Ampullary cancer survivors?

dasaborner
dasaborner Member Posts: 12
edited March 2014 in Rare and Other Cancers #1
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.
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Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    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
    roxanne53 Member Posts: 154
    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
    jimnsherry Member Posts: 23
    YES, THAT IS ME. EMAIL ME PLEASE AT golfwrench@msn.com My name is Jim and I was diagnosed in December 2004. thanks
  • roxanne53
    roxanne53 Member Posts: 154

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

    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
  • brotzdesart
    brotzdesart Member Posts: 2
    two and a half year ampullary cancer survivor
    I had stage 2a ampullary cancer. Had a whipple, radiation and chemo. It has been two and a half years since surgery.
  • mrslar
    mrslar Member Posts: 9

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

    Brother has ampullary cancer
    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
    mrslar Member Posts: 9
    mrslar said:

    Brother has ampullary cancer
    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.

    Ampullary Cancer
    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
    jaheath Member Posts: 3

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

    How are you doing?
    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
    jaheath Member Posts: 3

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

    How are you doing?
    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
    mrslar Member Posts: 9
    jaheath said:

    How are you doing?
    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?

    How is your husband doing,
    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
    RayLogu Member Posts: 19
    mrslar said:

    How is your husband doing,
    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.

    Ampullary
    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
  • rapjaguar
    rapjaguar Member Posts: 1
    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
  • gastro1
    gastro1 Member Posts: 3
    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

    To Rejeana...
    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)?
  • NancyinCa
    NancyinCa Member Posts: 2
    I just came upon this site.
    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.
  • brotzdesart
    brotzdesart Member Posts: 2

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

    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.
  • cdaughter
    cdaughter Member Posts: 1

    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.

    facebook
    My Dad meets with his oncologist today 8/16/11.
    How can he find you on facebook?
  • nanchap
    nanchap Member Posts: 2

    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.

    Facebook
    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!
  • nanchap
    nanchap Member Posts: 2
    There is a new Facebook page
    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
    sily Member Posts: 7
    yyy
    gffffff
  • jroper525
    jroper525 Member Posts: 3
    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