Just Joined with husband starting SCALOP trial tomorrow

[Hopefulwife]

Hi everyone, I'm Diane and my husband Steve is starting his first chemo tomorrow (GemCap) on the SCALOP trial. A brief - though it never is - summary of Steve's condition is this. He was a fit healthy 58 year old, enjoying golf and tennis every day, a non-smoker who enjoyed a glass of wine with his dinner. He had left flank/back pain in January and thought it was his golf swing, but after few trips to A&E, was diagnosed with mild acute pancreatitis, but when they did an ultrasound they saw lots of fluid round his left kidney. They discovered his left kidney was only functioning 14% and the tubing to the bladder was blocked so they couldn't fix it. So at the beginning of March they did a laparoscopic nephrectomy. Unfortunately the surgeon nicked the tail of his pancreas - so then he really did have pancreatitis. He needed a drain inserting to remove the fluid, which got blocked. So they had to fit another one, which also got blocked, so they had to regularly flush it. A rather enthusiastic unsupervised student nurse over flushed the drain, and overnight Steve suffered a splenic pseudo-aneurysm, and was moved from the regular ward to HDU. From there, having been given 4 units of blood, he was transferred to a different hospital, to ICU and had a splenic embolisation and a stay of 6 weeks in hospital to recover.He eventually came home on 13th May, to recover from a lot of different conditions. Whilst in hospital he had many CT scans, endoscopies, an ERCP with sphincterotomy, colonoscopies, which showed diverticular disease and a lump which they did a biopsy on. He came home mid-May, and had about 3 good weeks, feeling weak, but also feeling like he was on the mend at last. Then something just changed in him and he had a new pain in the middle of his stomach - different to all the other pancreatitis pains. So we had a follow-up appointment with the consultant who ordered a CT scan. It was not until those results came back that the "C" word was mentioned. Steve had an endoscopy and the surgeon said he'd found a mass and it looked to be wrapped around the arteries and he couldn't operate so it would probably be chemo. We saw the oncologist and we are now about to start the chemo/radio/trial. So my question is - has anyone any hints/tips for us as to how we cope with all of this and what are we in for. Many thanks - Diane x

[ali]

hi Diane

My family and i have been through this recently--my mum died 8 weeks ago--too advanced for treatment---she was 79 yrs.

Cannot advise you about treatment etc.--i suggest you e- mail Jeni(nurse on PCUK )

hope this helps

if interested--my story is on a reply to "am i being unreasonable " and "out of blue diagnosis "

Take Care

Helen xxxx

[laura]

hello diane, rather than repeat myself look at my post yesterday on clinical trials, may be of use to you, i know you want definative answers, i really dont think there are any, honest.

everyone, even on the same medication varies SO much, as time goes on life should form a new pattern for you both and you will accept that as the new "norm" very hard i know but try not to dwell just on the now and move on with your teams and friends help, best of luck to you both love laura x