One patient with glioblastoma still alive nine years later
by Mich1031 on Mon Jan 28, 2008 12:00 AM
I still get confused. All the diagnosis states pancreatic cancer but the tumor was in the ampullary duct. To me what I read and understand is the long term prognosis is better with ampullary then with pancreatic. In any case:
My husband had his first pet scan and it came back clean. No sign of cancer. Thank you God!!! Our struggle for him is the continual pain he experiences that no one can explain except maybe scar tissue or nerves going back into place.
For the pain he is taking oxycoton and oxycodone and adavan. They have also had him on a steroid since October which his face is very puffy and for the cramping in his legs they have him on clonopin.
He is not sleeping at night and I think this robs him from getting better. His Whipple was in August 2007 and he finished his combination of radiation and chemo (gemzar and taxol) on November 27th.
They want him now to start gemzar for 6 months (3 weeks on and 1 week off). Preventative reasons.
Is all this pain common? No one knows if it is from the radiation or whipple. We should be thrilled at this point with no findings. But with his continual pain, it just makes it feel to unreal.
Can anyone help? Does it sound familiar? His cancer was the ampullary that metastesized to the lymph nodes. But all is gone at this point.
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