Survivors...I want your stories!!!

Please tell me your stories...I need them now!!!

there is a man on this board who is from ny who is a 20plus pc survivor. i hope that he will write to you. my husband had the whipple done in november and chemo and radiation since then. physically, the whole ordeal beat him down but he is done with chemo now and we intend to get on with living as a cancer survivor. through a healthier lifestyle and changes in our diet, he hopes to rebuild and move on. and last but not least, the Lord is walking with us all along the way. alot of hard parts but a lot of good. and my husband is grateful for every day he is alive. something he couldn't say before. our best to you. sincerely jimandkathy

Hi!  My 46 y/o brother was diagnosed just this January with inoperable pancreatic cancer.  Our sister located Dr. Bruckner in Manhatten (we're in Indiana) who agreed to see Joe and almost immediately said that he could help him.  Joe has had heavy-duty chemo treatments every two weeks; our sister found an oncologist at IU Med Ctr who would follow Dr. Bruckner's protocol so he no longer has to make the trip to NY.  His last two scans have shown shrinkage of the numerous tumors in his liver and he is extremely fortunate to have few side effects from his treatment.  He's lost his hair and gets fatigued easily of course, but he has actually gained some much-needed weight.

If you'd like more details about the treatment, doctors, etc. I'd be happy to give you that.

Susan

Hello my dear friend...  My husband was admitted to the hospital October 18,2005. He had lost approximately 15 pounds in a short period of time,since he was a type 2 diabetic at that time his Physician told us the weight loss was due to his inability to control his diabetes, then on October 16th he began to turn yellow and was subsequently admitted to the hospital.  He had a Cat Scan but it was inconclusive so they decided to do an exploratory surgery to see if the jaundice was due to a blockage that is when they found the pancreatic tumor, they proceded to do the whipple procedure to remove the tumor.  Our wonderful surgeon told us he got the entire tumor but there was one lymph node involved. He referred us to an oncologist for follow up care.  He recovered very well from the surgery. On November we met with the oncologist. We were told that he had a year to a year and a half to live. We were in total complete shock. He began 6 months of chemo along with Tarceva. He is scheduled for a cat scan every three months. Our last scan was in May  2007 with NO EVIDENCE OF CANCER.  We do not have to see the oncologist now until Sept 1st.  He is now a type 1 diabetic and believe me his sugar his very hard to control. He takes insulin shots 4 times a day. He has gained all his weight back, and is at this time cutting the grass.. He will be 73 years old in November.. He is now 20 months CANCER FREE. Never give up..Please continue to fight this awful disease and please continue to pray.  Please pray for us as we certainly will pray for you.. Hope this gives you some encouragement....

 

 

Hi, I hope that my recovery helps you and please feel free to write me.  I am happy to respond to your questions. Don't hesitate to contact me and don't feel that yu are bothering me.

Hello all.  I am thrilled to see great stories with life after the Whipple.  I am a long term survivor.  I had my Whipple in NY in 1990 and spent the next, almost 1 year living my life and recovering in Florida.  My surgery was 14 hrs (that is what my family tells me)  I remember waking up with a tremendous weight lifted from my shoulders and right then, I knew I was going to make it.  My Dr. was fabulous and very well known at Mt. Sinai in NY.  I was in the hospital, then, for 10 days.  I was told that my GP would not do chemo for me because  #1, The surgeon said that he held my organs in his hands and looked at everything and felt he got it all.  My tumor was in the head of the pancreas, so he took part of my pancreas, duodinym (spelling?) 1/2 of my stomach, my gall bladder,part of the intestines and my spleen, if I remember correctly.  I do not take digestive aids because most of the time I do not need them even though I cannot eat a lot and take a bit longer digesting foods.  I was told that I may have diabetes sometime and to be aware of my sugars,  I was also told by my surgeon that I would have reflux due to the way they resectioned my intestines.  I certainly do get reflux and take pepsid for that.

I credit my recovery to my family and the caring Dr's that I was fortunate enough to have in my corner.  I had the best...all around.  It was dificult and a bit painful in the healing process.  I still am tender after so much time has gone by where my scar is.  I still find myself "protecting" my abdominal area.  I get full quickly, try not to eat a lot.  I can eat everything and there are a few things I cannot tolerate, namely fattier and greasier foods, so I try to avoid them.  The surgery was massive and when I see my oncologist 2 x's per year, still, he tells me that I am a miracle.

I have had 5 people very close to me and relatives of theirs have Pancreatic Ca, who survived because of the whipple.  I try to talk to anyone who finds me about this type of Cancer.  I am happy to help anyone who needs someone to bounce questions off.  Remember, I am still here and I really believe that your attitude is basic to the recovery process and to healing yourself.  I still use positive imagery and am a bit more spiritual in my thoughts then a lot of people.  It works for me.

I hope that anyone reading this can benefit from my experiences. I wish you good fortune.

Thank you so much for sharing your experience with us about PC. 

My purpose in writing is two fold: first to thank you for your insight and information and second to solicit your help and the help of our fellow patients with their experiences, thoughts and ideas regarding what may very well be evidence of the advance of my disease.  In that regard, I have briefly described my situation and experience in order to provide a baseline for your review and consideration.  I remain hopeful that I too can one day have a lifetime of "life" with many more years under my belt.  The information that we exchange amongst ourselves is at least as valuable as the information coming from the medical community and I for one think it is more valuable.  Anecdotal information especially because of the lack of meaningful data can be tantamount to quality and length of life.

You are indeed fortunate for having overcome, perhaps the most devasting part of this horrible disease--the sometimes crippling affect that the diagnosis alone has on many people.  To overcome what could be emotional devastation, a positive attitude is paramount.  Once a positive attitude is achieved, it is more likely that our decisions will be based upon intelligence rather than emotion; and our thoughts shift from victim to patient.  Surrounded by support, love and good information I have been able to succeed and I am indeed thankful.

I too had the Whipple--May 5, 2006 my surgery took about 8.5 hours and the pathology report was very good, BUT, within 3 weeks thereof, my first CT scan showed nodules in my lungs and liver that were suspicious.  Each of my subsequent CT scans resulted in the radiologist stating that the nodules in my lungs were highly suspisious for metastatic disease.  January 26, 2007 the needle biopsy of my lung confirmed that the nodules were in fact adenocarcinoma.  Notwithstanding a very few "bad" chemo days my attitude has remained highly positive.  At 64 years of age, you would never suspect that I have pc or that I am sick at all.  So far so good.

Comes now my 14th month since diagnosis, and I am so grateful for the time I have been granted, but I want much more time.  The problem is that after about a year of 5FU, and Gemzar and then Gemzar and Oxaliplatin,chemo and radiation has not worked, and there are no clinical trials that either me or my oncologists have been able to find. Fortunately, unlike the typical adenocarcinoma, my cancer seems to be very "slow growing". 

I am now experiencing pains in my upper back that appear to originate in my lungs---I am trying to rule out excerise as the cause.  Having said that, I am thinking that the cancer is finally "hurting".  I control the pain with morphine---because of degenerative spine disease and back surgery that didn't work I have been on morphine for about 5 years.  Therefore, I continue to take morphine for my spine induced pain and it is simultaneously treating the new back pain.

Is there anyone out there whose case presents like mine and if so, would you please be kind enough to share your experiences, thoughts and ideas.

Thank you,

Kendel

On 7/6/2007 Nysurvivor wrote:

Hi, I hope that my recovery helps you and please feel free to write me.  I am happy to respond to your questions. Don't hesitate to contact me and don't feel that yu are bothering me.

Hello all.  I am thrilled to see great stories with life after the Whipple.  I am a long term survivor.  I had my Whipple in NY in 1990 and spent the next, almost 1 year living my life and recovering in Florida.  My surgery was 14 hrs (that is what my family tells me)  I remember waking up with a tremendous weight lifted from my shoulders and right then, I knew I was going to make it.  My Dr. was fabulous and very well known at Mt. Sinai in NY.  I was in the hospital, then, for 10 days.  I was told that my GP would not do chemo for me because  #1, The surgeon said that he held my organs in his hands and looked at everything and felt he got it all.  My tumor was in the head of the pancreas, so he took part of my pancreas, duodinym (spelling?) 1/2 of my stomach, my gall bladder,part of the intestines and my spleen, if I remember correctly.  I do not take digestive aids because most of the time I do not need them even though I cannot eat a lot and take a bit longer digesting foods.  I was told that I may have diabetes sometime and to be aware of my sugars,  I was also told by my surgeon that I would have reflux due to the way they resectioned my intestines.  I certainly do get reflux and take pepsid for that.

I credit my recovery to my family and the caring Dr's that I was fortunate enough to have in my corner.  I had the best...all around.  It was dificult and a bit painful in the healing process.  I still am tender after so much time has gone by where my scar is.  I still find myself "protecting" my abdominal area.  I get full quickly, try not to eat a lot.  I can eat everything and there are a few things I cannot tolerate, namely fattier and greasier foods, so I try to avoid them.  The surgery was massive and when I see my oncologist 2 x's per year, still, he tells me that I am a miracle.

I have had 5 people very close to me and relatives of theirs have Pancreatic Ca, who survived because of the whipple.  I try to talk to anyone who finds me about this type of Cancer.  I am happy to help anyone who needs someone to bounce questions off.  Remember, I am still here and I really believe that your attitude is basic to the recovery process and to healing yourself.  I still use positive imagery and am a bit more spiritual in my thoughts then a lot of people.  It works for me.

I hope that anyone reading this can benefit from my experiences. I wish you good fortune.

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On 7/6/2007 Sengle428 wrote:

Hi!  My 46 y/o brother was diagnosed just this January with inoperable pancreatic cancer.  Our sister located Dr. Bruckner in Manhatten (we're in Indiana) who agreed to see Joe and almost immediately said that he could help him.  Joe has had heavy-duty chemo treatments every two weeks; our sister found an oncologist at IU Med Ctr who would follow Dr. Bruckner's protocol so he no longer has to make the trip to NY.  His last two scans have shown shrinkage of the numerous tumors in his liver and he is extremely fortunate to have few side effects from his treatment.  He's lost his hair and gets fatigued easily of course, but he has actually gained some much-needed weight.

If you'd like more details about the treatment, doctors, etc. I'd be happy to give you that.

Susan

 

What is the name of the Doctor in Indianapolis?  My brother lives in Indiana and is resisting going out of state.  I have suggested the doctor in New York.  His cancer is stable, but his doctor has said he is running out of bullets.  Can you share the Chemo combination your brother is taking?  My brother is also very young 52 and is currently doing FOLFOX.  Losing lots of weight.

 

 

 

On 7/6/2007 Lester wrote:

Hello my dear friend...  My husband was admitted to the hospital October 18,2005. He had lost approximately 15 pounds in a short period of time,since he was a type 2 diabetic at that time his Physician told us the weight loss was due to his inability to control his diabetes, then on October 16th he began to turn yellow and was subsequently admitted to the hospital.  He had a Cat Scan but it was inconclusive so they decided to do an exploratory surgery to see if the jaundice was due to a blockage that is when they found the pancreatic tumor, they proceded to do the whipple procedure to remove the tumor.  Our wonderful surgeon told us he got the entire tumor but there was one lymph node involved. He referred us to an oncologist for follow up care.  He recovered very well from the surgery. On November we met with the oncologist. We were told that he had a year to a year and a half to live. We were in total complete shock. He began 6 months of chemo along with Tarceva. He is scheduled for a cat scan every three months. Our last scan was in May  2007 with NO EVIDENCE OF CANCER.  We do not have to see the oncologist now until Sept 1st.  He is now a type 1 diabetic and believe me his sugar his very hard to control. He takes insulin shots 4 times a day. He has gained all his weight back, and is at this time cutting the grass.. He will be 73 years old in November.. He is now 20 months CANCER FREE. Never give up..Please continue to fight this awful disease and please continue to pray.  Please pray for us as we certainly will pray for you.. Hope this gives you some encouragement....

 

 

Your husband sounds amazing.  Your story was especially touching for me, as my mother was diagnosed in March 06. She had lost 15 lbs in 2 months, luckily her local family doc suspected pc, ct scans confirmed.  Whipple in April 06....checmo/radiation throughout the summer, lost my dad in a tragic auto accident in November, and mom continued chemo thru December.  Mets to liver in April 07, started clinical trial immediately, but now, almost done with clinical and docs stopped, due to mom's blood clotting in legs and she needed to get back on cumadin (sp?).  So, clinical trial has ended, we aren't sure if Gemzar will be an option. To be perfectly honest, I am afraid this is the beginning of the end.  Your message brings me hope, I need to stay optimistic and believe that maybe, just maybe, tumors in liver have shrunk and perhaps we have a year or MORE to spend with my sweet mother.  It's possible, I keep telling myself.  I'm not ready to lose her...she is only 75.  She has 6 wonderful daughters who would do anything under the sun to make her happy and help her beat this damn disease.  It's not fair for anyone. YOUR STORY gives me hope, thank you.  I am praying for you, pls pray for me. Thank you for sharing your good news, god bless you.

I am 46yr female.  I have felt sick a lot in my life time.  I was told in 98 my insulin levels were high, and went to endocronologists.  So my diet has been according to that.  3/23/06 was my BDay and I had to go home from work because I was doubling over thinking I had the flu.  I would lay down for a couple days and not eat and then get better.  This happened a lot.  I went to the doctor, he made up excuses of what was wrong with me.  Finially, Thanksgiving Eve 06 I had had pain for 3 days, he finially was going to schedule me for a CT.  Ok when do you think he was going to do this?  Well I went to ER and told them I wanted a CT and they found a mass on my pancreas. Still no one said anything to me about PC or a whipple.  But I was referred to Mayo in Jacksonville to have a scope down the throat to take a biopsy.  Backing up,  while in hospital they did do an MRI and scope only into stomache, Why? they already saw mass and knew they couldn't do anything.  Sorry, I don't have much faith in doctors but I will still listen to them.  Anyway, I called the Mayo myself within a week and saw a GI within a couple of days and the surgeon.  They told me about PC and the whipple after testing me.  So 12/19/06 I had my 10 hour surgery, 3 weeks in hospital, and now on the road to recovery.  I will admit this is the most horrific thing to go through.  But glad for God guiding me, and I am cancer free now.  I could probably type all day.  If anyone wants to chat, feel free to contact me.  I have found out by talking with others really helps me out a lot.  Dawnella

Thanks to all who has wrote... very inspiring.