I can't possibly be the only one...

RadioMaMa
RadioMaMa Member Posts: 1
edited March 2014 in Rare and Other Cancers #1
I am 33 years old- I was diagnosed with Stage IV Appendix/Colon Cancer May 14. It's Signet Ring Cell Adenocarcinoma.
What I'm being told is that the cancer originated in my appendix but the tumor manifested in my colon.
So On May 21 I had a right hemicolectomy, my appendix, terminal illeum (sp), omentum fat were all cancerous and removed. 18 lymph nodes were also removed- 8 of which were cancerous.
I started FOLFOX chemo on July 27, had 3 rounds (every other Monday) then had IPHP (Intra-Peritoneal Hyperthermic Profusion) surgery along with exploratory laproscopy on September 18. Then I resumed Chemotherapy with Avastin in October. Monday will be round 7 (of 12).

There is SO little information online about this type of cancer. And the information out there is old.

Is there ANYONE else out there with a similar diagnosis- possibly undergoing the same treatments?

Comments

  • hpsquad
    hpsquad Member Posts: 7
    #2
    I was just diagnosed with
    I was just diagnosed with the same thing and am extremely confused. I had the surgery but they are waiting to start Chemo after my stomach heals. It's comforting to know that we're not alone and will be watching your posts to learn more.
    Although I'm 51 years old, it feels like my first day of kindergarten.
  • Catblue30
    Catblue30 Member Posts: 4
    #3
    hpsquad said:

    I was just diagnosed with
    I was just diagnosed with the same thing and am extremely confused. I had the surgery but they are waiting to start Chemo after my stomach heals. It's comforting to know that we're not alone and will be watching your posts to learn more.
    Although I'm 51 years old, it feels like my first day of kindergarten.

    Adenocarcinoma of appendix with mucinous components
    My husband was just diagnosed with a similar condition the originated in his appendix. I've found very little information available. He is getting treatment at MD Anderson in Houston.
  • juliebeth
    juliebeth Member Posts: 21
    #4
    Catblue30 said:

    Adenocarcinoma of appendix with mucinous components
    My husband was just diagnosed with a similar condition the originated in his appendix. I've found very little information available. He is getting treatment at MD Anderson in Houston.

    stage 4
    The only good organization is PMP pals. I recommend contacting them. I am at stage 4 and have been told I cannot have surgery because of lung mets. My cancer keeps coming back after rounds of chemo. I am now trying meditation. Since nothing else has worked.
  • raidersfan29
    raidersfan29 Member Posts: 2
    #5
    duodenal cancer.
    i was diagnosed in feb of my duodenal cancer.and it scares me how rare this cancer is and would judt like to find other with the same type of cancer and to talk aboout the things we are going through
  • pegoirwin
    pegoirwin Member Posts: 1
    #6
    hpsquad said:

    I was just diagnosed with
    I was just diagnosed with the same thing and am extremely confused. I had the surgery but they are waiting to start Chemo after my stomach heals. It's comforting to know that we're not alone and will be watching your posts to learn more.
    Although I'm 51 years old, it feels like my first day of kindergarten.

    same here
    I am 62 -- healthy as an ox. Had stomach pains for 90 days Had exploratory which was supposed to be laparospcoic but turned into open and they found signet ring cell adenocarcinoma and I am on the ostomy bag. Not sure of the primary seat of the cancer yet. Had the PET scan on Monday. Meeting with the oncologist this Friday, and wanted to ask what questions to ask her.. any tips?
  • vivalanikki
    vivalanikki Member Posts: 1
    #7
    raidersfan29 said:

    duodenal cancer.
    i was diagnosed in feb of my duodenal cancer.and it scares me how rare this cancer is and would judt like to find other with the same type of cancer and to talk aboout the things we are going through

    Duodenal Cancer
    Hi Raidersfan :) I see it has been a little over a year ago that you posted this and I'm sure you know a lot more about the cancer now than you EVER wanted to. I hope you get this message. My Dad was diagnosed with Duodenal Cancer last summer. It's hard to abridge the story but he was sick all summer, dehydrated, diagnosed with pancreatitis, diagnosed with pancreatic cancer, sent home several times (to die it felt like), had 38 feeding tubes placed/lost while throwing up, had biopsies that came back a-typical cells, lost 100 pounds before he could have his surgery. He was 62 at the time, 63 now. I advocated my guts out for him to have every test and the best surgeon and it was and still is so frustrating that there is so little written about this cancer. He went in for a whipple Sept of '10 but the surgeon found he had cancer in his lymphnodes and he found a nodule on the peritnium of his stomach. He told us he wanted to do a duodenectomy and resect the tumor/duodenum instead of the full whipple so Dad would be strong enough to have chemo and fight the cancer that would still be in there. His recovery from surgery was long and hard, he coded, retained 50 liters of water, his internal surgery site reopened, and he couldn't eat and keep it down for 7 weeks. He started Gemcitabine chemo in November. The chemo seems to be holding what's there at bay, his tumor markers are down and the chemo doesn't make him very sick. I would love to talk to someone going through the same thing, my whole family would. We have seen soooo many doctors who have sooooo many opinions, most of them negative. Stay positive!!!!!!!!!!! No body, tumor, surgery, treatment combination are exactly the same. I hope you are doing well and would love to hear from you

    Nikki

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