Newly diagnosed
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Glad for your fast responses – now I will try to be active as well, although at this point I think I have more questions than answers….
The antidote that I get is a trial – for CC treatment. It is known for other cancer types. I/we decided to go for the trial as well when my genes fullfilled the requirements.
I go to Vejle for my treatment, but the Onchology department at the hospital inHello Krisi…you have already made your European connection with Kris and Gavin however, I would also like to welcome you to our site. Don’t you just wish we could have met under different circumstances? However, this site can pride itself in being one of the greates places to communicate, support each other, and share thoughts, knowledge, and wisdom pertaining to the disease of Cholangiocrcinoma. You could not be with a greater bunch of people. A warm welcome to you.
Best wishes,
Marion
Best wishes,
MarionHi Krisi..
Welcome to the board! Not only do we share a name and age group, we share geography. I live in southern Sweden. I think you are on a drug trial that my doctor and I looked into participating in but decided against because of distance (I basically got the same drugs, just not in the trial).My experience is chemo and antibodies are not shrinking my tumor but holding back some of the growth. I am now 18 months past my reoccurance and everyone is very pleased with how well I am doing, considering I am stage iv. In fact, my doctor used the term “unaffected” in describing my life with cancer and I just got back from a 16 day tour of Germany.
I just had radiation and xeloda and will get scans soon to see if they helped. This treatment plan was based on a small Swedish study called CORGI which included pancreatic and gall bladder cancer patients.
There are several people here who have had great results with chemo, including some that had the tumor shrink enough for surgery. Then there are others like me whose tumors are held somewhat in check with chemo and others who have no response at all. Nobody knows which category they will fall into. I hope you get the best response…SHRINKAGE.
Where are you based in Denmark and which hospital will you be treated at? Did both hospitals look at your charts? I ask because I am in Kalmar and through our system we are connected with Linkoping University hospital. But the cc specialist is in Vaxjo and is connected with Lund and my another doctor sent my records to Gothenburg and Stockholm. And of course, they all had different ideas on how to treat me! If you can, you might want to have the other hospital look just to be sure you are inoperable. Sometimes one doctor is a little more aggressive than another.
Hang in there. You have a lot to fight for.
Kris
Hi Krisi,
Welcome to the site although I am sorry that you had to find us, but I am glad that you have joined us all here. We are a very friendly bunch here and we will help and support you as best we can. I came here back in 2008 when my dad was diagnosed and I am glad that I did as the support and knowledge here is excellent. Please feel free to ask as many questions as you want and I know that we will help you as best we can.
I can’t share with you my dads experiences with chemo as he never had that, he had PDT as his treatment. But I know that others will be along soon to share with you their experinces of chemo. At the top of the page there is the search forum function and if you use that you will see a ton of posts regarding chemo.
You are so right that you have something to fight for and you sound like you are up for the fight. I know that this must be hard for you to accept right now and deal with, but you are doing the right thing here in reaching out to others. Please keep coming back here and we will all be here for you.
My best wishes to you and your family,
Gavin
I’ve been searching for others with cholangio carcinoma, but as we are a limited number of diagnosed patients in Denmark each year I decided to change my searches to English searches. I therefore found this forum, and I have with great interest started to read many of your postings. I also see that there are a lot of information that I still need to learn.
I am 37 years old, married to a wonderfull husbond and together we have three children born in 2002, 2004 and 2010. The last child born in february this year is the ONLY reason that I have been diagnosed!
During my pregnancies my liver has been affected by the pregnancy. After birth the standard blod tests showed that my liver was ok again – but not this time!
After a few checkup blod tests I was sent to the hospital for further investigation. On June 4, I was told that I have cancer (mets in the liver) and more investigations had to tell where the primary source was. The patologists tested my biopsi and diagnosed the CC (inoperable).Due to the limited number of CC in Denmark, treatment is centralized on two hospitals East (Copenhagen) and West (Vejle).
Two weeks ago I started chemoterapy (Gemcitabine, Oxaliplatine and Capecitabine). In addition to this I also get the antibody panitumumab (I’m not sure if the wording antibody is correct).
Since I don’t have any symptoms I have a hard time really accepting the fact that I have CC. Being young and with small children I really have something to fight for.
In my opinion CC is difficult to handle and accept – and I every now and then wonder for how CC can be controlled by chemotherapy/antibody. I do know that the answer to this depends on many factors – but what are your experiences/knowledge?
Krisi
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