Introduction
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Posts
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Thanks for your welcome greetings and comments. I would appreciate if you copy my post in introductions. I have not fully figured out how this site works. Lena
Lena….I would like to follow Catherine and welcome you to our site. As it so happened with your dear daughter, on rare occasions the primary tumor evades detection. I believe that PSC patients have a 25% chance of developing cholangiocarcinoma, so sorry to hear that your family has been touched by this disease as well.
Also,
ceusita
Anne Bjerkenaas
Alicia
are our newest members from Sweden. The enclosed link leads you to some of their discussions:
http://www.cholangiocarcinoma.org/punbb/search.php?search_id=507467786
By clicking “go to post’ you can follow previous conversations, but knowing how wonderful these ladies are, I expect you will hear from them as well.Glad you found us, dear Lena, and please stay in touch. We are in this together.
Hugs
MarionHi Lena,
Welcome to our group. I’m very sorry to hear your daughter has been diagnosed with this disease. Although I am not a doctor, I’m not sure if I’ve ever seen on the board anyone having a diagnosis from a lung met.
It is a rare disease and it can be overwhelming trying to learn as much as you can. If you haven’t yet,
you may want to start on the home page with the section for those newly diagnosed.http://cholangiocarcinoma.org/newly-dx/
We have seen some spectacular results in some cholangiocarcinoma patients with the ID-1 alteration, but I’m not sure if it is required. There are many clinical treatments ongoing so hopefully we will have better info in the future. Could you try to copy your post under the introduction section ( http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=18 ) Or, if you want, I’d be happy to do it for you. I think more members might see it there and be able to share more information with you.
It is highly recommended to get a second opinion from a cancer center that treats CC on a regular basis. I know here in the US some member send their records to have them reviewed rather than traveling- I hope there may be others in the EU that can give suggestions to help you out.
Best wishes,
CatherineHi, my daughter was diagnosed with metastatic CC in June this year. She is 43 years old and has been diagnosed with PSC in 2010. She is asymtomatic and in good shape. She walks briskly 5-8 km most days and also make longer bicycle rides. During the summer she had Gemcis treatments, two weeks on and one week off. Her largest met in the lungs had regressed slightly and the many noduli were the same size and number.ERCP ,CT and PET showed no tumour in the bile duct but brushing showed cancer cells.i
It is confusing to me that a person can have lots of mets in the lungs but no visible bile duct or liver tumour.A biopsy was taken from a met in the lungs and it confirmed CC, they said at the local hospital. We live in the north of Sweden and there are not many cases of CC here.
I am trying to learn as much as possible about this disease,this seems to be a good site for learning. Do you have to have a certain mutation to be helped by Keytruda?
Now she has more treatments with Gemcis and tolerates it well. She is affected by fatigue from the treatments but still manages to take care of her three minor kids.
Thankyou for letting me in on this site.
Lena
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