why whippleLife?

Living with a whipple procedure isn’t easy. Unfortunately the nature of the procedure is such that most of us who have undergone it are in such different circumstances that a strong network of “survivors” is almost impossible to find. That’s why whippleLife.

In the weeks following my procedure I desperately sought information about what I could and should expect during my recovery. “Everyone is different,” I was told. “There’s nothing we can tell you because everyone is different.” When things didn’t go quite right I was told, “You’re symptoms are atypical. There’s nothing we can tell you because your symptoms aren’t like those of others who have had this procedure.” (!)

It is my belief that regardless of how similar or dissimilar our experiences, by sharing our stories, or the stories of those we have known and cared for, patterns can and will emerge which can help those seeking to “recover from the cure” better understand and cope with this life-altering event. It is my hope that by creating and sharing this resource there will be a place where those of us living our lives with the whipple procedure can find strength, inspiration and hope.

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48 Responses to “why whippleLife?”

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I had a whipple on 3/25/08 and am still recovering. I would love to learn more about the issues others are having. Will I ever be able to eat normally again or am I stuck on a low fat non dairy diet for the rest of my life? Any help or advice you can give me would be appreciated. Thanks,

Janet,
I had a whipple on 3/1/2004 and just celebrated my 5 yr. I was young when diagnosed and only 30 when my surgery was preformed. I am now able to eat sooo much more but still cannot eat dairy. I have spoken with 2 other whipple survivors who cannot eat dairy either. Good luck to you and it DOES get better!

Janet,

This is why I started this blog to see what we can find out together. I’m still working on organizing my thoughts to describe the details of my last four months, but I hope that some of what I’ve gone through can help, though it can’t define your or anyone else’s path.

I can tell you that one month ago I could hardly eat anything. Even the “several small meals a day” was just too much. I was getting most of my nutrition via as many Carnation Instant Breakfast drinks a I could take in a day but that just wasn’t enough. Once things started to turn around, though, they did so rapidly. Last night I had steak, a baked potato and salad for dinner! I don’t eat like that every night but I’ve found that I can without ill effect. I’ve also found that Pancrecarb helps and even though my pancreatic enzymes are at a normal level my doctor told me that higher is better in my case, so if I know I’m going to be eating a large meal or something that’s “on the edge” as far as what my system can take, I always take the pancrecarb first.

What was drilled into me, and what I learned the hard way, is that nutrition is essential and whatever you can do to maintain your nutrition you have to do. I went back to the hospital twice, in part because my body just wasn’t getting what it needed to sustain the recovery.

The more I work on the blog the more concerned I become. I’ve uncovered several comments about long-term issues with the whipple surgery that are, quite frankly, frightening. Anyone just stumbling across a testimonial or two might feel as if they have no chance of a “normal” life after the surgery. I’m heartened, though, my information I came across very early in my process which indicated that rates of complication, short-term and long-term, were greatly dependent on the facility in which the procedure was performed and the experience of the team performing it. In addition, most statistics about long-term complications do not reflect recent advances in technique nor an increase in the number of well-qualified facilities.

I hope to be able to track down some of these more revealing statistics and see if a fuller picture can be presented. I’m inspired by the first person I talked to who had had the procedure. He’s a retired surgeon who had the surgery when it was 75. He’s now in his 80’s and leads a life almost identical to the one he did prior to surgery, including playing tennis several times a week!

Despite what is prevalent, there are many similar success stories out there and the statistics are not all hopeless.

7 years post whipple now having problems…where do you turn now as they can’t remove the remaining pancreas

Dear John, you can certainly have your remaining pancrea removed. I did. I suggest Dr David Sutherland at the Un of MN

John, I hope that someone reading this blog will be able to give insight into your situation, but would you be willing to share more of what’s happened to you? Do you know what’s caused the stomach problems and pancreatitis?

I am so happy to find you blog. I too am a Whipplett. I was diagnosed in January 2005 after a year of telling MANY doctors ‘there is something wrong”. Finally I was diagnosed with Pancreatic Cancer, not that I was thrilled, but glad to know it was not in my head (as some doctors had accused). I was not a surgical candidate and told by the best of tbe best for PC that mine was around portal arteries. Fortunately they were wrong, I did chemo for six months and had surgery 10/2005. Gee, its’ almost my third year surgery aniversary and my 4 year from diagnosed!. Note to Kiki: cellebrate life.

So glad to see your site and I would love to have a place to put my story as well.

THanks for doing this for those new ones who can’t find anything about this cancer or who to live with a whipple.

My name is Linda Hageman RN. I sent you an lenghty e-mail via facebook but do not know if it was sent to you. So I thought I try this venue. I had a Whipple Procedure at Mayo Clinic, Rochester MN. 21/2 years ago and would like to share advice on life after a Whipple Procedure, becuase you literaly have to take one day at a time. You can e-meil me at linda@hagemanFoundation.org. or call my Foundation ‘s # is 866-612-8579

I was diagnosed with pancreatic cancer in January 2009. I had the whipple on 1-9-09. At first, my internist thought I had hepatitis as I had turned yellow. She called me back and told me to go to the emergency room. I had many tests(sonogram, cat scan, MRI) and the ERCP as my bial duct was obstructed. This is when the cancer was discovered. My story is basically like yours except that I spent the weekend in the ICU being cared for by a wonderful nurse named Richard. My pain was regulated that way. I got out of the hospital ten days after my operation. On Monday, I started radiation with Xeloda twice a day. This is to make sure that all the cancer cells were removed. After six weeks of radiation, I will face four months of chemo. My upside down smiley is pretty numb. My surgeon says that it will be that way for at least six or more months. My appetite has returned. I was a smoker for 40 years and I have quit cold turkey. I had a lot of trouble with the taste of food, but I think that had to do with the fact that I had taste buds again. I have been very lucky that I did not have any pain prior to turning yellow. I was having some indigestion and have never been known to go to the doctor at the drop of the hat. Now I know that these were little symptoms that I should have been listening to. I am 56 years old and hope to have a long life. I am taking it one day at a time.

Felicia, thank you for sharing your story. I’m so glad that the surgery went well and that you’re doing so well in recovery. There’s still a long road ahead but it sounds like you have a great attitude and a positive spirit! There are not many of us out here for advice and support, so I hope you can find some via this site. If you’re on Facebook there are also some groups there with people who are living the whippleLife! I just had my one-year check-up and everything is fine so it is very definitely possible! Best wishes and good luck for all that is ahead. Feel free to continue to share your experiences here for inspiration, advice, and support.

Thanks for your site.I’ll be 45 in June,have a 4 year old boy and wife and had a Whipple 3/12/09.I’m very grateful that in the end I did not have cancer.They tell me the path report shows chronic autoimmune pancreatitis.So I am left with about 50% of a pancreas that is pretty damaged.My heartfelt sympathies go out to all who have been Dx,d with cancer.I had to make a decision to go ahead with a Whipple or watch and wait on something that University of Michigan and Drs at Johns Hopkins were highly suspicious was cancer.It’s a real eye opener how many gaps of understanding there are regarding the pancreas.I had to do what I thought was best to ensure I could be around for my son/and wife.Hope I don,t sound grateful,but knowing if I had cancer or not would have made my decision much easier.So far eating has been tough.I’ve lost ABOUT 15 pounds since surgery.I used to just love eating,and all the ladies who love me (wife/mom/mother in law)loved feeding me! I had one boout of pancraetitis 11/08 and the whole saga began.These changes are alot to handle in 4/5 months,but it would be far worse if I was,nt lucky enough to dodge cancer.I’m not a man of great religious faith,my wife is the Catholic,but hopefully as time passes,I’ll get happier! I know I have to be strong for my son.Has anyone gotten upper left abdominal pains after eating,especially at night? I don’t seem to have as many symptoms after breakfast.Peace to all.

Hi Dan! Yes, I had a great deal of upper left quadrant pain after eating until about a month ago. I am post Whipple by about 6 months. Enzymes were a great help to me and now I am eating and digesting ‘normally’. I owe my life to a terrific surgeon (Dr. Michael Bouvet) at UCSD in Southern California. If I can be of any help here to anyone with questions, please email me at Cjean37@gmail.com

I had a whipple 12/18/08 in Memphis TN. My surgeon was Dr. Stephen Behrman. He is phenominal. I highly recommend him to anyone in this area that needs a surgeon who does this procedure on a regular basis and has the success rate he does. That being said, my recovery was very slow in the beginning. Probably 4 months until I could eat pretty much anything I want. Some things I digest better than others, you learn that as you go along. My activities are pretty much back to normal. I exercise about an hour a day, anything from bike riding, walking, or swimming. I think that helps me alot. From time to time I feel like I am having muscle spasms in my upper mid section. Some have said it must be healing pain, but I don’t know. Has anyone else experienced this? Occasionally I hurt, but taking an antacid daily and eating Tums when my stomach hurts a bit has helped. Bottom line, I’m grateful for every day I have and live it as such. I don’t take life for granted anymore and know that God gave me a second chance for a reason. My best wishes to all for a long and healthy life.

Rita, thanks for sharing. Are you still in the Memphis area? My wife will have surgery Thusday by Dr. Behrman and I was wondering if you could answer a few questions. My email is ken915us@yahoo.com Thanks

Without excellent health coverage I would not have been able to afford the Whipple procedure. I would be dead. There must be thousands out there who are not as fortunate as myself, and for this I will be forever thankful. Cj

Cj, I know exactly what you mean. I recently had to change my insurance from the coverage I had when sick and the difference is astonishing. I also was fortunate to live near a large research facility that was running a trial. Otherwise, my tumor would have been inoperable. The elements of chance which engaged to preserve my life are astonishing.

My husband had a stomachsurgery 4/21 and
after that they told us he needed the
Whipple 4/24, all 2009, more surgeries,
2 Cardiacarrests, 2 GI Bleeds and Bloodclots later he is alive after 8 1/2
weeks in ICY alone, later 10 days rehab.
He now is home for 1 month, but he is so
sore all over, little or no appetite,
no strength. He did not have cancer and
does not have cancer. What encouragement
can another survivor of this surgery give
him……

Wow, isn’t that the truth! My husband, Thomas, 50 years old had the whipple on 7/28/09; 16 days in the hospital. We he was sent home – he was sent home with a wound vac because they could not close him up due to inflammation. I am worried sick about him. He vomits and has diarrhea about twice a week. They now want to put him on TPN he has lost about 30 pounds. Will he ever be pain fre! The doc said that Thomas is a tough case. We live in Colorado.

Had Whipple at UCLA 150 days ago. Got good labs report from oncologist yeasterday. Elected to defer chemotherapy or radiation. Interested in various diet and lifestyle options. This site seems to be very like my own approach and thinking. Many thanks.

Dear Lachlan,
I had a Whipple almost 3 years ago and I use an insulin pump with a continuous glucose sensor as I had to have all of my pancreas removed. My advice is to try to stay active as much as you can. I take Viokase to replace pancreatic enzymes before I eat anything. I do have periods of time that I am unable to eat and keep down anything. Recently I was advised by a GI doc to drink Pedialyte to keep hydrated as I am unable to control my glucose levels if I am dehydrated. I eat mostly bland foods and I have a hard time digesting dairy except cheese and yogurt. I find that eating smaller amts. of food 6 times a day helps also. If you have any other questions please e-mail me Linda@hagemanfoundation.org the closer you eat to nature the better off you will be, I do buy mostly organic veggies and I do not eat any red meat stay away from chemicals Linda Hageman, RN

My dad (67) had a Whipple performed 4-01-08 at UCLA. Unfortunatley the Dr. that performed the procedure was not on staff at UCLA (which we did not know). We have since found out that documents have been falsified and Medicare is aware of the situation and is taking action. Anyway, my dad has still not had a follow-up appointment with a surgeon since surgery and he left the hospital without ANY information on diet and what not. He has been suffering from SEVERE spasms in his diaphram and is now throwing up bile (or what we think is bile). His Gastro Dr. said that it may be that things are coming out the opposite way. Well, he was admitted again tonight for a bowel obstruction. Please help with advice!!! We need to find a good Dr. that is familiar with the whipple that can see him through this part of his recovery since he has not seen anyone for a follow-up in almost a year. And if you know of a good attorney in the LosAngeles area that may take on a case of Malpractice, please let me know. Our main concern is for my dads comfort and healing but how dare this Dr. be allowed to do this to someone else. He is now on staff at UCLA…so BEWARE!!! I felt so comforted knowing that many of the people on this site are celebrating 5yrs and more. I pray that my dad can get help soon so that I will be postin the same. Thank you for this site. God Bless all of you…Whipplets and families!!!

I hightly encourage you to contact dr David Sutherland at the UN of MN. If anyone can help, it’s him. He is the pancreas “god”

Kathleen, Thank you for your post. Unfortunately we live in CA and my dad is too weak to fly anywhere. I will contact Dr. Suterland anyway and see if he can refer us to a Dr. in our area. We are finding that the doctors that we have interviewed, that say they are familiar with the whipple were only present during a suregery to observe and really don’t know much about complications and recovery. Thank you again.

Actually you are at a very good, excellent medical center. One of the foremost knowledgeable in this type of surgery is Dr. Michael Yeh he is the director of the Endocrine Surgery Program, you can reach him at 310-206-0585. I have spoken to him a couple of times and anyone who has had him says nothing but wonderful things about him and his staff. You can contact me directly at http://www.multipleendocrineneoplasia.org or linda@hagemanfoundation.org this is a non profit our family has developed for multiple endocrine neoplasia which is an endocrine disease that produces tumors on endocrine glands on of which is the pancreas and we often need to have a complete Whipple because of tumors that grow in the pancreas. please do not hesitate to contact me for other information blessings Linda Hageman, RN I can be reached via phone 865-981-8815 I live in the eastern time zone

It has been a year since I had my whipple, however things are not going as they were supposed to. I reread my original post and I did sound pretty positive about life. I completed the radiation and chemo. I had a doctors appointment three months later and the Doctor said that my CA19-9 was not good. This is a blood test that is a tumour marker. After the first chemo, it was at 32, then 40, and after the three month wait to get another test, it was at 230 and the next week it had doubled to 454. I had a pet scan that now comfirms that I have liver cancer/ten 1cm spots. My Doctor told me to go live my life right after the end of my first round of chemo. Now I am taking gemzar again. I am not in any pain as the whipple left me numb. I’m taking my medicine but have very mixed feelings about couldhave, shouldhave wouldhaves. I should probably have taken more of the original chemo a little longer. I don’t know what to feel. I feel that I need to see another doctor. I can’t afford to play with this. I am on anti depressants and they are helping. I feel lost.

I am a 48 yr old woman who has been advised that I need Whipple surgery. In my case it is for FAP in my duodenum that is in the first stage of change to cancer. I live in Sacramento CA and I want to find information about finding the best surgeon in the area for a Whipple. Any suggestions?

Again as I have said above UCLA Medical Center Dr. Michael Yeh Linda Hageman, RN

Thank you for the information. Do you know of anyone in Northern California? LA is 7 hours away and San Diego is 9 hours away. It’s difficult to have the family support that’s needed at that distance, let alone follow up visits.

I live in Northern California but traveled South to S.D. for the surgery. It was difficult for the reasons you mentioned, but in the long run, for me it was worth it. Try UC Davis and perhaps you can find help there.

As I mentioned above in June of last year, I highly recommend Dr. Michael Bouvet at UCSD. His website is: drbouvetucsd.com
Cj

I emailed Dr. Bouvet and he gave me a recommendation for a surgeon at UC Davis. Thank you for your help!

You are very welcome!

Reading the comments is a roller-coaster event, but predominantly supportive. I’ve just returned from an ER & hospital visit for internal bleeding, following endoscopic examination, with a prescription for protonix, an unexpected event.

I had a whipple done 12/18/08, stayed in the hospital 3 weeks. During a follow up doctor visit I was told to take an antacid daily for the rest of my life or I would have bleeding ulcers. I take prevacid now that it is “over the counter”. My surgery and recovery went well, but I do still have stomach spasms and digestive issues to deal with and always will have. I’m just thankful to be here. Best wishes.

hi Marc,
Congratulations on passing your 2 year survival mark. I am doing good any get your posts on Hageman Foundation and have had the pleasure to speak with people undergoing the Whipple Procedure. Thanks for all you have done and continue to do. Linda Hageman RN
Linda@hagemanfoundation.org

I am 45 and a month ago I ran probably my 30th half marathon. On 23 April 2010 I go in for a whipple due to 2cm mass (unkown if malignant or benign) on my bile duct. The mass appears isolated on the MRI and CT and no indications of issues with my liver or pancrease. Won’t know for sure until endoscopy and surgery. Nerveous yes, but having a mother who survived lymphoma far longer than her doctors gave her. I have faith. Faith in me, faith in my doctor, and faith in god. I know the recovery will be miserable and longterm will cause life changes but death is not an option. I will follow up my progression. For all of you my best wishes.

Stephen, I hope your surgery went well. Please let us know how you’re doing.

I was diagnosed with a neuroendocrine neoplasm in March & had my whipple April 14 at Vanderbilt, Dr. Alexander Parikh – excellent surgeon! He also had to take 1/3 of my stomach along with the other stuff. I am fortunate & thank GOD that my tumor was benign.

I’m eating fairly well now, though I’ve lost about 40 pounds since surgery – though, unfortunately, only about 3 or so inches from my waist… :)

I’ve been prescribed CREON, which are powerful digestive enzymes – I believe these have helped tremendously. Prior to surgery, for about 9 months or so, I’ve worked on having a much healthier diet & being healthier all-round, & this helped me greatly in recovery.

I’m told I’m recovering & healing splendidly, but I’m still waiting for the “feeling good” part to kick in…

Thanks for this site, BTW!

My wife has been diagnosed with a lesion at the end of the bile duct from the gall bladder and we where told it was in the beginning stages of becoming cancerous. 3 years ago she was hospitalized when she had a gall bladder attack and they said then she had a benign lesion without stones. 3 years later she has stones and the lesion has grown but it is not malignant. Dr. Way at U.C.S.F. wanted to do the Whipple but he did not answer my calls when I had serious questions to ask so we canceled the surgery. Both Dr. Parekh at U.S.C. and Dr. way talked about the removal of the gall bladder, the bile duct, a portion of the small intestine, and half of the pancreas. I asked Dr. Parekh why half the pancreas, why any if the lesion is benign? His nurse called back and said maybe only 20%. He only wants to do a C.T. scan and a biopsy. What about an MRI and an E.U.S.. We want to have conclusive proof before he even touches the pancreas. The pancreas controls the blood sugar as well as the insulin as well as the hormones, right? My wife will be 51 August 20. She has no symptoms of pancreatic cancer only a lesion. She has a good appetite, good energy, poops well and no jaundice. Why can’t they just go in and take out the gall bladder and replace the bile duct with something that works and not even touch the pancreas. I called John Hopkins and they suggested a pet scan also to see if is in fact cancerous. After speaking with a few people about the bile duct I now know it goes into the pancreas through another common duct so the lesion may or may not be touching the pancreas. Is there anyone else out there who has had the same problem and if so what did you do and how are you today post surgery?
You can reach me at johnnyr94598@yahoo.com

Your story is amazing.
My mother was diagnosed with pancreatic cancer in June 2008 and had the distalend of her pancreas removed with part of her spleen. This surgery is very rare and she was lucky that they discovered it in stage one. Also rare.

She passed away after two years as a result of being immuned to some chemos from her battle with hodgkins in 1982. She also couldn’t be radiated because she was radiated from her first battle and could face severe complications as a result. I would love it if we could keep in touch. I just recently started a blog to raise awareness and funds for pancreatic cancer. http://www.hopefortaly.com
I’m also adding you to my blogroll so people can read your story. If you have the time I would love it if I could reference your story in my “inspirational story” section. A comment from you would also be apreciated.

Don’t give up, educate yourself, and take doctor’s comments with a grain of salt. I’ve learnt so much about medicine, people, and life from this experience.

-Liat Weiss

I am so glad I came across your site.

In August of 2008, at the age of 33, I was diagnosed with stage 2 pancreatic cancer. After undergoing a Whipple procedure to remove the tumor from the head of my pancreas, two days later the lab results came back and I learned that the tumor was benign.

Since the procedure, I have experienced periodic “spasms”. The pain starts in the upper abdominal area and radiates upward, goes all the way to the shoulder and back area. Hard to describe, but it actually starts small and then builds. It is severe pain, difficult to breath when it occurs. When I have it, I usually break out in a cold sweat toward the end of the episode and afterward I feel completely wiped out. The first time I had this I thought I was having a heart attack. I have even spiked a fever afterwards.

Has anyone else experienced these types of pains? If so, any suggestions on managing them?

Thanks.

Hi Brian,
I had a Whipple Procedure twice! In 2004 I had the head of the pancreas and spleen removed because I formed tumors in the pancreas. Thank God they were benign. Three years later I had several tumors that grew within a 6 mo. period. I was getting my care at Mayo Clinic, in Rochester, MN, and they had the advanced testing using an endoscope with an ultrasound and were able to look at the pancreas and found that 9 tumors had grown within 6 mos and may be cancerous. At that time it was decided to have the rest of the pancreas removed along with the gall bladder part of the large and small intestine and major revision of my stomach. Anyway I now have a non-profit that addresses the Whipple Procedure and at this time it is on The Hageman Foundation for Multiple Endocrine Neoplasia (MEN) (which is a big endocrine disorder) that means many tumors on endocrine glands. Usually the Pituitary, Parathyroids, and Pancreas,thus alot of us with MEN end up having the Whipple Procedure. AT this time there is a Whipple Blog at wwww.multipleendocrineneoplasia.org and we have had such an overwhelming response in the next few weeks we are going to open a non-profit web site dedicated to the Whipple Procedure. We provide education and support for people who have the Whipple Procedure and support for others that are caring for the person having the Whipple Procedure.

To get back to your concerns, I did have the kind of pain you are experiencing. I would say after about 18 mos. after the Whipple Procedure it did subside. I was told there was no way I was still feeling pain so long after the surgery and was told to go to a pain management person but I never did. I got more active the spasms were less and less. Brian was your whole pancreas removed? Do you have to take insulin or digestive enzymes with meals. This is an important piece of information. You can e-mail me here go to our website or e-mail me directly linda@hagemanfoundation.org I do work with people from this website quite often.
Linda Hageman, RN

Hi Linda,
You have been through a lot. I think what you are doing with the website is terrific and if there is anyway I can help please let me know. I have been doing website and user interface design for over 12 years.

During my whipple, I had the head of my pancreas removed along with my hall bladder and a section if my small intestine. I didn’t have any portion of stomach removed. I currently take digestive enzymes with meals and snacks along with a daily vitamin and Nexium. I have been diagnosed with lymphoplasmacitic sclorosing pncreatitis. It is an autoimmune disorder that mimics pancreatic cancer.
Please stay in touch and let me know if I can help in any way. Thanks.
Brian

Dear Brian,
I am looking for someone to help with the web site. I actually want to do a new web site with Whipple information on it and gather all our thoughts and experiences to share with one another. Please e-mail me directly linda@hagemanfoundation.org so we can chat.
thanks for the offer to help. Linda hageman, RN

“Funny” you should mention that Brian, I’m post whipple since April of this year & spent Sunday evening/night & early Monday Morning at Vanderbilt’s ER, wondering what was happening to me – I have a hernia & it was probably incarcerating my bowel – not sure what would cause the pain to go to your shoulder…

Hi Robin,
I too had an incisional hernia about a year after my whipple. The hernia really wasn’t causing me any pain but I had it repaired before it got worse. I wish I could say that was what caused my spasms but I still get them to this day. I sometimes describe them as if something is squeezing my organs lightly and then progressively harder and harder. I find it difficult to breath during the 5-10 minutes that they occur. Is that what you were experiencing? I hope you are feeling better.
Brian

This very recent thing was not like your experience – it was more like a blocking or extra fullness that was more constant – from a 5 or 6 up to a 8, depending on how I sat. I discovered my tumor through periodic bouts of pancreatitis; I’ll keep you in my prayers. I take the digestive enzymes (Creon) myself & found they help. I’ve also found that following a healthy diet (something like the healing diet) helps quite a bit.


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