aus6321

aus6321's Recent CancerCompass Activity

• aus6321 has replied to a post on the message board

  It's kind of hard to say what is 'cured' with pancreas cancer. Some people are in the 'No Evidence of Disease' category.  If they are fortunate, they stay in that category for the rest of their lives... the span of which is not dictated by cancer. Some people have tumors that stop growing/shrink in the presence of chemo.  If they can continue to tolerate the chemo, they too are fortunate in that their canc...

  May 01 at 4:34 PM view post

• aus6321 has replied to a post on the message board

  There are a couple routes for NET's (neuroendocrine tumor).  There are some chemotherapies available that are unique to NET's.  They reduce the blood vessel growth around the tumors... everolimus (Afinitor) and sunitinib (Sutent). Also, has your husband had an octreotide scan? If an octreotide scan comes back positive, that means your husband's NET has receptors that will make him a candidate for PRRT (prr...

  March 15 at 1:08 AM view post

• aus6321 has replied to a post on the message board

  I've had the attacks around the stomach area as well. My whipple procedure was middle of last year. If I eat and sit for a long period of time afterwards, the chance for an attack increases. I think it has to do with the stomach emptying. The pain is so severe, though, my gums hurt after the attack is over. I try not to sit after eating these days but when the attack happens, I just hang tight, bite my teeth, and wa...

  March 14 at 3:42 AM view post

• aus6321 has replied to a post on the message board

  My deepest sympathies for your son. As if you hadn't lost enough in battling PC... What chemo regimens have the doctors tried with you?  Have they given you any of the ones that reduce blood vessel growth around NET's ?  Also - can you do PRRT again?  Your NET's have the right receptors because they responded to treatment the first time, right? Lastly, are the NET's only in your pancreas?  Or d...

  February 27 at 5:24 PM view post

• aus6321 has replied to a post on the message board

  You're in a tough spot.  I think the key lies in your chances at recovery after getting a whipple.  If the doctors think your body is capable of making a good recovery, a few months of post-op agony might be a fair price to pay for a few extra years with your family. I'm a bit curious... if the doctors have told you a whipple will not remove all the tumors, what would they be unable to remove?  Are th...

  February 20 at 5:02 AM view post

• aus6321 has replied to a post on the message board

  First, I think you did a good thing by logging on and trying to find out more information. If something really is amiss with your husband's thyroid gland, I think an endocrinologist is the kind of doc that specializes in that area? If your insurance lets you go to a specialist without referral, maybe you can get your hubby to see an endocrinologist earlier? Second, don't rush to think it's cancer, just yet. Let th...

  February 03 at 12:35 AM view post

• aus6321 has replied to a post on the message board

  I was diagnosed and had my whipple @MD Anderson.. I went there for a 2nd opinion so I have one reference point from which to compare the folks at MDA. There is no question in my mind I could not have gotten better treatment. The diagnosing GI doc, the surgical oncologist, the PA's, the nursing staff, the dietician... it's been 8 months since my whipple and I still can't say enough good things about them. I thin...

  February 03 at 12:17 AM view post

• aus6321 has replied to a post on the message board

  Have they done any blood tests that look at IgG4 levels?

  January 23 at 5:56 AM view post

• aus6321 has replied to a post on the message board

  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 fa...

  January 17 at 5:24 AM view post

• aus6321 has replied to a post on the message board

  Regarding the tightness around your midsection, I had it after my whipple as well.  I think it has something to do with how your abdominal muscles are sewn back together. I am four months out and aside from sensitivity on the surface of my stomach, the tightness underneath at the muscular level is almost gone. I suppose everyone is different with respect to healing duration, but I think the thing you're supposed...

  November 30 at 4:41 AM view post