CSN Login
Members Online: 12

Ampullary cancer survivors?

dasaborner
Posts: 12
Joined: May 2005

I had a tumor of the Ampullar of Vader removed in February, 2003. The full whipple procedure was done at Memorial Sloan Kettering on February 17, 2003. Because 5 lymph nodes were involved, chemo therapy and radiation were prescribed. Two years later, I have been said to be clear of all cancer, and am now on 6 month scans.

I would be interested in communicating with others who have had a similar experience.

AuthorUnknown
Posts: 1564
Joined: May 2006

Hello,

You may want to do a search of personal web pages to see if you find someone with a similar experience that you wish to contact. To do this, click on "Personal Web Pages" on the left hand side of the page. Put in your search criteria and browse the web pages. If you find someone you would like to contact you can do so through the internal CSN email.

If you find someone on this discussion board you can also email them by clicking on the envelope icon below their name.

I hope this information has been helpful.

Take care and be well,

Dana
CSN Dana

roxanne53's picture
roxanne53
Posts: 157
Joined: Feb 2004

Hello~
you can also try the sites:
PANCAN.org; veritasmedicine.org (or .com);
Johns Hopkins site; Cancer guide: Steve Dunn's cancer information site.

I have used NIH.gov and MedlinePlus to get more information and other links.

Hope this is helpful to you.
Take care.
Roxanne

jimnsherry's picture
jimnsherry
Posts: 23
Joined: Jun 2005

YES, THAT IS ME. EMAIL ME PLEASE AT golfwrench@msn.com My name is Jim and I was diagnosed in December 2004. thanks

roxanne53's picture
roxanne53
Posts: 157
Joined: Feb 2004

Hello.
you can also email dasaborner through this site going to tools kit and using the user directory. It will then signal the person has email from here. Especially you do not hear from the person right away. Thought I would let you know this.
Take care
roxanne53

John21
Posts: 4
Joined: Feb 2013

Jim,

I am seeking info on ampullary cancer survivors. I was diagnosised with Ampullary Cancer in Nov '12 and had a Whipple Procedure operation on Dec 3 ' 12. They successfully removed the small tumor as well as one lymphnode that had a cancer cell (of the the nine that were removed).  I am now in the second phase of my treatiment program, radiation/chemo, after completing 3 months of chemo. I would like to hear more about your experience and how you are doing...it is so difficult to get info on other patients...thx

pudgysmudgy
Posts: 1
Joined: Oct 2013

Hi, I just had 3 weeks of Gemzar and seemed to tolerate it very well.  I am scheduled to start xeloda and radiation in three weeks.  Am concerned about this phase of treatment.  Seems like they are radiating good tissue and I am having a difficult time wrapping my head around that.  I had Whipple which was successful at removing all cancer tissue, margins were clear.  One lymph node with slight vascular invasion.  Doctor concerned about the "vascular invasion" as there is no way to tell its location, may have been from the one positive lymph node, maybe not.  I am concerned about side effects and my physical tolerance of the coming treatment.  After the radiation/chemo I will undergo another 12 weeks of Gemzar, which I am told I may not tolerate as well after the radiation/chemo.

How did you do with the radiation/chemo?  Any lasting side effects?  Did you lose your hair from the Xeloda? 

Thanks.

 

 

brotzdesart
Posts: 2
Joined: Jan 2010

I had stage 2a ampullary cancer. Had a whipple, radiation and chemo. It has been two and a half years since surgery.

mrslar
Posts: 9
Joined: Mar 2010

My brother had a Whipple's procedure for ampullary cancer on 03/12/10 at Johns Hopkins. There was one lymph node that was cancerous and he will be starting chemo and radiation in about 5 weeks. Any words of wisdom, advice, etc, that I may give him to get him through this? He is only 43 years old. Originally thought he had bile duct cancer, but he was officially told that it was ampullary cancer at his appointment last week.

mrslar
Posts: 9
Joined: Mar 2010

Does anyone use juicing in addition to traditional methods of treatment? I was reading a lot about this and was wondering what type of juicers are being used.

jaheath
Posts: 3
Joined: Aug 2010

My husband is in the hospital as I write in Nashville TN Had the whipple.3 days ago..feels sick right now...took out 6 nodes and it was in one. What about you? He is almost 55 years old. Smoker if that makes any difference in this type cancer. I am praying he will quit now! Is there somewhere to go for treatment that is better than all the rest? MD Anderson?

jaheath
Posts: 3
Joined: Aug 2010

My husband is in the hospital as I write in Nashville TN Had the whipple.3 days ago..feels sick right now...took out 6 nodes and it was in one. What about you? He is almost 55 years old. Smoker if that makes any difference in this type cancer. I am praying he will quit now! Is there somewhere to go for treatment that is better than all the rest? MD Anderson?

mrslar
Posts: 9
Joined: Mar 2010

How is your husband doing, jaheath? Is he getting stronger and feeling better each day? My brother also had one positive node. He had his surgery at Johns Hopkins, did his first round of chemo at our local hospital but went to Hopkins for 6 weeks to do his radiation. He is starting his last round of chemo next week and then we pray he is cancer free for a long, long time.

My brother is 43 and withstood the chemo and radiation very well so far. We attribute it to his age.

RayLogu
Posts: 19
Joined: Jul 2010

I had one positive node (regional) and negative margins of tumor and node. Whipple on 5/25/10 and finished chemo and radiation 9/3/10. Feeling much better now that I through with treatments. Doc recommended Gemzar infused after completing the Xeloda, and I am delclining that treatment for now. My surgeon states my case is the earliest he has seen ampullary cancer caught so I trust the one round of Xeloda cleared up microscopic cells, and I had toxcicity build up on Xeloda due to my age (77), so did not want to risk
more damage from treatments.
Have your brother request an evaluation of his heart prior to treatment and after and possibly during treatment if on one recommends. I had the echocardiogram for clearance for surgery in May and at wife's sugesstion had one in August due to low blood pressure and discovered aortic valve calcification. That is one of the factors in my decision NOT to take the Gemzar.
my best to you and your family!
Regards, Ray / North Caroina

brotzdesart
Posts: 2
Joined: Jan 2010

I am now a four year survivor of ampullary cancer. I am starting a facebook page for people affected by ampullary cancer to gather.

cdaughter
Posts: 1
Joined: Aug 2011

My Dad meets with his oncologist today 8/16/11.
How can he find you on facebook?

nanchap
Posts: 2
Joined: May 2011

I was diagnosed with AC in Nov '07. I also had whipple surgery & a total of 16 months of chemo. I'd like to get on the FB page. What is it called? Seems like a great idea!

John21
Posts: 4
Joined: Feb 2013

pls add me to your page...thx

rapjaguar
Posts: 1
Joined: Mar 2011

My mother who is only 56 years old was diagnosed a year and a half ago and now the cancer is back. I just need to talk with someone who understands. I have so many questions and was hoping you would be willing to talk.
I hope your doing well!
Many Regards,
Rejeana

gastro1
Posts: 3
Joined: Mar 2011

I'm sorry, I do not have cancer so can not answer your questions. I came here to seek information, but your post caught my eye. Two years ago I had a pre-cancerous tumor removed from my Ampulla of Vater. I am also 56 years old! They did not do a Whipple, but did remove the tumor and reroute the bile and pancreatic ducts. All has been going well until my follow-up biopsy this year. My cells are changing again, but my doctor feels we have some time and will biopsy again early next year.

How is your mother doing? How did they get the cancer the first time (surgery, chemo)?

eherberger
Posts: 2
Joined: Aug 2012

My mother (age 78) was also diagnosed with Ampullary cancer in early April 2012. She had the Whipple surgery on April 30th. Two of 14 lymph nodes tested positive. She currently is feeling fine and not experiencing any symptoms. She just had consultation with two different oncologists and my mom has chosen not to do chemo. Because there is not enough data about this cancer and treatments, the doctors could not say if chemo would help or not. If my mom had decided to do the chemo, they were going to prescribe 5fu and oxaliplatin.
I believe my mom chose not to do chemo to have quality of life and because she thinks she would be a burden on family (from the side effects of chemo). Of course, she would not be a burden to us but we do wonder how the side effects would affect her quality of life. Our family wanted her to at least try the chemo but her wishes were not to. I am interested in feedback. If you were 78 and have lived a good life and you are feeling well now, would you do the chemo?

NancyinCa
Posts: 2
Joined: Oct 2010

I just came upon this site. I'm so happy to hear that there are some who do well after surgery and treatment. I had whipple surgery 9/10, I had 1 positive lymph node site. I'm completing my 6th month of gemcitabine chemotherapy and will start combo chemo-radiation in the end of May. The prognosis is not that good so I had little hope for more than 2-3yrs. After reading your note I feel hopeful for some more years of quality life. I hope I'm as lucky.

nanchap
Posts: 2
Joined: May 2011

There is a new Facebook page called "Ampullary Cancer Survivors." If you're on FB, check like, & leave a message. Seems like a very easy way to communicate with others, but so far, there are only two people on it! It would be great to have some more activity!!

sily
Posts: 7
Joined: Jan 2012

gffffff

jroper525
Posts: 3
Joined: Jan 2012

I was diagnosed with a tumor on the bile duct in June of 2011. I had a Whipple procedure performed on June 23rd and Danbury Hospital in CT. After I recovered I met with my oncologist and was informed I had Ampullary Cancer. The cancer was found in 3 limp nodes (described as trace amounts. My Doc conferred with the head oncologist at Slone Kettering in NYC and they decided that 6 months of Genzar should take care of this. This procedure was based on a German study. I had a CAT Scan on Thursday and spoke with my Doctor on Saturday and will meet with him on Monday. He said on sat. he was not happy with the CAT scan results but would discuss them with me on Monday, January 23rd. Is there anything you can tell me as what I have to look forward too.
Gerald J Roper
2A White Birch Dr
New Fairfield CT. 06812
203-746-6360

MsD82
Posts: 1
Joined: Feb 2012

Hi J-

did you also get a PET Scan with your CT STUDY? Hope the doctor had some hopeful recommendations, even if he/she was not happy with the CT results. I find this whole thing (disease, diagnosis, treatments, body experiences, emotional and mental ups and downs) quite an adventure. I'm still hanging in there and feeling quite good, despite interruptions to my life's original plan.

My ampulary cancer was diagnosed 2/09, and, as I said, I'm pretty healthy right now. People say I look better than ever, and I feel it. I feel lucky. I have been pretty sick on and off, for 3 years, but was very healty before this disease. In addition to original diagnosis and treatment (feb-July, 2009), I've had 2 bouts of pancreatitis post Whipple, and now 2 blooms of metastasis....one in supra scapula lymph node (2010)...and the second was mets to left lower lung 2011). Pacreatitis is treated with no food or beverages, only IV FLUIDS and antibiotics, then gradually begin low fat diet, small portions, and advance to what you tolerate. My cancer mets are treated ith more chemotherapy (gemzar and Xeloda, or oxaliplatin and Xeloda). Now my lung mets is being treated with Radiation Therapy.

(What ive learned:
1. About eating: Be sure to eat low fat, and take pancreatic enzymes to avoid excess work by your small pancreas...I take Creon, 3-5 per meal to reduce risk of more pancreatitis in future..very painful...Also, you can stop eating for 2-3 days, just take clear juices and broth, and crackers, if you THINK you have early signs of pancreatitis. Be sure to call MD (i call my primary care MD) if you have very high mid-abdomen and/or back pain, and you only need a lab test to rule out pancreatitis. Dont wait around and suffer. Things can get toxic pretty fast with pancreatitis. I also purchased Optimental supplement directly from Ross Nutritionals online (expensive at ~$300/case of 24), mix 1 can with ice and 1/4 cup orange juice..and sip over about 1 hour. It doesn't require pancreatic enzymes to digest the fat or protein in it, and can help keep your strength up when you can't eat.)

2. About the cancer, I was told early on that mine is agressive, I am relatively young with a teenager and husband who love me, so I ask my doctors to be agressive with early diagnosis of any problems. I've educated myself about the symptoms, tests and treatments...and I have several doctors to confer with (primary care, oncologist, specialist GI Oncologist, pain management specialist (I've had 2 nerve blocks for excruciating pain...they helped), and early on, the surgeon and GI specialist for diseases of the pancreas.

3. Times are good between symptommatic disease. As my therapist says, to remind me to get out and live well, "You're not dying yet!"

Best wishes, hope you had a good care plan for your updated diagnosis. (PS, CT SCANS alone did not help my doctors locate early disease. The PET/CT combination was needed.)

MsD82

SJM1
Posts: 1
Joined: Jun 2012

Hello, I just found this site. I was diagnosed in March, 2012 and my Whipple surgery was done on April 2, 2012. I only had two symptoms. I was jaundice and had a bloated stomach. The surgeon removed part of my Pancreas, bile duct and the and the duedeum (sorry I misspelled the last word!) Also, 4 nodes were cancerous.
I started my Chemo on the last week of May and I finished # 3 of the 4 scheduled just today. My oncologist told me today that I am looking so much better then when I first started. I chose to take "Emend" as treatment for nausea. I take one pill at the beginning of chemo, then the second pill 24 hours later and the third pill 24 more hours later.
I also take Creon but take one t three pills per meal. I also take protonix for acid reflux.
After Chemo, I will go for Radiation for at least 5 weeks, then possible last few chemo treatments. At the beginning of my treatment, the doctor said that I would have 5-8 months of treatment. My Cancer Center also offers free massages and I'm taking one each week. This has become my treat for myself.

I turned 61 years old on June 10. I'm keeping a positive outlook on my chances of survival and doing everything the doctor is suggesting for me. MY DAILY GOAL: LIVE---LAUGH--LOVE. ALSO, " CHERISH YESTERDAY-DREAM TOMORROW AND LOVE TODAY.
SJM!

Mygirls2
Posts: 1
Joined: Aug 2012

Hello, I too have been diagnosed with Ampullary Cancer. My whipple was in January and I have done 4 months of chemo and 5 weeks of radiation. I feel pretty good right now. I agree that your attitude has a lot to do with it!!! Keep your head up and keep "treating" yourself to those massages!! Where do you go for chemo treatment?

eherberger
Posts: 2
Joined: Aug 2012

My mother (age 78) was also diagnosed with Ampullary cancer in early April 2012. She had the Whipple surgery on April 30th. Two of 14 lymph nodes tested positive. She currently is feeling fine and not experiencing any symptoms. She just had consultation with two different oncologists and my mom has chosen not to do chemo. Because there is not enough data about this cancer and treatments, the doctors could not say if chemo would help or not. If my mom had decided to do the chemo, they were going to prescribe 5fu and oxaliplatin.
I believe my mom chose not to do chemo to have quality of life and because she thinks she would be a burden on family (from the side effects of chemo). Of course, she would not be a burden to us but we do wonder how the side effects would affect her quality of life. Our family wanted her to at least try the chemo but her wishes were not to. I am interested in feedback. If you were 78 and have lived a good life and were feeling well, would you still have opted to do the chemo? What type of chemo are you doing and what are your side effects? Thank you for any info you can give.

4timer
Posts: 2
Joined: Aug 2012

I had ampullary carcinoma in 1992 and a regular Whipple. Now, diagnosed with cancer again, in the body of the pancreas and nearby nodes. Very rare type: acinar cell/neuroendocrine. Will have distal pancreatectomy and spleenectomy in a few weeks. Hoping they don't have to take my stomach as well, as one of the nodes appears quite close on imaging to the gastric artery.

Cindi Pierce
Posts: 3
Joined: Apr 2013

I, too, had AC, with a Whipple surgery, radiation, chemo pills, & chemo IV.  Got hernias from the chemo up & down the 14' scar, had surgery for those with plastic mesh inside now, but I'm alive & doing pretty good!  My husband & I love M D Anderson, & ve in their moto of "making cancer history!"  :-)

Cindi Pierce
Posts: 3
Joined: Apr 2013

I, too, had AC, with a Whipple surgery, radiation, chemo pills, & chemo IV.  Got hernias from the chemo up & down the 14' scar, had surgery for those with plastic mesh inside now, but I'm alive & doing pretty good!  My husband & I love M D Anderson, & ve in their moto of "making cancer history!"  :-)

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network