Pancreatic Cancer Survivors

jimnsherry

Hello, I am wondering if there is a place to find out the longest surviving Pancreatic Cancer survivor. I am doing great myself since 1/2005 Whipple. I thank God for my blessing. I am looking forward to getting through five years, only 3 1/2 years to go, so I was wondering if anyone has contact or knows any Pancreatic Cancer survivors of 5 years or more, it would be nice. THANKS

dasaborner

Hang in there. My wife had the Whipple at Memorial Sloan Kettering on 2/17/03. Now, 3 1/2 years out and scans continue to be clear. Anxiety heightens with coming of each scan, now every 6 months. Our oncologist, Dr. Jeremy Kortmansky, left Sloan this year and now practices in New Haven, CT. Therefore, we switched to be with him in his new practice.

However, the question you need to ask is what the Whipple was performed for. Was it a tumor in the pancreas, or was it out side the pancreas in one of the ducts? The protocol is the same.However, the long range outcomes will be widly different. Otherwise, your search for survivors has no meaning. My wife's tumor was at the Ampular of Vader, not in the pancreas. Good luck to you in your recovery.

jimnsherry

dasaborner said:

Hang in there. My wife had the Whipple at Memorial Sloan Kettering on 2/17/03. Now, 3 1/2 years out and scans continue to be clear. Anxiety heightens with coming of each scan, now every 6 months. Our oncologist, Dr. Jeremy Kortmansky, left Sloan this year and now practices in New Haven, CT. Therefore, we switched to be with him in his new practice.

However, the question you need to ask is what the Whipple was performed for. Was it a tumor in the pancreas, or was it out side the pancreas in one of the ducts? The protocol is the same.However, the long range outcomes will be widly different. Otherwise, your search for survivors has no meaning. My wife's tumor was at the Ampular of Vader, not in the pancreas. Good luck to you in your recovery.

Yes, Mine was also the AMPULLAR OF VADAR, I am encouraged greatly by your answer, thanks.

dasaborner

jimnsherry said:

Yes, Mine was also the AMPULLAR OF VADAR, I am encouraged greatly by your answer, thanks.

Wow. You have got to get a hold of this article, made available by a friend in June, 2003, or 4 moths after Alice's surgery. I'll give you the details of where to find the research. Here is the statement of hope:

"This review focuses on the management of periampullary pancreatic adenocarcinoma that is localized and resectiable. Althought patients with this subset of tumors constitute only 15% to 20% of patients with pancreatic cancer, these are the only pancreatic cancer patients for whom treatment is clearly curative in intent. Wow!

Article is: Therapy for Localized Pancreatic Adenocarcinoma: One, Two, or Three Modalities?
By Peter W.T. Pisters, MD, Vincent J. Picozzi, MD, and Ross Abrams, MD. Address reprint requests to Peter W.T. Pisters, MD, Department of Surgical Oncology, Unit 444, The University of Texas, M.D. Anderson Cancer Center, 1515 Holcombe Blvd, Houston, TX 77030-4009. email: ppisters@mdanderson.org

waynec

I was diagnosed in March 2000. My tumor was in the duodem not the pancreas. Dr. Laws said it was only the second time in 40 years he had seen it in this spot. Could not take the tumor out. It was embedded in the major blood vessels. Have two recurrency in the past six years. The first time in one lymp node and last year in the same lymp node and then the original tumor started to grow again. Back on 5Fu. Hope everything goes well.

chief

I will hit the 5 year mark in May of next year. Doing well.

jimnsherry

waynec said:

I was diagnosed in March 2000. My tumor was in the duodem not the pancreas. Dr. Laws said it was only the second time in 40 years he had seen it in this spot. Could not take the tumor out. It was embedded in the major blood vessels. Have two recurrency in the past six years. The first time in one lymp node and last year in the same lymp node and then the original tumor started to grow again. Back on 5Fu. Hope everything goes well.

thank you for you reply, even though you are having a tough time of things, I wish you well, and hope you are doing better now then back in July. Thanks

Jjacobs0816

Hello there, My mom was diganosed with pancreatic cancer on Sept 04, she went through radiation and chemo. Her cancer was in the duodem also! It was unoperable b/c of the attachment to the main artrey! Altough I do believe that her treatments prolonged her life. She battled cancer for 2 and half years! She just passed away in May 2006 and now I know that she is a true survivor!

I know that really doesnt count for you trying to find the longest surviving pacreatic survivor.

Jessica

jimnsherry

Jjacobs0816 said:

Hello there, My mom was diganosed with pancreatic cancer on Sept 04, she went through radiation and chemo. Her cancer was in the duodem also! It was unoperable b/c of the attachment to the main artrey! Altough I do believe that her treatments prolonged her life. She battled cancer for 2 and half years! She just passed away in May 2006 and now I know that she is a true survivor!

I know that really doesnt count for you trying to find the longest surviving pacreatic survivor.

Jessica

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.

jawsjr51

I am about to undergo the Whipple Procedure. Can you tell me from your experience what I will face? I have a 3 cm muscinuos cyst in the head of my pancreas. PET scan shows potential for caner around the outer rim of this cyst. I am a 56 year type 2 diabetic in outerwise good health.

jawsjr51

dasaborner said:

Hang in there. My wife had the Whipple at Memorial Sloan Kettering on 2/17/03. Now, 3 1/2 years out and scans continue to be clear. Anxiety heightens with coming of each scan, now every 6 months. Our oncologist, Dr. Jeremy Kortmansky, left Sloan this year and now practices in New Haven, CT. Therefore, we switched to be with him in his new practice.

However, the question you need to ask is what the Whipple was performed for. Was it a tumor in the pancreas, or was it out side the pancreas in one of the ducts? The protocol is the same.However, the long range outcomes will be widly different. Otherwise, your search for survivors has no meaning. My wife's tumor was at the Ampular of Vader, not in the pancreas. Good luck to you in your recovery.

I am about to undergo the Whipple Procedure. Can you tell me from your experience what I will face? I have a 3 cm muscinuos cyst in the head of my pancreas. PET scan shows potential for caner around the outer rim of this cyst. I am a 56 year type 2 diabetic in outerwise good health.

bkr31

jawsjr51 said:

I am about to undergo the Whipple Procedure. Can you tell me from your experience what I will face? I have a 3 cm muscinuos cyst in the head of my pancreas. PET scan shows potential for caner around the outer rim of this cyst. I am a 56 year type 2 diabetic in outerwise good health.

I hope you are doing well....I am sure you have had your procedure by now. I had mine done almost a year ago....i made it 6 mo with no signs of growth and now i am hoping to make it to one year....I am 31 years old and had a tumor the size of a softball at the head of my pancreas...the whipple was tough and i had complications such as my wound did not heal like it was supposed to and i had to have a wound vac for many months...I developed a blood clot in my lung and was in the hospital for a week and then on blood thinner for 6 months....but all in all i feel so much better now...i will say a prayer for you and i hope you are doing well!!!

SATTERMAN1

jawsjr51 said:

I am about to undergo the Whipple Procedure. Can you tell me from your experience what I will face? I have a 3 cm muscinuos cyst in the head of my pancreas. PET scan shows potential for caner around the outer rim of this cyst. I am a 56 year type 2 diabetic in outerwise good health.

WHIPPLE
I had my whipple done on 07-08-08. i was in hospital for 3 weeks. i am at home now recooping. i am sore. where my jp was it still leaks i have a large bandage over it. the doctor thinks it's an infection ????. on meds for it. just went to oncologist yesterday, boy did not know just how much doctors don't know about ampular cancer. my tumor was at the base of my duct. doctor said i caught it early. oncologist said caught early and more then likely all gone, even though it invaded two nodes. however she recommended 5 types of chemo for 6 months 1 day a week. i go in for pet scan next week even though i'v had three mri's and ultras in past three month. i pary for all and all with this cancer...john

B Selvakumar

survival after whipple's surgery for pancreatic cancer
I underwent whipple's surgery for pancreatic cancer on 26.12.2007 apollo hospital, chennai, India and I have survived a year without much of a problem. The lab tests of the parts removed revealed that it was neuro endocrine carcinoma on the head of pancreas. it had not affected the lymph nodes. I have not gained much weight after the surgery. I am on insulin. I would like to know more about NEC and also survival after whipple.

B.Selva Kumar
03.01.2009

lindamccb

survivor of pancreatic cancer
In 2006 it was discovered that I had grapefruit-size pseudopapillary tumor of the pancreas(began in the head). A whipple was performed to remove the extremely rare tumor which had spread to my stomach, spleen and ovaries. I did not have to have chemo or radiation because removal of the tumor removed the cancer which was contained inside of it. However, in November, 2008, it was discovered that the original cancer had metastasized to my liver. In December, a liver resection and radiopathy were performed to remove the new tumors. I am doing well, but because this is such an extremely rare type of cancer, and one which can but seldom metastasizes, my oncologist is struggling with a post op course of treatment. Originally he told me that I would have an aggressive course of chemo and possible radiation. Now he has ruled out radiation and is conferring with doctors around the US who may have treated this type of cancer and what they would suggest. The waiting game is tough but at least I am cancer free once again, and the prognosis is very good.
If anyone has information on this type of cancer, experience with treatment of it, I would very much like to hear about it.

Meanwhile, keep your spirits up because there are many survivors out here like me who are pulling for you and have you in our prayers.

Linda Mcc-b

Pluggan

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!!

Pluggan

sort of back pages
Just wondering why Pancreatic Cancer is not listed on the main page, but rather under rare (which it is not) and other cancers.....I don't mean to be "picky" but often PC patients consult web pages in an urgent way after diagnosis and could easily go on to another site when their cancer is not a prominent display. Thanx!

jimnsherry

Pluggan said:

sort of back pages
Just wondering why Pancreatic Cancer is not listed on the main page, but rather under rare (which it is not) and other cancers.....I don't mean to be "picky" but often PC patients consult web pages in an urgent way after diagnosis and could easily go on to another site when their cancer is not a prominent display. Thanx!

Rare and other cancers
In answer to your question of why isn't Pancreatic Cancer on the main page, well I hated it too when they changed it. It used to be a main category and when it was changed to be under Rare and other cancers I felt hopeless. Here I am freaking out about Pancreatic Cancer and all of a sudden this cancer which is killing my husband is insignificant. How can they do that to me? But there it is, nothing I can do about it. I don't think you are lucky, I think god has decided to give you his grace, use it in good health. Sherry

SueBIE2

Pluggan said:

sort of back pages
Just wondering why Pancreatic Cancer is not listed on the main page, but rather under rare (which it is not) and other cancers.....I don't mean to be "picky" but often PC patients consult web pages in an urgent way after diagnosis and could easily go on to another site when their cancer is not a prominent display. Thanx!

I wondered that too when my
I wondered that too when my husband was diagnosed with Stage IV Pancreatic Cancer. I didn't have time to do a full search of the site when there were many more available websites to research. He only survived 23 days. Diagnosed 15 August 2008 - passed 7 September 2008. This desease SUCKS!!!! We need more research on PC.

LindaNuc

SueBIE2 said:

I wondered that too when my
I wondered that too when my husband was diagnosed with Stage IV Pancreatic Cancer. I didn't have time to do a full search of the site when there were many more available websites to research. He only survived 23 days. Diagnosed 15 August 2008 - passed 7 September 2008. This desease SUCKS!!!! We need more research on PC.

SO FAST?
Hi SueBIE2,
My heart goes out to you. My husband was just recently diagnosed with stage 3 pancreatic cancer. How did he pass away so quickly? Where all had the metastisies spread to? What was his age? I am so sorry that your time was so limited.
LindaNuc

tysox45

pancreatic cancer survivors
My grandpa had the whipple procedure done about 15 years ago. I was young at the time and did not understand the dire prognosis of pancreatic cancer. If I did I would surely have more details for you. He had his procedure done in Boston MA. The cancer never returned. He had a host of other unrelated complications that should have done him in, but no more cancer. He is on life support and dying from a massive stroke as I am writing this, so that would make him a survivor for about 15 years. I will try to find out more from my family in the coming days, and would be happy to share. It will help me feel better about his passing knowing his survival story could be an inspiration to somebody else. I know that sounds corny but I am having a difficult time coping. One thing I can tell you about my grandfather is that he was a stubborn man. He would swear that the sky is green. Maybe he had this attitude about the cancer's chances of killing him.