothing but good luck and a speedy recovery!! let us know your progress soon!
Best wishes for clear margins and a speedy recovery Matej!
Matej, sorry for that diagnosis. I hope everything goes well and you make a quick recovery.