Stomach pain and nausea

Hi everyone, I just want to say thank you for all the help and advice the site has given me over the last few months.
My husband who is 55 was diagnosed with cholangiocarcinoma in the middle of last year. He was an outgoing person, a fixer and a problem solver, and this horrible disease has changed all that. We have 3 grown up children, a granddaughter and another grandchild due in the middle of march.

My husband was admitted to Hospital in early April 2016 due to severe jaundice. He had an ultrasound scan, which showed a significant build-up of ‘sludge’ in the Gall Bladder and the possible presence of gall stones, he was kept in hospital put on and IV and nil buy mouth. His gall bladder was removed shortly after. During the operation to remove the Gall Bladder, the surgeon found it very difficult to unblock the common bile duct, due to suspected gall stones. A hole was forcefully created through the obstruction and a stent was inserted to allow the normal flow of bile.

Around three weeks after being discharged he developed jaundice again during a trip to France and was re-admitted to Hospital where he underwent an emergency ERCP, where the original stent was removed and a smaller metal stent was inserted. During the ERCP the doctor in charge of the procedure noted a collection of abnormal cells. A sample of these cells was sent for a histologic examination. His discharge note read ” possible malignant tumour” although this had never been discussed with us previously. The cells were later confirmed as adenocarcinoma cells.

We were assured at this time that the tumour was easily operable, as it was only small ( around 2 cm), subsequently, he was admitted on 6th June 2016 for the whipple operation.

At the time of the surgery, it was unfortunately noted that there were threads of the tumour on peritoneum was and the surgery would not offer any benefit. Accordingly, a palliative double biliary and gastric bypass was undertaken. He was discharged on 15th June 2016 and referred to Oncology at The Christie in Manchester, to proceed with treatment.

Initially my husand was referred to the Christie Hospital on the NHS. At the first consultation a junior Dr informed us that without treatment he had 3-6 months to live, with treatment 6-12. We were told there were no trials available, and we felt utterly helpless. We have private medical cover and so transferred to the private wing at The Christie. He had a consultation on Monday 11th July and, a CT scan on Tuesday 12th July and commenced chemotherapy treatment (gemcitabine and cisplatin) on Wednesday 13th July.

Treatment initially proved successful at the 3 month review, with a reduction in his tumour markers to 99 from 680 and the first CT scan showing a reduction in lymph node size ( we were not previously aware that the cancer had spread to this area).

Unfortunately towards the end of the second round of chemotherapy my husband became unwell as tests proved he had contracted sepsis. He was in severe pain and, as a result of the nausea he was suffering, became unable to eat. He was taken into the Christie hospital on the 25th of November where he was treated and released almost a week later. A CT scan was carried out during this period and the lymph nodes appeared to be back normal size.

My husband was due to finish Chemotherapy on the 14th of December, however due to his symptoms, his last dose was on the 7th of December 2016. He continued to be in great pain in the weeks following his last dose, he was struggling to eat and spent much time in bed. On the 27th of December he was readmitted to the Christie Hospital, and on the 29th of December had a second CT scan and blood tests. The results showed tumour markers of 116 and the scan revealed subtle growth in the main tumour and inflamed lymph nodes this was presumed to be the cause of my husbands discomfort.

At a consultation on the 30th of December we were told my husband was now resistant to the gemcitabine & cisplatin and that, the current method of chemotherapy would no longer be effective. We have a consultation on Wednesday to discuss further treatment options.

We are currently managing his pain along with the help of the pain management team at the hospital. He is on a mixture of painkillers including metaclopromide and amytriptyline. Control is very hit and miss, and we think that trapped wind is contributing to his discomfort; he has bad flatulence and his stomach gripes often. The pain management team are wanting to prescribe more medication however, we feel if this is the cause of the pain, it needs addressing.
Has anyone had any experience of this and found a solution? Any help would be greatly appreciated.

Thank you for reading war and peace, looking forward to hearing some constructive comments.

Bev