Inoperable Cholangiocarcinoma
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Some genetic mutations are more sensitive/resistant to the chemo from what I understand. For kathy, her ATM mutation, which is pathogenic, also makes the cells more sensitive to -platin type chemo (for ex- cisplatin)
Correct, gem/cis is the standard treatment and that should change based on each patient. Oncologists need to look at overall health and some patients may have other health conditions that they are dealing with in which this chemo combination may not be a good choice. Also, molecular or genetic testing should be suggested early on, not after determining if the chemo is not working. Why can’t there be more choices then an automatic gem/cis for all patients?
Isn’t there a chemo sensitivity test to give the patient to determine if this chemo would work or not? That way the patient doesn’t have to endure extra toxins in body. My understanding from some doctors and research, CC can be resistant to certain chemo.
Maybe someone else can respond to the chemo sensitivity test.Thanks for sharing!
Heap….you have to know that statistics are used to generate the data. Eleven months are the average, but then there are those on the other end of the spectrum.
Most importantly one should remember that this cancer can be treated similar to that of a chronic disease. Once the patient experiences drug resistance or maximum benefit then the next treatment is considered.
It’s best to not focus on life expectancy as no one can predict that. Better to focus on response to treatment and contemplate the next course of action.
Hugs
MarionThanks Marion’s
I had a look at that linked report it seems to indicate that the estimated survival time with that treatment is 11 months. I know every case is different but it would be great to get more time.
Although treatment has started we won’t know how dad reacts until the first review in a few weeks. Fingers crossed the chemo will have a positive effect.
I will be in touch.
Thanks
Heap
Heap….correct, gem/cis is the preferred standard of treatment for cholangiocarcinoma. This is based on the ABC-02 clinical research study
http://www.nejm.org/doi/full/10.1056/nejmoa0908721#t=articleHugs
MarionThanks for welcoming me. The type of chemo he is receiving is Cistablin and Gemcitabine. Is this the standard for cholangiocarcinoma?
Heap….I too would like to welcome you to our special group.
First and foremost, have you searched out a consultation with a center “very” familiar with this cancer as suggested by Catherine?
Helen (AMMF) provides a UK listing: listing of centers with focus on cholangiocarcinoma. Please use this link:
http://ammf.org.uk/specialist-treatment-centres/If indeed your Dad is diagnosed with intrahepatic disease it’s likely that Selective Internal Radiation Therapy (SIRT) with Y-90 Microspheres may become an option for post-chemotherapy treatment
Hugs
MarionYes those are questions for the oncologist. Based on my experience, they sometimes suggest both forms of treatment. Check for your case. What is the name of chemo he is receiving?
Thank you so much for your response it’s appreciated. We have scoured everything for information. Dad was a bit down for a day or two after chemo but was up and active afterwards – we don’t know if he is putting on a show but it is heartbreaking having to go through this. We do not know yet the effect of chemotherapy and we won’t know until the next review. He said he is happy to try any treatment once it will prolong his life.he knows there is no cure to this horrible disease at this stage . Has anyone experience on radiation ? Can it be used in combination with chemo? Should these be questions we should ask of the oncologist?
Heap,
I’m very sorry to hear about your father’s diagnosis. This disease if often only found after it has spread. The most important thing is to get a consult with a doctor/center who are familiar with CC. We have seen some good news stories with progressed disease with some of the new drugs like keytruda or in clinical trials.
If you haven’t yet, info on the homepage for newly diagnosed may be helpful.
http://cholangiocarcinoma.org/newly-dx/
I’m hoping others from the UK can chime in.
Best wishes,
CatherineHi there,
We are based in the U.K. My father was diagnosed with cholangiocarcinoma in March, he is 64 and is still very active. It came as a shock to us all. He presented to the NHS with synthomps of low energy and itching. After a number of follow up consultations he was diagnosed with cholangiocarcinoma. He has had one chemotherapy session last week and more to follow in the coming days.
We have been told it is stage 4 and it is not operable and chemotherapy is the only option going forward. It is devastating.
Has anyone been through this before? Is chemotherapy the only option where it has spread to other lymph nodes/ organs?
Best wishes,
Heap
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