One patient with glioblastoma still alive nine years later
by aus6321 on Fri Jun 15, 2012 12:43 AM
I was diagnosed with a pancreatic neuroendocrine tumor at the head of the pancreas earlier this month. I am scheduled for a whipple procedure next month but the doctor said neither radiation or chemo would be a part of the treatment.
After reading the posts from other folks having undergone treatment for PNET's, I am now wondering why? Is chemo/radiation only perscribed if the tumor is known to have spread?
by Bill_d_2 on Sat Jun 16, 2012 03:32 AM
Hi, I was diagnosed with PNET in April 2006, in the tail and body, with met[s to the liver. No chemo or radiation works, the only option is surgery. 2 new meds have just been ok'd, Sutent and Everolimus.
With PNET, ypur life span is most likely years, as opposed to the sarcomas. I had the body and tail removed in 2010 and also everything that touched it. the tumor was 18 cm!
I'm doing very well. My church was a big help and gave me also big prayer support.
by Olsong on Sun Jun 17, 2012 05:45 AM
by aus6321 on Sun Jun 17, 2012 12:25 PM
Hi Bill/Olsong - thanks for the replies. I suppose, then, it is not strange they did not perscribe any course of chemo/radiation.
After your whipples, how often do you come back to check for recurrence? Is it only the CT or do they also do endoscopic ultrasounds, blood panels, and such ?
by Olsong on Sun Jun 17, 2012 05:48 PM
i had CT scans at 6 month intervals for the first two years, then annual for two years, and then every other year. I'm now more than 12 years out and was told last month I don't need one for another 5 years. They do blood panels too and a physical exam too in my case. Where are you having the procedure done and how confident are you in the facility and the surgeon? I asked my surgeon how many Whipples she'd done and she told me several each week - that impressed me.
by aus6321 on Sun Jun 17, 2012 06:41 PM
Hi Olsong - I am getting the whipple procedure at MDAnderson in Houston. Dr. Jason Fleming is the surgical oncologist. The doctor and facilities both seem quite good.
If anyone has had this doctor perform his/her whipple, could I trouble for information regarding your experience?
by Olsong on Sun Jun 17, 2012 07:20 PM
MD Anderson and the sureon are rately very highly. I'd say stop asking around on the net and consider yourself fortunate that you've got access to one of the best medical centers and doctors in this speciality in the world.
by aus6321 on Sun Jun 17, 2012 07:37 PM
Hi Olsong - I suppose you're right. I'm just so worried about the operation, the risk of complications, possibilities of recurrence, that I've been going a little nuts.
I can't say enough good things about the doctors, techs, nurses, and the PA that have worked on me. So yes - I should/will consider myself fortunate.
Thanks again for the input.
by Olsong on Sun Jun 17, 2012 08:04 PM
Yes the waiting time isn't pleasant and give opportunities for too much worrying and Googling. I'd be doing the same thing you are I think but I was diagnosed with my tumor on a Friday afternoon and told I was having surgery the following Monday AM - no time at all to worry!
by Bill_d_2 on Sat Jun 23, 2012 03:32 AM
I go back to Stanford every 6 months for a scan. Was in the hospital twice last year with a plugged up bile duct and both times they removed 500 ml of pus and sediment, and e-coli was present. I was very sick, but am fine now. 6 months ago several lymphnodes started growing, but they are stable now. The next scan is in 5 weeks.
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