fatigue

scuttlebug
scuttlebug Member Posts: 59
in Lymphoma (Hodgkin and Non-Hodgkin) #1
i have fatigue and my cancer has been in remission for two years i take a small walk every das and i try to eat right but my appitite is not that good anyone else have this problem. any help would be apprceciated.
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Comments

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #2
    Fatigue
    Scuttlebug,
    I do not know how long the fatigue last ,but we are all individual and I am sure that has a lot to do with it. I have been in remission for 6 months and still have tiredness. It has gotten better over the months. There are days when I can go 18 hours and others only 13 hours before I feel as though I am wore out. I do walk about a mile daily. Appetite is good. What was your diagnosis? John(fnhl-1-4a-5/10)
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #3
    fatigue
    Hi, I have been in remission for about six months now, I'm working and trying to walk 30 minutes a day. I always feel worn down. Unfortunately the drugs that heal us, change us. My Onc told me that this will be the new you. I really never loss my appetite, I would mention that to your Doc, make sure that you are taking a multivitamin. Good luck,and stay well Vinny
  • Michele23
    Michele23 Member Posts: 168
    #4
    Loss
    I personally don't think it ever comes back.Like a few others here said it's the new you so to speak.When I push my body too hard I find myself crashing for a couple days after.Used to be so strong& tough!!Just another thing to get used to.
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #5
    Michele23 said:

    Loss
    I personally don't think it ever comes back.Like a few others here said it's the new you so to speak.When I push my body too hard I find myself crashing for a couple days after.Used to be so strong& tough!!Just another thing to get used to.

    I agree
    I'm like everyone else, my new normal doesn't have the best stamina, although I do believe it's what we get used to. I am going to try to walk my dogs every day while I can. I am going to be starting treatments and SCT soon and won't be able to do much.

    I think I am just going to have to do my best and be happy with that.
  • scuttlebug
    scuttlebug Member Posts: 59
    #6
    COBRA666 said:

    Fatigue
    Scuttlebug,
    I do not know how long the fatigue last ,but we are all individual and I am sure that has a lot to do with it. I have been in remission for 6 months and still have tiredness. It has gotten better over the months. There are days when I can go 18 hours and others only 13 hours before I feel as though I am wore out. I do walk about a mile daily. Appetite is good. What was your diagnosis? John(fnhl-1-4a-5/10)

    my diagnosis follicular
    my diagnosis follicular lymphoma stage four with fifty percent in the bone marrow.
  • scuttlebug
    scuttlebug Member Posts: 59
    #7
    Michele23 said:

    Loss
    I personally don't think it ever comes back.Like a few others here said it's the new you so to speak.When I push my body too hard I find myself crashing for a couple days after.Used to be so strong& tough!!Just another thing to get used to.

    Loss
    dear Michele how do you cope? I was like you strong now whenever I get up I find myself sitting for two or three hours before I even feel like moving, everyone around me thinks that its just in my head, and no one understands how tiered I really am.


    ~denise
  • scuttlebug
    scuttlebug Member Posts: 59
    #8
    Michele23 said:

    Loss
    I personally don't think it ever comes back.Like a few others here said it's the new you so to speak.When I push my body too hard I find myself crashing for a couple days after.Used to be so strong& tough!!Just another thing to get used to.

    Loss
    dear Michele how do you cope? I was like you strong now whenever I get up I find myself sitting for two or three hours before I even feel like moving, everyone around me thinks that its just in my head, and no one understands how tiered I really am.


    ~denise
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #9
    Me too...
    I have follicular NHL stage 3(no bone involvement). I finished chemo on Dec 14th and I also deal with fatigue. Some days are better than others, but at some point "every" day there comes that moment when I say..."thats it...I'm done...can't do another thing"!!! The "new normal" is definetely something I will have to learn to accept...but right now I'm still trying to fight it, but not winning the battle...ha! It's hard to accept, especially after being healthy and strong for the majority of my life. We just have to take it "one day at a time". Best wishes..Sue (FNHL-2-3A-6/10)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #10
    scuttlebug said:

    Loss
    dear Michele how do you cope? I was like you strong now whenever I get up I find myself sitting for two or three hours before I even feel like moving, everyone around me thinks that its just in my head, and no one understands how tiered I really am.


    ~denise

    Tiredness
    Denise,
    I am not going to accept this tiredness as a new normal. At least not yet!!!! We all were sitting idle for months while in the chemo and that too will take its toll. I think you must do it gradually,but over time working back up to the way we were and we hopefully will get pretty darned close. Hope thats not wishful thinking. I don't think so though. I too am follicular Grade 1 Stage 4 with a very small portion in the bone marrow,but still enough to be called Stage 4. NHL is not staged like the other cancers. No matter what the stage its all treated the same from what I hear. Do you recall what Grade you are? I know it is frustrating,but we just have to work,work and work at it. John(FNHL-1-4A-5/10)
  • scuttlebug
    scuttlebug Member Posts: 59
    #11
    allmost60 said:

    Me too...
    I have follicular NHL stage 3(no bone involvement). I finished chemo on Dec 14th and I also deal with fatigue. Some days are better than others, but at some point "every" day there comes that moment when I say..."thats it...I'm done...can't do another thing"!!! The "new normal" is definetely something I will have to learn to accept...but right now I'm still trying to fight it, but not winning the battle...ha! It's hard to accept, especially after being healthy and strong for the majority of my life. We just have to take it "one day at a time". Best wishes..Sue (FNHL-2-3A-6/10)

    a hard pill swallow
    Sue thanks for the best wishes the new me is a hard pill to swollew but it is good to talk to people that understands sometimes i think my doctors don't understand good luck on your battle i hope yours does not spread i have started back into church to strenghen my faith and to have a church family.
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #12
    scuttlebug said:

    a hard pill swallow
    Sue thanks for the best wishes the new me is a hard pill to swollew but it is good to talk to people that understands sometimes i think my doctors don't understand good luck on your battle i hope yours does not spread i have started back into church to strenghen my faith and to have a church family.

    Forgot to mention...
    Try to remember that the way we "think"..(positive versus negative), plays a huge part in gaining back our strength...(mentally and physically). We should worry less about "how fast" we recover and focus more on a combination of things. Each day that feels like a good day, we should embrace that day with gusto and not waste it. Our bodies will tell us if we are doing too much, so we just need to listen to it. I find I can still do almost everything I use to do prior to cancer/chemo, just in smaller doses. Instead of cleaning the WHOLE house in one day, I now break it down to a few little chores each day over the course of the week. If we tell ourselves day in and day out that we are tired, or sad, or mad, then eventually we end up being tired, sad and mad EVERY day. Gotta wake up and start the day out on a positive note and then use common sense choices on what things we do during that day. We have to find a balance and a manageable plan to deal with the madness cancer has brought into our daily lives. We also have to remember that it's ok to have a bad day now and then...we just can't stay in those bad days for too long. All of this is easier said than done,and thats why I just take it one day at a time...sometimes...one hour at a time. Didn't mean to preach a sermon here...just sharing my "get through the day" thoughts while living with cancer.
    Take care and keep the faith...Love, Sue (FNHL-2-3A-6/10)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #13
    allmost60 said:

    Forgot to mention...
    Try to remember that the way we "think"..(positive versus negative), plays a huge part in gaining back our strength...(mentally and physically). We should worry less about "how fast" we recover and focus more on a combination of things. Each day that feels like a good day, we should embrace that day with gusto and not waste it. Our bodies will tell us if we are doing too much, so we just need to listen to it. I find I can still do almost everything I use to do prior to cancer/chemo, just in smaller doses. Instead of cleaning the WHOLE house in one day, I now break it down to a few little chores each day over the course of the week. If we tell ourselves day in and day out that we are tired, or sad, or mad, then eventually we end up being tired, sad and mad EVERY day. Gotta wake up and start the day out on a positive note and then use common sense choices on what things we do during that day. We have to find a balance and a manageable plan to deal with the madness cancer has brought into our daily lives. We also have to remember that it's ok to have a bad day now and then...we just can't stay in those bad days for too long. All of this is easier said than done,and thats why I just take it one day at a time...sometimes...one hour at a time. Didn't mean to preach a sermon here...just sharing my "get through the day" thoughts while living with cancer.
    Take care and keep the faith...Love, Sue (FNHL-2-3A-6/10)

    Oh,Yea
    AMEN TO THAT. JOHN
  • JoanieP
    JoanieP Member Posts: 573
    #14
    scuttlebug said:

    my diagnosis follicular
    my diagnosis follicular lymphoma stage four with fifty percent in the bone marrow.

    energy
    It wil be 2 years since I had chemo on July 6,2009. I have much more energy than I did the first six months. My oncologist had my vitamin D level checked. It was 32(low normal) and since taking 100,000 IU's a week my energy is really good. My Dr. wants it to be 60. It was 42 a couple of weeks ago. This might help you Vinny, Sue and Scuttlebug. I had follicular stage 3 NHL. Sue I like your attitude. I am not planning on leaving my husband, adult children and grandchildren for 20 or 25 more years. I am praying for a cure!!! I have things to do!!!!!!!!!
  • scuttlebug
    scuttlebug Member Posts: 59
    #15
    COBRA666 said:

    Tiredness
    Denise,
    I am not going to accept this tiredness as a new normal. At least not yet!!!! We all were sitting idle for months while in the chemo and that too will take its toll. I think you must do it gradually,but over time working back up to the way we were and we hopefully will get pretty darned close. Hope thats not wishful thinking. I don't think so though. I too am follicular Grade 1 Stage 4 with a very small portion in the bone marrow,but still enough to be called Stage 4. NHL is not staged like the other cancers. No matter what the stage its all treated the same from what I hear. Do you recall what Grade you are? I know it is frustrating,but we just have to work,work and work at it. John(FNHL-1-4A-5/10)

    fatigue
    i am grade 2 ihad two treaements in 4 years my last treaatment was rchop followed by two years of maitenence of rituxin,one every six month.
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #16
    scuttlebug said:

    fatigue
    i am grade 2 ihad two treaements in 4 years my last treaatment was rchop followed by two years of maitenence of rituxin,one every six month.

    Question...
    Hi Denise,
    May I ask how you did with your maint rituxan? I started my first R maint on Feb 14th, and thus far haven't experienced anything concerning or bothersome. I will get my R infusion once every 2 months for 2 years. Is there an accumulative affect anywhere along the way that I should be aware of? Any information you'd care to share would be very much appreciated. I'm grade 2 also, but had 6 rounds of CVP-R instead of R-Chop. I'm happy to hear you are still in remission after the Rituxan...gives me great hope for myself and others that are just starting our maint program.
    Thanks...Love..Sue (FNHL-2-3A-6/10)
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #17
    allmost60 said:

    Question...
    Hi Denise,
    May I ask how you did with your maint rituxan? I started my first R maint on Feb 14th, and thus far haven't experienced anything concerning or bothersome. I will get my R infusion once every 2 months for 2 years. Is there an accumulative affect anywhere along the way that I should be aware of? Any information you'd care to share would be very much appreciated. I'm grade 2 also, but had 6 rounds of CVP-R instead of R-Chop. I'm happy to hear you are still in remission after the Rituxan...gives me great hope for myself and others that are just starting our maint program.
    Thanks...Love..Sue (FNHL-2-3A-6/10)

    Maintenance
    Sue, I sincerely hope you don't go through what I am with the rituxan not holding it off and having the progression. I did maintenance for a long time the first time and quite a while this last time.

    Never did have side effects from it.

    Take care sweetie,
    Beth
  • scuttlebug
    scuttlebug Member Posts: 59
    #18
    allmost60 said:

    Question...
    Hi Denise,
    May I ask how you did with your maint rituxan? I started my first R maint on Feb 14th, and thus far haven't experienced anything concerning or bothersome. I will get my R infusion once every 2 months for 2 years. Is there an accumulative affect anywhere along the way that I should be aware of? Any information you'd care to share would be very much appreciated. I'm grade 2 also, but had 6 rounds of CVP-R instead of R-Chop. I'm happy to hear you are still in remission after the Rituxan...gives me great hope for myself and others that are just starting our maint program.
    Thanks...Love..Sue (FNHL-2-3A-6/10)

    rituxan
    the first time i had a reation to it they stopped it and gave me benadril after that i had the benadril before the rituxn and then it was fine they had to slow me down so it took about five hoursto finish the infunsion Denise
  • scuttlebug
    scuttlebug Member Posts: 59
    #19
    allmost60 said:

    Question...
    Hi Denise,
    May I ask how you did with your maint rituxan? I started my first R maint on Feb 14th, and thus far haven't experienced anything concerning or bothersome. I will get my R infusion once every 2 months for 2 years. Is there an accumulative affect anywhere along the way that I should be aware of? Any information you'd care to share would be very much appreciated. I'm grade 2 also, but had 6 rounds of CVP-R instead of R-Chop. I'm happy to hear you are still in remission after the Rituxan...gives me great hope for myself and others that are just starting our maint program.
    Thanks...Love..Sue (FNHL-2-3A-6/10)

    rituxan
    the first time i had a reation to it they stopped it and gave me benadril after that i had the benadril before the rituxn and then it was fine they had to slow me down so it took about five hoursto finish the infunsion Denise
  • Michele23
    Michele23 Member Posts: 168
    #20
    COBRA666 said:

    Oh,Yea
    AMEN TO THAT. JOHN

    Fatigue and Mind
    Being at stage 3 follicular I've done tons of Rituxan over the years.Mine being every 6 months.Truly don't think we ever gain back.Sue it's like you took the words from my mouth.Used to go morning till night working.My biggest problem is with memory.I can not think clearly anymore or remember things.Everything must be written down so I don't forget or I'll have a flashback a week later of something I forgot to do DA!!!!
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #21
    Michele23 said:

    Fatigue and Mind
    Being at stage 3 follicular I've done tons of Rituxan over the years.Mine being every 6 months.Truly don't think we ever gain back.Sue it's like you took the words from my mouth.Used to go morning till night working.My biggest problem is with memory.I can not think clearly anymore or remember things.Everything must be written down so I don't forget or I'll have a flashback a week later of something I forgot to do DA!!!!

    FATIGUE AND THE MIND
    Michele,
    Your post is is ditto for me as well. The short term is gone.I will have a flashback and think something was said today and it was actually last week. John(FNHL-1-4A-5/10)

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