Surviving Duodenal Cancer

robinjb · November 2012

Surviving duodenal cancer
Hello:

I am new to this site. I have Duodenal adenocarcinoma. I had a full Whipple surgery 10 weeks ago to remove a 9 cm tumor. The good news is that I am now Stage 1, with clear margins and lymph node involvement (36 nodes tested).

It has been a very difficult recovery - I had stomach paralysis for 8 wks, and just got off of IV feeding (TPN) a week ago. My surgeon, head of Surgical Oncology at a large teaching hospital, confirmed what I had read on line: stomach paralysis occurs in about25 to 30 percent of cases, sometimes related to a "fistula" leak in sutures from reattaching pancreas to new section of intestines - which I also had 15% of patients.

I trust my surgeon a lot. He took an aggressive surgical approach for my fairly large tumor. Blessedly, despite the tumor size. There is no evidence of metastasis . With stage 1, the cancer center' tumor board has not recommend any following. The oncologist said that chemo statistically only improved five year survival rates by 5%.

Since I battled nausea and vomited more times than I want to think abt over the last. 2 months, and I am working with a naturopath on rebuilding my immune system, I am declining chemo. This would surely be a different thought process if, like many of you, I was a later stage, and we each need to make these decisions ourselves . My concern is that the oncologist is basing her info on colon cancer, saying thee is too little research on duodenal cancer. Have others worked with on oncologists with more direct experience with duodenal cancer?

Also, I a waiting results of genetic testing. I am praying the results come back OK - for myself - increases risk of other cancers, but also for my two boys. Any experience with this?

Thanks for any feedback. I don't want to scare folks - I would do it again if I had to. All of the studies online that I have read show hugely better survival rates through full or partial Whipples. So good luck and my. Prayers to anyone having a Whipple. Like everyone says, walk as soon as you can, take it one day at a time.

Robin

Trew1511 · February 2013

Sister is Duodenum Cancer Survivor

I keep reading on here about a "whipple"....is this the port that my sister has for her chemo? Never give up or stop pushing your doctors. I know that's easier said than done, and I'm not trying to be arrogent. My sister had duodenum cancer that spread to her liver, pancreas and wrapped around her main blood supply to her insides in September of 2001. She was 32 at the time. She didn't have any sympotoms until she started turning yellow. A doctor mistreated her for anemia, until I got my mother to take her to someone else. She is doing well now; she still gets chemo once every two weeks. Her Doctor (Dr. Katz) is amazing. She had a radical surgery they were not sure she'd survive, where they removed all but the main "working part" of the pancreas and removed her duodenum and I believe a piece of her liver. Then chemo for many months until whittled down to once every 2 weeks. It took a long time for her to heal, but the last 12 years with her are worth it. I wish you all well.

Niteowl049 · March 2013

Chemotherapy Stopped At Halfway Mark

My oncologist ended my chemotherapy for my Stage III duodenal cancer two days ago, after 91 days had been completed of the 24 week program.

My daughter is concerned that I don't have a CSCAN scheduled till May 21 and that the cancer may return in the two and a half months till then.

The oncologist had tried xyloplatin and irinotecan chemo IV's but the xyloplatin was causing neuropathy and the irinotecan caused extreme diarrhea. He said the chemo IV's were doing more harm than good and giving me a bad quality of life.

I know duodenal cancer can return in a short time. I have heard of duodenal cancer patients having clear scans in October and December of last year, only to have the cancer return in March of this year, so am very concerned about the two month wait for a CSCAN.

Just wish I could reassure my daughter that the cancer won't return, but have no way way of knowing without a CSCAN.

lfitz10 · May 2013

Surviving Stage IV

Hi -

I'm a 49 year old vegetarian female just diagnosed 4 weeks ago with Stage IV Small Bowel (duodenal) cancer. I'm still pretty stunned as the last 6 months the doctors were treating me as having gastroparesis. :-(

If anyone can share their experience and treatment that would be great.

The tumor was 2.2 cm causing obstruction. The path report says there are also deposits in the omentum, but no lymph node involvement, which is why I guess the staging is a IV. I see the oncololgist tomorrow and am scheduled for my PET Scan next week. Needless to say I'm pretty nervous...please help!

Thanks!

grape54 · June 2013

I'm here with you!

Hi,

I'm 44 and was diagnosed back in Feb with Stage 2 and had a full whipple. I'm currently going thru Chemo and Radiation, I did 2 rounds of chemo on FU5 and have now been put on a chemo pill while I do 28 days of radiation. I will resume Chemo at the end of this month (june) for 10 more cycles of the FU5.

I'm not going to lie it sucks and you will have your good days and your bad days but you will get through it!!!. I am recieving treament at the VA Hospital in West Los Angeles. My Dr's are all great and also work at UCLA Med center and Cedar Saini so they are pretty good at what they do. But from what I can gather there is not a lot of data on the Cancer we have so they treat it as "Colon Cancer" which I'm sure you will hear.

There will be a lot of information coming at you in the months to come, I have taken to recording all my Dr visits on a voice recorder and listening to them 2 or 3 times and writing down questions and asking later. Its a lot of information and sometime I find myself thinking about what they are telling me and they have moved on. Also Be very vocal with your doctors and I'm sure they will work with you and know what meds to give you.

Are you going t have Surgery? I Can answer any questions you have based on what has happened to me so far...I've been pretty lucky that my side effects have been hair thinning and upset stomach, I hear some have it worse. Keep your friends and family in the loop, it helps to talk about it. I also had Genetics testing done which depending on your ins. may or may not be covered but can be helpful.

artmel · January 2014

Hi

Hi how are you today?

paulleon370 · January 2014

hi

I have been deciding on a institutional move and this has helped me with one aspect.

[Content removed by site administrator.]

Barely · November 2015

Hello
Your messages gave me

Hello

Your messages gave me hope. Thank you

My mom has been diagnosed with stage 4 duodenal cancer that reached her liver and pancreas 5 months ago. It feels like it's been forever

Barely · November 2015

Hello. Thanks for the hope

Hello

Your messages gave me hope. Thank you

My mom has been diagnosed with stage 4 duodenal cancer that reached her liver and pancreas 5 months ago. It feels like it's been forever

Claudia113 · February 2017

Duodenal Adenocarcenoma

I was diagnosed In April 2016. After 26 weeks of chemo, I successfully underwent Whipple surgery and the tumor (8cm) was removed along with 9 positive lymph nodes. PET scan shows no metastasized areas. Follow up treatment seems to be a quandary to my oncologist. There is no specific area to be radiated. I have also been told that there is no standard protocol for this type of cancer. I am 59 years old. Appreciate any and all input.

Thank you,

Claudia

Warrior820 · March 2017

Duodenal cancer

I just wanted to leave a little hope here... I am a survivor of stage 4 duodenal cancer... never had surgery either tumor gone. I am in remission have not had any medical intervention since august 2016. Anybody want to reach out to me. I will be more than happy to talk to them

Daddysgirl33F · April 2017

More info please

Hello-

I would like more info please. I have a family member who is currently receiving chemo treatments.

DaughterOfMother · April 2017

Can you talk about what treatment was successful for you? My mom was diagnosed with stage 4 duodenal cancer in July 2016 at age 56. At the time she was diagnosed, the tumor was already too large for her to be a candidate for whipple surgery. She has done FULFOX, FULFURI, and TAXOL without any positive effect. The main tumor continues to grow and the cancer continues to spread to other organs. She is now enrolled in a clinical trial using immunotherapy, and now we wait... Any helpful information you can provide would be much appreciated.

wendelinus · April 2017

treatment info

Please, I like to hear about the treatments you have received. Husban 39 years old is diagnosed with either duonal cancer stage 4 or pancreatic cancer stage 4. With mets in liver.

wendelinus · May 2017

Treatment duodenal cancer

hello warrior820

can you please tell us what kind of treatment you had as my husband is 39 and diagnosed with either duodenal cancer of pancreatic cancer stage 4. he is now in huis sixth cycle of folfirinox. First scan result was promising with shrunkage of all tumors in liver and duodenum. Now we are hopefull as we were told only to have a few months.

so please share your story with us

kind regards

wendy

shannond · May 2017

Would love more info! I'm

Would love more info! I'm very happy to hear you news. I wish you continued good health! My mom is not eligible for the whipple because of the area of her tumor. What type of interventions have you done? Thank you in advance. Your story does offer hope.

DadsPeanut · June 2017

Interested in hearing more

Hello, Please provide the details and treatment you used to beat this cancer and how it had manifested for you. My Father is currently battling Stage VI Duodenal Cancer and I would be interested to know what treaments worked for you and where you were treated.

Thank you!

cat57 · July 2017

Scared!!!!

I am 59 yrs old, just diagnosed on Friday (today is Monday). My "staging" is to be done most likely on Wednesday; the Oncology specialist told me she already knows it is late stage. I have apparently had the mass since 2004, but was never told!!!! The specialist told me I "hit the jackpot" as far as best cancers to survive from w/o recurrance, but I am also not at all naive, and everyones rushed and rapid responses within an hour of seeing the mass on my CT scan certainly did little to ease my growing fear. So......I am looking for any information, experiences, suggestions, etc. PLease let me know!!! Thanks

Michelle28 · July 2017

Hang in there...

Hello All, everyone's experience with this type of cancer seems to be different, but my mom (65 years old) found out in December of 2016 after a long year of feeling "stomach flu" symptons and rapid weight loss. We found out in December through an endoscopy and biopsy, and in the first weeks of January she was already having a full Whipple surgery. The duodenum was where the tumor was located, but she also had it in some surrounding lymph nodes and part of her colon. Thankfully, the pancreas was not involved. Her recovery from the surgery went well--though difficult at first for obvious reasons. She is now on her second to last session of chemotherapy and she is doing well. Has some good days, and some bad in terms of stamina, etc., but overall, surviving. I do not know what the full outcome of this process will be, since we still have to wait until the chemo is finished to know if the cancer is fully gone. But, what I CAN tell you is that a good doctor is very important. She was treated at the UM Sylvester Cancer Institute in Miami, Florida and her surgeon was Dr. Vikas Dudeja. I can tell you from the bottom of my heart that I thank God every day for this man's presence in our world. He is an amazing doctor and an amazing individual in general. My mother's care has been like nothing I've ever seen, and I have seen a thing or two since I have several relatives that have had to go through the horror of cancer. Though nothing with my mom is yet certain, I am hopeful that she will make it through. If you are able to reach out to this hospital, I would strongly recommend it. It's a long battle ahead, but always keep in mind that science has come a long way in recent years, so there's a lot of room for hope. I wish you, and everyone here nothing but the best. Good luck and stay strong. The power of the mind is infinite.

fsr · July 2017

Hello cat57, I'm 68 and I've been where your at and have a little bit of an idea of what your going through. By now you should have a better idea of what's going on...you may (if required) have already had surgery. I went in to the hospital for a blockage on Feb 12, 2016 and by Feb 19 they had performed a partial whipple on me. I look back and it was so fast it was kind of a blurr. Started chemo in April and ended it in Sep 2016. A major problem for me is that the cancer had already broken through the wall of the intestine and was laying on my aorta. The surgeon did his best to get me cleaned up when he was rebuilding me but the stuff has come back as a small mass in between (of all places) the two major arteries so, after a half year off, I'm going to start over on the chemo. I have a strong reliance in what the word of God says and I believe that has helped me to accept this as an adventure and not to be overly stressed out. So far (just a heads up) the worst discomfort for me has been the removal of the drain tubes after the surgery...lol, but that only lasted for less than a minute. The doctor swore to me that it would not hurt him as he walked out the door and his assistant removed the drain tubes...lol. I know this is a stressful time for you and I am hoping you can relax and know that we live in a time when the doctors, nurses, and procedures are the best in the world. Stay strong, always drink plenty of water and I hope 10 years from now we will be able to converse with each other about these experiences. Regards

Surviving Duodenal Cancer

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