Horrible fatigue and neuropathy

Jaylo969
Jaylo969 Member Posts: 824 Member
edited March 2014 in Colorectal Cancer #1
I am 2 days away from my 6th round of FOLFOX and I have not had even one good day since the last treatment. I am so horribly fatigued that I feel like I am in zombie-land. This hasn't happened before...always had 5-6 days of not feeling on top of the world, so to speak, then bounced back to an acceptable level of energy.Anyone have any suggestions for building up my energy level a notch or two?

I eat well, better then I ever have. I sleep way too much and then wake up a slug.I am by nature a high energy person. It is driving me nuts!

My oxi was reduced on my 4th treatment and all was well until the day of 5th treatment.My feet, legs & hands are now hitting the scarey stage of numbness, especially on the left side.I am getting "clumsy". I had hoped to be stronger than this and be able to complete the full 12 folfox treatments. My doctor has said that because I was stage II she would take me off of the oxi if the neuropathy got any worse.For some reason that scares me.

Can someone talk me through this? Any ideas on what I can do ( or NOT do?)

Comments

  • karguy
    karguy Member Posts: 1,020 Member
    #2
    Fatigue
    When I was getting towards the end of chemo,and radiation,all I could do was sleep,I was so tired all the time.My blood count was low,and so was my blood pressure.The doctor had me drink a glass of orange juice every day,and take iron pills every day.That helped,but I just slept when I could.The numbness went away after I finished the chemo,and radiation.And my energy level did finally come back.I hope this helps.
  • lizzydavis
    lizzydavis Member Posts: 893
    #3
    karguy said:

    Fatigue
    When I was getting towards the end of chemo,and radiation,all I could do was sleep,I was so tired all the time.My blood count was low,and so was my blood pressure.The doctor had me drink a glass of orange juice every day,and take iron pills every day.That helped,but I just slept when I could.The numbness went away after I finished the chemo,and radiation.And my energy level did finally come back.I hope this helps.

    Ditto - It sounds familiar to me.
    Ditto - It sounds familiar to me. I found myself in the same boat with the fatigue. I did sleep as my body encouraged me. Don't feel guilty. The chemo is a strong drug. You will look back and say I am glad that is over now. Please DO tell your doctor ALL of your symptoms. Write them down and carry them with you at your next visit or call and make the report. The doctor might reduce the amount you are getting. Let him/her know what your body is going through with the Numbness, clumsyness etc...
    Keep us posted.
  • coloCan
    coloCan Member Posts: 1,944 Member
    #4
    lizzydavis said:

    Ditto - It sounds familiar to me.
    Ditto - It sounds familiar to me. I found myself in the same boat with the fatigue. I did sleep as my body encouraged me. Don't feel guilty. The chemo is a strong drug. You will look back and say I am glad that is over now. Please DO tell your doctor ALL of your symptoms. Write them down and carry them with you at your next visit or call and make the report. The doctor might reduce the amount you are getting. Let him/her know what your body is going through with the Numbness, clumsyness etc...
    Keep us posted.

    Usually, the more chemo you get, the harder it hits,
    in other words, its effects are cumulative (1+1=2,+1=4+1=7,etc)My first Tx was only five doses of oxy(with Xeloda and radiation)which was about all I could take of the oxy, while second time around (now),on Folfox(after surgery) got real serious reaction after only 4th dose. Fatigue was a problem as was loss of appetite (or desire to do anything but lie in bed),neuropathy was spreading to hands, esp left (have it in feet),pain at end of jaws in mouth upon initlial chewing of food,diahreaa, avoidance of all things cold but worst of all was the shaking/freezing/fever attacks (with gasping for air at times),etc. You need to let onc know what's going on....Best of luck in your treatment.....Steve
  • thready
    thready Member Posts: 474
    #5
    Fatigue and all things Oxi
    I have finished 8 rounds of folfox treatments. Fatigue is intense as is neuropathy. My dr has extended infustion time and added more steroids, mag and calcium. That has helped somewhat with the neuropathy, but it is still raging.

    I sleep alot the first week after treatment. The second week requires daily naps and snoozing times. I also am (was) a high energy type but now I feel like a slug or sloth. The dr said the fatigue would improve after we are done but I need to remember "we are going for a cure here so need to deal with some of the side effects". She is very concerned about the neuropathy and probably will start decreasing the oxi as we do more treatments.

    Make sure you are talking to your Dr, check lab work and make sure there are no really low numbers there. Wish you did not have problems but I am thinking by the time I'm done I would have missed 8 months of my life, a small price for many more years!

    Take care
    Jan
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #6
    thready said:

    Fatigue and all things Oxi
    I have finished 8 rounds of folfox treatments. Fatigue is intense as is neuropathy. My dr has extended infustion time and added more steroids, mag and calcium. That has helped somewhat with the neuropathy, but it is still raging.

    I sleep alot the first week after treatment. The second week requires daily naps and snoozing times. I also am (was) a high energy type but now I feel like a slug or sloth. The dr said the fatigue would improve after we are done but I need to remember "we are going for a cure here so need to deal with some of the side effects". She is very concerned about the neuropathy and probably will start decreasing the oxi as we do more treatments.

    Make sure you are talking to your Dr, check lab work and make sure there are no really low numbers there. Wish you did not have problems but I am thinking by the time I'm done I would have missed 8 months of my life, a small price for many more years!

    Take care
    Jan

    Thanks Y'all
    It helps just knowing that this fatigue is not abnormal. I guess it is hard to imagine all of the side effects of chemo until you have been there / done that.

    My labs have been very good so far. So good that I was allowed to quit the iron pills since the anemia and it's cause has been addressed. Maybe it would help to go back on them.I DO keep a running list of things to ask / discuss with my doc. It is a long list this time:(

    I guess I was feeling a little frustrated last night. My Dad is on hospice and I was his caretaker for over a year...until the day before my surgery. He started running a fever of 102 last night and I am helpless to care for him because I might catch whatever he has.I have to keep reminding myself that some things I cannot change and to gracefully accept that and go on with dealing with the things I can do something about.Onward & upward!

    -Pat
  • dorookie
    dorookie Member Posts: 1,731 Member
    #7
    Jaylo969 said:

    Thanks Y'all
    It helps just knowing that this fatigue is not abnormal. I guess it is hard to imagine all of the side effects of chemo until you have been there / done that.

    My labs have been very good so far. So good that I was allowed to quit the iron pills since the anemia and it's cause has been addressed. Maybe it would help to go back on them.I DO keep a running list of things to ask / discuss with my doc. It is a long list this time:(

    I guess I was feeling a little frustrated last night. My Dad is on hospice and I was his caretaker for over a year...until the day before my surgery. He started running a fever of 102 last night and I am helpless to care for him because I might catch whatever he has.I have to keep reminding myself that some things I cannot change and to gracefully accept that and go on with dealing with the things I can do something about.Onward & upward!

    -Pat

    I am sorry
    to hear that you are having such a rough time and with your dad not being well, it must be really tough. Just wanted you to know that I will be praying for you and your dad, if you dont mind.

    God Bless
    Beth
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #8
    dorookie said:

    I am sorry
    to hear that you are having such a rough time and with your dad not being well, it must be really tough. Just wanted you to know that I will be praying for you and your dad, if you dont mind.

    God Bless
    Beth

    Beth
    Thank you for your kind words. The hospice nurse is with my Dad right now and she sent word to me "DO NOT come up here!" If it is just a virus well I was up there Saturday and he started having fever Sunday so..........

    Good wishes to you & yours also.

    -Pat
  • Kerry S
    Kerry S Member Posts: 606 Member
    #9
    I looked and felt mostly dead
    Pat,
    By the time if finished chemo/rad, I lost 25 pounds. I looked and felt mostly dead. I could not eat normal at all. I did have a very strong craving for fruit cocktail and canned peaches and was downing a can a day. One day I slept 22 hours. There is light at the end of that nasty tunnel. Do what your body wants to do.

    Kerry

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