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After treatment side effects

quadgrandma8's picture
quadgrandma8
Posts: 13
Joined: Aug 2011

I am new to this website and a fairly new rectal cancer, permanent ostomy,just finished treatment person! I am very frustrated by all the side effects and wonder how long it will take to get better or even go away at all!!! I had pre surgical simultaneous chemo/radiation---UG! and then major surgery and then did 8 of the 12 Folfox regimen. I was great--okay not great, but pain wise better when on chemo because they gave me steroids. Now that I don't have that everything in my rear hurts again and I have swelling from lack of abdominal lymph nodes. But I have been told by a nutritionist that it could be from such low levels of protein in my blood. Today I have wierd shooting pains everywhere and boy do my feet tingle and legs feel like dead weight. YES---I am so thankful to be alive and be done, but this is so frustrating!! I did just finish about 8 weeks ago and maybe I expect too much. The onc Dr. said it would take up to a year to heal from the neuropathy, but I have talked to others who still have it 3 yrs down the road. I feel like I am ranting---Sorry! Can anyone give me any encouragement here???? Okay--GO! Thanks!

Annabelle41415's picture
Annabelle41415
Posts: 4260
Joined: Feb 2009

First off, welcome to the boards. We are here to help you get through all this terrible experiences and pain. No question is too big or small. Sorry you are going through all this. I'm still dealing with neuropathy and it's been a couple years off chemo. It does get better, but mine never went away - sorry that isn't the answer you wanted. Some peoples neuropathy does go away completely or almost all the way so there is good news there. There are medicines that help with the feet and hands if you ask your oncologist. Hope you feel better soon.

Kim

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

I know exactly how frustrating you feel. With these crazy side effects some come and others go. I have had neuropathy for almost 3years and it doesn't seem to get better. I do get a prescription ointment for my feet that gives a little relief but legs and feet still like dead weight. I'm still doing chemo so my side effects are always going on. Hopefully yours will get better with time. Pray we all get better. Jeff

JBDuffy1
Posts: 3
Joined: Apr 2012

7 years out after resection and chemo. Neuropathy never went away. Weather is a big factor. Also liquid retention is weird. Oncolgyst said he has seen that. Chronic constipation. During chemo...Doc said I would either get constipation or Diareha...well i got the first one...Went on Govt study and got extra 5-FU. My brain is a mess...out on disability...was senior computer manager and now I can't keep track of my socks...I am thankful that I am here. That's all that matters....

quadgrandma8's picture
quadgrandma8
Posts: 13
Joined: Aug 2011

Woh! Sorry to hear you aren't doing well--I guess I can get on this sight and think UG! does it ever get better? And hear all the things people are dealing with, but then realize that I have side effects but maybe not as bad as the next guy.....Sorry your brain is a mess and you can't work. The nutritionist/Dr. that I go too, told me that what the drugs are doing to the nerves in my feet and hands it is also doing to the nerves going to my brain. I stopped at 8 treatments as it was getting bad. I can relate to the gut issues. When they gave me oxcylaplatin, they gave me anti nausea drugs and that backed me up like concrete for 2 days and then the 5-FU kicked in and sent me the other way. Definitely can't eat what I used too. I have noticed weather makes things hurt more! Well thanks for your input!

steved
Posts: 836
Joined: Apr 2004

Don't personally have the experience of teh neuropathy- had a bit during treatment but luckily got away without- but we all carry our scars from this journey. For me it is bowels that 7 years post op still aren't normal and now coping with pain due to recurrence. It is pretty rare to get through this whole thing without some form of on going change in our bodies and for many of us it si a matter of acceptance and adaptation.

That said you are in the difficult position of 'wait and see' and as you can see from the repsonses it is incredibly individual what happens with the neuropathy. While you have those symptoms it is about adapting how you live your life to retain the quality despite these ongoing side effects that are part of your life at present. Then if they go away you adapt back, but if not you do your best to get on with life.

I do hope for the best of outcomes for you though and will be thinking of you.

steve

quadgrandma8's picture
quadgrandma8
Posts: 13
Joined: Aug 2011

Thanks for your encouragement---I am sorry you are in pain. You have recurrence of your cancer??? They tell me I will die of heart disease or something but not rectal cancer.The thought of recurrence is probably something we all think about. Though I don't want to..They radiated, drugged and cut enough of me that you would think it should be forever gone.....but I kept asking---what are you doing to the rest of me with the radiation and chemicals???? Ug!! I wish you the best....

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

It would be the rare person who doesn't want things to get back to normal as soon as possible! A phrase you'll get used to hearing is "a new normal" and you'll hear it until one day it becomes part of your reality.
Your experience may be different than mine, but I'm thinking 2 months isn't too far out from such a big surgery. It took me---ready?---a year for things to finally settle down for my new normal. Two months post surgery, the neuropathy was severe enough that I kept mittens by the refrigerator to use when reaching in, and braiding my daughter's hair was a tearful, frustrating experience.
Now, a year later, the neuropathy is gone. Gone. The only time I'm reminded of it is when I'm in cold weather/snow. Then the uncomfortable pins and needles remind me that things have changed.
Glad to see your post and welcome~
TommyCat

quadgrandma8's picture
quadgrandma8
Posts: 13
Joined: Aug 2011

Glad to hear someone's neuropathy went away!!! Yay! there is hope... I actually had surgery August 2011. But I finished my last chemo treatment about 8 weeks ago. I am sure I am expecting too much... After surgery I had no idea how tough it would be. I expected to pop up like toast by the 3 week mark... Ha!! Was I wrong. I was off work for 10 weeks. The pain in my rear to sit didn't go away until I had steroids in my IV when they started chemo. I had to have oral steroids half way thru because the 5-Fu made my hands swell and peel so bad. I wore gloves alot at work. It was miserable, but we had a pretty decent winter for where I live (Nebraska)thanks for responding to my post-

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