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Does anyone survive pancreatic cancer?

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Mar 21, 2012, 11:07am   #1
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vhdos
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A good friend of ours was just diagnosed with pancreatic cancer. Of course, we want to be hopeful, but after doing some research, the long-term prognosis of pancreatic cancer is awful. I found a national study of almost 5000 people, and there was literally only 1 person that had survived 13 years later, around 20% survived a year, and even less made it to the five-year mark. I guess I just wanted to know if anyone had any experience or insight to share on pancreatic cancer? On another note, a member of my family is going in for surgery today to remove a tumor. It is unknown at this point if it is cancerous or not, but the doctor said that, "it doesn't look good" and they have already talked to them about chemo, etc.
Mar 21, 2012, 6:06pm   #2
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labelwhore04
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I'm so sorry That is truly awful. I wish your friend the best. I know it's hard to be optimistic in these types of situations but never give up, your friend could be the lucky 1/5000. You never know.
Mar 21, 2012, 8:09pm   #3
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vhdos
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^Thanks for the kind words, label. We want to be optimistic, but it's difficult under these circumstances. On a positive note, my family member's tumor turned out to be benign (thank God because they have two, very young kids).
Mar 21, 2012, 9:20pm   #4
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BertyT
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I am afraid i don't have anything positive to contribute. I knew someone(a friend of a family) who died from this-literally in a few months. Doctors told her there was no hope but they wanted her to go through chemo anyway. She did and died in agony. Her family was told later that she didn't die from cancer itself but chemo totally knocked our her immune system and she died from infection. I have read about people surviving this for years and years, but all of them seeked other threatment(other than chemo, that is).
I hope very much that your friend will beat this-my advice would be seek a 2nd or even 3rd opinion as far as threatment goes. Tell your friend not to give up hope ((hugs))

The "usual" threatment seem to be akin to a death sentence since hardly anyone survives.
Mar 21, 2012, 10:01pm   #5
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girliceclimber
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I'm really sorry that you, your friend, and your friend's family are going through this, vdhos.

I worked on a pancreatic cancer project in the first year of my PhD, so I know a bit about the disease and how devastating it can be. With pancreatic cancer, the outcome really depends on how early the cancer is caught. If it hasn't spread, or it's only spread to nearby lymph nodes, a surgeon will try to remove all the tumor material. After surgery, patients can have really good outcomes and live well past 5 years. Unfortunately, if the tumor has spread a lot, the only option is chemo, which has the poor outcomes that you read about. Chemotherapy does tend to prolong people's lives, so many people will opt for this if there's a major life event happening that they want to be there for (such as the birth of a grandchild, a wedding).

Again, I'm really sorry that you're going through this. A good friend of mine had an uncle pass from pancreatic cancer, and it was a very heavy experience. I think it's important for your friend and their family to have a lot of talks with their doctor (and always get a second opinion), as well as have some heartfelt family discussions. My friend (and a lot of her extended family) traveled to see her uncle in his last months and it really meant a lot to him, to have his family and friends around him.
Mar 21, 2012, 10:04pm   #6
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sedatedrainbow
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I'm sorry vhdos for your friend's situation. I don't have any counter research to offer.

I just wish you and your friend all the strength and ability to endure this disease.

I hope others on here can give you some advice that might help with your friend's struggle.
Mar 21, 2012, 10:23pm   #7
v
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vhdos
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Originally Posted by BertyT
I am afraid i don't have anything positive to contribute. I knew someone(a friend of a family) who died from this-literally in a few months. Doctors told her there was no hope but they wanted her to go through chemo anyway. She did and died in agony. Her family was told later that she didn't die from cancer itself but chemo totally knocked our her immune system and she died from infection. I have read about people surviving this for years and years, but all of them seeked other threatment(other than chemo, that is).
I hope very much that your friend will beat this-my advice would be seek a 2nd or even 3rd opinion as far as threatment goes. Tell your friend not to give up hope ((hugs))

The "usual" threatment seem to be akin to a death sentence since hardly anyone survives.
From the research that I've done, the disease itself is pretty awful, so although chemo has its disadvantages, I'm not convinced that alternative treatments can offer any benefits (look at Patrick Swayze). Thank you for your response, though, and I'm sorry that your family lost a friend to this horrible disease:(
Mar 21, 2012, 10:26pm   #8
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Thread Starter
vhdos
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Originally Posted by girliceclimber
I'm really sorry that you, your friend, and your friend's family are going through this, vdhos.

I worked on a pancreatic cancer project in the first year of my PhD, so I know a bit about the disease and how devastating it can be. With pancreatic cancer, the outcome really depends on how early the cancer is caught. If it hasn't spread, or it's only spread to nearby lymph nodes, a surgeon will try to remove all the tumor material. After surgery, patients can have really good outcomes and live well past 5 years. Unfortunately, if the tumor has spread a lot, the only option is chemo, which has the poor outcomes that you read about. Chemotherapy does tend to prolong people's lives, so many people will opt for this if there's a major life event happening that they want to be there for (such as the birth of a grandchild, a wedding).

Again, I'm really sorry that you're going through this. A good friend of mine had an uncle pass from pancreatic cancer, and it was a very heavy experience. I think it's important for your friend and their family to have a lot of talks with their doctor (and always get a second opinion), as well as have some heartfelt family discussions. My friend (and a lot of her extended family) traveled to see her uncle in his last months and it really meant a lot to him, to have his family and friends around him.
Thank you for this. This is the kind of info I was looking for. We are not sure yet what stage the disease is in or if it is operable. I think that they are still trying to process everything. I'm sure that they will get a second opinion and we live in an area with not one, but two, incredible medical facilities. I guess that we will know more soon and we are crossing our fingers that it was caught early.
Mar 21, 2012, 10:53pm   #9
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Aimgrrrl
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My dad just died of Pancreatic Cancer after surviving it for three years. Yes, the statistics are horrendous, but as Dad said, "SOMEBODY has to be that 1%. May as well be me."

Where are you located? Great medical facilities are great, but to have a prayer of long term survival, your friend will HAVE to see one of the top PC research oncologists. Seattle has Dr. Vincent Picozzi and his team at Virginia Mason. He took my dad from "nonoperable adenocarcinoma of the pancreas, locally advanced" to "no evidence of disease" in a year of hardcore treatment. (pancan does NOT have regular staging. Anyone who says it does, that's a great sign that they're not going to be the doc who can get you some extra time)

We had three GREAT years with my dad. That's about two years and ten months more than most people have at the time of diagnosis. We knew we were living on borrowed time, and we cherished every single minute we had together. We did a LOT of living in those years. All the "bucket list" stuff? Forget it. It doesn't matter in the end. What matters is the people you love, and that love you.

My dad had the best case scenario after the worst possible diagnosis. He was healthy and well until he suddenly wasn't. He spent only one day in the ICU, and not even on a respirator or anything. He died with his family all surrounding him, there one minute and simply gone the next. His cancer had finally metastasized, and when it came back it came back FAST. He had a clear CT scan on Friday, and lungs full of clots by Wednesday. A clot broke loose during an attempt to break them up, and stopped his heart. He was not in pain and he didn't waste away. It was exactly what he had hoped for given the circumstances.

Of course I miss him terribly, and would give anything in the world to have him back. But I have no regrets. We said everything we needed to say, and we made the most of the time we had.

Your friend and their loved ones are in for a hell of a tough battle. 49% of it is determination and sheer stubbornness. 50% is the doctor. 1% is pure luck. Cancer is a roller coaster for everyone involved. Pancreatic Cancer, more so. Good news is followed by bad news, is followed by good news, etc. It's not easy and the family will need friends who can jump in and do something tangible to help. Make a casserole, bring homemade soup. My dad went through a period where all he could stand to eat was Ensure and apple juice. So we cooked for my mom, and bought dad some really great organic apple juices from all different sorts of apples so he'd have a little variety.

Please feel free to PM me if I can help in any way. I've learned a LOT about this disease in the last three years. I've met some amazing people. Also look up your local Pancreatic Cancer Action Network. They can connect you with the best docs in your area, support networks, etc. They also have survivor stories on their website. Read them when you need some hope. There IS hope.
Mar 21, 2012, 11:18pm   #10
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girliceclimber
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Originally Posted by vhdos
Thank you for this. This is the kind of info I was looking for. We are not sure yet what stage the disease is in or if it is operable. I think that they are still trying to process everything. I'm sure that they will get a second opinion and we live in an area with not one, but two, incredible medical facilities. I guess that we will know more soon and we are crossing our fingers that it was caught early.
I really hope it's the case that it's still in the early stages... it sounds like you're being a good, supportive friend. It's a tough diagnosis with a lot of really hard decisions.
Mar 22, 2012, 6:50am   #11
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gillianna
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This is a horrible disease. My mom had it-she had pancreaticis for at least 30+ years and was in the hospital a few times for it. I really feel her doctor did not diag. her early enough since she had stomach pain and problems for years without tests or anything. Finally when she turned jaundice and went in the hospital was it discovered. She was able to have the whipple surgery at Sloan Kettering Hospital in NY-surgery went well and she also did chemo and radiation. The cancer spread to something like 25 lymph nodes in her stomach so it was really bad from the start.
She died 6 months after diag., but did not die from the cancer-she had a stroke. I felt she did her best to fight and was doing OK, the main problem she had was not eating well. I think she was afraid to eat because of some previous problems with pain so she lost weight.
I was on a few chat boards that gave alot of information about this disease and people or their family who had it. I think it might have been through John Hopkins hospital pancreas cancer online. I will have to try to find out. One man on the board was a survivor 5+ years later and doing great. I remember his stories and the people on this board were so supportive and had so many answers. I think being in an area with great medical facilities will work in your favor because they have the latest things and even clinical trials available.
I wish your friend the best. Even though there is something like a 5% survival rate for 5 years people do beat the odds. My one friend was told she would be dead from breast cancer over 8 years ago and she is still here-even when the doctors, radiologist gave up. So she found new ones who did not share this view.
I know this is kind of out there but check out Hippocratus Institute in West Palm Beach, Florida, I don't have their correct website right now. Their free magazine is great and (you can read their back issues online) I think and the stories of how people's lives have changed from following their program of eating raw is wonderful. Also check out
Crazy Sexy Cancer (don't have online website) (Her books are great) I really think changing how you eat to a raw diet has a huge effect on cancer even though most people will never give this a chance.
Mar 22, 2012, 10:56am   #12
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natalie78
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My grandmother passed away due to pancreatic cancer. She lasted for a only year after diagnosis despite chemo and rediation. It is a horrible disease. I wish your friend nothing but good wishes!

My father died from mesothelioma (asbesdos lung cancer). He was given a month to live after diagnosis. He lasted for four years. He volunteered for ever experimental drug out there because he figured his death may help someone else out one day. Most of his treatments were alternative and they did amazing things for him! Ultimately, the treatments could not save him, but it gave us another four years to be together and celebrate his life. I am now a big believer in alternative treatments.
Mar 22, 2012, 9:21pm   #13
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Aimgrrrl
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...and in case I didn't say it clearly enough, I am so incredibly sorry. I wish that nobody else would ever be diagnosed with pancreatic cancer. Most people don't, and can't, understand. It's not like any other type of cancer.

That said, there are rare subtypes of pancreatic cancer that are more hopeful. It takes a while for official diagnosis of the type, and it's a lot of "hurry up and wait" at a time that feels like every second counts. It can be infuriating and agonizing. But there are glimmers of hope. Fred Hutchison Cancer Research Center made an announcement this week that looks very optimistic: http://www.fhcrc.org/content/public/...-research.html
My dad was part of this research before he died on December 21. I hope your friend doesn't need it, but if she does, there are studies of this new treatment going on right now.

For whatever comfort it may give, just know that some stranger in Seattle is wishing for the very best outcome.
Mar 23, 2012, 8:34am   #14
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Thread Starter
vhdos
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Originally Posted by Aimgrrrl
...and in case I didn't say it clearly enough, I am so incredibly sorry. I wish that nobody else would ever be diagnosed with pancreatic cancer. Most people don't, and can't, understand. It's not like any other type of cancer.

That said, there are rare subtypes of pancreatic cancer that are more hopeful. It takes a while for official diagnosis of the type, and it's a lot of "hurry up and wait" at a time that feels like every second counts. It can be infuriating and agonizing. But there are glimmers of hope. Fred Hutchison Cancer Research Center made an announcement this week that looks very optimistic: http://www.fhcrc.org/content/public/...-research.html
My dad was part of this research before he died on December 21. I hope your friend doesn't need it, but if she does, there are studies of this new treatment going on right now.

For whatever comfort it may give, just know that some stranger in Seattle is wishing for the very best outcome.
Thank you so much for this.
Mar 23, 2012, 10:59am   #15
EMMY's Avatar
EMMY
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vhdos I'm so sorry to read this....This is one disease I truly hope I never have to witness anyone I know or love suffering from..sending lots of hugs..hang in there.. :)
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