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Inoperable Advanced Pancreatic Cancer - PDT Trial


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My husband was diagnosed with a tumour in the head of the pancreas last June and had an unsuccessful Whipple attempt (the surgeon discovered he had Acute Pancreatitis and the operation was abandoned). On 2nd September 2009 we were told the tumour was inoperable and he was given 3 - 6 months to live without chemo and up to 12 months with it. He had experienced six separate bouts of C-Diff so when this prognosis was given he was particularly weak. He was too weak to have chemo at that time.

With good nutrition and excellent care by our GP he gained strength. Our daughter heard about a trial at XX called PDT - Photodynamic Therapy - and he was accepted on the trial in November 2009. He had always believed in organ donation so was disappointed that he couldn't do this because of the cancer. He wanted some good to come out of his impossible situation so was keen to join the trial so that it may help others in future.

The trial involved five days in hospital and visits to London for CT scans. My husband went into XX and a chemical was injected into the bloodstream which highlighted the cancer cells, then a lazer guided by a scan was aimed with four joules into the cancer cells. Patients on the trial were given different quantities of joules with the lazer. He was one of the people early in the trial and to our utter amazement and joy a week before Christmas we were told that the tumour had shrunk by almost a centimeter!

The trial doesn't offer a cure but in the years to come - who knows what the research will come up with?

Unfortunately the tumour grew again by the next scan in February 2010. He is getting weaker as everything he eats goes straight through him. He can only manage small meals now and they often consist of light or liquid foods. However, with the prognosis we had been given earlier we are grateful that we continue to have so much time with him. He is very courageous, always finds the best in any situation and has a wonderful sense of humour - we are truly blessed.

The reason I am writing this is to let you know that our daughter only heard about this trial on Sky News when away in another country and even though we (my husband and me) asked about trials we were not told about this - we were only told about chemo. We believe this has given us more time with him. So, it seems the best way forward is to do your own research!

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Hi Mush

I'm truly pleased that you had such a positive experience with the PDT trial but our experience was different. After researching PDT we managed to get a referral and my husband, Ted, was accepted onto the trial subject to tests but when we found out more about it we decided not to proceed for a number of reasons. The purpose of the trial was not to fight or cure but to see what dosages were safe and acceptable.

I should just say to anyone with mets (spread) that they wouldn't be eligible for the trial and there are other exclusion criteria too. It's a small trial of just 12 people and may even now be closed.

Nevertheless, like Mush and family, we continue to research for promising new trials and I'll share any positive news that I obtain.

Nicki x

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