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Surviving Duodenal Cancer

FightingDuodenal
Posts: 2
Joined: Jun 2010

Hi. I'm a 54 yr old woman who was diagnosed with Stage IV (spread to liver and lungs) Duodenal Adenocarcinoma 1 year ago. I had a "partial" whipple in June 2009 and have been in chemotherapy since last July. My first six weeks of chemo were "alternative" treatments in a holistic hospital (I was too ill to have traditional chemo). Since Aug 2009, I've received chemo every two weeks--5 hrs at the hospital and then a take home bag plugged into my chest port for 2 more days. A LOT of chemo and no end in sight. I've had some major problems with side-effects, drug reactions, etc., not to mention losing over 60#, but as of now my cancer seems to be fairly stable. The main mass in the duodenum has remained the same size, ditto for the nodes in my lungs. The cancer in my liver has even shrunk a bit! :-) Best I can hope for I suppose. I've never met anyone (online or realtime) with duodenal cancer. My oncologist has previously treated duodenal cancer patients but nobody currently. I'd love to talk with anyone who has this cancer. Or, even the survivors of patients who lived a year or more beyond their initial diagnosis. In the meantime, if anyone has been recently diagnosed and has questions please don't hesitate to ask. I know how overwhelming it is to cope with a cancer diagnosis...especially one as rare as duodenal.

MichelleB83845
Posts: 13
Joined: Apr 2010

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

FightingDuodenal
Posts: 2
Joined: Jun 2010

Thanks for the reply Michelle. I can see from your post that things are rather confusing. Have you had a 2nd opinion (preferably from a good cancer institute)? One that could help you with your insurance fight?

My cancer is a stage IV. It's spread beyond the duodenum to the liver and my lungs. They won't use radiation because there is just too much cancer to make it beneficial.

The way they "check" my cancer is they use CT scans. I've also heard of them using PET scans as well but mine shows up well on the CT scans. They can track how much it's spread (or shrunk). Usually every 3 months. Thankfully, my chemo seems to be holding the cancer as there hasn't been any growth in over 6 months! :-)

I haven't heard anything about kidney damage from my chemo. Originally oxilaplatin,5FU and Leucovorin called FULFOX regime. I became deathly allergic to the oxilaplatin so they changed it to Irinotecan called FULFURI regime. I'm sure there must be some damage to all organs considering how many treatments I've had in the past 10 months. But, nothing specifically targeting my kidneys.

I completely understand your reluctance to make yourself sick when you don't feel like you are now. I've struggled with that for quite a while. Since I've lost 62# in 6 months people are constantly telling me how good I look. In fact, the oncologist told me the other day that if he didn't know how sick I was he would never be able to tell by looking at me. I look too healthy. Obviously, looks can be very deceiving.

You're fortunate that they found your cancer early enough to do radiation and chemo. That and your young age should serve you well as you move forward to fight this horrific disease. Good luck!

Cindy

MichelleB83845
Posts: 13
Joined: Apr 2010

I thought about talking to someone else but I know that my oncologist is one of the best in the area, and for a second opinion I would have to travel to Seattle, Wa which is about 8 hours away. My insurance is pretty set on their policy that treatment is investigational and they will not cover it. I decided instead of fighting them and giving my body the chance to become infected with more cancer, I will do the treatments that are covered and pray for the best. My blood work is in normal range so that is good, but doesnt really say if I still have cancer or not.

Are you taking any supplements? I am taking pro-biotics, and drinking paur d' arco tea and a couple other things. I dont know if they help or not but they cant hurt and will help with flushing the drugs out. I also drink fresh carrot/apple juice almost daily. Some of the things I've read said this will help.

Best wishes for you.

Michelle

1955topresent
Posts: 6
Joined: Jun 2012

Hi From reading your comment I feel we are in the same boat-not able to have surgery-how are you doing now?

carriegubr
Posts: 1
Joined: Jun 2010

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

MichelleB83845
Posts: 13
Joined: Apr 2010

Thankyou for writing. It is nice to know that there is someone who has been through it and has had the same treatment that I am getting. I am on my 8th treatment and so far everything is ok. I am tired and get the yucks for a bit after I take the xeloda but am able to eat. I drive 2 hours (100 miles) each way just to get radiation for 15 minutes and I think that wears me out the most. Did you get 3-D or the IMRT?
I dont know yet what chemo my doc will use. He is waiting on the results of the genetic testing. I know it will be Folfox or Folfuri(sp?). I thought it was 6 months after radiation but he said that it will be more like 5 months and I dont even know how many times I will be infused. Guess I better ask next time huh?
How often do you have a CAT scan?

Sounds like you are a positive person, and I truly believe that is alot of the battle. I wish you all the best and hope to hear from you again.

Michelle

gteets
Posts: 1
Joined: May 2011

My dad, now 63, was diagnaosed with duodenal cancer 5 years ago and had a Whipple done which was followed by 8 weeks of chemo and radiation. 2 months ago he was diagnosed with diabetes due to the lower output of insulin created by his surgically altered anatomy. He has spent the last 5 years learning what to eat and when to eat in order to limit the amount of sickness the re-designed gastric system produces. He returned to his retirement Job 7 moths after the procedure, he drives a bus at Disney World, but has had to ensure his work schedule match his sickness schedule. We thank God that he is wiht us everyday and we do our best to share his burden. With such limited information and resoureces available for this rare type of cancer every step was a difficult step in the dark.

Like I said, he is a 5 year survivor and is still cancer free; thank you, God and the medical staff who have cared for him.

I am currently creating a non-profit organization dedicated, in the shrot term, to awarenes and education regarding duodenal cancer. We are far from rich and the organization will start slow, but friends and family have agreed to donate time (and when possible) money to get this up and running. I would love to get any information you have relating to your experience and your doctors and the treatments any survivor has recieved. A VER VERY long term goal is to actually raise enough awareness and money to help fund research into treatments of this cancer.

I wish you all well and I will keep you all posted as to the progress of the organization.

Sincerely,
G. T. Teets

cowgirl12
Posts: 1
Joined: May 2011

Hello,

I'm 64 & have always been very healthy, but just had a large early-stage tumor removed from ampullary area of colon using ERCP. I think that's the same general area as duodenum. I still have ampullary cancer & will have the Whipple procedure in a few weeks.

I am extremely interested in how to find the best doctors and facilities. I'm in a lot of pain from the resection.

Thank you all for being there.

Sandy

nsd60
Posts: 4
Joined: Jun 2011

My husband age 48 was diagnosed with stage 3 duedenal cancer. He had the whipple on April 28th 2011 and will start Chemo (oxiplatin and xeloda) on Monday. Any advice? Any survivors of stage 3 duedenal cancer?

mfloro
Posts: 1
Joined: Sep 2009

i was diagnosed in 2009 and had a subtotal gastrectomy followed by chemo and radiation. I have been in remission but have started to have issues with heartburn, fatigue, gastric reflux, nausea. Has your husband had any similar issues?

nsd60
Posts: 4
Joined: Jun 2011

My husband is 7 weeks out from his whipple -he had stage 3 duedenal cancer and is 48 years old. he will have 6 months of chemo and one month radiation. What stage cancer was your father?

MichelleB83845
Posts: 13
Joined: Apr 2010

Thankyou for the encouragement!! It is nice to know that this cancer can be beat!!! Also a BIG thankyou for starting an awareness to this cancer. It is so hard to find any info on, and the things you read online and what you hear from the staff at the dr.'s office are two different things. I actually had a nutritionist tell me that sugar had nothing to do with cancer!! Really??? Not what I have read. Good luck to you on your goals for awareness!!!

DaughterForDad
Posts: 5
Joined: Jul 2011

Your HEADLINE has reinforced my hope for my own Dad's recovery. I'm so thrilled your Dad's thriving.

Would you PLEASE let us know who your Dad's oncologist was, and any info. you can provide regarding treatment specifics?

My Dad is 69, was diagnosed 3 months ago with advanced duodenal cancer and is searching for another line of treatment with an oncologist who will be more aggressive in fighting the disease with him.

You can reply here (I'm new to this forum so I don't know whether there is email interaction), or you can email me directly: mountaingirl100@aol.com

Thank you, and thank GOD for your Dad's good health.
Sincerely,
My Dad's Daughter
http://csn.cancer.org/node/193733#comment-1095707 - my post where you can learn more about my Dad's case.

goingtobeatthis
Posts: 3
Joined: Sep 2011

40 year old husband diagnosed with stage 3 6.5cm duodenal cancer. Margins clear after Whipple procedure 5 weeks ago. 2 of 21 lymph nodes positive.

G.T. TEETS... please let me know what chemo and radiation your father did. Our oncologist recommended FOLFOX and the Radiation oncologist thought radiation would be to risky to his other organs.

Any info would be VERY appreciated

You can email me directly at danksm@hotmail.com

I'm sooo happy your father is doing well. Hoping to have the same result for my husband.

Thank You,
M

artis54
Posts: 7
Joined: Jun 2011

I have stage iv duodenal cancer and live in orlando. Can you please tell me who yor dads onocologist is. I am not a candidate for the whipple.

carl17's picture
carl17
Posts: 15
Joined: Jul 2012

Hi: I have recently been diagnosed with small bowel cancer - see the post from me below (the lion for the full story).

I am wondering about the whipple procedure - was there spread to the pancreas or was this a preventitive step.

How is your dad now? There seem to be so few success stories with this tyoe of cancer.

take care

carl

the lion

carl17's picture
carl17
Posts: 15
Joined: Jul 2012

Hi: I have recently been diagnosed with small bowel cancer - see the post from me below (the lion for the full story).

I am wondering about the whipple procedure - was there spread to the pancreas or was this a preventitive step.

How is your dad now? There seem to be so few success stories with this tyoe of cancer.

take care

carl

the lion

DaughterForDad
Posts: 5
Joined: Jul 2011

Carrie,
I can't begin to imagine the ordeal you've personally gone through on your road to recovery, but I am SO HAPPY to hear you BEAT this. Thank God.

My Dad's recently been diagnosed with duodenal cancer, and from the start, a very prominent oncologist told my Dad his goal should be "containment," not remission. Because it is rare and his oncologist wasn't entirely optimistic following discouraging results of his first chemo treatment, we are trying to help Dad get the immediate care he needs from a new oncologist who's had success with duodenal cancer and will be a POSITIVE influence on his recovery.

Can you please provide any info. you're willing to share about whom you sought treatment from, what the regimen was (I'm jotting down FOLFOX)?

Thank you so much. You can reply here (so others can benefit) or directly to me if you prefer: mountaingirl100@aol.com.

You can read more about my Dad's situation here:
http://csn.cancer.org/node/193733#comment-1095707

goingtobeatthis
Posts: 3
Joined: Sep 2011

Carrie, i'm so happy for you and it's nice to finally hear that someone BEAT this terrible disease.

My husband had the whipple 5 weeks ago and a 6.5 cm tumor was removed,"margins were clear". He had 2 of 21 lymph nodes test positive. His radiation oncologist said the risks outweighed the benefits so he did not recommend radiation due to damaging his good organs in the process. Chemo oncologist is starting the 48hr, every other week for 6 mos FOLFOX treatment next week.

I'm wondering if any of your organs have been damaged by the radiation and what your dr. said regarding this. Any other info would be wonderful.

Thank you so much,

Marianne
danksm@hotmail.com

carl17's picture
carl17
Posts: 15
Joined: Jul 2012

I am 63 year old male living in Toronto Canada.

I was diagnosed in May 2012. I had the first warning sign when I got deep vein thrombosis (DVT) in January - this turned into a pulmonary embollisim. My low hemaglobin sent them looking for Cancer and I had an upper GI and Colonoscopy both of which were clear. They considered an abdominal scan but didn't do it ("In my 40 years I have only had one that was positive" said the doctor. Actually he has had at least two one he got and me he missed. In May I was back in the hospital after a second set of blood clots and a second pullomanary embollisim. My body was telling them something.

I had a resection of the small bowel (is that what everyone is calling a whoopie?) They removed a 6.5 cm tumour which was maglnant. It is termed an aggressive variant of macropapilliary adenocarcenoma in the small bowel. (4th section of the dudodema). The margins were clear in the resection but the circumference of the tumour ill defined. I am in stage 3a - Spread to one lymph node.

I had the surgery June 1 and after some post surgery complications (swelling where you don't want to swell . During surgery only 3 lymph nodes were taken out. The surgeon said the others were too close to viens that feed the small intestine with blood and an error could be fatal.

I am surprised that in the US it seems that removal of lymph nodes seemed more prevalent. Certianly I would have preferred that. I am going for a second opinion surgical consult to see if more can be removed as what I read about the efficay of Folfox is not encouraging. One study I saw said it was 'sucessful' in 13% of cases - success being defined as prolonging expectancy by 12-14 months.

I also find it disconcertuing that there seems to be no way of knowing whether it is actualling killing the microscopic cells.

I started my Folfox chem on Thursday and wore the chemo bag fannie pack for two days which is due to be disconnected momentarily.
I have had no side effects yet but have been told 5-7 days from the initial chemo is the time they may materialize.

The second difference I see from a lot of the posts is that radiation is used in the US but not here - too much danger of hitting and damaging other organs.

Please stay in touch.

carl

paulleon370
Posts: 1
Joined: Jan 2014

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

 

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GuidoMamma
Posts: 1
Joined: Jul 2012

Last month My Dad, 49, was diagnosed with stage four adenocarcinoma duodenum cancer. He was Medflighted to Stanford vomiting blood, a tumor had breached the wall of the artery that feeds the lower intention causing the bleeding. He received eight pints of blood in one evening. The doctors believe that they will never be able to operate because of the position of the tumor; surgery is to dangerous. At this point he has gone through one round of chemotherapy. I have read all the posts on this page and it appears that lack of appetite is part of this disease; my Father has lost 65 pounds in a month. Does anyone have any ideas or tips on how to get him to eat? What might be easier on his stomach? Any way to stop him loosing weight? My family is afraid that if he looses too much more weight he might not be eligible for chemo anymore. Any suggestions would be a great help. Between his last doctors appointment 10 days ago to now he has lost 15 pounds!

Alijojolambo
Posts: 1
Joined: Oct 2012

So sorry to hear about your dad. With all of the transfusions, your dad's case sounds somewhat like my FIL who was also at Stanford...perhaps we passed each other in the hall!

What helped him keep weight on was Muscle Milk. He started on Ensure, but the MM is actually more caloric. Look for any weight gainers that he can tolerate...try your local vitamin/nutrition shop.

Best of luck with your dad. We lost our dear Grampa John last month, but he was significantly older than your dad (79) and had other complications.

robinjb
Posts: 2
Joined: Aug 2012

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

artis54
Posts: 7
Joined: Jun 2011

I was recently diagnosed with stage iv duodenal cancer. I had a bowel obstruction that turned out to be a tumor. When they went in to remove the remainder of the tumor they found that I had thousands of implants throughout my stomach. I am now waiting to start chemo and have the HIPEC procedure done. Please any feed back on your experience would be helpful.

Regards

DaughterForDad
Posts: 5
Joined: Jul 2011

Hello, Artis:

I hope you've had your treatment and this note finds you looking forward to recovery.

We, too are hoping to find an oncologist who feels my Dad is a candidate for the procedure. Dad (he just turned 69) was diagnosed with duodenal cancer (with some lesions on the liver and in the region), and his first round of chemo didn't seem to help toward his recovery.

PLEASE do not be discouraged - even my Dad has known others who've battled cancer for whom the first line of treatment doesn't yield wanted results -- and they're living their lives. Being positive, eating well, and having a good support system works WONDERS with treatment!

Please see my comment to anther poster: http://csn.cancer.org/node/193733#comment-1095707
I'm hoping you'll share who your Oncologist/HIPEC surgeon is, and what your treatment regimen is and how your experience has been. We are urgently trying to find the best option to give Dad back his strength and his health.

I would so appreciate your feedback - as soon as possible. You can respond here (so others can benefit), or to me directly: mountaingirl100@aol.com

Thank you, and get well soon.

DaughterForDad
Posts: 5
Joined: Jul 2011

First of all, thank you for reaching out and for your encouraging feedback regarding your prognosis. I'm thrilled to hear your cancer is stable. I can imagine how challenging this past year has been for you, both physically and emotionally.

My Dad was diagnosed with primary Duodenal cancer with metastatic lesions on the liver at the end of April, following a polyp remove that initially was declared benign. It was only during a subsequently scheduled whipple procedure that surgeons discovered the malignancies, and opted not to proceed with the whipple, nor remove the primary tumor. He needed to rebuild some strength in order to undergo recommended Chemo treatments, which I believe he began several weeks later, in June.

During this treatment, another blockage was discovered (I'm not sure where), and two unproductive endoscopy procedures followed. His oncologist at a VERY prominent Cancer Hopsital recommended a second-line treatment, but decided against administering it to him upon his arrival for it, because she felt he hadn't yet built up enough strength back from the previous two procedures.

She also added he should "start thinking about his quality of life" options. Understandably, he felt "abandoned" by his doctor.

He is no longer a patient with that oncologist.

Now, my Dad is a fighter. He has a will more powerful than anyone I've known on the planet, and though his cancer is at times VERY taxing both physically and emotionally, he is RESOLVED to LIVE. Just because Duodenal cancer is rare, doesn't mean the battle can't be won. With all of you here, sharing your stories and proof of survival (especially those of you still on the upward mend), I feel empowered to reinforce my Dad's confidence that he CAN, too.

Right now, we have inquiries into a surgeon who has performed several HIPEC procedures.

But I am URGENTLY seeking more treatment options for my Dad. I would SINCERELY APPRECIATE ANY information you could give me regarding your OWN Oncologist, treatment types, and WHERE you've been treated. PLEASE respond at your earliest convenience, either right here (so others can benefit), or to me directly: mountaingirl100@aol.com

Thank you so much, and I wish you continued healing.

Sincerely,
Daughter for Dad

artis54
Posts: 7
Joined: Jun 2011

How is your dad doing. Did he get the HIPEC

sftball2385
Posts: 2
Joined: Aug 2011

Daughter for Dad or Artis,

If you could please share the information on where and the doctor who performs HIPEC's treatment would be greatly appreciated! My mom was diagnosed with duodenal cancer and looking for any & all types of treatment to help.

Thank you!

artis54
Posts: 7
Joined: Jun 2011

DR LEVINE IN WAKE FORREST, NC

sftball2385
Posts: 2
Joined: Aug 2011

Daughter for Dad or Artis,

If you could please share the information on where and the doctor who performs HIPEC's treatment would be greatly appreciated! My mom was diagnosed with duodenal cancer and looking for any & all types of treatment to help.

Thank you!

DaughterForDad
Posts: 5
Joined: Jul 2011

Hello, Sfball2385:

This is the direct link to the HIPEC Surgeon resource site. Dr. KIRAN TURAGA in Wisconsin was the token HIPEC surgeon open to the possibility that it could be performed for duodenal cancer, though not typically intended for that type.

http://www.hipectreatment.com/documents/cancerstreated.php

Keep praying for restored health and do not give up on finding the best treatment for your Mom.

With a heavy heart,
Daughter for Dad.

nsd60
Posts: 4
Joined: Jun 2011

Hi,
I just wanted to know how you are doing? My husband was diagnosed in april 2011 and had a Whipple. He is on his 6th round out of 8 of chemo. Good luck to you!

mhere4u65
Posts: 2
Joined: Nov 2011

Hi Everyone
I am 65 years old. I was diagnosed with duodenal cancer a year ago and survived a whipple procedure. I had already lost about 45 lbs because I was misdiagonosed at first hospital I was in They took out a good part of the duodenum, part of the lower part of my stomack and the head of the pancreas When they first told me I had cancer at the second hospital the first thing I thought of was my family The doctor did not expect me to survive the surgery
I came out of the surgery fine and as my nutrition began to improve so did my recovery
They told my family that I have stage 4 in the duodenum and stage 3 in the head of the pancreas I recently had a CT scan again and they found a tumor on my liver and another larger tumor behind the pancreas My treatment is also complicated by thalesemia and neurofrimotosis I which causes complications with my blood work and possible blockages. I feel like one of the lucky ones The chemo has been stopped because of complications with my blood and my liver. I take each day as blessing and I also have a beautiful family of 3 daughters and 4 grandchildren that fill my life. I have much to thankful for.

concretekenny
Posts: 1
Joined: Dec 2011

Hi all, I am new to this board but I am not new to the battle with cancer. this will be the third time I have faced the battle with cancer I am a survior of colorectal cancer. the first time. was 05 and they removed part of my colon and I was clean for 15 months. the docs went back in and removed the rest of my colon because the cancer had returned. Since that time I have bean good for over 3 years all the time being watched very closely as they think I am one that has Lynch syndrome I think that is what it is called. I hsve a lot of things going thur my head right now. I started getting sick again mid Sept. of this year. Long story short I have been told I have cancer back but this time it is in duodenal and going to have Whipple done on the 28th of Dec. So needless to say I am curious about everything. I am so glad I found this board because from past experience I know how important support is thur all of this. So much about that. here is a little bit about me I am a male 60 years old have a wife, 4 grown daughters, and 6 grandkids. I live in Il. I have drove a concrete truck for the past 35 years (hence my board name) I told my wife this bout is going to retire me. I was going to wait till I was 62. I have been in the Teamster all that time and my pension is in tack, so it is time to turn my keys in, and foucus on family and this battle. Again I am so glad to have found ya'll. Talk to ya'll soon!!!

amorantin
Posts: 1
Joined: Dec 2011

I'm 44 and have had a slightly different path so far but with a good result. Nov. 27, 2010 I went into the ER for pain which ended up being diagnosed as a duodenal ulcer. March 2011, tests showed that I had cancer there. In the next month, it was found to have extended out in front of the pancreas and was wrapped around the artery and vein which prevented surgery. I then started chemo (Folfox) and then had radiation with Zolada. This all ended in late August so as to see the results a month later. By the end of September, the surgeon decided he wanted to do surgery but termed it exploratory as he needed to get a better look to ensure he could do the Whipple Procedure. Surgery was October 27 and lasted 8 hours. I was so thankful and blessed that I woke up and also to find out that the work was done. I was in the hospital for 10 days. It was determined towards the end of that stay that I had a pancreatic leak so I had begun receiving TPN as my sole source of nourishment with no food or drink for 6 weeks. Found out from the surgeon that the margins were good and lymph nodes all negative. I started eating 2 weeks ago and expect to return to work next week. Oncologist suggests a couple of months of additional chemo just in case but said it was up to me - would rather spare me of future thoughts of "I wish I had done that". Would be lower dose of oxylplatin (not sure of spelling) to prevent too much recurrence of the neuropathy and also take Zeloda. I've had all of my cancer care at Georgetown University Hospital in D.C. The oncologist is Dr. Louis Weiner and the surgeon is Lynt Johnson - the Chairman of Surgical Services who specializes in liver and pancreatic surgery.

Kevin

1955topresent
Posts: 6
Joined: Jun 2012

Hi I am a 56 year old woman who was diagnosed in Dec 2011 with Pancreatic stage IV cancer. I later was told I was misdiagnosed and I had duodenal cancer-Unfortunately the tumor had been around for awhile and it would have to been shrunk in order to be a candidate for surgery. So after 25 sessions of chemo and radiation-I was told the tumor had grown and had now spread to my liver. I cannot tell you how devasted this has left me. I agreed to see a doc tomorrow about direct liver therapy. And my onocologist want to do secondarly line chemo for the orginal tumor. My prognosis is not great I just hope to see my son get married maybe in the next 2 years. And I am very frightened about the pain I might have to endure. I am so angry that I could have a tumor growing inside for a few years I was told and never knew it. I am a diabetic so I saw the doctor every 3 months-I did not have symptoms till last summer- some back pain and stomach pain. Than last fall the tumor completely blocked my digestion tract and the vomiting started. I am 55# lighter and am so frightened. Any suggestions out there.

artis54
Posts: 7
Joined: Jun 2011

anyone using folfiri and what are your results and side effects.

wildgoose17
Posts: 1
Joined: Jul 2012

I have recently started on Folfiri on a twice-monthly basis.

I was diagnosed with Stage IV just about a year ago at age 67. Longstanding vague problems with gas and bloating (diagnosed as IBS) and increasing fatigue (no sleep apnea and thyroid function okay with levothtroxine so take Paxil for depression...I wouldn't because I insisted that the depression was due to fatigue and not vice versa) and even the ascites was blamed on a drug reaction. There were lots of early signs but this is so rare that it was not on the radar screen of radiologists and specialists, who eventually told me that it was pancreatic cancer after a long-overdue endoscopy. I think that I lost at least eight or nine months and endured a hysterectomy for a prolapse that I believe was due to the ascites. I am a nonsmoker, drank beer or wine only occasionally, ate a very healthy diet, and had no pain or other GI symptoms except for gas (which I blamed on a high fiber diet) and used to joke that I had "a cast iron" stomach.

I started with Folfox last September but had to discontinue infusions in January after adverse reactions, but they upped the zeloda and I took that for about three more months till I suddenly lost all feeling below my knees while I was driving home from the store. My fingers had bothered me a lot for a while but a complete loss of sensation was something not communicated to me and I was frightened out of my mind that I would hurt someone or cause an accident because I could not feel the pedals. Fortunately I was only a few blocks from home and somehow made it. I was taken off the zeloda a week earlier than planned and was off chemo for a few months and started to be able to use my fingers and--much later--drive again.

After a CAT scan last month I was put on Folfiri and initially found it much easier than the Folfox, with only a few days of flu-like fatigue. I had walked to the infusion center only about six blocks from where I live and could have walked home but a visiting nurse gave me a lift because I had to bring home a big box and stay out of the sun. I did okay I thought, but a couple of days ago I started to run to the bathroom more frequently and now the severe neuropathy (hand and foot syndrome) is returning and it hurts a lot to use my fingers and my feet are getting numb so I am afraid to drive. My doctor told me that the neuropathy is due to the oxiliplatin still remaining in my body even after six month off, triggered by the Fu in the fanny pack. No hair loss yet, but my doctor warned me and I got a wig. I had to get a mediport snd wear a fanny pack 24 hours a day for two days and receive home care to remove it, but the visiting nurses said that I might not loose all my hair, only experience thinning. Monday I go back for a second infusion and will update if I can till type.

The kicker is that everyone tells me that I look just great and when I had my yearly physical last month my physician informed me brightly everything was in great shape except for the obvious condition. I don't blame her for the diagnosis lapse--I had very vague symptoms for a long time--but when they began to be more obvious she was unavailable because of problems within her own family and I had to see physician assistants who misdiagnosed me with diverticulitis (WRONG) and high cholesterol (never before a problem and I was even complimented on my previously low counts and obviously good diet) and even the specialists who I was later referred to misdiagnosed me first with gall bladder problems and then with pancreatic cancer.

I would like to compare notes with others, especially with regard to diet and alternative/complementary treatments.

nsd60
Posts: 4
Joined: Jun 2011

I have not posted to this board in awhile. There is a duodenal cancer group on facebook and yahoo.com. This is in response to the person who posted on June 6th 2012. I am so sorry to hear about your diagnosis. My husbands cancer spread to his liver after 8 rounds of oxilplatin and xeloda. He had a whipple on April 2011. My suggestion to you is to get on a different chemo. Maybe Fofori (irinotican and 5fu) along with avastin. See if that shrinks the tumors. We have had chemoembolization and sir spheres. The sir sphere treatment was on April 5th and as of scans May 11th it was showing that his tumors are starting to die (he has 6 in his rt lobe). My husband Larry is doing ok-he has had a lot of infections and we have been in the hospital 3 times in months due to different infections. He had his porte removed last week and it will be put back in once the infection clears. I also suggest having a biopsy done of your liver tumor to determine what chemo drugs would work. If you have the KRAS gene then erbutix might work for you-otherwise avastin. Go to Beatlivertumors.org to see survival stories. People have survived this. I hope we will be one of them-all of us on this board! nanci

1955topresent
Posts: 6
Joined: Jun 2012

Thank you for your response. I know my doc wants to start a secondary line of chemo not sure what. And the liver doc want to put pellets of chemo into my liver and wait a month or so to see if it worked. But I was not aware that a biopsy would be able to let them know if the drugs would work. I don't think I can stand going through the treatment for the end result to be so poor. Out of desperation I was thinking of going to see a doc at Cancer Treatment Center of American in Zion IL. I have read both good and bad about them. But I am the kind of patient they want-advanced and not responding to treatment. I was nto able to have the whipple surgery because of tumor is so advanced and my only hope was it shrinking but it that time it spread to the liver-they think 2 or 3 liasion about 2 cent. I am starting to experiene alot of pain on my right side lately. I am more concerned that I have been out of treatment so long (six weeks). I wish you and your husband the best of luck and my prayers are with you. Today would of been my 34th anniversary but my husband died 18 years ago. My son has moved back home to help me out. I hope to hear from you again with only good news about your situation

shivmsit
Posts: 1
Joined: Sep 2012

Hello, my brother of age 24 years was dignosed with moderately differentiated adeno carcinoma of deudunum in june 2010. He underwent a surgery than 25 cycles of chemo therapy. Now 2 days back he was admited in hospital again i serious condition qnd his deodunum has blocked
and also his cancer mets to lungs. I have read about by pass surgery or stents but i am not sure doctor in India would do this kind of surgery or not. This ssurgery may save his life or give him life for another 2-3 years. Inspite of chemo his cancer keep on spreading. I wish we find a surgeon who can do needful operation. I wish you all the very best to fight with deudunum cancer.

Trew1511
Posts: 1
Joined: Feb 2013

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
Posts: 1
Joined: Mar 2013

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
Posts: 5
Joined: May 2013

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
Posts: 1
Joined: Mar 2013

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
Posts: 4
Joined: Jan 2014

Hi how are you today?

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