lita

Hello everybody. Thank you for your messages and responses. I will give you more detailed information on the situation.

My husband’s first line chemo was Gemcitabine and Cisplatin. The second line chemo is Oxaliplatin with 5FU and Folinic acid, this is also being supplemented by Bevacizamab (Avastin). He started this last week Wednesday.

He had two liver biopsies. The first was inconclusive and the second concluded that his cancer is a poorly differentiated combination of cholangiocarcinoma and hepatocellular carcinoma. Initially, the tumor was 10cm in diameter and there appeared to be some local lymph node involvement (the scans could not confirm this 100% but the doctors were pretty certain due to lymph node enlargement). His CA-19-9 was 30,000 (normal is 0-20) but his liver was working well. Some doctors believed that high CA19-9 was due to spread in the peritoneal cavity. His bilirubin was stable at the time, no jaundice, no itching, just a lot of abdominal pain. We got 5 different opinions from the US and UK: Memorial Sloan Kettering, MD Anderson, Mayo, Liverpool Aintree University Hospital, and the London Bridge Hospital (the team is directly linked with King’s College Hospital). 3 voted in favor of chemotherapy first with the hope of shrinking the tumor and then operating, and 2 voted in favor of surgery first. He opted for the chemotherapy first option; it was the majority rule amongst the international medical community and the option that gave him the most peace of mind.

Now, after two rounds of 1st line chemo, his cancer has progressed. The tumor is larger, involves the hepatic artery, and there has been more spread into the lymph nodes. He is no longer eligible for surgery. Prior to the scan that revealed the situation we were very optimistic, because his CA19-9 had dropped from 30,000 to 500 but for some reason this was not indicative of how the situation was really unfolding. We spent 8 days in hospital last week. He was in a lot of pain, calcium was high, hemoglobin was low, bilirubin was high. It wasn’t until all these were brought back to normal that he was able to receive chemo and be discharged from hospital. Today we went on a small bike ride and he insisted on cooking me dinner. It is truly a roller coster experience and things can change from one minute to the next.

He is being treated at the London Bridge Hospital by a team that specialises in liver cancer and cholangiocarcinoma, and we are confident in our medical team.

In addition to the medical treatment he is receiving, we have also changed our diet (juices, smoothies, organic, no red meat, no sugar, low animal protein). He does visualization excercises, meditation and yoga. We have tried to embrace all the complementary approaches possible.

I hope with all my heart that he is able to heal and for us to have a long life together, have children, go on a 6,000 mile bike ride in Southeast Asia, start a business. However, all my extensive research points to the very sad fact that this is a terrible disease. This is going to be a major battle, and a very painful experience overall.

Any suggestions or advice that you can provide for us on the way forward would be very welcome and appreciated.

I send you all my most positive vibes and warm wishes.