looking to see how others recovered from a Whipple

I am a 40 y/o man who was diagnosed with Pancreatic Cancer in Jan of 07.  I had a whipple in April of 07.  My surgeon told me they would remove part of the pancreas (which would allow me to not become diabteic) rre plumb some of my digestive track and I would be good to go.  After 22 days in the hospital because of infections, I was released to go home. They ended up removing my entire Pancreas (now I am trying to adjust to being diabetic), my spleen and part of my stomach.  I was not prepared for any of that. 

I have been home for 5 weeks now.  The surgeon never put me on any enzymes so I continued to loose weight.  I started enzymes last week and I am maintianing my weight.  I struggle to get through the day because I can't maintian my energy level.  My sense of taste is not right.  I can taste the smallest amount of salt in anything. It is hard to eat because of this and because my stomach is smaller now. 

 I am also stuggling emotionally.  I am gratefule for this second chance at life.  The cancerous tumor is gone and there are no signs at this time of any other growths.  I get to spend time with my wife and 2 kids, but yet i feel so depressed for no apparent reason and various times of the day.

I know this is a lot of rambling and maybe just typing this out will make me feel better, but is there anyone out there in my situation? How are you coping?  Thanks, 

Hi.

My mother is fighting stage IV PC.  Her diagnosis was terminal and inoperable.  She can not eat (a half cup of jello is a huge victory for her right now), she's pretty much bed-ridden, has constant pain and takes what feels like a trillion pills per day.  She's also gone from 180 lbs to just over 100 lbs.  We truly do not know how much time she has left.  She seems to be worsening rapidly as of the last month.

With all of this said, you are truly blessed to be in the condition you are in.  I wish my mother's story had half of the success yours boasts.  I understand the shock you may be dealing with because of the events you've explained, but you are truly blessed.  Your spouse and children are not congregating around your bedside feeling guilty because they'd rather you die than to continue watch you suffer, as my family and I are experiencing.

Talk to your doctor to see if he can prescribe some nerve pills to help with the depression.  They've worked wonders for my mother.  She would cry uncontrollably before she started taking them.

Please know and thank God that you are in that VERY SMALL minority group that was given a second chance!  Congratulations!  Celebrate and enjoy life to the fullest now.

 

On 6/16/2007 Trying2moveon wrote:

I am a 40 y/o man who was diagnosed with Pancreatic Cancer in Jan of 07.  I had a whipple in April of 07.  My surgeon told me they would remove part of the pancreas (which would allow me to not become diabteic) rre plumb some of my digestive track and I would be good to go.  After 22 days in the hospital because of infections, I was released to go home. They ended up removing my entire Pancreas (now I am trying to adjust to being diabetic), my spleen and part of my stomach.  I was not prepared for any of that. 

I have been home for 5 weeks now.  The surgeon never put me on any enzymes so I continued to loose weight.  I started enzymes last week and I am maintianing my weight.  I struggle to get through the day because I can't maintian my energy level.  My sense of taste is not right.  I can taste the smallest amount of salt in anything. It is hard to eat because of this and because my stomach is smaller now. 

 I am also stuggling emotionally.  I am gratefule for this second chance at life.  The cancerous tumor is gone and there are no signs at this time of any other growths.  I get to spend time with my wife and 2 kids, but yet i feel so depressed for no apparent reason and various times of the day.

I know this is a lot of rambling and maybe just typing this out will make me feel better, but is there anyone out there in my situation? How are you coping?  Thanks, 

hello  as i read your letter out loud to my husband, he asked me to write to you and encourage you. first of all, i am a little surprised that there was such a gap between the diagnosis and the actual surgery. did you have chemo or radiation during that time period to shrink the tumor? jim is 52 years old and was still pretty active and healthy when he was diagnosed. he had diabetes that he took a pill 2x a day and that was it. now he takes insulin and checks his sugar and takes the shots. for him this is a minor inconvenience in comparison to many of the other things he has gone through. it really has not been all that long since your surgery. jim and i both agree that you are still very much in the "recovery" phase. there are alot of adjustments to make.  at times, jim would start crying over what seemed to be nothing. he was very emotional after the surgery which was not like him at all beforehand. he felt useless and worried about me because i was (and still am) carrying the work load.( disability will kick in this month after waiting for 5 months!) he wanted me to tell you to "give yourself a break". it will take more time. your body needs time to heal. physically, jim did not feel very strong at all for about 4 months after the whipple. even now, he still has stomach problems if he over eats or eats the wrong kinds of foods. our faith in a good God has brought us "safely thus far". we are hoping that you too will look up for the strength you need to get through each day. it sounds as though you are trying to maintain a thankful spirit and are grateful for the blessings in your life. if you have any questions, feel free to write. jimandkathy

 

 

On 6/16/2007 Trying2moveon wrote:

I am a 40 y/o man who was diagnosed with Pancreatic Cancer in Jan of 07.  I had a whipple in April of 07.  My surgeon told me they would remove part of the pancreas (which would allow me to not become diabteic) rre plumb some of my digestive track and I would be good to go.  After 22 days in the hospital because of infections, I was released to go home. They ended up removing my entire Pancreas (now I am trying to adjust to being diabetic), my spleen and part of my stomach.  I was not prepared for any of that. 

I have been home for 5 weeks now.  The surgeon never put me on any enzymes so I continued to loose weight.  I started enzymes last week and I am maintianing my weight.  I struggle to get through the day because I can't maintian my energy level.  My sense of taste is not right.  I can taste the smallest amount of salt in anything. It is hard to eat because of this and because my stomach is smaller now. 

 I am also stuggling emotionally.  I am gratefule for this second chance at life.  The cancerous tumor is gone and there are no signs at this time of any other growths.  I get to spend time with my wife and 2 kids, but yet i feel so depressed for no apparent reason and various times of the day.

I know this is a lot of rambling and maybe just typing this out will make me feel better, but is there anyone out there in my situation? How are you coping?  Thanks, 

Please, please, please do not berate yourself for being sad or depressed following this traumatic diagnosis, operation, etc.  I am a mental health professional and this is a totally normal and appropriate reaction to what you have been through.  Consider talking to a person who can hear your fears, anger or whatever you might be feeling and not having a personal stake in it (someone objective who you don't have to worry about).  If you're open to it, ask your docs to prescribe you an antidepressant.  It will not make you dependent or euphoric, it will just help you cope.  I have been a caregiver to loved ones battling cancer more times than I want to remember and I know this illness is as emotionally debilitating as it is physically debilitating.  I urge all on this board to recognize and accept this as it is part of the battle and to care for yourselves in any way you can.

Peace and prayers be with you.

Hi

Dad had a distal (removal of the tail of the pancreas and spleen) in nov 06 and has stage iv pancreatic cancer.

It took him a good 3-4 months to recover most of his energy (chemo leaves him tired now) and his taste buds were all over the place. He loved toast and bread prior to his op, but after he said it was like eating cardboard. What we advised Dad was, eat whatever you fancy, if its not nice leave it and try something else. He now eats a lot of things he ate prior to his op but some foods still remain a problem.

We also put some origional flavoured complan powder (we are from the uk, but complan is nutritional supplement) into his soups and home made rice puddings, and this extra intake of calories seemed to boost his energy as well.

Dont be too hard on yourseft over your emotions, you have been through a lot and your body needs time to heal.

Take care

Sue

I agree with what everyone is telling you.  I am a survivor, op on 12-06.  I am still having trouble eating. But I was told to eat a no fiber diet.  I drink protein shakes and eat I consider bad foods.  Like, ice cream.  anyway, I was depressed before the surgery and took an antidepressant and after the surgery I thought I was fine.  After a bit I also got emotional.  I started taking my antidepressants again and it helps.  Also, talking with people helps.  In the first time in 7 months I feel relieved because my second round of testing showed no cancer.  Good luck and know its ok to feel sad.  We've been threw more than we know. 

Dawnella

Hi, Hang in there.  I am a LONG term survivor...17 years now!  The surgery did not take my entire pancreas..a lot but not all. I still have stomach issues and cannot eat normal meals.  I have to snack several times per day.  I get reflux but take Pepsid AC for it and it works fine. I cannot eat much greasy foods and cannot eat a lot at all.  I remember that I would start to cry at the drop of a hat.  A bird could fly by and that would be enough to make me emotional.  That is very normal for any major surgery and my Dr. told me it would happen.  We were out for Fathers day with my family and my son asked my brother " Hey, uncle,do you find that you eat less as you get older"  I joked that I did and they all said to remember why and that my stomach is a lot smaller now and for me to remember all that I went through.  The point is that it takes a long time to heal and there will be a lot of things you need to get used to.  I never was given digestive aids, maybe I should have been given them, don't know.  I wish you the best, just hang in there and let each new trial you go through make you stronger and be easier for you.  Larry

i had the wipple done 2/05 i still have to force myself to eat,but i take in as much calories as i can. i don't gain any wieght, but i'm not loosing any. i still feel weak. i have not killed the cancer. i still get cemo and i get sad sometimes but i have a f*** y** atitude towards this and i will not let it get me. you are in good shape if the doctors got it all. give yourself some time p.c.is a tuff customer it's going to take your body and mind a long time to get used to this and it's not easy good luck.

I started 24/7 chemo and radition in Jan.  It really had no affect on the tumor.  Someone suggested that we see a surgeon who specializes in Whipple's.  We saw him in March and had the surgery in April.

 I am slowly starting to get my appetite back.  I do cry for no reason at times.  I am on medication to help the depression and to help me sleep at night.  I just really want to get healed so I can learn to live my new life. 

 Jim

I am so glad to see the positive repsonses on this message board.  It gives me a renewed fight.  I have been fighting since I was diagonsoed in Jan and I am soooooo tired of fighting at times.  I can see that everyone has similar struggles and I don't feel like such an odd ball anymore.