New to group - survivor

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Hi everyone.  Just found out about this board.  In a nutshell -

February 2014 - Went to ER with extreme pain in my right side.  Doc thought it was my appendix.  Small incision...couldn't find the appendix as it had been swallowed up by a mass.  Split my belly wide open and performed a resection of the colon taking the mass out.  Perfect heal - no ostomey bag needed.  Diagnosed as Stage IIIb colon cancer with spread to 1 out of 29 lymph nodes.

March 2014 - port implanted, started chemo: Leucovorin, Fluorouracil and oxaliplatin.

June 2014 - defective port removed, new port implanted.

September 2014 - completed chemo, port removed.

September 2014 - present:  N.E.D.

They are watching a couple small nodules in my lungs but they haven't changed in size in a year.  The oxi took it's toll and gave me the gift of neuropathy in my hands and feet.  Extremely painful at times.  Feet are numb.  I manage to stumble a lot and have to pay attention to my walking.  A fall a couple months ago broke some ribs and my big toe on my right side, so I have to pay more attention.

Just lucky to be a survivor!

 

Comments

  • malbin0259
    malbin0259 Member Posts: 6
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    Survivor

    I posted a new comment today as well regarding my wife, her colon cancer was similar yours, she had no symptoms until one day she had a stomach which turned out to be stage 4 colon cancer.  She is currently taking the same drugs you were on but she is on one more but I cannot remember the name.  Her cancer is new, only about month to 6 weeks, just not sure what to expect.  Thank you for sharing yours.

     

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    edited May 2016 #3
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    Welcome Slugger, my story

    Welcome Slugger, my story hits some of the same "highlights", but it spans a longer arch. Click my handle for specifics. They must have good confidence about your situation to undue the port in 6 months. Mine was in for 6 years, mostly because I didn't push to get it out, but then getting it flushed every so often became too much hassle and it would'nt have worked after about a year and a half.  Anyway, welcome to the place noone wants to belong to, there's a lot of good, smart folks here, and me as well...............................................Dave

  • Slugger103
    Slugger103 Member Posts: 2
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    Dave - The doctor gave me the

    Dave - The doctor gave me the choice for the port - keep it in "just in case" and get it flushed every month or take it out.  I made the choice to take it out...it was my confidence that I beat cancer (so far...).

    malbin0259 - watch the effects of the oxaliplatin...that is what causes the neuropathy.  Doc told me that as soon as I feel tingling in my feet/hands he would reduce the dose, but by the time I noticed it the damage had been done.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
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    Good for you Slugger! We are

    Good for you Slugger! We are all happy to hear about someone who is NED, particularly after having it as advanced as yours must have been. We can never have too much hope for the future. I'll find out in a few weeks if I am also NED. I was for a while last summer and then they found spots in one lung. I had them radiated a few months ago so the next CT scan will show if they're gone. I'm feeling fabulous and very positive about the future. I plan on being around for a long time. I do have some side effects that are still dragging around such as neuropathy in my feet but it's slowly getting less. I also had it around my chest at bra level so that was unpleasant but it's almost gone now. My feet still feel like I'm walking on bubble wrap all the time but it's not as bad as it was.

    Jan

  • danker
    danker Member Posts: 1,276 Member
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    neuropathy

    Glad to hear that it is getting better.  May you soon be NED  and side-effect free! Good Luck

  • abrub
    abrub Member Posts: 2,174 Member
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    Important question: did tumor originate in the Appendix?

    If so, you need to see an appendix cancer specialist.  While the chemo used is the same as for colon cancer, the full treatment is different.  With appendix cancer, some form of Intraperitoneal Chemo (HIPEC or EPIC) is usually done when the tumor is removed.  Chances are you'd be on watch and wait, but best to consult with the right kind of expert, if that is the case for you.  Been there, done that (Metastatic appendix cancer, stage 4, dx'd in 2007.  I'm fine now.)  However, the dr who wanted to treat it as "garden variety Stage 4 colon cancer" gave me 5 years maximum.  That was 9 years ago.  Feel free to PM me, as I don't check the group as frequently any more.

    Alice

  • SilentRenegade
    SilentRenegade Member Posts: 123
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    Love you survivors. Dad has

    Love you survivors. Dad has had Stage IV CRC for three years. Complete response to radiation/chemo on rectal and colon tumors, almost a complete response on liver/lung mets. Thyroid started showing activity (ignored by first onc). Extreme bleeding from the rectum in August 2015 led to more concern over thyroid after a CT scan (bleeding due to Avastin). First hospital couldn't remove the thyroid by the time they got it - too big. Finally went to a university hospital and removed 98% of an invasive medullary thyroid cancer. ICU for 3 days - no issues after. March 2015 found two large mets to the brain - assuming CRC, WBR 10 treatments, no evidence of tumors. He's only been on chemo once or twice, but was not on it continuously. His first line was working well. They call him a medical anomaly. He responds incredibly well to radiation treatments. 

    I also didn't know that you could have a port removed, either!