Life after CRC ... dealing with post-chemo side effects

Options
joriew
joriew Member Posts: 2
edited March 2014 in Colorectal Cancer #1
Hello to all!
I need some help. I finished chemo (FOLFOX) in September 2009, and while the chemo killed the disease, it's left me with a few souvenirs: neuropathy in hands/feet, fatigue (STILL), and a frustration that others can't understand why i'm not 'back-to-normal' by now. I mean, like i'll ever be 'normal' again?!?!

So i'm wondering, any hints about the best way to move on after chemo, and helping others get to know the 'new' me?

Comments

  • karguy
    karguy Member Posts: 1,020 Member
    #2
    Options
    Chemo
    I finished chemo in june 08.My hands went back to normal in about 2 months,I didn't have a problem with my feet,for the fatigue I have been on iron pills for just over a year,and my energy is back to about 70%.I may get better with time,but I won't hold my breath because I'm doing 100% better than I was in 08,and I can do what I did before,I just need to rest alittle more.Talk to your doctor about your sypmtoms,and people you know will probably treat you alittle differant,but maybe not.good luck I hope you get better.
  • Kerry S
    Kerry S Member Posts: 606 Member
    #3
    Options
    Takes a while
    The last chemo I had was 12/08. I think I am now about 95% there. What is left I just deal with. It is better then being dead. Try to get all the exercise you can handle. Your body has a lot of rebuilding to do.

    Some day, many years from now, people will say "They really did that crap to people that just had cancer". For now we are just stuck with it.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #4
    Options
    Kerry S said:

    Takes a while
    The last chemo I had was 12/08. I think I am now about 95% there. What is left I just deal with. It is better then being dead. Try to get all the exercise you can handle. Your body has a lot of rebuilding to do.

    Some day, many years from now, people will say "They really did that crap to people that just had cancer". For now we are just stuck with it.

    jori.........
    I finished the same treatment around May 2009 and I still have tingling feet , the hands were but have almost returned to normal completely. All of my joints, hips, elbows knees are all reallll sore and stiff, and I can't ride more than 2 hours without having to get out and stretch and loosen up. It feels as if all the synovial fluid ( I think thats what its called) is gone and my joints are simply rubbing together on dry sockets...I don't have much energy but seem to do ok with what I have.. I can really tell that I feel as if I have aged about 20 years in aches and pains caused I am pretty sure from the chemo..But the alternative was not in my plan.......so I'll make due.......Tell your friends to come in here and ask a few questions about how we feel after all that is done. They may get a new perspective on the way they look at you....Love Hope and Stamina........Buzz
  • ann2008
    ann2008 Member Posts: 118
    #5
    Options
    post chemo
    I also finished Folfox in May 2009. I had a reaction to oxy with the 7th treatment. Since then I have had the neuropathy(anywhere from just tingling to pain in fingers and feet) I am back to work as an icu nurse on weekends= 2 12hr shifts and it is really taking a toll. It takes me a few days to recover after my weekends. Anyway I have had some improvement in the neuropathy. This past weekend my feet did not hurt as much as they usually do after being on them for at least 8 of the 12 hrs. So I am hoping for more improvement. If not like most have already said "It beats the other option". I tend to say I'm ok alot when people ask me how I am, or to my friends I say I am just tired, can't feel my feet a lot of the time, get short of breath easily. That way the ones that matter really know how I feel. Actually they are the ones that will say "Well you know that it will just take time, after all you had chemo and your body needs to recuperate". Just because you look ok, no hair loss for me, I don't look sick. Anyway I will stop here. It will get better but never the same. Keep in touch with us. Please. Ann
  • 1survivor010
    1survivor010 Member Posts: 8
    #6
    Options
    Chemo After Effects
    I can relate to being tired at times after being off chemo since March of 2009 and prior to that I was on chemo for 22 sessions with Folfox,Vectibix and Oxaliplatin in 2008.I have been told that the steroid I was on during the chemo could have caused my joint stiffness and pain.If I go to the gym and exercise I suffer with numbness in my fingers and toes caused by the Oxalipatin. I still have a reaction to the cold with my hands and feet, but its a small price to pay for a cure and everything else that I went through.
    Dave
  • ron50
    ron50 Member Posts: 1,723 Member
    #7
    Options
    forget cancer it's about surviving survival
    It is not easy surviving survival. I had my last hit of chemo for cancer in nov 1998. I am now taking a chemo drug ,methotrexate,to try and overcome long term auto-immune effects of the original chemo. I had no neuropathy after cancer I now have neuropathy in both feet lower legs and left hand. In my case it's permanent and the feeling won't come back. I knew when i beat cancer that there would be a price to pay. You can't expect to be the same person after cancer. If you are then it is a magic bonus. If everything doesn't work the same after cancer ,then so what,learn to live with it. It has toughened me a lot and I don't mean made me hard and insensitive,I've just learned to go with the flow. Like what horrible things can life do to me ,I've surived cancer, a good day is when nothing REALLY bad happens. Ron.
  • Patteee
    Patteee Member Posts: 945
    #8
    Options
    I have been done with chemo
    I have been done with chemo just over a year. The neuropathy is still an issue, especially in my left hand. The fatigue is still an issue- I still have black circles under my eyes. I think the most profound thing is the mental and emotional lags. I had one co-worker comment that I had changed, that I wasn't the same. I used it as an opportunity to remind her that I had been through chemo hell and back and some things were permanent.

    All in all, I am getting better. I am able to work a full 8-10 hour day without a nap. I don't do a lot when I get home, but I am getting there. I no longer cry when I think about the lost dream of finishing my doctorate- hey even my oncologist said on Monday to give it more time.

    I am 2 years older than I was at dx with colon cancer. Between cancer, chemo and aging, I don't think I will ever bounce back to "normal" and with time and exposure to the new me, people will get it and understand. And your people will to!
  • coloCan
    coloCan Member Posts: 1,944 Member
    #9
    Options
    Patteee said:

    I have been done with chemo
    I have been done with chemo just over a year. The neuropathy is still an issue, especially in my left hand. The fatigue is still an issue- I still have black circles under my eyes. I think the most profound thing is the mental and emotional lags. I had one co-worker comment that I had changed, that I wasn't the same. I used it as an opportunity to remind her that I had been through chemo hell and back and some things were permanent.

    All in all, I am getting better. I am able to work a full 8-10 hour day without a nap. I don't do a lot when I get home, but I am getting there. I no longer cry when I think about the lost dream of finishing my doctorate- hey even my oncologist said on Monday to give it more time.

    I am 2 years older than I was at dx with colon cancer. Between cancer, chemo and aging, I don't think I will ever bounce back to "normal" and with time and exposure to the new me, people will get it and understand. And your people will to!

    Don't know which is worse,
    dealing with current amd future chemo problems,( such as neuropathty in both feet,chemo brain, lack of energy ,etc)or learning to live with and deal with ostomy bag for the rest of my life . In any event, I'd be dead without either so for me, there wasn't much of a choice -do as my doctors suggested.(I cry every time I see my surgeon as he saved my life with his magical hands). No matter what our treatments do to us, at least we're still here to complain if we want....Best of luck to all.....Steve
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #10
    Options
    Joriew
    Congrats on being done with chemo!

    Yep. I completed 12 tx's of FOLFOX mid August of '09 and still have the neuropathy but I've noticed it IS getting better. Sometimes, if I'm not using my hands, I don't feel anything. I had a 'sonic boom' in my feet if I bent my neck down and that is GONE.

    I agree with Buzzard (Clift) about the aches and pains. I'm one of the oldest on the forum, 59, and I had never had aches and pains until after chemo. My hips, back, thumb joint and right knee are my problem areas, tho it's not every day. Some nights I wake numerous times because of aches and pains. A couple of aspirin fixes me right up, tho.

    Hang in there kiddo! I don't think anyone has faced their mortality and not changed in some way.

    Diane
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #11
    Options
    Hi Joriew
    Glad to hear you are finished with the chemo. Sorry to hear you are dealing with after effects of it. For me, cancer has been a series of "new normals" that change as treatment or status changes. It is something that we all have to deal with as best we can. I have found that part of it is acceptance of having these new normals. Some people may get stuck thinking they will be like they were pre-cancer. Maybe some people DO get to be like they were pre-cancer, I know that is not my case and I am OK with it. I can't change it if I wasn't OK with it so why fight it?

    As far as your question about how other people can get used to the new you, they likely have no idea at all what you have been through so they have no point of reference. To them, this may be like it was a mere inconvenience in your life...like breaking your big toe or something. I'm not sure how I would handle them. Possibly I would tell people that this is your "new normal" and that cancer often changes one's life forever.
    Maybe they might understand it then?
    -p
  • lcarper2
    lcarper2 Member Posts: 635 Member
    #12
    Options
    PhillieG said:

    Hi Joriew
    Glad to hear you are finished with the chemo. Sorry to hear you are dealing with after effects of it. For me, cancer has been a series of "new normals" that change as treatment or status changes. It is something that we all have to deal with as best we can. I have found that part of it is acceptance of having these new normals. Some people may get stuck thinking they will be like they were pre-cancer. Maybe some people DO get to be like they were pre-cancer, I know that is not my case and I am OK with it. I can't change it if I wasn't OK with it so why fight it?

    As far as your question about how other people can get used to the new you, they likely have no idea at all what you have been through so they have no point of reference. To them, this may be like it was a mere inconvenience in your life...like breaking your big toe or something. I'm not sure how I would handle them. Possibly I would tell people that this is your "new normal" and that cancer often changes one's life forever.
    Maybe they might understand it then?
    -p

    cancer changes us
    period you are never what you were before most of us have lost body parts that we can't regrow. I tell everyone I am not the lady I was 8 months ago if you don't believe me follow me around for a day and judge for your self. I am alive and plan on living along time and I never did run very fast anyway. If you were in my life before I am still me just alot slower and get tired fast.If you didn't know me before it doesn't matter like me as I am or not..Life goes on and the important thing is we are alive....

    Louann
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    #13
    Options
    Kerry S said:

    Takes a while
    The last chemo I had was 12/08. I think I am now about 95% there. What is left I just deal with. It is better then being dead. Try to get all the exercise you can handle. Your body has a lot of rebuilding to do.

    Some day, many years from now, people will say "They really did that crap to people that just had cancer". For now we are just stuck with it.

    I say that all the time...
    whatever I am going through, "it is better than being dead." It hardly comforts concerned friends, but it is the truth and it comforts me. After all, I have lived long enough to see my first grandchild - very cool.
  • JR
    JR Member Posts: 139 Member
    #14
    Options
    I feel that
    I feel that the best way to move on after chemo is just that, move on. I don't think anyone, other than your spouse or caregiver, can fully appreciate what you have gone through. Be happy to be alive and deal with things as they come. Focus on the positive things in your life. It's easier said than done.

    John
  • lesvanb
    lesvanb Member Posts: 905
    #15
    Options
    a new normal
    Lots of folks have given good tips here, so I'll just add that I'm finding a new normal which is more than I was before the disease (we often hear the words "new normal" for things that are less than.) Physical exercise after treatment has been key for me to return to a normal that is greater than when I had the disease. Weightlifting and daily walking (often with poles) has allowed me to return to mild cross country skiing; something I have not been able to do in the last 7 years (I had fibromyalgia before the cancer dx). I work with a trainer so that I keep being challenged physically in the weightlifting.

    And perhaps it's all those hours spent on a toilet- poo meditation? -quien sabe- but my patience and tolerance for uncertainty and adversity has definitely increased. I don't expect others who have not been though what I've been through to get it, and they're still OK... and I'm OK. So just be yourself and enjoy the gift of life and often things work out OK - perhaps not work out as we would like to have happen, but being OK with just watching life unfold as it is.

    all the best, Leslie

    PS I still have pin and needles neuropathy in my feet (ended chemo 5/09) and still meditate frequently while on the toilet. "Clustering" is what my GI surgeon calls the poos that come in a succession for awhile.
  • nanagrandma
    nanagrandma Member Posts: 40
    #16
    Options
    lesvanb said:

    a new normal
    Lots of folks have given good tips here, so I'll just add that I'm finding a new normal which is more than I was before the disease (we often hear the words "new normal" for things that are less than.) Physical exercise after treatment has been key for me to return to a normal that is greater than when I had the disease. Weightlifting and daily walking (often with poles) has allowed me to return to mild cross country skiing; something I have not been able to do in the last 7 years (I had fibromyalgia before the cancer dx). I work with a trainer so that I keep being challenged physically in the weightlifting.

    And perhaps it's all those hours spent on a toilet- poo meditation? -quien sabe- but my patience and tolerance for uncertainty and adversity has definitely increased. I don't expect others who have not been though what I've been through to get it, and they're still OK... and I'm OK. So just be yourself and enjoy the gift of life and often things work out OK - perhaps not work out as we would like to have happen, but being OK with just watching life unfold as it is.

    all the best, Leslie

    PS I still have pin and needles neuropathy in my feet (ended chemo 5/09) and still meditate frequently while on the toilet. "Clustering" is what my GI surgeon calls the poos that come in a succession for awhile.

    I was reading the post and
    I was reading the post and am glad that i did. I just took a voluntary layoff at work because i feel i needed it physically and emotionally.I finished my chemo in May of 2008. I still get very tired at times. I work in shipping picking orders and I wonder if I will ever get back to the speed I was before the cancer. My supervisors think I should be.I try to explain going trough 2 surgeries,radiation 2 rounds of chemo wiped me out. I get the feeling that they think I'm taking the cancer excuse a little to far. I did that in 11 months and went back to work a month after. It was that or loose 28 years senority. I wish I had more time but couldn't take it. The way I'm reading this is that as far as being a cancer survivor I am normal which makes me feel pretty good. Thanks for sharing.
  • lcarper2
    lcarper2 Member Posts: 635 Member
    #17
    Options
    nanagrandma said:

    I was reading the post and
    I was reading the post and am glad that i did. I just took a voluntary layoff at work because i feel i needed it physically and emotionally.I finished my chemo in May of 2008. I still get very tired at times. I work in shipping picking orders and I wonder if I will ever get back to the speed I was before the cancer. My supervisors think I should be.I try to explain going trough 2 surgeries,radiation 2 rounds of chemo wiped me out. I get the feeling that they think I'm taking the cancer excuse a little to far. I did that in 11 months and went back to work a month after. It was that or loose 28 years senority. I wish I had more time but couldn't take it. The way I'm reading this is that as far as being a cancer survivor I am normal which makes me feel pretty good. Thanks for sharing.

    nanagrandma
    If you have long term disability ins. at work I would take it that won't knock you out of any time on the job you have built up. They can't even fire you if you are out on it. Something to look into and think about.

    Louann
  • kkkelley1
    kkkelley1 Member Posts: 22
    #18
    Options
    Chemo Leftovers
    I just hit my 5 yr marker. I'm left with neuropathy pretty severe in my feet, and chemo brain issues. Where i seem to have trouble is dealing with myself. I still fight my own battle that I can't seem to do as before at all. Im not use to having battles with feeling sad or feeling defeated at times. I'm working hard on this but, could use any encouragement or advice. THANKS
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #19
    Options
    kkkelley1 said:

    Chemo Leftovers
    I just hit my 5 yr marker. I'm left with neuropathy pretty severe in my feet, and chemo brain issues. Where i seem to have trouble is dealing with myself. I still fight my own battle that I can't seem to do as before at all. Im not use to having battles with feeling sad or feeling defeated at times. I'm working hard on this but, could use any encouragement or advice. THANKS

    Right down my alley........
    I am 55 and was in fairly good shape I thought. After dx , pre rad/chemo,surgery,post op chemo, it has all taken its toll. I am or was (just getting use to the fact) having a real hard time with health issues, simply not having any strength or stamina at all. Its like all my muscles moved out and haven't returned. I feel like the 100# weakling they all make fun of in school, and yes emotionally it really messes with ya, especially after being use to feeling like you can or could accomplish or do anything at all. I have rid my mind of the way life was....I have accepted the new normal and everything it offers, but in doing so I have found other avenues to travel, other interests that I never knew I had, and also a particular sense of being alive that only a cancer patient can ever know. So, really, I feel like even though I went through all of this, I am in a side of life that not many will ever know or get to feel, its nothing I would wish for anyone to get this disease so that they could experience this feeling, but one that going through what I went through and getting to live through this particular realm of life, I would never trade it for anything. I only wish that I had this zest or zeal for life before as I have now. Its a feeling that only we can know. Take that as solace and instead of worrying or punishing yourself for not being your old self, sit back and think of the person you have become, and use that to help yourself and to benefit others as well, only then will you realize that its not so bad after all......Love and Hope to you friend, Buzz
  • lisa06
    lisa06 Member Posts: 1
    #20
    Options
    Life after CRC
    Hi Joriew...

    I finished Chemo...3 years ago. My neuropathy lasted for almost 2 years adn while mostly gone, I still have trouble in the mornings but nothing like it used to be. As for normal?, I choose to not call myself a cancer survivor. Rather I look at it like...I was sick and now I am better. This strips the cancer of any power over me. I refuse to dwell on what I went through adn am thankful that I made it. It sounds like you are still in emotional shock. I know it sounds repetitive, but you DO get better. It does take a long time and the more you push yourself, the longer it will take. Once the neuropathy starts to get better, you mostly have to deal with the tiredness that is really the hardest to get over, I am still dealing with that one. And the dark circles under the eyes.
    My best to you...Lisa

Discussion Boards