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