Surviving Duodenal Cancer

MichelleB83845 said:

Duodenal Cancer
Hello...

I am fairly new to the battle of duodenal cancer. I am 32 and had the whipple done on March 15th. I had a 4.5 cm tumor with 1 of 8 lymph nodes involved. Mine is at stage 3.

I am about to start radiation and chemo soon (been appealing with the insurance co for a less damaging radiation therapy with no luck). Did you do any radiation? If so was it the 3 dimensional or IMRT? My oncologist said that the 3-D will cause quite a bit of damage to my right kidney and I am a bit worried. The chemo doc said that I am by far his youngist patient with this kind of cancer (almost 20 years), I dont know if I find that comforting or not!! I have been told that I will do radiation for 28 days (5 days a week) then 6 months of chemo. I will also be taking a chemo pill during radiation.

How do they test you to check the cancer? I have been told there is no way of actually checking it so I am doing "insurance" therapy to get any free floating cancer cells that may or may not be there. I have a hard time wraping my head around the fact that I actually feel really good only to be making myself sick for the unknown.

I hope to hear back from you.

Michelle

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

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 said:

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!

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. 

 

carriegubr said:

Michelle,
I am also 32 (33rd
Michelle,

I am also 32 (33rd birthday is in 3 weeks!) and I was diganosed with duodenal cancer in August of last year. I had a Whipple just a few weeks later, also in August. I also had one lymph node positive, out of 20 resected. I started radiation in late September and had 31 treatments (6 weeks and 1 day) and took Xeloda during radiation. In all honesty, this was the worst of it for me. I was really nauseated and had no appetite with the Xeloda and I lost about 20 pounds. Radiation finished up in early November and I was able to go back to work. I started chemo - also FOLFOX - in January and finished 8 cycles (4 months). My follow up CAT scan last month was clean, and am now cancer free!

I won't lie, it sucks. All of it sucks. The chemo wasn't really so bad except having the pump for 2 days is kind of a pain. Once radiation was over, I really didn't have much trouble and I was able to continue working all the way through the chemo.

I hope that all goes well for you in your treatment.

I wish I had found this website 10 months ago.

Carrie

hi

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

 

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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 

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

Warrior820 said:

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

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.

Warrior820 said:

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

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

Warrior820 said:

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

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!

DadsPeanut said:

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!

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.