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Stomaversary

TMac52
TMac52 CSN Member Posts: 352
in Colorectal Cancer #1
Hi All,
1 year ago today I had surgery to remove my tumor and woke up with a perm colostomy. I have had no evidence of disease since and hope it stays that way. After surgery healed I did almost 4 months of oxi/5fu couldnt finish the entire regimen of oxi. I have had 2 CT scans in the last year and multiple blood draws CEA is normal and NED on the scans. I still have very painful neuropathy in my feet. Tried Gabipentin didnt touch it started Lyrica 100mg 3 times a day a few months ago still not much improvment. If I have to live with it to be NED i'll take it but I really hope it eventually subsides. I really can not walk for exersize.

I have not been very active on this site for awhile....three deaths of people I got to know here in a short period really bummed me out... I was trying to be positive and found myself getting negative Dr. orders take a break from the internet.

I thank each and every one of you that have helped me along the way i am very grateful for you all. I still lurk every week but only comment if I think I can help.

Good Health to you all,
Tom
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Comments

  • tommycat
    tommycat CSN Member Posts: 790 Member
    #2
    Congratulations on your
    Congratulations on your NED!!!!! Party time!
    FYI, for me at least, the neuropathy took about a yr to subside, and I still get an occasional flare in cold weather.
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  • TMac52
    TMac52 CSN Member Posts: 352
    #3
    tommycat said:

    Congratulations on your
    Congratulations on your NED!!!!! Party time!
    FYI, for me at least, the neuropathy took about a yr to subside, and I still get an occasional flare in cold weather.

    Thanks
    Thank you Tommycat........thats reasuring to know it still may go away.
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  • maglets
    maglets CSN Member Posts: 2,576 Member
    #4
    TMac52 said:

    Thanks
    Thank you Tommycat........thats reasuring to know it still may go away.

    dearest tom
    dearest tom.....what a wonderful message from you. I am so happy to hear you are ned. Completely understand the blows of the deaths....it shakes you to the core....glad you followed docs orders.

    the oxy is a kicker dat's for sure! I don not have neuropathy and I am grateful for that....I am hoping yours will gradually recede. Lovely to see your face and to hear from you.

    all biggest hugs

    maggie
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  • pepebcn
    pepebcn CSN Member Posts: 6,331 Member
    #5
    maglets said:

    dearest tom
    dearest tom.....what a wonderful message from you. I am so happy to hear you are ned. Completely understand the blows of the deaths....it shakes you to the core....glad you followed docs orders.

    the oxy is a kicker dat's for sure! I don not have neuropathy and I am grateful for that....I am hoping yours will gradually recede. Lovely to see your face and to hear from you.

    all biggest hugs

    maggie

    You are missed in the board Tom !
    Congratulations in your stormaniversary!
    Hugs!
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  • buckeye2
    buckeye2 CSN Member Posts: 428 Member
    #6
    I'm glad you returned to the
    I'm glad you returned to the boards. Us newcomers need to hear from people like you who are beating this terrible disease. Lisa
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  • Buckwirth
    Buckwirth CSN Member Posts: 1,258 Member
    #7
    Happy Stomaversery
    Mine is on 1-10.

    How are you doing with the stoma now? Figure out the clothes? If I remember you ride a motorcycle and had a concern about shirts to wear.

    Mine has, for the most part, been well behaved, and I have found ways to adapt my wardrobe. Quitting working solved any issues I had with suits, and certainly with the inappropriate noises during meetings. :smile:

    Hope all continues to be well with you, and do believe that you will find a way to deal with the neuropathy (I find a low dose, fast acting pain medication (something for breakthrough pain) helps with walking, but your mileage may vary.

    Blake
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  • Annabelle41415
    Annabelle41415 CSN Member Posts: 6,744 Member
    #8
    Anniversary
    Isn't it something the things we see as anniversaries, with this disease many of them we just don't want. Glad you are doing good. That neuropathy is terrible stuff. I've still got it but it has gotten better but doubt it will ever go away. Hope you continue to improve.

    Kim
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  • scouty
    scouty CSN Member Posts: 1,965 Member
    #9
    Stomaversary
    That's a new one Tom and Congrats to you!

    There was a thread here recently about diabetic socks helping with neuropathy and I find that smearing a soothing, healing lotion all over my feet and then putting on loose cotton socks to sleep in really helps. Once I starting walking, that is when mine became tolerable.

    Dorookie started the thread about help for neuropathy and it is probably on page 2 maybe 3 by now. There was some good stuff on it if I remember correctly.

    Thanks for the good news and for checking in.

    Lisa P.
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  • plh4gail
    plh4gail CSN Member Posts: 1,238 Member
    #10
    Im happy for you buddy!
    Im happy for you buddy! :)

    huggs, gail
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  • pete43lost_at_sea
    pete43lost_at_sea CSN Member Posts: 3,900 Member
    #11
    happy stomaversary
    glad your well. I hope your neuropathy improves, mine really has recently.
    somedays I am unaware of it.

    hugs,
    pete
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  • ddpekks
    ddpekks CSN Member Posts: 162
    #12
    I had to laugh....
    when I read your title to your post. This morning, I'm headed out the door to work and my dear husband says, "Have a good day and by the way, Happy Anniversary!". I'm like, oh crap, I thought we were married in month of April? What have I missed here? He laughed (which he doesn't do a lot of anymore) and said, "Today is our 3 month anniversay of me pooping in a bag and you packing my a$$".

    Of course, I cried all the way to work, but am so grateful we have reached this point, because I am fully aware that things could be so much worse.

    Congrats to you. Will post when he reaches his 1 year with glee!

    Deb
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  • TMac52
    TMac52 CSN Member Posts: 352
    #13
    ddpekks said:

    I had to laugh....
    when I read your title to your post. This morning, I'm headed out the door to work and my dear husband says, "Have a good day and by the way, Happy Anniversary!". I'm like, oh crap, I thought we were married in month of April? What have I missed here? He laughed (which he doesn't do a lot of anymore) and said, "Today is our 3 month anniversay of me pooping in a bag and you packing my a$$".

    Of course, I cried all the way to work, but am so grateful we have reached this point, because I am fully aware that things could be so much worse.

    Congrats to you. Will post when he reaches his 1 year with glee!

    Deb

    Thanks Guys and Gals
    I really love this board and all who participate in it....you can almost bring a guy to tears...:)
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  • idlehunters
    idlehunters CSN Member Posts: 1,787 Member
    #14
    TMac52 said:

    Thanks Guys and Gals
    I really love this board and all who participate in it....you can almost bring a guy to tears...:)

    Hi Tom!!!!
    I am so happy to hear all is good for you. You are such a great person! You keep taking good care of yourself and I'll pray your nueropathy goes away!

    Jennie
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  • Buzzard
    Buzzard CSN Member Posts: 3,043 Member
    #15
    idlehunters said:

    Hi Tom!!!!
    I am so happy to hear all is good for you. You are such a great person! You keep taking good care of yourself and I'll pray your nueropathy goes away!

    Jennie

    TMac...good for you......
    enjoy every day buddy.....neuropathy in the grand scheme isn't a lot to deal with...My fingers are back normal and my middle 3 toes on each side will probably always be numb...Its ok though.....Great to see you again, and I understand Oh So Well about breaks from here............Love to ya bud, Buzz
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