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Duodenal cancer: recovery from whipples

simkor
Posts: 17
Joined: Dec 2009

Hi, My husband was diagnosed 10 wks ago with duodenal cancer which had spread to panceas. He had a whipples. He came out of the op ok but in recovery started to bleed they took him into surgery again. They couldnt stop the bleed & cam every close to lossing him. He had a third surgery the next day they stopped the bleed. three days later took him back to surgery to fix a bile leak. He was in hospital for 2 months. He was discharged last week we have a nurse who comes to our house. Im interest in other peoples storys bout the whipple surgery & the recovery. any info would be great.

Thanx Korina

joekolb24
Posts: 1
Joined: Jan 2010

Korina, I was saddened to hear o all the complications regarding your husband's Whipple surgery.
My wife is facing the same procedure next week. Now that another month has passed by I was hoping you might have an update, and more encouraging news.
Also, do you know what your surgeon's track record is and also how many of these procedures he has performed?
Joe

simkor
Posts: 17
Joined: Dec 2009

Hi Joe,
Sorry I havent replied sooner. We had to move house. Certainly not what we needed.

I hope your wifes surgery went well & is having a good recovery!!!!

I live in Australia. The surgeon we had was the best. We didnt even go looking for him. We were lucky my GP knew him. The problem was the scan didnt show how bad & how much it had spread. The only reason he went on with the op was he knew we had two young kids(6 & 2yrs)& also simon is only 33yrs. He removed more then in a normal whipples.

Simon is doing really well now. He just last week finished six months of chemo. He gets a scan next week but it looks good. Now cross fingers it doesnt return.

Take care

Oneshot
Posts: 62
Joined: Jul 2009

I'm a 14 month survivor of stage 3 pancreatic cancer. I had a whipple done in sept. 2008. I found that PANCAN.ORG was an other good source of info. about the whipple procedure. It had stories of people who have had PC and a support group also if I remember correctly.

I will keep both you and your spouses in my prayers

simkor
Posts: 17
Joined: Dec 2009

Hi, I hope you are still going strong & well. My husband is doing really well now.
Thanks for your prayers you are in mine.

CaryRenault
Posts: 11
Joined: Jan 2010

Hi Korina -

I was due to have a Whipple. I have Pancreatic Adenocarcinoma. I am NOT sure what
other questions I should be asking my Doctors. Tghe surgeon did NOT want to do a Whipple because the PET scan showed 2 very small nodules. 1 was removed with a VATS operation.
That confirmed to the surgeon that it metasized to my lung. So, I am know trying to getinto a clinical trial. View; http://clinicaltrials.dfhcc.harvard.edu/trials/1397
which I hope will solve a lot of problems. I am ONLY 51. Have a wonderful caregiver wife and
my 85 year old mother lives with us with my service/site dog.

Later,
Cary

simkor
Posts: 17
Joined: Dec 2009

Hi Cary,

I hope you got into the clinical trial & it is helping.
My husband is also young hes 33yrs we have to young girls 6 & 2yrs old. Simon is doing well. He just finished six months of chemo. Fingers crossed it doesnt come back.

I hope you reply. Take care Korina

gracie3459
Posts: 1
Joined: Jan 2010

I had my Whipple in Grand Rapids MI in May of 2006. I had a misdiagnosed Duodenal tumor that had spread to my Pancreas by the time it was accurately diagnosed. It was a Stage 3 Cancer at that point.

I was in the hospital for 2 weeks. The staff labeled me the "poster child of the Whipple Procedure" and I told them that I would hate to have had a "normal" recovery. I had a drainage tube for about 2 months but that was manageable at home without outside care. That tube was to drain off leakage of pancreatic fluids into the abdominal cavity.

I resumed regular diet after about 4 days in the hospital. Obviously, going from soft to regular as tolerated.

I took advantage of having Acupuncture treatments which really helped relieve the pain. I had gotten into a pain deficit due to my epidural coming out on its own before I was sequenced onto IV meds.

I was up and walking the halls (with much pain) but up and walking after the 4th or 5th day. This activity was what they said made my recovery as quick as it was. The pain was excruciating but just remember to get a new pain dosage on board your body and then take the walk.

For the person that is looking to have this done. I can only say that it won't be any fun but if it keeps you alive it is worth it. I spent the past week end down hill skiing with my 3 grand daughters and will be traveling to Cheyenne WY to spend a week with my Grand sons on Tuesday.

A short synopsis. I have had cancer 4 times plus one exploratory surgery to rule out diffinitively a Pancreas cancer back in the 80s. I had endometrial (uterine), colon rt sided, the duodenal and then another colon lt side 18 months after the duodenal. None of these were true metastases but due to what clinically presents as a genetic condition. This does not, at present, genetically blood test as genetic but we treat my body as if it was positive. I was 34 years old with an 11 year old and a 13 year old when I had my first surgery. I have been able to watch not only their lives but the arrival and growth of 6 grand children. So, get the best surgeon you can find and have it done. I don't know how much info is allowed on this site as to facilities and surgeons so I won't add anything else.

raidersfan29's picture
raidersfan29
Posts: 2
Joined: Mar 2010

my whipple is set for march 9th and im getting worried the rareity of the cancer and the severity of the surgery scares me can anyone give me words of incourgement to help me through this

bosco134
Posts: 4
Joined: Mar 2010

my husband just came home from a whipple/nueroendrocine tumor the size of an eggplant and 6 nodes taken out he was in surgery for 7 hours we were also quite nervous but have faith in your Dr. and prayer it does work. Good Luck hope you are ok. Where is hospital?

will2survive
Posts: 4
Joined: Mar 2010

How are you doing from your surgery? We'd like to hear from you.

NancyinCa
Posts: 2
Joined: Oct 2010

I too am recovering from whipple surgery. They removed a 2-3in mass from wall of duodenim. the MD now is recommending continuous low dose chemo 5FU for 5-6wks with radiation for 5-6wks. Did you have any follow up treatment. If so, how did it go, and how are you feeling now?

NancyinCA

simkor
Posts: 17
Joined: Dec 2009

Hi Nancy,

Since I opened this discussion. My husband Simon(34) has had 3mths of chemo. Simon was to do the same chemo but after having lots of drains coming out of him he wasnt keen on having chemo attached to him for 3mths so they modified it. We would go to hospital & they would attach it to his picc line in his arm then we would take it home for 3 days then they would take it off. We did this every second week. On the off week a nurse would come to the house to do his dressing.
Simon did get sick but it wasnt as bad as we where both excepting but still it was so hard to see him go throught it. Simon would make sure he would eat even when he didnt really want too. It made him very tired. Its been 2mths since last treatment he is still tired that is also from the surgery.
I personally feel its worth the chance off it not coming back. We had to try as we have 2 little girls(7,3.
Take care wishing you all the best. Hope this has helped you in some way. Korina

will2survive
Posts: 4
Joined: Mar 2010

Yes, I remember walking a lot, I would disconnect and connect my own stomach tube and bag, made them show me because I just wanted to get up and live. My one friend told me when came to visit with me I told her I had to walk or I would die, so we walked round and round the halls. It was funny because I didn't remember saying it but with the pain and the painkillers there was a lot I didn't remember the first couple weeks.

simkor
Posts: 17
Joined: Dec 2009

Hi,
Reading this bought tears to my eyes. Im so happy for you & your family. I would also say you where the poster child of the Whipple Procedure. My husband is 33yrs old we have two little girls 6 & 2 yrs old. Simons scan didnt show how bad or how much the tumor had spread. He normally wouldnt have gone on with surgery but he knew of our girls so he took the risk & did it. They did lose him on the table but manage to save him.
Even with all the problems simon has had with the surgery I will say we will get to watch our childern & their childern grow up. He is meant to be here. Have to be strong not easy all the time.

Take care

hupernikao
Posts: 1
Joined: Aug 2010

I was just curious about if you are able to do everything you were doing before the whipple. Sounds like you still ski.

I am very close to earning a 1st degree black belt in taekwondo, but after my diagnosis and being half-way through radiation and chemo, I find that I am getting pretty weak. I will probably have my whipple done in October after the radiation and chemo have hopefully shrunk the tumor on the head of the pancreas.

I'm just wondering how long it's finally going to be before I won't be weak any more and can start training again so that I can finally get that black belt. The whipple sounds pretty daunting and I have to admit that I am pretty scared about having it done, but then the alternative doesn't leave me any choice.

Haylez
Posts: 6
Joined: Mar 2010

Hi everyone.

My Mum, age 52, was diagnosed with Duodenal cancer, which had spread to the liver, thankfully very early, about 5 weeks ago.

She had a whipples last Tuesday and is doing really well. Obviously the recovery for such an operation is huge, but she is now just on Panadol for the pain, and was allowed to eat ice cream today!

She tries to get up and do a lap of the ward as often as she can, it makes her feel a lot better. She gets tired easily, but doesnt complain, as it will hopefully save her life.

She is one of the lucky ones that has had no complications so far. Although she is still in hospital, and expected to be for at least another week.

I think it's so important to have a good attitude with it. Her attitude right from the start has been "I don't care what it takes, make me better". She was prepared for what a huge recovery it would be, and is taking it day by day.

Please keep me updated as to how you are all going. And those of you who are going to have the procedure, I wish you luck! Remember the link between mind and body, be positive about your experience and your body will follow.

I will keep you all in my prayers.

Haylez
Sydney, Australia

Mrandl
Posts: 3
Joined: Apr 2010

I'm 9 and a half weeks out following my whipple. I'm about 90% of my old self. I was in hospital 15 days due to a c-dif infection after 7 days. I lost about 40 lbs. but at 244 I needed to take some off. I still have a drain and occasional bad pain just below my breast bone. I think it's gas. My first round of chemo wasn't too bad, just tired and very sensative to cold. I'm determined to beat it. Best to all of you with it or supporting loved ones.

MichelleB83845
Posts: 13
Joined: Apr 2010

Did you have any positives in your nodes? I am almost 7 weeks out and feel pretty good. They took out a 4.5 cm tumor and said 1 of 8 nodes were positive. I will be finding out about chemo/radiation soon. How long do you have to do chemo? Any advise is helpful.
Michelle

Mrandl
Posts: 3
Joined: Apr 2010

I did have 7 out of 12. I'm told they will only do chemo, don't need radiation. I also have two spots on my liver the surgeon found during surgery. According to the oncologist that is the biggest battle althoough my wonderful surgeon says: "don't worry about the liver, I'll take care of that if needed." I've had 3 rounds and this last one was really easy. Very few side effects other than tingling in the fingers and toes. Use a towel or something to get things out of the fridge. I'm on an infusion I can't pronounce or spell but also on xeloda. I am very positive about this drug and I am working to be positive about my situation and about my personal attitude. "The best is yet to be and I'm going to be cancer free."

Bless you in your efforts. I'll try to be more attentive to this web site.

Ant041's picture
Ant041
Posts: 2
Joined: May 2010

Hey Everyone, A little about me. I am 36 years young and I had a Whipple on Jan 11,2010 for a Duodenal (GIST) Tumor. I can say now (thru the grace of GOD)I feel Great! I am eating somewhat normal, Travel for my full time job and walk a lot for my part time Job, My 2 kids have me pretty busy with sports as well. As far as the surgery (I'll give you the short version)I wil not lie I was scared, but I think it went very well my surgery was 8 1/2 hours and I was in the hospital about 12 days, came home with a G tube and a J tube which I did not use and were out in a month. I have a great Wife who is a nurse which pushed me every step of the way and made sure I didn't give up and I ate small portions and I did the little things I needed to do. One little peice of advice make sure you walk in the hospital and keep your postisuer, it may hurt at first but it will help in the long run. I wish all of you the best and I will be on here often please don't hesitate to contact me with any questions or concerns. May God Bless all of you..

Ant :)

will2survive
Posts: 4
Joined: Mar 2010

Hello,
I had Whipple in June 2001, removed duodenum, part of pancreas, part of stomach, part of small intestines, part of colon, all the appendix and 3 large lymph nodes. The cancer was growing around the major artery. 9 hour surgery and Thank God at the best teaching hospital in St. Louis. I was in the hospital 26 days. Had chemo therapy, and no true protocol for duodenal cancer they gave me pancreas and stomach chemos basically followed by 8 or 12 weeks radiation (so far behind me now I don't remember exactly how long). I was 47 years old then. Other than the arch shaped scar on my stomach you'd never know, have no problems with eating and after about 2 years had gained all my weight back. During the 2 years of mis-diagnosis I had lost about 70 pounds and was pretty much on deaths door. Finally found the right place. My advise to anyone facing this would be to go to the largest teaching hospital in your area. People go to this hospital from the whole midwest area and I would say to anyone this is not the time to quibble about convenience. There was nothing at all on the internet about duodenal cancer then and I felt totally alone with it, I am glad there is something now. I just recently found as now have breast cancer (totally unrelated) so I just by chance found there are others out there!
Good luck and God Bless you all!

MichelleB83845
Posts: 13
Joined: Apr 2010

What form of radiation did you have? I am due for radiation soon and am told that the 3-D therapy will destroy alot of my kidney function, but of course my insurance will not approve the other type that would cause less damage.

Do you have any problems with your kidneys?

Wish you the best

aliveandkicking
Posts: 3
Joined: Mar 2012

Hi there. I am 47 yrs old and I have just signed up to this site after reading your post on your struggle with duodenal, colon and breast cancer. I have had my colon removed in 2004 after bein diagnosed with a genetic disease called FAP that causes colon cancer and other areas of the digestive tract with mulitple precancerous adenomas. I have recently been diagnosed with severe dysplasia in one of the duodenal precancerous tumors they have been monitoring. Am scheduled to have a larger area taken out via mucosectomy to see if the cancer has become invasive etc. I was also diagnosed with breast cancer last July and have a rarer form called invasive lobular breast cancer. Had a double mastectomy in October after an unsuccessful lumpectomy. 2 of 12 nodes showed cancer, chose not to do chemo based upon studies showing it wasn't effective against my type of breast cancer. I am on a five yr. course of Tamoxifen now.
I am meeting with a genetisist in a few weeks and since our medical history is similar and includes rare cancer such as duodenal, was wodering if you have ever had genetic testing or if there might be a link to all this. Any info. to help try and solve this riddle would be most appreciated.

simkor
Posts: 17
Joined: Dec 2009

Hi Ant,

Im so glad to read your recovery has been good & speedy. My husband is 33yrs old we have two girls(6,2yrs). My husband just finished six months of chemo. After three months of chemo he went back to work. He only did 1 week on 1 week off as his chemo was for three days. He found it hard as he was so tired but needed it mentally to keep him going.

Wishing all the best. Take care

Haylez
Posts: 6
Joined: Mar 2010

My Mum had no positive nodes, but a tiny spot (4mm) on her liver, and because of the rareity of duodenal cancer, and the lack of good research on it, she opted to have chemo.
They're calling is "insurance" chemo, to mop up anything microscopic that may be left behind. Her surgery went amazing with good margins etc.
She just had her 3rd cycle of FOLFOX chemo, and is doing pretty good so far. She goes in once a fortnight for 3 hours, and then brings one drug home with her in a bottle connected to her picc line for two days, then goes back in and has it disconnected. She is very sensitive to the cold the two days following, and a little off her food. Then she has a couple of bad days on the 3rd and 4th day. Just really tired, a bit of it, slightly nauseas and no appetite. But then she comes pretty good, and has a good week before she goes back in again.
Any more questions you have, please ask!
Haylez

Mbraindawg
Posts: 1
Joined: Jun 2010

My mom just had the whipple procedure on May 25th to remove a 3cm tumor on the head of her pancreas. She has recovered well from the surgery, except she cannot stop vomiting. She is nausious all the time and cannot keep any food down. She throws up bile. She was released two days ago, but had to be readmitted due to dehydration. She is gettin fed through j tube going into her small intestine. And has a drain gtube coming from her stomach. The dr does not know why her stomach is not moving food through it. They say it is still in paresis. Or paralyzed, but it has almostbeen three weeks. Has anyone else had this happen? I am worried she won't ever be able to eat. Thank you.

Haylez
Posts: 6
Joined: Mar 2010

My Mum had this, not quite as severely as your mums sounds though, and she got through it. It lasted probably a week, and she had to go back on the drip. same thing, her stomach wasnt emptying as it was still paralysed. She just had to take another step back, and be careful of what she ate, and how quickly she ate it. They also gave her maxalon, which is a drug that helps empty the stomach. That helped heaps, but mainly, it was just time. The stomach needed time to get working again!
How is she going now?

lisasmith
Posts: 2
Joined: Jul 2010

Anyone have duodenal cancer after living with multiple myeloma cancer?
Anyone have a whipple without a drainage tube put in?
My husband had the whipple for duodenal cancer and 8 days later surgery to put in a drainage tube. I believe they have discharged him from the hospital too early and he has lost so much weight.

simkor
Posts: 17
Joined: Dec 2009

Hi,
I hope your husband is doing ok & hasnt had anymore problems.

My husband Simon had two drainage tubes & a T tube in his bile duct. They where put in when they did the whipples. They also had to insert a third drainage tube in after three weeks as he had a pool of fluid which caused a infection.

Wishing you all the best

simkor
Posts: 17
Joined: Dec 2009

Hi Haylez,

Hope your mum is doing well. My husband Simon(33yrs) has just finished six months of chemo. He had Folfox 3 modified. Simon also had a picc line. He went every second week. One hour at the hospital then three days at home. He found that every second treatment would be worst then the one before. Simon got the the side effects throwing up, nausea, dirrohea, tired, no appetite, mouth sores that spread to his throat. It was hard as we have two little girls(6 &2yrs) having to telling them. Then to ask them to try to stay quiet so daddy could rest but its all of over. Now to found our new normal life & cross fingers it doesnt come back.

Take care

simkor
Posts: 17
Joined: Dec 2009

We also have two very beautiful girls aged 6 & 2yrs. Which makes this so much harder

michaelcollins
Posts: 4
Joined: Sep 2010

I had the whipple in March 2008. the things i can say or that you must have it done at one of the best places if it is at all possible, M. D. Anderson is no 1, johns Hopkins, mayo clinic boston general and ucla are the top 5 and they give you a 15% better chance of living and recovery. Next the surgeon has to have done a lot of the procedures and be good at it.

no matter how much pain u are in from the first get up and walk, take the pain med if you have to but walk as muchas you can every day day and night every time you wake up walk.

last take all the vitamins, herbs and supplements you can

Jobeck
Posts: 1
Joined: Oct 2010

I am wondering if one of the members that was diagnosed w/ the duodenal tumor could tell me how it presented itself, what diagnostic tools were used, and how it was determined to be malignant. I need an early stages run down so I know what to be asking and requesting to be done. I have a duodenal tumor that they are trying to determine the best way to biopsy as well as to see if it is obstructing anything. It was discovered last week, initial biopsy inconclusive, tissue from endoscopy not deep enough. Those results came back Monday and then had the CT this morning. I am following up Friday and would feel better if I knew questions to be asking. thx.

simkor
Posts: 17
Joined: Dec 2009

Hi,

My husband Simon(33) was in a lot of pain, couldnt keep any food down. We had three Drs tell nothing was wrong but we where lucky our youngest daughters gp seen him. She did lots of blood work that came back with nothing. With this type of tumour it does show in the blood works. Then he had a endoscopy & biopsy which is how we found out. He hen had a ct scan but that did show how much it had spread.

If your not happy with the results from your scan. I would ask them to do endoscopy again so they can really make sure. If they dont want to go to a different Dr. Please be strong dont let them fob you off. If you do have it. They more then likely do the whipples op. Find out how many your surgeon has done it is a major op. You want the best Dr.

I hope it all comes back all clear for you. My thoughts are with you. Please let me know how you go.
Korina

Oneshot
Posts: 62
Joined: Jul 2009

Korina,

I was just wondering how Simon was doing? Tell him I'm keeping him and you in my prayers and wish you both the best!

I just had a scan today and will find out on the 8'th if all is well. I feel it will be. If so it will be a happy 51'st birthday this month!

Oneshot

simkor
Posts: 17
Joined: Dec 2009

Hi Oneshot,

Simon is doing ok. He finished chemo 2& half months ago. He did himself proud the way he handled it. His last scan was so so. He has enlarged nodes which have decreased by 3mm. I know thats good but the drs dont know if they are enlarged from all the surgeries and are healing or there is cancer & the chemo made the decrease. They told us to come back in 6mths we said no thats to long to wait. So we have a 3mth scan in 2wks. Must say as it gets closer I get more nervous. I guess thats normal.

I hope your results come back all. Im sure they will. Happy birthday have a wonderful day. Please let me know how your results are. Will let you know how simons are.

Take care thinking of you Korina

Oneshot
Posts: 62
Joined: Jul 2009

Korina,
I can't recall what actually caused my lymph nodes to become enlarged. They did go down or back to normal over a period of time. Wish I could be a little more informative for you and Simon. I will see my oncologist on the 8'th and I will ask him to refresh my memory on it. Then I will get back with you on it.

You were right in not waiting for six months! You have to stay on top of this beast.

As far as getting nervous the closer it gets. Unfortunately that's a normal feeling! My wife and I both keep a very positive attitude about my situation but when the scan dates come up. I get the sense that the "Sword of Damocles" is hanging over my head. I make a little joke about that feeling to myself by saying "I am part of a fraternity that nobody wants to join!" But, my guess is all of us who battle cancer get nervous every time the mention of a scan comes up. I'm sure it's the same for those who care for us also!

Take Care and GOD BLESS!
Oneshot

Oneshot
Posts: 62
Joined: Jul 2009

Korina,

I asked my oncologist about what causes the lymph nodes to get enlarged? He said it could be caused by something as small as a mosquito bite that could cause them to think there is an infection in the body and become enlarged. And yes! Chemo and/or radiation as well as a surgery can cause them to become enlarged also! That being said, if they are getting smaller. Like you stated Simon's are. It is a good thing! Hope that eases your mind some.

My scan and test all came back good. I was hoping this would mean I would only have to get scanned once a year. But, I was just a little ahead of schedule in my own mind. I have one more scan in six months. Then, if it comes back looking good. I will scan once a year after that!

Thanks for the birthday wishes! I plan to enjoy that day this coming weekend with my family and friends.

Take Care and GOD BLESS!
Oneshot

simkor
Posts: 17
Joined: Dec 2009

Hi Oneshot,

Im so happy your scan came back good. Its really wonderful. Thank you for asking your Dr about the enlarged nodes. Simon has his scan next week Im sure it will be good news & they have decreased some more. Will let you know how we go.

Take care Korina

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