after the Whipple

I was diagnosed with an ampullary tumor back in June, 2009, after having issues with jaundice and itching. I had a biliary stint placed and waited for for the pathology report that at first came back negative, but I had an EUS procedure done at Duke, and the second biopsy came back positive. I was scheduled for a Whipple procedure surgery at Duke with Dr. Brian Clary August 20, 2009. 

I am at home recuperating now, and I have to say that it has been the toughest thing that I have ever had to do. I am almost 42, and the mother of two small children, and wake up every day appreciating each hour that I am not in pain.

I love my life and I love my children, and I hope that I will beat this, and be able to watch my children grow up.

The hardest thing after the Whipple is that my body has had to learn how to digest, and now I do not eat the things that I used to eat.

I would like to hear from another person around my age that has been diagnosed with this ampulary carcinoma. I hear that it is a very rare cancer.

I have an appointment with an oncologist and radiation oncologist at Duke next week, and would like to know what to expect with chemo and radiation.

Thanks, Kat

 

Hi!  We have very similar stories, considering how rare and unique these cases can be.  I started itching like crazy the last week of July.  Within a week, it was obvious something was very wrong (dark urine, light stools, jaundice). I was diagnosed with obstructive jaundice, although it wasn't clear what was causing the blockage.  I had an ERCP on Aug.6, at which time a biopsy of the tissue blocking the duct was taken.  On Aug. 10, I was told it was ampullary cancer.  I met my surgeon, in whom I have come to have great trust and confidence in, the next day and on Aug. 20, I had a Whipple.  My pathology of the surrounding tissues and the 8 nodes that were removed all came back clear, with the exception of the 1 cm Stage II tumor that was causing the problem.  I am 54 - a bit older than you - but I can tell you, this has been a kick-my-butt surgery.  I have had 3 c-sec.,  a hysterectomy, carpal tunnel, shortened collar bone and a neuroma removed from my foot, but none of those hold a candle to the recovery from a Whipple.  And learning to eat again is a challenge.  For just a month post-op, I think I am doing very well and I keep trying to expand what I can eat all the time - just a little bit each time something is new.  I got a port catheter put in yesterday and will start chemo on Aug. 29.  I am also supposed to get some radiation 6 wks into the chemo, but for now, one step at a time.  So, know that you are not alone and I will do the same.  Onward and upward! ~Julie

I am 63 a bit older than you.  I had the Whipple Feb. 10, 2009.  I had a routine blood test for a check up and my liver enzymes were high.  My doctor sent me to a liver specialist, who sent me for a ERCP.  The tumor was found and the whipple was suggested.  I went out to MD Anderson Cancer Clinic in Houston, TX.  They gave me radiation and chemo in pill form (Xolda) for 5 and one half weeks.  I rested for 6 weeks came back and had the whipple. I was in the hospital 7 days. I am doing very well, still have trouble eating some foods but take an enzyme for digestion.  I went back to work at 8 weeks post surgery.  I have not had chemo or radiation after surgery.  This worried me, but the doctors assure me that I do not need it.  Just came back from a check up with a good report.  I have the check ups every 3 months at MD Anderson.  My next check up is Dec.  I have had a lot of prayer and thank Jesus for my healing. Has anyone else not had chemo and radiation after the whipple?  I have lost over 50 pounds and am a little anemic, but am told not to worry, that everything looks good. jm

Not sure if my case is the same as any of you folks, except for a couple things.  I had my whipple on January 30 2002 and my cancer was in the bile duct.  I had all sort of tests, had a stint installed, which gave me some help with the itching.  Surgery lasted 10 hours and I spent four days in ICU and then two weeks in the surgery ward.  Beffore I was diagnosed I was trying to lose some weight and when I went to my regular doctor to show him how good I was doing on weight loss he saw things not involved with the diet.  A few questions and as soon as he found out about the itching he said I had to get some tests made immediately.I had lost too much weight too fast. 

I was 71 when I had the surgery and am 79 now; seven and half years later.  I'm doing great and have gained back some of the weight lost when I was sick and my diet is almost normal.  I eat almost everything, moderation is my only guide. When I came home from the hospital I weighed 125 pounds, a long way from the 190 I weighed when I first started on the diet.  I now weigh about 150 with that being very consistant.

I did not have to have chemo or radiation as there was no sign of cancer out side of the Bile duct.  I have a completely new body now and don't think I will ever have a weight problem again.  It took a long time to get used to the changes but now I even like the changes.  I had oncology appointments for five years and now I only see my GP doctor once a year.  I live alone and am doing great.  I have had a conversation with a lady just a little younger than  me who is a 12 year survivor so it can be done.  I tell everyone that my surviving came directly from a positive attitude and following my doctor's orders.

 One last thing is I am a 100% disabled vet (service conected) and I had COPD before the surgery.  My surgery was done at the Loma Linda CA Veterans hospital and I could not have had better care. There is a light at the end of the tunnel so take each day one at a time and be positive.  You can do it. . .

Chris

 

On 9/24/2009 nonniegirl wrote:

I am 63 a bit older than you.  I had the Whipple Feb. 10, 2009.  I had a routine blood test for a check up and my liver enzymes were high.  My doctor sent me to a liver specialist, who sent me for a ERCP.  The tumor was found and the whipple was suggested.  I went out to MD Anderson Cancer Clinic in Houston, TX.  They gave me radiation and chemo in pill form (Xolda) for 5 and one half weeks.  I rested for 6 weeks came back and had the whipple. I was in the hospital 7 days. I am doing very well, still have trouble eating some foods but take an enzyme for digestion.  I went back to work at 8 weeks post surgery.  I have not had chemo or radiation after surgery.  This worried me, but the doctors assure me that I do not need it.  Just came back from a check up with a good report.  I have the check ups every 3 months at MD Anderson.  My next check up is Dec.  I have had a lot of prayer and thank Jesus for my healing. Has anyone else not had chemo and radiation after the whipple?  I have lost over 50 pounds and am a little anemic, but am told not to worry, that everything looks good. jm

I had a Whipple in February 1998 for adenocarcinoma in the papilla of Vater (bile duct). No pre- or post-operative radio or chemotherapy. I was told firmly by my surgeon that they wouldn't work. Diagnosis after jaundice/bilirubin circulating in my blood,by ultrasound followed by a stent and biopsy. I was 62 at the time (now rising 74). Eating was difficult for a time partly caused by alkaline gastritis I was told. Except for regular, painful bile refluxes/ bronchoaspiration, although I had a bile diversion op 3 months after the Whipple, I lead a normal life and can eat absolutely anything in moderation (even medium-hot curries). I can tolerate small amounts of alcohol occasionally. I also have high liver enzymes. The bile refluxes only diminished recently after stopping Prednisone I was taking for polymyalgia rheumatica. I am now on Pantoprazol and Plasil to ease digestion. I think it is a question of the cancer stage when the diagnosis/operation takes place and whether it has already spread to lymph nodes. Mine hadn't. Now I have just been diagnosed with thyroid cancer and will be operated in 10 days' time. I think there is no relationship (11-year gap). I am optimistic and have an excellent oncologist surgeon. I enjoyed reading your account. I'll now be switching to the thyroid cancer section!

Annettejb

 

I am so sorry to hear of your diagnosis -- it is a rare cancer and very scary, I just lost my mother, but not without a fight.  We had the BEST doctor, Dr. Lenz, from USC... did 6 different lines of chemo and radioactive implants, none of which took, but my mother's cancer was very advanced when they found it.

 Tips to make life easier: physical therapy -- get a prescription, might be government paid; healthy gut - if you are experiencing lots of diarrhea, take pancreatic enzymes (expensive, but worth it, called Creon), take 1 billion (that's right, billion, not million) probiotics/day -- it will help with digestion, healthy gut, etc.  Stay healthy and fat -- treatments cause weight loss and you will lose motivation to eat because the side effects of eating aren't fun... ultimately, my mother passed due to malnutrition, not tumor burden.

 If you ever have any questions, feel free to contact me, I want to stay very involved in this cause, and I know a lot of info because my mother was a guinea pig for almost 2 years...

Good luck, stay strong, healthy attitude is everything -- my mother was not an optimist, and I believe it would have made a huge difference.