Pancreatic Cancer Survivors

jimnsherry said:

thank you for your reply, and your mom had to be a real trooper. My wife's mother battled cancer for 2 and half years (lung) and I know my wife was in a lot of pain watching mom go through this. Condolences on your mom, and thank you for replying. god bless your future.

Pluggan said:

Whipple survivors
I had a whipple done in 2000 after a diagnosis of PC.......I shall paste in a letter I wrote to Milo's corner (a page associated with pancreatica.org)......this page is specifically for follow up of Whipple survivors....Hello
I thought I had seen and explored every pancreatic cancer site in the universe, but I had never seen one solely dedicated to Whipple veterans. I am both impressed and relieved!
I am an eight year survivor, having had my procedure in April 2000. I had been diagnosed with PC only 4 weeks before surgery, and pre-op biopsy from brush cytology showed tumor to be non-malignant and confirmed with sample obtained during surgery. It became apparent that I did not have PC, classically at least, but what I call necrotizing pancreatitis ,in that due to a probable protein blockage, pancreatic enzymes became activated......I have been informed that 8-10% of tumors are found to be such.
This essential difference makes quite a difference in presentation.......instead of hepatic infection and mild pain I had 4 or 5 massive attacks of abdominal pain, each of which I felt I'd never survive. I add this in order to ask of any commonality with other Whipple "veterans". I was and am alcoholic, though sober since Nov. of '99......the Whipple being one hell of way to modify one's behavior. (I had fought alcoholism, though, most of my adult life). I also had a GP who knew me well, and was ready to believe my descriptions of pain, since after the first hospital admittance nothing conclusive was found having ultrasound, MRI, and cat scan. The subsequent ERCP gave the PC diagnosis.
My recovery, in retrospect, was without incident.......but only in retrospect, as I'm sure you understand! I returned to work about 2 months later and worked until my retirement in 2007. I stayed working 2 years after my earliest retirement date, but left then to enjoy a bit of life......a decision prompted by the Whipple experience, but also in course of my railroad work (exactly 1 year post-Whipple, April 2001) I was involved in a major train derailment where I was thrown through a wall of a passenger car that had become the point of impact with a concrete foundation during the derailment. I needed no further challenge to my mortality......and once again in retrospect .....I suppose that hastened my retirement decision!
Now eight years later, as I'm sure you understand, it all seems to have happened to somebody else. There are uncanny similarities, however, to the described incidents.....the most prominent being survivor guilt. And, as you have indicated, there's not much of a community of numbers. Much like the rapid education just prior to the Whipple regarding one's own anatomy.....you quite accurately describe the subsequent on going education!
I am involved, however in a local group "craigs cause" www.craigscause.ca , a site developed by the daughter of a PC patient, who died from complications shortly after his Whipple.
I am a 58 year old male and have lots of questions and perhaps an odd answer or two, to life post whipple and consider myself fortunate to have stumbled across your site.
Isn't it strange though when well meaning folks comment on how "lucky" you are.......I just nod, while I secretly believe that if I were that "lucky" I would never have needed a Whipple in the first place, and never took the train that day!!

Fortunate yes........lucky no!!

TheGator said:

Concerned, Scared and ...Waiting
Just diagnosed with pancreatic cancer. First appointment with oncologist verified the CT scans. Return on Tuesday for PET scan and then followup appointment on Friday. I have every hope of beating this thing, faith in God and just plain old gristle that I've been noted for. I'm determined that I'm not going to give up. At this point, just waiting to see how extensive this stuff is - oncologist said the only way to treat it is with Gemzar but research on the web indicates that many other approaches may be possible - if God's willing, I'm going to try them all until I find what works. I have the love of my wife and family and a few good friends to help me. I will not "go gently into the night."

alternativeoncologists said:

Hello,
Do you know of a resource for finding alternative oncologists in our area of Milwaukee, WI?

thanks

Bro2 said:

UPMC Experience
Hello muser22,

God bless you, your husband, and your family.

My brother was recently diagnosed with CUP, but best guess is bile duct. Our family is also going through the many emotions that, I am sure, everyone experiences. My brother was diagnosed on October 7, and has started his chemo treatment with cisplatin and gemcitibine (tradename Gemzar). He is being treated at UPMC - Hillman. I would be interested to know the name of your husband's oncologist, and your experience at UPMC. Perhaps we can provide each other with useful information and support.

The following is a prayer that I have found to be comforting:

Dear Lord, you bore our sufferings
and carried our sorrows
in order to show us clearly
the value of human weakness and patience.
I now turn to you to ask you to heal
the soul and body of (____).
I know, Lord, that sin tears away
relationships between people and you.
But there is no illness and no wound
that you cannot heal.
Come and touch (____)
where he is most wounded and afflicted.

I believe in your healing power and
I trust and hope that you will hear my request
for my sick brother/sister.

If it is your will, however, that (____)
should carry this cross of illness
then I humbly pray that you give him/her
the strength and perseverance
to bear his/her cross with love.
Grant that he/she and all those
who are now weighed down
with pain and other afflictions
may realize that they are
among the chosen ones
whom you call blessed.
Help them to understand
that they are united with you
in your sufferings
for the salvation of the world.
Amen.

God bless,
Bro2

richardo said:

hey bro
seen your story and just wanted to say god bless you. im from west virginia but had my whipple done in pittsburgh at UPMC. had my surgery done last year in dec. by dr. zey. to me he is really good. im still on chemo and radiation for another 2 weeks and im done with that. i had many other problems that came along with the cancer. seems one thing clears up and another starts. since the chemo ive had dizziness, low grade fever, blood clot, legs swelling, stomach drained of fluids, but last pet scan showed no signs of the cancer . another appointment at hillman in april. also that was a beautiful prayer. take care and god bless you all. Richard

richardo said:

hi muser
thanks for the reply, im glad hes doing ok. besides some side affects as i mentioned, the gemzar for me wasnt to bad. i started gemzar in feb. 2010 but they had to extend it because of either my white blood count was to low or my platelets to low. i also was wondering if i made the right decision. it took me 4 months to decide. they told me in july of 09 that i had cancer. i was really scared and didnt know what to do. i am glad i got ahold of dr. zeh in pittsburgh, oh ya, i spelled his name wrong last time. by that time my cancer was in stage 3 and i figured as you did, what choice do you have. also if they happen to mention cyber knife radiation, please make sure you get all the information you can on that. ive heard bad news on that but also heard others say its ok. me myself, im doing a 5 and a half week of regular radiation. well again im happy to hear that hes eating good and getting his strength back. take care and god bless

destinie35 said:

whipple survivor
Hi everyone. I am replying to this post since it was relatively recent. I am trying to find out about long term complications of the whipple. My mom had hers in 2000 and is doing good, considering. She became diabetic but manages to control that. In the last year she has been having problems with her stomach emptying the food out. She has gastroparesis and was on Reglin for a while, but it caused her to have severe tremors, so they stopped that. She is now on Domperidone which is a non-FDA approved drug from Canada. The anastomotic site where they reconnected her jejunum to her stomach was narrowing and she has had 3 procedures to stretch it. She now has edema around the area and so the food still isn't moving like it should and the doctors are scratching their heads. Shwe has a lot of pain and what she describes as "twisting" in the top of her stomach that the doctors have said is a combination of her stomach not pushing the food out like it should and the narrowing not allowing the food to pass like it shouold. I am trying to figure out if there are any 10 year plus survivors out there and if they have any of these or similar complications. I just don't know where else to turn bc this cancer is so bad that there aren't alot of blessed and fortunate survivors like my mom and you all. Any advice, help, words of wisdom would be much appreciated. thanks, Julie

destinie35 said:

whipple survivor
Hi everyone. I am replying to this post since it was relatively recent. I am trying to find out about long term complications of the whipple. My mom had hers in 2000 and is doing good, considering. She became diabetic but manages to control that. In the last year she has been having problems with her stomach emptying the food out. She has gastroparesis and was on Reglin for a while, but it caused her to have severe tremors, so they stopped that. She is now on Domperidone which is a non-FDA approved drug from Canada. The anastomotic site where they reconnected her jejunum to her stomach was narrowing and she has had 3 procedures to stretch it. She now has edema around the area and so the food still isn't moving like it should and the doctors are scratching their heads. Shwe has a lot of pain and what she describes as "twisting" in the top of her stomach that the doctors have said is a combination of her stomach not pushing the food out like it should and the narrowing not allowing the food to pass like it shouold. I am trying to figure out if there are any 10 year plus survivors out there and if they have any of these or similar complications. I just don't know where else to turn bc this cancer is so bad that there aren't alot of blessed and fortunate survivors like my mom and you all. Any advice, help, words of wisdom would be much appreciated. thanks, Julie