Pancreatic Cancer Survivors

hopeful53 said:

53 years female
i too was told the cyst on my pancreas couldn't be anything because it was small. i insisted on having it tested it took 1 year but the doctor then was all appolgies because the cea markers are 8995 considered high and it is suggested i need whipple. i am having a hard time with this, in canada you don't get appt fast is this something i should be concerned about and try to get over to detroit or do i have time to wait? does anyone know how this spreads. is this again early detection better chance at cure?

hi hopeful53, i also have pancreatic cancer and was told that i would b cancer free after whipple op. i had intense chemo and raditaion for 3 mths i then did chemo every 4 weeks i had pet scan and was told i was all clear, then pain started again and more test were done and it was in my liver, doctor gave me 3 mths. i then saw another doc who preformed the probe which
is a big needle inserted into my liver and killed the tumor, that was oct 08 kept up with chemo and now it is in my lungs and back in my liver, but there are 3 tumors in liver one is on the main artery called the vera cava its the size of a tennis ball, the other 2 are 5cm and 2cm. my doc gave me 2 mths if he treated with chemo or i could have radition beads inserted straight into the tumors in which i did, i had that done 8 weeks ago feeling okay now my tumor maker is 53. the tumors in my lungs are laying dormant. i take a drug called tarceva (Erlotinib)100mg 1 each morning in which i have been on since jan09 it stops the oxegione feeding the tumors, i beleive this drug has kept me going for so long, im also 53 and hope to be around a while yet, just beleive in yourself, stay postive even if u get bad news, always talk to family and friends and dont stop living, Good Luck and my prayers r with u Janine

Spookman said:

Fighting pancreatic cancer
Hi everyone,

My 63-year-old mother was recently diagnosed with metastatic pancreatic cancer in the tail of the pancreas (apparently that's a 'good' location) and I think the lymph nodes. She can't have surgery but has been placed in a clinical trial in which she will receive either Gemcitabine (Gemzar) on its own or in conjunction with ABI-007 (Abraxane), depending on which group she is randomly assigned to.

Most of the success stories I'm reading follow the Whipple procedure so I'm hoping for news of people who have beaten this devil without it. Mum is otherwise fit and healthy and has an amazingly positive attitude that she will beat it but I know the stats aren't good.

Her doctors (we're in Australia) say the trial has shown good results, but what they think is good and what I do are probably far removed. I don't want my mum to live for eight months instead of six, I want her to live another 20 years or more! So if anyone can help give me hope, don't be shy!

Having never been affected by anything like this before it has really hit hard, especially as Mum is the heart of our large family. To everyone out there fighting this or with loved ones who are, my heart goes out to you.

As Winston Churchill said, "Never give up. Never give up. Never give up". I know my mum won't.

Spookman.

Pancreatic Cancer
There is hope. I was diagnosed with a Pancreatic adenocarcinoma in Jan 2007 (yes, 5 years in another month). My tumor is located in the head of the pancreas and is inoperative as it surrounds the superior mesenteric artery. Hense, Whipple surgery was not an option. I also live in Australia and aged 63. I continue to have chemo but the good news is I enjoy very good health. As I do not know any detail of your mother's circumstances, I am reluctant to offer any advice at this stage however I am willing to share my experiences with you should you be interested. I don't need to remind you of the dire prognosis of this disease but there are some success stories even among those that cannot have surgery. In the initial stages of treatment I suggest you resist the temptation of alternative medicines or herbal "boosts" to the immune system - you should first see how the body naturally reacts to the Gemcitabine without artificial interference.

Regards,

Peter

PeterP said:

Pancreatic Cancer
There is hope. I was diagnosed with a Pancreatic adenocarcinoma in Jan 2007 (yes, 5 years in another month). My tumor is located in the head of the pancreas and is inoperative as it surrounds the superior mesenteric artery. Hense, Whipple surgery was not an option. I also live in Australia and aged 63. I continue to have chemo but the good news is I enjoy very good health. As I do not know any detail of your mother's circumstances, I am reluctant to offer any advice at this stage however I am willing to share my experiences with you should you be interested. I don't need to remind you of the dire prognosis of this disease but there are some success stories even among those that cannot have surgery. In the initial stages of treatment I suggest you resist the temptation of alternative medicines or herbal "boosts" to the immune system - you should first see how the body naturally reacts to the Gemcitabine without artificial interference.

Regards,

Peter

Pancreatic Cancer
Awesome, Peter! So happy to read you are surviving. My husband, diagnosed 6/11 with non-resectable because tumor wrapped around artery, going for 10th round of Fulfirinox treatment tomorrow. Overall, pretty good health except being VERY tired. Did you do radiation? And what type of chemo did you get?

cbirger said:

Pancreatic Cancer
Awesome, Peter! So happy to read you are surviving. My husband, diagnosed 6/11 with non-resectable because tumor wrapped around artery, going for 10th round of Fulfirinox treatment tomorrow. Overall, pretty good health except being VERY tired. Did you do radiation? And what type of chemo did you get?

Pancreatic Cancer
Hi cbirger. My treatment started with 6 chemo (Gemcitabine as single agent) sessions over 2 month period (Mar - Apr '07). This was followed with 25 radiotherapy sessions concurrent with continuous Fluorouracil infusion over 5 weeks (May - June '07). Since then I have had 4 further chemo (Gemcitabine) treatments of either 4 or 5 cycles. My quality of life is very good. I understand that Fulfirinox is usually only used as a first-line option for patients with metastatic pancreatic cancer. If this is the case, Fulfirinox has a proven survival advantage over Gemcitabine but has greater toxicity.

Long term survivor from 1982-2011
Here is a link to the (sadly) obit of a former co-worker. He retired in 1982 after being diagnosed with PC. He beat it by, among other things, making himself eat his standard diet during and after treatment. Amazingly, he went on to have three additional cancers (bone, colon and liver)! It was the liver cancer that finally defeated him (age 77) at the end of this past July. So, even fighting the other cancers, he lived 29 years after his Dx with PC.

http://www.legacy.com/obituaries/seattletimes/obituary.aspx?n=verney-w-fitzgerald&pid=152900376

Barbara1227 said:

Whipple procedure
I was diagnosed with a rare form of pancreatic cancer in September 2011. I had a neuroendocrine tumor, which only occurs in about 5% of pancreatic cancer patients. I had a Whipple procedure in November, done by a top-notch oncologic surgeon. I did have complications, including a twisted bowel that wasn't letting anything through. It caused me to throw up liters of stomach fluids and bile for five days, until I was given a nasogastral tube. My surgeon did a second operation to correct the complications two weeks after the original surgery, which took care of the problem. I was in the hospital for three weeks. Because the tumor was Stage 1 I didn't have to have chemo or radiation, but will be followed by an oncologist. The outlook for this type of tumor if it is found early is very good, so I'm not worried except for that little nagging feeling in the back of my mind, which causes me to be vigilant. I've lost a lot of weight in the six weeks following surgery, and it is not very easy to eat yet. I'm glad to meet a fellow Whipple patient and I will continue to keep in touch.

Things you might try for getting weight back.
Barbara,

I hope they have hooked you up with a dietitian. Mine actually gave me a free cookbook. It had numerous ideas on food for people who have had or have pancreatic,stomach or intestinal type of cancers. I found this cookbook and my dietitian to be a great help.

I had lost from 170lbs. down to 110 in a month. I had stage 3 PC. Had the Whipple done in 2008. I was unable to eat and had a feeding tube (J-tube) put in for sometime before surgery. I know how maddening it can be. Wanting to eat and not being able to! Now days I can eat most anything I like.

These are some of the things I tried and had luck with before surgery in order to keep some sort of intake by mouth. Muscle Milk, Boost ( There is another brand. I just cant recall right at this moment,but, it didn't work for me.) and watered down Liquid Jell-o.
After the Whipple I was told to eat as much guacamole as possible. It adds weight pretty fast. Everything was in small portions as often as I felt like and could tolerate. I had chemo after the Whipple so eating and keeping it down was an ordeal for some time. Once I finished chemo though...I started eating most anything that didn't try to eat me first! I am one of the fortunate ones who only have to take a few enzymes with each meal. Some folks have to take several. Whatever you do just don't eat to much at one time when you do get your appetite back. It can, in my case, hurt like just waking up after the Whipple. I hope you are luckier! But trial and error will sort out what you can and cannot eat also how much. Each person I have met who has had PC seems to go through this process.

GOD'S SPEED in your recovery,

Oneshot

My dad had pancreatic cancer
My dad had pancreatic cancer and survived 20 years after having the Whipple procedure. Be encouraged

lizzydavis said:

Pancreatic Cancer Survivors - Would be nice if they had
Pancreatic Cancer Survivors - Sure would be nice if they had us separated into a Pancreatic Group so that we could focus on our issues.

I was diagnosed in Nov. 2011 with Stage 4 and would like to hear from any of you out there in the same boat.

Lizzy

Group for pancreatic survivors
Yes, quite agree, Lizzy. Don't understand why it's not in the list of survivor cancers. All the best!

missingdad said:

My dad had pancreatic cancer
My dad had pancreatic cancer and survived 20 years after having the Whipple procedure. Be encouraged

Wow, missingdad!

Wow, missingdad!

my father
My father is a survivor of pancreatic cancer. He had the whipple surgery in 98. it's been a hard road for him.. However, right now he is living in Vegas and is very active. im not sure how long the longest person has survived but in dec of this yr will be 14 yrs for my father. good luck to you.