Ampullary cancer survivors?

MsD82

jroper525 said:

My Ampullary Cancer
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

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

MsD82 said:

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

Ampulary Cancer

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

SJM1 said:

Ampulary Cancer

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!

Hello, I too have been
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

rapjaguar said:

My mother with ampullary cancer
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

ampullary cancer
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?

eherberger

Mygirls2 said:

Hello, I too have been
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?

ampullary cancer
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

20 years out.
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

ampullary cancer survivor for almost 10 years now! :-)

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

ampullary cancer survivor for almost 10 years now! :-)

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!"  :-)

John21

jimnsherry said:

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

Ampullary Cancer Survivors

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

John21

brotzdesart said:

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

Face Book page for Ampullary Cancer

pls add me to your page...thx

pudgysmudgy

John21 said:

Ampullary Cancer Survivors

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

radiation and chemo

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.

 

 

artisarluk

ampullary carcinoma.

A friend of mine has been diagnose with the ampullary carcinoma.

 

I would like to get detailed and concrete information from the patients and medical doctors about what kind of drugs have been used, was the surgery whipple, etc?

Thanks

Anne1945

I had surgery 3/years ago for

I had surgery 3/years ago for stage 1 ampullary carcinoma. I am now in remission and will have 2 more annual scans. After 2 more years will go from remission to cured.

Gayle C..71

Ampullary cancer

My husband has it. His surgical oncologist recommended chemo first then surgery. Last chemo brought him down...anyone have info would appreciate it. He is 71. I am scared to death for him.