I have been getting several questions about the Whipple Procedure. I am starting this blog, on the Whipple Procedure, and would like to hear from anyone who has had a Whipple Procedure and what their experience was in the recovery process from the Whipple Procedure.
Soon I will be posting some information re: the Whipple Procedure, what to expect, what to eat, and any other information that we feel will contribute to this blog. Most of the time a Whipple Procedure is done to help people survive Pancreatic Cancer. On this blog we will certainly encourage people who have Pancreatic Cancer to blog on their experience having the Whipple Procedure.
I, myself had the Whipple Procdure done at Mayo Clinic in July, 2006, so I know how hard it is to recover from this surgery. It still affects me every day, but I do have a very many good days.
Linda Hageman, RN
I have two very large diverticuli in my small intestines very near the pancreatic and bile ducts. Surgery may be required. If they cannot remove them without damaging the ducts a Whipple procedure of some degree will be necessary.What are the chances of diabetes and what other concerns should I have?
I had my Whipple on Jan 11,2010 at Allegheny General Hospital in Pittsburgh Pa. I my Whipple for a GIST tumor on my duodenum. I was in ICU for a few days, I was up and moving to a chair in the IC. I Did have spasms the day after but after that it was an uphill battle with bumps in the road. My surgery was 8 1/2 hours and in my option I had one of the Best Surgeons around. When I woke I have 4 tube in my stomach 2 drain tubes a J and a G tube, I did not have an NG tube. After a few day on the floor the Drain tubes came out and before I left the hospital on Day 12 my staples came out and I was eating by mouth (soft diet) and walking all over the floor. But I will warn you at first just a few steps or a walk down the hall seems like miles. Once home, I was required just to rest and being it was winter time that was pretty easy to do. I do have to say I have a wonderful wife who is a surgical Nurse who took great care of me and knew what and how much I could eat. After a month or so the Dr. took the G and J tubes out and I was on my way. Now it is Mid May and I am pretty much back to doing what I did before the surgery I am a few (35lbs) lighter but I am working out coaching my Kids baseball teams, working my fulltime job and my part time job and eating almost anything I want in moderation. However, per my Dr’s orders I still cannot have steak, roast and carbonated beverages but that will probably change when I see him in a few weeks.
Like I said before and was mentioned above, you will have good days and bad days and then the bad day get few and far between. I know before my surgery I read stuff on the internet about the Whipple procedure and it scared the heck out of me but I am here to let you know that there is hope and thru the Grace of God it will all work out. God Bless and hope this helps.
Karen,
I did not see your post until mine was posted. The Rule of thumb my Dr told me (I had 1/3 of my pancres removed) that if you did not have it before the surgery the chances are you will not develope it after the surgery.
Hope that helps. Stay Positive
I am so glad to see activity here on the Whipple Procedure. I am Linda Hageman, RN and I had a Thompson Procedure 2007(which is like having a partial Whipple Procedure) and at that time 1/2 of my pancreas was removed. I lost some weight and started an exercise program and was able to come off Metformin. As I have a rare endocrine disorder my physicians at Mayo Clinic were doing endoscopy ultrasounds every 6 mos.to look at my pancreas and as I have Multiple Endocrine Neoplasia (MEN)and my father had died of pancreatic cancer they were very vigilant and proactive about my health care. I owe my life to Mayo Clinic and the physicians there. Two years after the endoscopic ultrasound Dr. David Farley came into the exam room room with a very heavy heart and he informed that within 6 mos. I had developed 9 tumors in the remaining portion of the pancreas and needed the Whipple Procedure to take out my existing pancreas (you can watch an interview Dr. David Farley and I did to contribute to Hageman Foundation and to use as a teaching tool for medical personel)www.multipleendocrineneoplasia.org. Being a nurse I read as much as I could about the Whipple Procedure and found the technical stuff was just that I could not find very much information that said anything positive about having the Whipple procedure.
Recovering from the Whipple Procedure is like doing a triathlon. You have to stay focused and accept that indeed you are now dealing with a different body.Take it one day at a time. You will have a long recovery but as hard as when you have surgery get out of bed that night or the next day. I will be posting more as we go from here so keep in touch. Linda Hageman, RN
My sister Rosemary(age 46) had the Whipple done in December 2009 at Rhode Island Hospital and she died 8 days after surgery from cold septic shock due to an abcyss in her abdomen from pancreatic juice. No one researched this surgery morethan her. She did not have pancreatic cancer(post-surgery biopsy showed this), but was an unusual case with a benign growth on her pancreas, which was discovered in her 20’s after an ulcer surgery but never touched. The oncologists told her it would probably become cancerous if it wasn’t already, and she agreed to have the surgery because she was experiencing periodic digestion discomfort due to the inflammed growth pressing on her bile duct. She did everything right after the 10 hour surgery and was up and walking around on the third day post-op. Sepsis which they never even CAT scanned her abdomen for until 4 hours before she coded, was never looked for. Even then they said they would have the VIR team come in in the morning to extract the abcyss. She never made it. 40% of all people in ICU units devlop infection, but she died. She left a husband of only five years, and the loss of her has broken all our hearts. Get many opinions and go to the best, if she had I know I would still have her!!!
Colleen,
I am very sorry to hear of your loss, I know it had to be hard to have your sister go through the surgery and then to lose her forever. I culdn’t imagen. My thoughts and prayes go out to you and your family.
Dear Colleen,
No words can express the sorrow I feel for your loss. But believe me, when I say, I will carry your blog, about your sister, with me near my heart. Because this is the very reason I have started this nonprofit to help people have an outlet for their grief and to be able to get the newest, latest, factual medical information on the Whipple Procedure available to anyone who needs this information to make an informed healthcare decision. Even after doing all the homework and making a decision, that everyone believes is the best decision for themselves, the Whipple Procedure still remains one of the most involved and longest surgical procedures that a person can survive. There are several things that can and do sometimes go wrong. May peace be with you and if I can do anything to help you and your family through this grief process please do not hesitate to contact me. In time you may want to honor her through her story of life and I would be more than happy to help you with this and perhaps set it up as a memoriam dedicated to her. In time not right now. Linda Hageman, RN
Hi Guys,
I am going on my second year post whipple. I had my surgery for malignant insulinoma with mets to both my duodenum and Lymph nodes in January 08 at the University of Iowa. i completely agree with the statements above. make sure you do your homework and go to someone who does a high number of whipples a year. I was lucky enough that my Endo up here in alaska knows Dr. Odorisio and while i was there visiting with him, he hookded me up with Dr. Howe, the endocrine surgeon at U of I. i had to travel, but it was well worth it. I was in the hospital for 7 days and flew home on the 9th…..lets just say that that was the LONGEST flight of my life….no fun!
The recovery was long, and to some extent, i dont belive i will ever fully recover back to my original self, but compared to some, i came out of it very well..
The biggest issue for me after the surgery was fatigue and of course, stomach(ish) pain and digestion issues. i had what i hear described as Whipple pain, which was this drop to your knees breathtaking pain that felt like someone was ripping my insides out. it seems it may be from adhesions. it doesnt happen much any more, and if it does, its not as intense. I have not yet become diabetic but i am getting close. my Hypoglycemic episodes are much fewer than before, though they have me on Sandostatin LAR for the residual disease, which has greatly helped.
I have had to modify my diet. i dont tolerate red meat or fats much and i take Pancreatic Enzymes which help tremendously. also, i cant eat as much at one time, and i have noticed that my circulation isnt as good. (my feet and hands are always cold!) Other than that, i still get fatigued a little easier but my weight stabalized (i did lose 45 lbs in three months time though) and i can do pretty much what i want, when i want.
The surgery was brutal, but a neccesary evil in my case. in some MEN1′ers i know that it can be debated when to, and if to operate, but there was really no option for me, at least in my case.
Take care, thanks for sharing!
Steve Taylor
Karen,
I did not see your post until mine was posted. The Rule of thumb my Dr told me (I had 1/3 of my pancres removed) that if you did not have it before the surgery the chances are you will not develope it after the surgery.
Hope that helps. Stay Positive
Anthony,
my husband was just diagnosed with pancreatic cancer and will be getting the whipple at Alleghany,.Who was your Doctor. Having a hard time trying to choose.
Dee
I had the whipple surgery in April. I think I recovered rather quickly however I am having a time getting my bowels regular., The creon gives me diarrea and the Welchol tries to slow it down to little avail.
Need to have suggestions.
Dee
My Doctor was Dr. Kenneth Williams. In my option he is the best. there asre others in his practoice that are prety good too. The care I received after the surgery on the 6th floor was second to none, tey treated me like family. Please let me know who you choose.
Anthony
Dee,
Sorry I didn’t get back to you sooner I did not get an E-Mail letting me know there was something on here for me unless it went to my spam. Please feel free to E-Mail me directly ant_041@yahoo.com. Shoot i saw my Doctor in June too I could have said something. I really feel bad for not responding sooner. Please contact me and let me know.
Rose,
I had my Whipple in Jan and the only med I am on is my Chemo, (Gleevec) protonix and my iron pill. I wish I could help with your meds.
I had the whipple surgery 7 weeks ago bile duct tumor. It was removed. they are taking blood work every 2 months to make sure I am cancer free. Needed no treatments it was very early detection.The question I have for anyone that will answer is what am I supppose to be able to do by now. I have driven a couple of times. I go walking. I still have stinging and pulling sometimes.. am I suppose to do this yet or more or less
I have a large adenoma 4 1/2cm in the apullary region of the duodenum. It was found more or less by accident I have no signs or symptoms of any kind passing my recent physical with flying colors.
The adenoma is not cancerous but most likely will become so.
It appears it is too large to remove endoscopically and I will have to have a Whipple procedure. I really don’t understand why they cannot open up the duodenum and remove the adenoma.
My Doc says it is too large to just keep an eye on it though it doesn’t have to be removed immediately like October or November.
I would love some help with this dilemma. How do I find the best Doctors / check on their credentials?
I live in Arizona Christine
Helen,
It sounds like you are on the right path. alwasy thank God they found it early and you did not need anything else. I am on Gleevec with is a chemo pill. 6 weeks after my Whipple I had dental surgery to remove some teeth so I could start my Gleevec (chemo) I was driving at 6 weeks only thing was when I had my surgery they over streached some tendons in my arm which cause RSD, in other words my pointer,middle and thumb on my left hard were not working like they should and my wife would not let me drive althought, I am a better driver one handed than most with 2 hands, nonetheless it came back and I am fine. To answer your question sounds like you are on the right path and keep up the good work. Share with others that hear some many horrior stories about ths surgery that it is not all that bad considering the alternative.
Anthony
Christine,
I too passed my physical with flying colors, I also passed a stress test. I was sweating a lot for no reason and everyone thought it was my heart (due to family history of heart problems) so when I passed that they blamed it on me for being 30 or so lbs. overweight, smoking a few cigarettes a day and being sort of out of shape. Nonetheless in mid November I thought I was having gallbladder symptoms and with my wife being a nurse she thought I was too. They were classic symptoms. When I went in they found the gallbladder to be fine but wanted to do some more test instead of sending me home with pain meds. That is when they found the 6cm GIST tumor on my duodenum. A surgeon my wife works with scoped me and found that to be true and noted that if it was down a few CM’s then it would be a quick removal of the tumor and I would be out of there, but with the rare location and even more rare that it showed up in someone my age that I would need a Whipple. He referred me to a Doctor in Pittsburgh PA (since they were a small community hospital and didn’t see many of theses surgeries) and I had it done a few weeks later. The one piece of advice I would give you is do your research on the Doctor. Make sure he/she is upfront with you and has done this surgery many times before, make sure the hospital knows how to treat someone like you that is having this surgery, after care is important too. The surgeon I was referred to did these surgeries several time before and to my knowledge has done these several times after me. He was right on cue with everything before and after the surgery and to put the cherry on to he had the best bedside manners of any Doctor I have ever met. The hospital I stayed in treated me like family and knew how to treat me because they seen theses surgery many time before. Best of luck to you and keep us posted and feel free to contact me with any questions.
Anthony
My husband is going in for Whipple surgery on 8/9/2010. They have not found any cancer but his pancreas has atrophied and his bile and pancreatic ducts were inflamed. He became jaundiced and went in to have an endoscopy to put in some stents. This took care of the jaundice. We do not yet know if he has cancer but we are confident that he will get through this with God’s help. He will have his surgery at the Cleveland Clinic with Dr. Walsh and Dr. Chalikonda. We have every confidence in them as they do several a week. He will have his done robotically. Has anyone else had experience with these doctors?
Christine,
I have not heard of these Doctors nor have I heard of it done robotocally, as long as your husband has faith and trust in these Doctors then that is a plus. However with God help everything and anything is possible. My prayers are with you all and hope it turn out for the best and there is no cancer. Please keep us posted and again if you need anything please let me know.
Anthony
HI Anthony
Thank you for your support. I am hoping to hear from someone regarding the robotic surgery. It is supposed to keep the recovery to a shorter time period and is obviously less invasive. I would love to hear from someone out there.
I hope you are doing well Anthony!!!
God bless you.
Hi I’m lacey I am 32 years old and had the whipple done 6 weeks ago.
I had islet cell tumor on the head of my pancreas.I went in cause gallbladder was hurting and they found my tumor that way,I do believe GOd was sending me pain in gallbladder cause there was something bigger we needed to look at.Because my dr said people don’t usually find the tumors until they are so big that they can’t get them out.
I had my surgery done at Bpatist by Dr.Philip Ley,he is awesome,what I understand he did his studying and worked some at MD Anderson in Texas.I stayed in the hospital 14 days,I can say that the surgery is a huge ordeal,you will deal with nausea a bunch.pain wise after I came home wasn’t too bad,had some pain meds I might would take here and there.I think I have done well recovering,but the second day I was home I started having bad bad bad weak spells to wear I was drawing up,I was dehydrated and potassium got too low,so I had home health come do ivs for couple days,the doctor told me my hardest problem would be staying hydrated,so try to drink even though you feel like yr going to puke it up,take a nausea pill every 4-6 hours if that what it takes to keep fluids in you. Another hard part was getting my bowels to start working again, but I got some stool softners and the yoggurt that helps regulate you,so I have seen some changes now,also buy some strong gas pills I keep (Phazyme)in my purse as when you get the gas pain in your chest you feel like your having a heart attack,so I take one after each meal,I have got to slack off on them the longer time goes by. A big don’t do is greasy foods,as you will puke it up.I’ve been trying to do things as I did before,have been cleaning a lot and some yard work,but my mother which is a nurse practioner is telling me I shouldn’t,that I could tear something loose.standing for long periods have been rough,but r getting little better.I still have some pain in my side comes and goes.
I’m very blessed to be here,I thank God everyday.I have 2 small children and so thankful to be here with them.so the surgery is well worth what all you have to go through.I know I am rambling on,just wanted to share,been trying to find out what we can do to stay cancer free and ran across this site,so if anyone has anything they are doing different to help please share.
Lacey,
Wow you are younger than me which means you will pull trough fine. At 6 week I had dental surgery to remove 7 teeth before I started my Gleveec (Chemo). That is why my doctor told me and I stress to everyone I talk to is one important thing to remember. Everyone is different and everyone’s body reacts different. I am eating whatever I want, the only thing at seem to bother me a little is sauce but that has eased up. grease bothers my wife more than it bothers me due to her having gallbladder out a few years back. I am also doing more now than I ever did. I just got done with my Kids baseball season I am doing yard work like crazy, My wife and I recently bought a house so we are packing and moving stuff like crazy. Plus, I too have two little one that want to ride bikes, wrestle and do all the fun stuff. Thing is I feel now I like so more because I am the right weight and I am more fit from working out and stuff like that. I feel like I owe all this to my Doctor he knew a lot about this and was strict on my diet knew what to start out eating and drinking and what to work into. I just started back on carbonation a few weeks ago (approx. 5-6 months Post op)along with steak and roast beef. The one thing I would suggest for you is Ensure that seemed to help me. But now I am on no meds except for my Chemo pill and my prontnix. But with all you said the one thing that stands out is that you said God is good and you are here. Amen to that!! Cause that is the truth, mine was found my mistake also. He has a plan for all of us I honestly believe that. May God bless you more and I hope that you are feeling back to your normal self soon. Please feel free to contact me any time.
Anthony
Ant_041@yahoo.com
Hello Lacey and Anthony
Thank you so much — the both of you — for your support. You both know how much it is needed in these times. Thank GOD that both of you are doing so well. We realize it will be a bit of a long road — my husband is 62 years old — but we also know that anything is possible. I am trying to get more information on these doctors. Actually, one of the doctors came from the hospital in Pittsburg – the Cleveland Clinic recruited him — he and his partner do 100 or so a year of the regular whipple and 2/week of the robotics. So far the care has been good and the doctor has an EXCELLENT bed side manner. He was not impatient with us at all and answered all questions. We do realize that every person is different — as I have seen just reading some of these comments from various people at various ages and stages of their recovery. We are just SO thankful that they have come this far with pancreatic cancer. It really is God’s will and we have every faith in His will. God has a plan for everyone so we just have to believe that the plan they have for my husband is to stay longer on this earth — as he had with you Anthony as well as you Lacey.
Thank you both again — and we will keep you posted and please continue to write — it is very encouraging.
Hey Christine my thoughts and prayers are with all with you and your husband. I am sure everything will be fine just keep the faith. Believe me it is esier said than done but whatever you do don’t loose it and everything will be fine. Please keep u posted and my God be with you.
Anthony
HI Anthony — thank you — I will certainly keep you posted. This site has been very inspirational and we definitely have the faith!!!
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Hello all you fellow survivors!!
I have a question for you all. We have been reading a lot about vitamin supplements and holistic healing (either in addition to surgery/chemo/radiation or instead of) – we are going with the surgery and the chemo (if necessary) but wanted to know if any of you have been taking vitamin supplements that you feel have truly been helping you through your recoveries. I have some friends who utilize vitamin packets specifically formulated for their disease (sometimes 10-15 pills/day) but would like your opinions on this matter.
Looking forward to your responses and have a wonderful, fulfilling day!!
All, I too am discovering this site/blog late. I am 50 years old and after a year and a half of dealing with abdominal pain, I ws diagnosed with a neuroendocrine tumor of the pancreas. At first it was thought to be in obnly the head of the pancreas, but a final CT scan revealed growth into the entire body, veins and arteries supplying blood to the pancreas, spleen, liver and stomach. on June 8th, I had a Whipple done with a complete pancreotectomy, splenectomy, duodenectomy, and resections of blood vessels. My doctor was just outstanding, as this surgery lasted 11 1/2 hours!. His name is Roderich Schwarz and the surgery was done at UT Southwestern here in Dallas.
I spent 11 days in surgical ICU and another 6 days on a regular floor. As a result of the complete removal of my pancreas, I am now a type 1 diabetic. My major issues post operative, and continue to this day, although to a much less degree, were centered around getting my digestive processes restarted. Post surgery, I began eating mostly softer foods by the fifth day with little problem other than the expected loose stools. Once I moved to the regular floor, I experienced 3 straight days of uncontrollable diarrhea, which set back my recovery considerably. This was not determined to not be C-DIFF, but rather part of the digestive process restarting. After 17 days in the hospital I was released to go home and had a few days of dehydration. My wife, who is a paramedic, and the home nursing care got me hooked up to some IV’s and I was better in a couple of days. Today, I struggle mostly with managing blood sugars, identifying which foods and liquids cause gas, loose stools, and “dumping”. My strength and endurance are getting better, but not at the pace I desire. I lost 35 pounds, lots of muscle tone, but am enjoying the 32 inch flat waistline. I expect to return to work the first of September, almost 3 months post-op. I’m told neuroendocrine/isletcell cancer is rare, and unlike other carcinomas, can be curative. For that I am blessed.
Hi Bill,
Welcome to The Hageman Foundation for the Whipple Procedure site. You truly are not too late to be blogging on this site. It is very important for all of us with Pancreotogenic Diabetes (diabetes resulting from pancreas removal) to share our information. Recently physicians have started to recognize that without a pancreas, we are not Type 1 diabetics because we digest food at different rates. Your blogging regarding your recovery will help others in their recovery process. I too had a total Whipple Procedure done 4 yrs ago and I daily struggle with the digestion issues and the diabetes. A few hints that have helped me is within 8 weeks of having Pancreotogenic Diabetes I started on an insulin pump. I have a Medtronic insulin pump with the glucose sensor go to http://www.minimed.com for more information.
This system has truly allowed me to have a pretty normal life. Training on the pump needs to be done at an Endocrinologist Office with a Diabetes Nurse Educator.
It does take time to adjust the pump you just have to be patient. Nutrition is also a great factor with the pump Carbs are counted every time you eat and you will have to know how many carbs are in the food you are eating. After some time you will begin to just know how many carbs are in the food you are in taking. There are now apps on some of the phones that will help you especially when eating at a restaurant. The insulin pump will automatically give you a small or Basal rate of insulin all the time which is why they call some of these devices artificial pancreases.
As far as what to eat first and foremost I hope that you are on pancreatic enzymes that you take with each meal, in fact you need to take pancreatic enzymes every time you eat any food. I was never a meat eater so I cannot advise you on that, but Chicken, Fish, Bread, cereal, oatmeal, Cream of Wheat are some of the things I lived on, after the Whipple. I cannot eat most dairy but cheese and yogurt are OK for me. Veggies have to be cooked well, but later you may be able to tolerate salads etc.
I hope this helps you and if you would like to e-mail me directly linda@hagemanfoundation.org I will be happy to answer any other concerns you have.
Linda Hageman, RN
Hello Bill
After 9.5 hours of robotic surgery (whipple procedure) at the Cleveland Clinic, they did find a very small mass at the point where the pancreas meets the pancreatic bile duct. During the procedure, they removed this part of the pancreas and pancreatic duct as well as the common bile duct and gall bladder. They only needed to remove a very small part of the stomach and duodenum where the stomach and duodenum connect. This is very good news as we were not sure what to expect. The doctors performed frozen biopsies of all surrounding organs and the glands as well and the results came back negative for cancer. With this information, they feel confident that if the tumor in the pancreas is malignant that it has not spread, or metastasized. We still do not have the final pathology report back but have faith in a positive prognosis.
He is making great progress. His surgery was on Monday and as of Thursday) he had walked the halls of the 9th floor of the clinic at least 5 or 6 times. His doctors think he looks great and is way above the curve in his healing process. He was still not eating or drinking (not allowed) but had an occasional ice chip to help quench his need for something liquid. Once his organs begin to work, they will put him on a liquid diet. All his vitals are right where they are supposed to be and he hits the spirometer (breathing mechanism to measure his lung capacity) every hour on the hour. We have faith and a positive outlook – so we are taking one day at a time. With each new hurdle, we will approach it with strength and positive attitude. He is approaching each healing level, as I mentioned, ahead of the curve – so we are very happy with the progress.
He still has some pain but nothing he can’t handle. The most annoyance he is going through right now are his hiccups, which we have been told are normal for the type of procedure he endured. He had some minor heartburn but they are treating him for this as well.
I think he is hallucinating (not really — he just has a great sense of humor and outlook) – his pain medication container is a very bright green – he thinks it is a green life saver. He is threatening to break into the freezer in the hall way to steel some ice cream – so, as you can tell – he has a great sense of humor—which is a huge asset for a person going through a major operation. We thank God every day for his sense of humor.
As of today, Friday the 13th, he has made even more progress. They gave him tea, apple juice, lemon ice and grape juice – although he had only a little, this did cause a little concern because it was starting to show an ileus (his stomach became hard and was holding too much liquid). With this concern, they told him to stay off the liquids completely. They took an X-ray (which we have not yet rec’d a report on) to determine if the distention of his belly was due to his colon or his stomach. If it was due to his stomach, they would need to put his stomach tube back in (which they took out on Thursday). Well — as of about 7 pm Friday night, he had a bowel movement (hip hip hooray), which is a very good sign. The stomach softened a bit and he felt better. Doctor Chilakonda informed us that this is all a part of the healing process. The other good thing that happened today is he got one of his drains taken out. The other one is still in but the liquid looks good and will probably come out Saturday or at the latest, Monday. He is progressing well. We have no idea what to expect when he comes home, but we are taking one step at a time. Right now, my husband is not hungry — only thirsty. So he gets VERY excited when they tell him he can have something to drink soon.
We don’t see him coming home until at least Monday of next week – but it could be later. He is in God’s hands and he is doing very well.
I will keep you posted. But thank you again for your prayers and support – they have agreeably helped !!! I will continue to write as we go through our journey together. It has been a scary journey but also an eye opening journey. It has made us closer and is also a definite stepping stone for us. A challenge that we believe we will meet head on and with continued faith, will take each step as it comes before us.
Christine,
I am so happy that everything is going so well with the care and recovery. Keep walking, and ask the docs if they will write an order for you to take him in a wheelchair outside to get some fresh air. Walking will help the digestive system to return back to normal. I cannot tell you what you keeping in close contact to Hageman Foundation is meaning for me. This is exactly why I started this non profit. Linda H
Was very comforting to have found this blog, it helps a lot to read about other experiences. My father had the whipple procedure nearly a month ago. The recovery has been very slow, he has lost some weight and feels very tired all day long. The results of pathology show some lymph nodes positive for cancer, so in two weeks he will be starting his chemotheraphy (gemcitabine) and radiotherapy, but i am really worried that because of the weak he is, he won’t tolerate the treatment, also and is my biggest doubt at the moment is that he has jaundice,with 2.68mg/dl of total bilirubin. did somebody of you got jaundice after the surgery too? and how long did it last? I’ll appreciate if someone can help me with my doubts. God bless you all.
Hi Marianne
First of all let me tell that you our prayers are with you and your father. WE KNOW THIS is going to be a very trying time for your family. I can’t say that we have had to deal with jaundice after the surgery. In fact, my husband had the jaundics before the surgery — which was just one more symptom that led us finally to the whipple procedure. Have you taken your dad back to the hospital to determine the cause for the jaundice. There could be any number of reasons for the jaundice but I would certainly get the expertise from your doctor. Please keep us posted.
My husband had a bit of a set back today. They gave him food (fried chicken – which I think is strange) He took the skin off the chicken and had only a few bits of the chicken. He had orange juice too. Both of these did not agree with him at all. He eventually vomited but was very concerned because he was afraid the vomiting would be very painful. It was not — thank God. This will be a trial and error process over the next few months. For now — he is going to stick with jellos, broths, pudding, tea, coffee, and lemon or lime ice. We hope to get a specific diet to follow from his doctor when we meet with him this Friday. He feels much better now.
We will definitely keep you posted and please know that positive attitude and prayers certainly help!!
Hello Christine!
Thank you so much for answer me, you have no idea how much helps me share what we are dealing with my dad (who is 65 years old by the way) and to know about your husband.
As you said is really strange the fried chicken at this point of the recovery of your husband, but thanks God the vomiting wasn’t that bad. The doctor will certainly give an specific diet, for now my dad can’t eat anything fried, too much fiber, and sugar (we are using artificial sweetner)… he leave the hospital on july 25th…we are taking good care of his diet. The problem with my dad is that he doesn’t feel hungry, he has lost around 20 pounds so he is really slim now. About the jaundice, the doctors told me it should disappear, but it wouldn’t be strange that the jaundice last for at least 3 months. They say you can expect jaundice after such a big surgery…. I know I have to calm down myself and keep a positive mind, but I can’t stop worrying about everything. I see my dad more yellow everyday. I will take your advice and take my dad back to the hospital just to be sure his bilirrubin level has not risen and everything is under control.
I will have your husband in my prayers at every moment, you’ll see everything is gonna be ok. God is with us.
(I apologize if my english is not so good, I believe I don’t use the correct redaction, but I am trying my best to make me understand =D)
Christine, How long ago did you husband had surgery again? and was given Fried Chicken?. Always say, I credit my Doctor for my recovery, he knew exactly what I should eat and started me out slow with very small portions on a soft diet, then started me on solids foods not chicken (to stingy he said) then I worked me was up to that once he felt my stomach was working properly. I did not have carbonation, roast beef, roast, steak until 5 months post op. even now 6+ most since my whipple I eat almost everything I ate before my surgery the only thing I noticed so far that bothered me was prime rib.
Linda et al,
You are correct about the enzymes I take (CREON) each time I eat, other than fluids. My endocrinologist and I are having some difficulty identifying which foods absorb at what rates, and how they affect my blood sugars. He has suggested I where a glucose monitor 24/day for several months along with maintaining a food journal. I’m not so sure I want to do that as I am starting to figure out from my own journal how different foods are being digested, as well as how exercise/exersion are affecting bgl’s, and modifying my insuline dosing myself. I’m not sure this is the best idea, but have not “crashed” yet.
I do plan on migrating to the insuline pump soon. I’m pretty good at measuring/counting carbs with everything I eat, and I did download a pretty good app (Go Meals) to my iPhone which lets me look at the nutritional value of most every common resturant out there.
On another food related issue, I have discovered by way of trial and error, and with some information from my GI doctor, that certain foods and liquids cause “dumping” (diarreha). One of these is orange juice. I’m told high sugar foods cause my digestive system to go into hyperdrive. As a result, I’ev discovered that reducing the amount of fuilds I drink during meals helps eliminate the “dumping” effect. It has also helped me stop taking a medication called octreotide/sandostatin which was admistered to slow down the digestive process, but cause extreme nausea for 30 minutes after injecting it.
Currently, I can eat almost anything I want (90 days post op). I especially like that I can eat Taco Bell again, although beef causes me a bit more digestive discomfort (gas) than does the chicken items.
I read someone was dealing with lack of strength and endurance, as I have and still struggle with. One thing I’ve noticed and experienced was this.
- In the hospital, I should have done more of the breathing treatments (spirometer). I was told they help prevent phnemonia, so I did just enough to keep that at bay. However, I still struggle with what I believe is a tightening of the diaphram muscle which has caused me to have a more shallow lung capacity. As a result, the lower lung capacity causes me to fatigue quicker. I am working on this by trying to stand and sit taller, swim in my pool, and do other abdominal and thorasic stretching.
That’s it for now. My prayers continue to go out to all.
Hello Marianne et al
We are finally home from the hospital. Yesterday was not a good day because they introduced the wrong foods for my husband’s diet, but today was much better. It will be trial and error. For now my husband will just stick with the soft foods such as soups, puddings, yogurt, smoothies, jello, etc. He will move on to meats when he feels he can handle it. We don’t want to take any more chances. We did get the final pathology report back and we are not pleased with it but know it is now in God’s hands. Although the pancreas was resectable and none of the surrounding organs have cancer, they did find cancer in 9 of the 20 lymph nodes taken. They also found a problem with the vein. We will meet with the surgeon again on Friday to discuss our options and to learn who my husband’s oncologist will be. Once we meet with the oncologist, we hope to start an aggressive treatment of chemotherapy (gemcitabine) and radiotherapy. We will also ask about some clinical trials, pancreatic cancer vaccines and alternative treatments. We are trying to take this all in right now – it is almost surreal – but we are just glad to be back home together – my husband will get the needed rest he did NOT get at the hospital (as you all know – the hospitals are great for medicating and monitoring – but sleeping is not on the top of their priority list for patients). We did have a good experience at the hospital and are confident that the doctors did all they could do to remove the cancer. Thank you all for your support and prayers and we will continue to keep you posted. Marianne, my husband is 62 years old – not much younger than your father. I will continue to pray for his peaceful treatment and successful recovery.
Hello Christine and everyone in the blog!
I completely understand you when you said all this is totally surreal… Im glad you’re now at home with your husband… he will sleep so much better now, I remember my dad complained a little bit about the sleep issue at the hospital.
Im pretty sure all the love you give to your husband will help him to recover faster and be ready to start his treatment.
Like the pathology results from your husband, my father’s also show none of the surrounding organs with cancer, but did find some lymph nodes positive. Today we met with another oncologist to have other opinion, but he told us basically the same, although he does mention 3 options for chemoradiotherapy, an aggressive cycle of chemo (gemcitabine) followed by radiotherapy, an aggressive chemo with radiotherapy at the same time, or a less aggressive dose of chemo with radiotherapy at the same time… he gave us these options because of the weak my father is at the moment. A full treatment wouldn’t be safe for my dad, so the third option is the most recommended for him. Although I don’t know when exactly my dad will start his treatment…
I was thinking today that a therapist could help my dad with his depression, which in addition to the weakness of the surgery itself has me very worried. There is a lot of things in my mind all the time, but I know that my dad is in God’s hands as we all are.
I wish you good luck on Friday with the doctors, may God enlighten them to give the best treatment for your husband.
My prayers will continue with all you, and once again Christine, thank you so much for keep writing, share our experiences is of big help.
God bless you all!
Christine, How long has it been since the surgery? I know for the first month or so I was on a soft diet. The doctors told me it would take some time for my stomach to start working proprtly again and I had age on my side being 37 at the time of my whipple. It does start, I can assure you that, thru the grace of God your husband will be able to eat normal again. I do quesion the Doctor for tring food like that so soon though.
I also have read a lot of negative things about whipples and the stuff that can go wrong and from experience it scare the hell out of people (including me before my whipple) I am hear to say that I am 6+ months out of my complete whipple and I feel great. I am eating almost the same as before my whipple (a little smaller portions not much smaller) I am active, I work 2 jobs and keep with with my 2 young kids (boys). I am however on Chemo (Gleevec) once a night for the next 5 or so months, Protonix once a night and I take an Iron pill durning the day, other than that I am on no other Meds and I feel awsome most of the time. Your husband and father will have there good days and bad days for the first 2 or 3 months then the good will start to out weight the bad. I do hope God belsses them and removes all the cancer from their bodies and gives them a quick and full recovery. May god Bless you ladies also as the caregivers. I know it was hard on my wife as well and she is an Surgical RN.
May God bless you all.
Anthony
Hello Marianne, Anthony and others,
Mariance, It sounds like your doctor is recommending the same therapy that my husband’s surgeon said he will probably undergo – the gemcitabine with radiotherapy. Since my husband had the whipple procedure robotically, the surgeon thought he might be able to start the therapy soon – but we won’t know for sure until after we have talked with the oncologist. Yes – a therapist might help with the depression – it is so difficult to take all of this in – my husband goes up and down, but he snaps out of it pretty quickly. We just got the news yesterday – and although we knew there might be a chance – we were trying to stay positive – so it still came at a bit of a shock.
Anthony – My husband just had his surgery last Monday the 9th. We were both very surprised they had chicken on the menu. Perhaps they put it there just to see what some people can endure while under the care of the hospital. We do know now that my husband needs to stay away from solids such as chicken – at least for another few weeks. You mention that you are on chemo every night – Gleevac – what is this? Our doctor said the gemcitabine is the chemo of choice for pancreatic cancer. Do you have a different type of cancer? We asked if my husband might be able to take a pill form of chemo – our surgeon said he did not think so – but again we will wait to hear from the oncologist. I am so happy to hear that you are doing so well – stories such as yours help those of us who are just beginning our journey have faith in what the future holds. God is our anchor but the people who have been through the whipple and cancer and are surviving are what helps us strengthen our faith.
I can’t thank you all enough for sharing your experiences – it really helps to see what others are enduring and the courses of treatment. God bless you all! And, thank you for your kinds words to the caregivers – this has completely changed our lives but we are growing much closer than we could have imagined, so there is a positive to every situation.
Hello everyone
For those of you who have been through chemotherapy and radiation, could you fill me in on what we can expect? My husband will not be using the pill form but will be intravenous. Just trying to get an idea of what we can expect: hours/day, days/week, weeks/month, etc. Anything you can offer would be greatly appreciated. Again — baby steps….. thank you so much and God bless you all for your continued support.
Hello Christine and everyone!
How is your husband Christine? I hope he is getting better everyday and that you are okay too. It is good news that your husband will start his treatment soon. About your last post, I have the same questions about what to expect with the treatment, its always better to know of others own experiences.
Let me tell you that days ago when I asked here in the blog about the jaundice of my father, yesterday the doctor told us he has what is called obstructive jaundice caused by an inflammation due to the surgery. Yesterday we were really worried about the procedure the doctors do to him, but it turned out good, the obstruction was relieved by some kind of tube they put in the bile duct (roux Y). So by now we are happy with that, except that the result for the tumoral marker Ca 19-9 was 687 before the surgery and now is of 3842. I asked the doctor and he told me that I shouldn’t worry too much and wait for another test in two weeks. I have done some research in the web and I found that the levels of this marker can be highly increased by obstructive jaundice and other benign conditions. I quote:
“CA 19-9 is produced in normal human pancreatic and
biliary ductal cells. Since the exact pathway between tissue
and blood is still not well known, the real mechanism of the
elevated serum CA 19-9 remains unsettled [4].
Surprisingly, extremely elevated serum CA 19-9 in patients
with acute cholangitis like the reported case may occur.
Murohisa et al [8] presented a case of bile duct stone with
cholangitis and high serum CA 19-9 level (60.000 U/ml),
which returned to the normal 6 weeks later. In our
reported case, the serum CA 19-9 value returned to the
normal two months later.
Though the presence of a gastrointestinal cancer may
enhance the production of CA 19-9, extreme elevation of
CA 19-9 could occur in benign biliary obstruction and
inflammation as in our reported case. The precise
mechanism for this abnormal high levels remains to be
clarified.”
For those who are interested in the article, this is the link, http://www.casesjournal.com/content/pdf/1757-1626-0002-0000006662.pdf
So I am holding that this is the cause, and I have faith that this high levels will go down in the next days, as well and the bilirrubin levels.
I still have no idea when my dad will be in “shape” to start his chemoradiotherapy and that still worries me a lot.
Thanks for all the valuable information in this blog, thanks for the advices, experiences and support I have found in your posts.
I have you all in my prayers. God bless you all.
Christine,
I’m an otherwise healthy, active 42 yo woman who was diagnosed with pancreatic adenocarcinoma in February. Based on the recommendations of my doctors at MD Anderson, I had preoperative Gemzar (4 infusions) and 28 radiation sessions. I felt fine after the Gemzar. No nausea, no vomiting. No hair loss, either. A few weeks into radiation I did start to get some fatigue and even some nausea, which I’d get about an hour before it was time to head to MDA for my treatment, so I suspect it was somewhat psychosomatic. My fatigue kinda plateaued and never got real bad. I would take a nap in the afternoon but try and get in a 2-3 mile walk in the evening. Except for the weird nausea before my radiation treatments, my appetite stayed good.
In May I was re-checked and my tumor looked like it had shrunk. I had a whipple in mid-May. I read a lot about how important walking was, so I got out of my bed and walked a bit the day after my surgery. I had a pylorus-preseving whipple and had some trouble with delayed gastric emptying (would throw up my food) and ended up staying 9 days in the hospital.
Pathology was very favorable–no spread, no lymph nodes positive–but my oncologist said I should go ahead and do 4-6 months more of chemo (Gemzar), which is what I’m doing now until December. Bit of fatigue is the worst side effect. Not debilitating and I’m continuing to work.
Good luck to your husband!
Marianne, My prayers are with your family and you said a Lot in saying “you have Faith”. Please keep it and wonderful things will happen. Christine, I had a GIST (gastrointestinal stromal tumor) 6cm in size located on the under side of my duodenum and was leaning on my pancreas. (the Tumor also had spindle cell cancer in there). I would have never know about this but it started ulcerating into my duodenum. Because of the location of the tumor I need a complete whipple. The Chemo I am on is Gleveec it is 400mg I take it once a night and there are mild side effects but through the grace of God I have not had any unless I do not eat before taking the medication. The biggest concern for the tumor I had (size wise) is reoccurrence. This drug helps prevent that. I have faith that it will.
Dee,
how are things going with your Husband. Did you decide where you were haveing the whipple done at?
Anthony
Hello Marianne and Anthony
Well — daily my husband is getting better — he is able to hold down a little more food. We are just working with oatmeal, Mrs. Weiss chicken soup, glucerna and boost, fruit smoothies, rice, and eggs and noodles. We don’t want to push things. His swelling has gone down considerably and we just went for the 2 week post operative meeting with the surgeon. We did not get the news we were hoping for though we are still optimistic. Research is coming up with new treatments pretty quickly, so we are hopeful that with aggressive chemo and radiation that eventually we will have a good, quality life together and of course we are hopeful that soon there will be some other treatments out there that will allow those with pancreatic cancer to live a longer and more fruitful life.
Thank you all for your caring comments and God bless you all in your recoveries.
Marianne — have faith that as soon as the jaundice dissipates, his numbers will go down. When my husband was jaundiced, as soon as they put the stents in — the jaundice was gone within 6-7 days. Everyone is different though — which is why Cancer is such a strange and scary disease.
Anthony — I asked our surgeon today about Gleevac — I was hoping my husband could take something in pill form rather than via IV — as you are doing — however, because your tumor is completely different, this is why you are able to take this drug. God Bless you through this journey and the prayers are coming the way to all of you …. this blog is definitely a God send.
Christine
Stacy
Thank you so much. I am so happy for your positive prognosis. This is wonderful news.
I will ask the doc about Gemzar. We are not certain when my husband will begin his treatment — but we are hoping soon. We know how aggressive pancreatic cancer is and time is not on our side. We are staying optimistic but some days it is very difficult. My husband is starting to get depressed (though he won’t admit it) so I have been trying to stay cheerful and suggest daily outings (only an hour out or so — just to get him out of the house).
I pray for all of you daily so that God blesses each and every one of us as we go through our journeys.
Hello Everyone!!!
It’s been a while without posting. I have no new news of my dad, he is still icteric, the next week we’ll make him another exam to check if the bilirrubin levels and the tumoral marker is going down, I have faith that’s how is going to be.
Christine, I hope your husband is doing okay. Does he already start his treatment? how is he doing?
Anthony, is good to know that your treatment is going good, I hope you are okay too.
Finally I just want to tell everyone in the blog that I have you all in my prayers. God will give us the strength and a little of his infinity wisdom to keep going.
God bless you all!
Hello Everyone,
I have read every posting with interest and learned a lot from what has been written. I was diagnosed with pancreatic adenocarcinoma in March of 2009. I was initially deemed inoperable as the tumor was partially wrapped around the portal vein. I underwent chemo, radiation and participated in a study drug called Tneferade. The tumor remained stable (no growth, no metasticis)until April of 2010. I learned of a doctor in Illinois who did a whipple procedure reconstruction the portal vein from a vein in your neck. (Malcolm Bilimoria – awesome doctor) Essentially removing the part of the portal vein involved with the tumor and replacing it. I went to surgery for the Whipple Procedure on May 12, 2010 and I am recovering nicely, doing most of the things I did prior to surgery.
The biggest problems I am having is digestive issues and weight loss. Mainly, gas and stomach cramping. I am eating pretty much whatever I want (minimal fried foods, sweets, dairy). I have Creon but thought it gave me more gas then when I did not take it, however, recent visit to gastroenterologist said I must take it as it will help stabilize the weight loss. I was given a Rx for Levsin which seems to be helping with the stomach spasms and gas. I am now back on track with the Creon.
Bill – one thing I found interesting in your posting was your opinion regarding shallow lung capacity. I too find my breathing is not the same. Several times a day I find myself having to take the deep breaths to stabilize my breathing. Do you experience that as well?
How do most of you take CREON? They suggested 2 with each meal and 1 with each snack.
Thank you for all of your great information. By the way I had my four month follow up CT Scan and it came back cancer free.
Bobbi
Hello All
Well — my husband finally went on the pancreatic enzymes two days ago — he was tired of feeling nauseous daily. Since we started adding more food to his diet, I think he was just having difficulty holding his food down. It seemed he would be fine for a few days but then would need to vomit and start all over again. We talked to his surgeon who then prescribed the enzyme (Creon). He takes one after each meal and snack (he does not take it if his snack is a yogurt). Only two days – and he feels great. He is up to bike riding 2x day — trying to build back that muscle mass that he lost. We are trying to get his immune system stronger before he starts his chemo and radiation. All in all – the past two days have been great. His energy level is much higher, he is eating more of a variety of foods. I have been looking into a number of alternative treatments and supplements. There is a supplement called Avemar (AWGE)that we are considering, but we will probably take the orange flavored product since we understand the regular is AWFUL tasting. “Avemar should be consumed one hour before or after a meal, and two hours before or after any drugs or other dietary supplements.” Also, “It is recommended to discontinue Avemar usage 2 days before barium X-ray contrast examinations and resume 2 days after the completion of the examination.” The link that provides some information about this product is as follows: http://www.avemarresearch.com/pdf/C-AvemarFAQ.pdf
The FAQ says “People often report improvements in appetite, energy and daily activity within 3 weeks of beginning to take Avemar daily. Objective measures in terms of blood markers, CAT scans, MRI’s etc, typically occur within 3 months.” There is also a long list of the anti-cancer benefits of the Avemar, which are extremely impressive!
Pretty nice benefits for something that doesn’t have any known negative side effects!!! There are quite a few documents out there about this product — something to consider.
And last — we understand there may be a clinical trial here in Ohio that my husband may be qualified to participate in. We will talk with the oncologist in a week and a half and we are hopeful this is an option for him. Life is a blessing.