Appendix Cancer

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I was diagnosed with stage 3A mixed adenoneuroendocrine carcinoma that presents with signet cell morphology in December, 2016.  I underwent a right hemicolectomy in January 2017, and am now going through 12 rounds of FOLFOX.  I haven't been able to find out anything about this particular cancer, and it seems to just be lumped in with colorectal cancers.  It has been 4 days since I finished my first round of 5FU, and the nausea is still hanging on.  I have the patch and two anti-nausea medicines, but they don't seem to be getting rid of it.  It is normal to have nausea for this long after treatment?  I hate taking any sort of pills, and I would try medicinal marijuana if it were legal in my state (but it's not).  I don't want to develop a dependancy on any drug.  I'm struggling to understand what is happening, and it makes me hesitant to try anything else.

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  • zx10guy
    zx10guy Member Posts: 273 Member
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    Sorry you're part of this

    Sorry you're part of this wretched club and even in a more rarer subgroup with appendicial cancer.  From being on this forum for the time I have, I only know of two people who have had appendicial cancer:  abrub and myself technically.  You can look up abrub's posts on the subject.  Mine was caught really early in the polyp stage where it was still insitu putting me as Stage0.  There's not a lot out there because of the rarity of this particular cancer.  So doctors tend to just treat it like colon cancer.  Abrub has more information on this as hers was a bit more advanced than mine.  I seem to recall her saying to find an institution which has some specialty or done work/research around appendicial cancer as it made a difference with her initial treatment.

    As far as the nausea goes, none of the pills are addictive.  I found two things which worked for me.  I told my oncologist my symptoms and he adjusted my medications to different anti-nausea meds both at home and when I was getting infused.  The other was starting the pills early before going in for my infusion.  My recovery from feeling like crap when from about 3 to 4 days after I got unhooked from the at home pump to almost a half a day to a day after being hooked up.

    BTW, the reason I had chemo was because I was initially diagnosed with colon cancer in my descending colon back in 2012.  I was Stage 3B (T3N1M0).  The appendicial cancer was caught last summer during a colonoscopy and elevated CEA levels.  My GI doctor considers the appendicial cancer as a new primary for me.

  • flannery123
    flannery123 Member Posts: 2
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    zx10guy said:

    Sorry you're part of this

    Sorry you're part of this wretched club and even in a more rarer subgroup with appendicial cancer.  From being on this forum for the time I have, I only know of two people who have had appendicial cancer:  abrub and myself technically.  You can look up abrub's posts on the subject.  Mine was caught really early in the polyp stage where it was still insitu putting me as Stage0.  There's not a lot out there because of the rarity of this particular cancer.  So doctors tend to just treat it like colon cancer.  Abrub has more information on this as hers was a bit more advanced than mine.  I seem to recall her saying to find an institution which has some specialty or done work/research around appendicial cancer as it made a difference with her initial treatment.

    As far as the nausea goes, none of the pills are addictive.  I found two things which worked for me.  I told my oncologist my symptoms and he adjusted my medications to different anti-nausea meds both at home and when I was getting infused.  The other was starting the pills early before going in for my infusion.  My recovery from feeling like crap when from about 3 to 4 days after I got unhooked from the at home pump to almost a half a day to a day after being hooked up.

    BTW, the reason I had chemo was because I was initially diagnosed with colon cancer in my descending colon back in 2012.  I was Stage 3B (T3N1M0).  The appendicial cancer was caught last summer during a colonoscopy and elevated CEA levels.  My GI doctor considers the appendicial cancer as a new primary for me.

    Yeah, I'm definitely not

    Yeah, I'm definitely not loving it.  My appendix ruptured and an abscess formed.  Upon removal of the appendix, the tumor was found.  The oncologist says that the tumor itself did not rupture, but honestly, I don't think they know with 100% certainty what to do.  I have reached out to Dr. Sardi at Mercy Hospital in Baltimore, and he is looking over all of my reports and CT scans to see if I'm a candidate for HIPEC.  My father died of colon cancer when he was 48 and I've always had regular colonoscopies since I was 25.  I am now 47 and polyps were discovered, and removed, every 3 years since I was 37. I envision this nasty cancer as a malevolent cell/entity that was determined to find a home, so it crawled into the one place that a scope cannot see. I would like to hear from Abrub and see what her experience was/is.  Thank you for making me feel better about the medicines for the nausea. I tend to get nauseated from just about anything (surgery, other meds, travelling, etc) so I figured chemotherapy would really ramp it up.

  • abrub
    abrub Member Posts: 2,174 Member
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    Yeah, I'm definitely not

    Yeah, I'm definitely not loving it.  My appendix ruptured and an abscess formed.  Upon removal of the appendix, the tumor was found.  The oncologist says that the tumor itself did not rupture, but honestly, I don't think they know with 100% certainty what to do.  I have reached out to Dr. Sardi at Mercy Hospital in Baltimore, and he is looking over all of my reports and CT scans to see if I'm a candidate for HIPEC.  My father died of colon cancer when he was 48 and I've always had regular colonoscopies since I was 25.  I am now 47 and polyps were discovered, and removed, every 3 years since I was 37. I envision this nasty cancer as a malevolent cell/entity that was determined to find a home, so it crawled into the one place that a scope cannot see. I would like to hear from Abrub and see what her experience was/is.  Thank you for making me feel better about the medicines for the nausea. I tend to get nauseated from just about anything (surgery, other meds, travelling, etc) so I figured chemotherapy would really ramp it up.

    If you are in the Baltimore area...

    There is also an expert at Johns Hopkins - Dr. Ahula, I believe (I can find her name if you need it.)  I did answer your private message.

    Alice