Summary of My dad’s case just in case useful for others
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Teresa,
I’m glad he was able to have the treatment and will be waiting to hear great scan results in 4 weeks.
A few links that may be interesting- but not the exatct one I referred to in an earlier post. I’ll check my work computer later today. Too often I spend lunch time following links and must not have sent it home. Please know that my ability to understand these in almost non-existant, so they may not be applicable, but I still keep reading so I can ask the doctors if it could be an approach. Also, even if I have no understanding of what I’m reading, I love when I see good 3 and 5-year survial rates in non-resectable CC patients.
First is on radiation lobectomy (I liked the survival rates for HCC)
http://link.springer.com/article/10.1245/s10434-009-0454-0And since you were trying to look at all options, below links show encouraging use of RFA, and of RFA after SIRT.
http://www.ncbi.nlm.nih.gov/pubmed/24637151
http://www.ncbi.nlm.nih.gov/pubmed/19269763
Catherine
Quality of Life studies are included in all Phase III trials. Unfortunately though – that carries over to most rare diseases – at present our cancer has few Phase III trials.Therefore; we miss the necessary data to make decisions based on the treatment outcome of a large group of people and for that reason it is difficult to decide on a specific protocol.
The Cholangiocarcinoma Foundation International Patient Registry provides one resource to patients, as the de-identified information is available to each registrant. With time we hope to have encouraged each and every patient/caregiver – no matter their place of residence, globally – to participate in this important registry.
Hugs,
Marionthanks Catherine for your reply.
My dad had the SIRT on Wednesday. Naturally we have a 4 weeks wait to see if works or not.
I am interested about the lobectomy that you describe. Could you send me the papers that you were able to dig up. It sounds very interesting and if Dad has a response to radiotherapy I believe it maybe a good option for him (naturally only if radiotherapy works).
Teresa
Teresa,
Mom’s CA 19-9 has been pretty steady since diagnosis in Oct 2013, so sorry I can’t help. However, I want to thank you for taking the time to post the summary of your Dad’s treatments to date. Like you, I have spent much time reading posts and trying to find the common threads of those who are doing well and which treatments seem to have least side effects. With how rare CC is and how some of the treatments have only been tried in the past few years, it seems like the published research may miss some of the protocols that are working to extend length and quality of life.
Best to you as well,
Catherine
Hi all,
I often read through other people’s posts to learn more about this disease. Sometimes I just stick to the good news section as it can be a bit much however I have always found people’s experiences useful. I wish to provide this summary just in case useful for others
– August 2011: dad diagnised with VERY small peri-ampulary carcinoma. Decision to have wide ampullectomy instead of Whipples as so small (I always wonder if we had had a Whippples straight way if things would have been different and I must live with this
– March 2012 – due to recurrence he had a Whipples. Negative margines. no lymph node disease detected (however not many lymph nodes taken out). He was not offerred adjuvant chemotherapy (and I asked two oncologists in Australia)
– Nov 2012 – CA 19_9 went just above Reference range and they saw possibile lymphadenopathy on CT scan
– April 2013: He started a clinical trial with GEM/Cisplatin & Panitumumab. Good stable disease for close to a year however the Panitumuba rash was harsh. Dad requested a two month break and then he has disease progression in April 2014 (a small liver lesion picked up on CT. Previously only seen on PET)
– April 2014. He started FOLFIX however after 6 weeks treatment progression was seen on CT (just small progression on CT csan of liver lesion
Dad had a two month break
– August 2014 He shad Abraxane monotherpay for 3 cycles. Despite this he had significant progression in two liver tumurs. Interestingly his lymph node disease is no longer apparent,Now he has bascially liver disease (two lesions). two Australian surgeons have said not to operate and are suggesting local radiotherapy (Yttrium-90 ). I have spoken to two Italian teams (where I live); one has said to resect and another has said not to resect. I was VERY lucky and Dr Kato also reviewed his scans and said that he has resectable disease (naturally he was clear to say that he has metastatic disease so is not a CURE).
I have just arrived in Australia and dad appears weaker than when I last saw him. The last chemotherpay took its toll. We have decided to try Yttrium-90 radiotherapy (as dad doenst seem keen on surgery straight way) and then we can evulate. I am hoping that he will get fitter in the meantime.
What is interesting and I would love if someone knows why. On his last blood test his CA 19-9 has gone down from 1138 to 568 (despite no chemotherapy in between two test) however his CEA has increased from 26.1 to 46.6. I dont know what that means…..Anyone can help.
I hope this summary helps someone
All the best
Teresa
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