Pancreatic Cancer Survivors

My husband is down to his last two weeks of treatment before we find out if the tumor in the head of his pancreas has shrunk enough away from the portal vein to do a whipple. We are between resectable and non-resectable. The doctor said he could go in now but he would be afraid some would be left behind. So, we opted to do chemo and radiation first. My husband has come through with flying colors so far. No throwing up or any other sickness, no hair loss, blood counts remain stable, and our weight is just down two pounds. I wondered if anyone else has been in this kind of situation. We just need to hear from some survivors. Just some good news. This is torture. I have been told we have one of the best surgeons in the southeast for whipple procedures. I mean to look at my husband, if he were not wearing a 5FU bag you would not think he was sick. I am having a great deal of trouble with this and just need to know if anyone has been in the same situation and survived this awful disease. He has significant involvement of one artery and it is just barely butting the portal. Our prayers are this treatment shrinks and we get the whipple. But then what? He is 47, has never even taken a prescription drug until this happened. Always jogged, lifted weights. Just the picture of health. I am terrified of what a whipple does to a person but also know it is the only cure. Please respond if you have any insight. Thanks and god be with all of you.

Hi. I signed up to be a member of this message board just so I could reply to your message. :)

My husband (now 34) was diagnosed with PC in 2001 and had a Whipple. Usually, PC is adenocarcinoma. His was a neuroendocrine cancer, which is different. His was a slow growing kind, and while it had spread to two of his lymph nodes, the doctors felt chemo or radiation wasn't warranted because of the slow growth. They felt there was a good chance that it hadn't spread any further than that. We found out in January that it has come back, and it has changed characteristics into a more agressive type of neuroendocrine cancer (the actual diagnosis is "poorly differentiated carcinoma with neuroendocrine features"). He finished his first chemo treatment (Carboplatin & Etoposide) last week. The plan is to have 3 tx's then do a scan to see if it's working.

As for your fears about the Whipple-- I'm sure you've read up on it. It's a serious surgery. But my husband did very well with it. His surgery lasted about 7 1/2 hours. He was in the hospital about a week afterwards. His biggest complaint after the surgery was the tube they had through his nose to keep his stomach drained. He had some pain afterwards, but they put in an epidural for pain control and it was very effective. He came home on Percocet, which did well for the pain, and he couldn't lift anything heavier than a gallon of milk for a long while. We had a newborn baby at the time, so that was a difficult time. But he recovered well and doesn't have to even take pancreatic enzymes. He's not on any medication at all as a result of that surgery. Occasionally, if he eats a high fat meal (usually a pizza w/ lots of cheese) his stool will be kinda green, and he might have diarrhea. But that's the only result from the surgery. Other foods give him diarrhea occasionally, but not enough to take meds for it.

And as for you wanting to hear from survivors, we are considering my husband to be a survivor in advance. :) Does that count? His oncologist told him that there was nothing that could be done, and didn't even want to do chemo. We then went to MD Anderson (in Houston). There we were told that he should have chemo, but he is beyond curing. We came back home (to TN) and found a new doctor who has given us some hope. He told us that he has seen younger, healthy men, such as my husband, "do very well with treatment, and occasionally even beat this". And that's what we needed to hear. And he is going to be someone who beats this.

He has 3 lymph nodes enlarged with cancer cells. One of them has basically turned into a tumor and is completely wrapped around his portal vein and is compromising blood flow. The doctor said that his goal was to do the chemo and hopefully shrink the nodes/tumor into non-existence, or at least enough to be able to consider surgery or radiation, or both.

If you care for my advice on how to handle this, being the spouse, I think it's important to make sure you're educated. At least be a semi-familiar with treatment options and ask about cancer markers and stuff like that. Take notes at the doctor's office. Once I reached a point of being able to discuss PC intelligibly, I stopped the intense research because it can be discouraging. I now get my strength from reading about survivors, mostly online. And I've read a few books that deal with cancer on a more spiritual level, which has helped me a lot. I also made a Web site that keeps everyone informed about what's going on, and that has become somewhat therapeutic for me...

I wish you luck, and hope to stay updated on your husband... ~Terri

I had a very large neuroendicrine tumor removed from my pancreas in 2002. It was a big surgery but the surgery itself went well. The biggest problems I had were a little pancreatitis for a few months afterwards and diarreah for a few months. Try to avoid high fat foods. I had complications due to the cancer had metastisized to my liver and had to have lesions burned off, in which they accidentally burned a hole in my esophagus. That has caused me some problems, but the whipple procedure went fine. I have several posts under pancreatic and liver cancer if you want more info. If you're dealing with a cancer (or any disease) you should look into taking glyconutrients from Mannatech. They've helped me heal and I believe kept my tumors from returning. I have personnally talked with people who had inoperable cancer and after taking these supplements for a few months, their tumors shrank or disappeared. It's worth doing some research on. I'm on them as well as my whole family.

hi,
my dad has pancreatic cancer and the treatment he's doing isn't helping and he's looking for other clinical trials. if you have any information of where he could go please tell me! thank you!

We are getting all of our help from Vanderbilt University Hospital in Nashville, TN. Ingram Cancer Center to be specific. Dr. Merchant has some trials running right now. I know there is a phase I trial for sure. You can get on their website and look into it. Dr. Merchant is one of the best surgeons in the southeast for pancreatic resection. I am not aware of what phase your father is in but maybe this will help.

Hi, I'm new to the board. My dad who is 67 had a Whipple on 2/1/06. We were on the fence regarding resectable vs. unresectable. His surgeon said the CT scans gave him every reason to believe his tumor was resectable. During his 8hr. surgery, they discovered that his tumor was feeding off the a portal-vein. Therefore, making his tumor unresectable. The problem was that they were already committed to the surgery at that point. They were not able to completely remove my dad's tumor. We were dissapointed with those results as my dad had no pain up to the day of surgery. He recovered remarkably well, and left the hospital 15 days later. His NG tube was the most painful for him. He is now in his 5th week of low dose chemo and radiation. He has not had to use his feeding tube since he left the hospital. He has worked up to consuming 2000 calories a day. He has had some tough days of feeling like he can't keep his food down. We have found that walking after his meals really helps with his digestion. My thoughts are with each and every one of you going through this ordeal. Stay Strong.

Veronica in CA.