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My husband was diagnosed with an inoperable pancreatic tumour in January 2011. Throughout last year he was treated with gemcitabine for 3 months, followed by radiotherapy and 5FU for 34 treatments and then a further 3 months of gemcitabine. Towards Christmas he was looking and feeling better, had managed to regain weight and all signs were that the tumour had shrunk. However, in early January this year, he began to once again experience pain in his abdomen and back and began to lose weight. The pain was thought to relate to a large gall stone, so after a PET scan to ensure that there was no evidence of metastases, he had surgery to remove his gall bladder. The PET scan showed low grade uptake of FDG in the area of the pancreatic head and caeliac axis, which is where the original tumour was located and we were told that this was a positive sign suggesting that the tumour was inactive. We hoped that the gall bladder surgery would relieve his pain. Unfortunately, this was not the case and he has continued to experience inceasingly constant pain in the centre of his back which occasionally radiates to the centre of his abdomen. He has also lost 10 kgs since early January and is looking increasingly frail. He has been nauseated and feels full very quickly after eating a very small amount. He has been taking MS contin for pain twice daily and is taking Ordone for breakthrough pain which ocurs at night, particularly when lying on his back. He is also taking medication to assist with nausea. Blood tests have revealed that his CA19.9 has risen to 300. 2 months ago it was 69, but it was elevated at his initial diagnosis last year (400)and dropped progressively with treatment throughout the year. He has had a recent CT scan which has revealed nothing, suggesting that there is no obvious sign of the tumour or any metastatic disease. Has anyone else experienced such a confusing picture and if so, what was recommended by the treating oncologist? It is very distressing to feel so powerless to help. It seems obvious that there is something happening which has not been visualised on the scan. I would love to hear from anyone who has experienced something similar.



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