One patient with glioblastoma still alive nine years later
by Petekendra on Tue Jan 15, 2013 11:49 AM
Hello and good morning......very new here and a scared to death.....will be gong to Mayo tomorrow to get another scan and see if what they told me in Texas is correct.........I need to just chat with other people wh have this
by AAlonzo on Wed Jan 16, 2013 12:02 AM
I hope your tests come back negative. This is tragic to deal with, and eye opening to say the least. I strongly recommend you seek 2nd, 3rd opinions if the worse should prevail. Don't settle on one doctors decision. It's your life and you need to take it upon you to fight for it. Be strong!
by Harts on Wed Jan 16, 2013 02:33 AM
Hi. I'm here. Talking helps. It is scary....at first. It's been 2 years for me . And I'm just glad for every day I get blessed to enjoy. I'm still fighting the fight. Let us know how tomorrows appt. goes. Harts.
by Petekendra on Wed Jan 16, 2013 12:17 PM
Hello.... and thank you so much for getting back to me.......I am so scared I want to die right now.......i will be heading to Mayo this morning....more tests.....I really dont know if I can make it here.........I would rather give up and die.......Pete....
by Petekendra on Wed Jan 16, 2013 12:28 PM
hello again......can you tell me what is going to happen to me?......what were your early systoms? I really had none and actually thought i was dealing with diverticulties.....i live in rochester mn.....
by Petekendra on Wed Jan 16, 2013 02:56 PM
blood work.....chest exray this morning......all of which are normal.......my doctor called to let me know that......actually got results back in about 2 hours........fast.....ct scan this afternoon......and i'm sure my doc will call shortly after.......thank you so much for talking with me
by Harts on Wed Jan 16, 2013 04:16 PM
Hi Pete. I had pain /cramping in my left stomach side. Indegestion, gas, feeling of weakness, hot flashes. It took 7 months and 4 doctors before being diagnosed with stage 4 pancreatic cancer. It's also in my lungs, abdomen, diaphram and lymnoid. I guess it's difficult to detect. The first 3 doctors I had gave me an ultrasound and a gallbladder test and they found nothing. I switched hospitals and my doctor did another ultrasound and saw something and schuled the CT and that is what helped them find my problem. It is scary at first. Until you start fighting the beast it's just the waiting that stinks. I'm praying for you, let us know how the CT goes. Harts/ Karen.
by bestfriendmom on Wed Jan 16, 2013 06:41 PM
i do not have PC but I am a caregiver for someone who has been living with it for over a year. the only thing that I can tell you is that if one doctor doesn't give you hope find one who does. The first doctor my mother saw told us she would be dead within a year. It has been thirteen months now and she is still fighting. The cancer has spread to her liver and she is now getting 5-FU chemo every other week. She is schedule for a Pet Scan on Feb 8 to see if the tumor has shrink. It is not an easy road but there are people out there that have been living with this cancer for over 10 years. it is no longer a death sentence and there are thing they can do to keep you alive. keeping a postive attitude is the most important thing. Don't read the horror stories that are online. my mom has not read one thing online about this cancer and will not allow any of us to tell her what we have learned. I think that has helped her to remain postiive that she is going to beat it.
you are in my thoughts and prayers. let us know how you are doing and what you find out.
by aus6321 on Thu Jan 17, 2013 05:24 AM
Pete - We'd love to chat with you. However, if you don't mind a few questions...
1) What did "they" tell you in Texas?
2) At what hospital did you get that opinion?
If they told said you have pancreas cancer, what kind of pancreas cancer is it? Is it adenocarcinoma or nueroendocrine? Also, what stage are you: 1/2/3/4?
Next, are the docs @Mayo going to do any biopsies? Blood tests can sometimes give false negatives. What did the CT scans results reveal?
Pancreas cancer can present in a lot of ways so it's hard to tell you what to expect. However, one thing that I've found to be universal with PC is that surgery is almost always the best course of treatment. If the surgical oncologist thinks you are a candidate for resection, that's good (all things considered).
Lastly, don't scare yourself to death. The docs @Mayo know what they're doing and will guide you through what your doing. If you have a question, by all means ask. If it turns out you've PC, welcome! If it turns out you don't have PC, I'm jealous, but still, Welcome!
by Petekendra on Thu Jan 17, 2013 02:19 PM
harts........well it is confirmed that i do indeed have panreas cancer. Will be meeting tomorrow with new doctors to see how to attact this.......
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