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TMac52's picture
Posts: 358
Joined: Aug 2010

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,

tommycat's picture
Posts: 790
Joined: Aug 2011

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.

TMac52's picture
Posts: 358
Joined: Aug 2010

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

maglets's picture
Posts: 2596
Joined: Jun 2006

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


pepebcn's picture
Posts: 6352
Joined: Aug 2010

Congratulations in your stormaniversary!

Posts: 428
Joined: Jul 2011

I'm glad you returned to the boards. Us newcomers need to hear from people like you who are beating this terrible disease. Lisa

Buckwirth's picture
Posts: 1271
Joined: Jun 2010

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.


Annabelle41415's picture
Posts: 6722
Joined: Feb 2009

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.


scouty's picture
Posts: 1976
Joined: Apr 2004

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.

plh4gail's picture
Posts: 1238
Joined: Oct 2010

Im happy for you buddy! :)

huggs, gail

pete43lost_at_sea's picture
Posts: 3908
Joined: Nov 2010

glad your well. I hope your neuropathy improves, mine really has recently.
somedays I am unaware of it.


ddpekks's picture
Posts: 162
Joined: Sep 2011

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!


TMac52's picture
Posts: 358
Joined: Aug 2010

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

idlehunters's picture
Posts: 1792
Joined: Apr 2009

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!


Buzzard's picture
Posts: 3073
Joined: Aug 2008

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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