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fatigue

scuttlebug
Posts: 59
Joined: Mar 2011

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.

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

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)

scuttlebug
Posts: 59
Joined: Mar 2011

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

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

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!!!!!!!!!

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

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
Posts: 168
Joined: Mar 2011

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's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

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
Posts: 59
Joined: Mar 2011

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

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Denise, Have you looked at the Emotional Support discussion board? If not, give it a try, you may find some ideas there to help you out. Kellie

scuttlebug
Posts: 59
Joined: Mar 2011

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

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

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
Posts: 59
Joined: Mar 2011

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's picture
allmost60
Posts: 3184
Joined: Jul 2010

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's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

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
Posts: 59
Joined: Mar 2011

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
Posts: 59
Joined: Mar 2011

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

hilde451's picture
hilde451
Posts: 229
Joined: Oct 2009

Hi Denise and everyone:

I am reading my stuff. I had my last treatment for follicular non-hodgkins lymphoma stage 4 with bone marrow involvement.
I feel the same way just darn tired and not myself at all. I just went through a scan and it was good. But I do not fee the best.
I know it is not in my head. We may never be the same. You can not tell me you get radiation and chemo then Zevalin and you should feel the same as you did.
Not in my book.
I also sit for a few hrs at a time. But have tried to walk 30 min. every other day at least.
Hilde

scuttlebug
Posts: 59
Joined: Mar 2011

dear hilde thank you for your understanding and support i am really feeling alone tonight my family doest seem to understand ileave books lying around but no one is intersted in reading them they are to busy telling me how i shoud feel i guess im really feeling sorry for myself tonight just had a huge argument with my exhusband and my daughter which is aconstant with my daughter and on the days hes off work shes worse. this seems odd talking talking on line since i have never really used a computer much thanks for listening and understang i wll pray that you will feel better. mabey in time we will both feel better let me know how you are feeling or if you need someone to talk to. denise

scuttlebug
Posts: 59
Joined: Mar 2011

dear hilde thank you for your understanding and support i am really feeling alone tonight my family doest seem to understand ileave books lying around but no one is intersted in reading them they are to busy telling me how i shoud feel i guess im really feeling sorry for myself tonight just had a huge argument with my exhusband and my daughter which is aconstant with my daughter and on the days hes off work shes worse. this seems odd talking talking on line since i have never really used a computer much thanks for listening and understang i wll pray that you will feel better. mabey in time we will both feel better let me know how you are feeling or if you need someone to talk to. denise

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

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)

scuttlebug
Posts: 59
Joined: Mar 2011

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's picture
allmost60
Posts: 3184
Joined: Jul 2010

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's picture
COBRA666
Posts: 2413
Joined: May 2010

AMEN TO THAT. JOHN

Michele23
Posts: 168
Joined: Mar 2011

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's picture
COBRA666
Posts: 2413
Joined: May 2010

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)

Michele23
Posts: 168
Joined: Mar 2011

Isn't almost scary?I even went so far as ask my docs if maybe I was coming down with Alzheimer's.I do everything I can to keep my mind working.Many times my brain and hands don't connect and what I want to say isn't what I write or say.Makes me crazy!!!!

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Michele,
I think what bothers me the most is that I can't handle multi-tasking like I use to. I was like the lady on the t.v. commercial holding the baby on her hip, frying the bacon and doing 10 things at one time. Now when I'm faced with a multitude of tasks I have to break it all down, think it through, and then decide which things I'm going to do and which things I'm just NOT going to do. The "NOT" list appears to be winning out more often than the "going to do" list!..ha! I also knowticed I get frustrated when someone asks me a string of questions. I'm like.."ok, start over, what was the first question?" Steve will ask me "where is this" or where is that" and I immediately go into a panic mode because I literally have to stop and focus where I've put something. In the past, I knew in a flash exactly where things were at. I'm a very organized person (thank goodness), because eventually I DO remember where things have been stored, and being organized helps BIG TIME when the memory finally kicks in. I'd be @#*! up the creek without a paddle if I didn't stay organized...ha! Now the flip side...I don't get as excited as much anymore when a crisis occurs. I use to get all crazy and hyped out when the kids had a problem, or if friends were dealing with a bad situation...but not now. I don't have that sense of urgency to jump in and try to "fix" things, or be the "controller". This I "LIKE", because it finally taught me that I'm not suppose to be the "fixer", or "solver" of everyones problems in the first place. Some things people just have to take care of on their own...(DUH) after 40 years of thinking it was MY job!...ha! Anyways...the mind thing after chemo seems to affect all of us in one way or another,but it's always nice to hear others stories so that we don't feel like we are the only crazy person running around...haha!
Love...Sue...(FNHL-2-3A-6/10)

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue,
I read your post and like most of them that are more than a paragraph long I have to go back and read them again. Thats how short my memory is. Its no joking matter thats for sure. Somebody calls me on the phone and if the conversation lasts more than 10 minutes I can not remember the main reason they called. I don't know if you are that bad or not. John(FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Yes...I do find that I have to re-read things at times to fully comprehend and retain the content. Phone calls? Nope, not at all. I can still talk for hours and remember everything..(7 sisters...remember)ha! Sorry my prior post rambled..I'm a yapper..ugh!
Sue..(FNHL-2-3A-6/10)

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue,
The only way I can remember everything is if someone is listening and ask what were you ralking about when this or that was said. That triggers it. Other wise I am lost in the 50's. Its so weird I can remember stuff from when I was a little kid right down to what I was wearing,but can't remember what I had for dinner last night. John(FNHL-1-4A-5/10)

yesyes2
Posts: 592
Joined: Jul 2009

Hi,

There is an article in the new Cure mag on chemobrain, brain fog, what ever you want to call it. The article is pretty good and lists all the symptoms we have mentioned here. If you get the mag, currently the on-line issue take a look. It even brings up multi-tasking which was never a problem for me before but is now after RCHOP. Also word finding, math, reading and so much more. And it does say that the older you are the slower you seem to be at getting it back, if you do.

Leslie

Michele23
Posts: 168
Joined: Mar 2011

That's such a good magazine have been getting it for many years now.I'll look forward to my copy.So what shall we call our little group here the "space cadets",seems we are all doing the same things?Funny how the docs don't tell us these things.They just sorta give us the look when we mention this.Thanks for sharing,Michele

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

That sounds as good as any name I can think of. I remember back in the the day thats what we called the Druggies.You think maybe its a payback for some of us? LOL.

Zarx
Posts: 4
Joined: Mar 2011

I am a year and 5 months out of my last radiation treatment and before that I had 6 months of ABVD before that. When they did ABVD i was at the clinic for like 5 hours for treatments. I cant remember which part of the ABVD my doctor took me off after 4 treatments because I was showing severe nerve damage in my hands and arms. I had no idea I had problems with my memory until I started back to school last semester and now I am being treated for chemobrain. Sucks being half way through a semester in school to find out I might have to drop the classes for this semester because my grades have suffered some because I simply cant remember info for tests and such even after studying for hours and days before the tests. :( Now I am trying to get into the Brain Fittness center program here in our City at Saint Lukes. :) Hopefully they can help me.

Cobra I have the same problem as you do... I can remember everything up until I had chemo but now I have issues remembering what I did the other day or said to someone or what someone said to me. I have a friend that is a nurse and her and I hang out a lot and she would always ask me things or tell me things and then like the next day I would ask her what she was doing and she would be like. I told you what I was doing today.. and we would argue that she never told me but apparently she would tell me upwards of 4-5 times and I wouldn't remember what she told me.

scuttlebug
Posts: 59
Joined: Mar 2011

i have that problem to my ex husband had to start heping me a lot because we have a 13 year old daughter together and i dropped all child support for his help but now he blames everything on me and now my daughter does the same thing whenever i ask her if she did somthing itold her to she really gets upset becaause i cant remember my three older children laugh at me and the fatigue no o e understands ihad no one to talk to but my homrcare giver its so nice to find other people who feel like me and i know its not all in my head.thanks for being there. denise hope you can make sense out of this its so hard to think about what im writing.

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

I understand perfectly.They have the problem,not you. John(fnhl-1-4a-5/10)

scuttlebug
Posts: 59
Joined: Mar 2011

thanks for your support and understading i just felt at the end of my rope until i talked to the cancer society and they told me about this support line and going back to church with god knowing that i am not alon in feeling this way helps. denise

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Denise,
Believe me you are not alone in this battle. I think everybody on here can relate with you in some way. We have all been thru it and some still are. It doesn't matter if you have all kinds of support from your family and friends or not,although it makes it easier,you still have that alone feeling. We are going thru something that we have never experienced before. Sadly there will be thousands of others that will go thru this at some time. I looked up the number of new cases of lymphoma one time and there are thousands diagnosed every year. Remember that is diagnosed cases. There are thousands more that go undiagnosed. It is scary to say the least and also a serious condition to be in. The way you feel is normal and you will have up and down days as you go along. Just stick with us and we will give you the support you need. This is a great place to be even though not your most favorite. John(FNHL-1-4A-5/10)

scuttlebug
Posts: 59
Joined: Mar 2011

john thanks for your reply i need totalk to people who understands since the people around me dont undrtstand my exhusband acts like he thinks its no big deal and now its rubbed off on my 13 yesr old daughter and she tells me she doesnt care if im sick and argues with me all of the time they both of them tells me i can get up off the couch if i wanted to they act like i enjoy been like this whenever i used to work a lot and stayed active. mabey your right they need the help or mabey god. denise

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Denise,
Just wondering how things are going for you today. Keep hanging in there with us. You do not need people that do not understand you being around you. Like i was saiyng before they will make you worse with the way you feel about yourself. Its awful how people do people sometimes. they treat them bad,but why? They do not understand what you are going thru and in some cases they just do not care. Sometimes its a defense mechanism that people throw up because they are scared themsrlves. I do not feel it is the case here. I do not really know you or your family so it is kind of difficult to tell one way or the other at what is going on here. Just stick with us and we will see you thru this because everyone of us has been thru it with the diagnosis and treatments. Take care,John(FNHL-1-4A-5/10)

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Well said John! Kellie

miss maggie
Posts: 929
Joined: Mar 2010

Hello Denise,

I hope you are holding up considering your lack of support from those around you.

As far as your 13 year old daughter. Perhaps she is in denial, and unable to cope with your DX. 13 is a very rough age anyway, but still I wish eventually she will understand. Sadly to say, the teens is a terrible time for everyone around them. Even in the good times. They are completely absorbed with themselves.

I received treatment of Rituxan in Dec 2009. The onclology department had the most wonderful social worker. Is there a social worker available to you?

Please always post your thoughts and fears. We are hear for you.

Love Maggie

truckingalong
Posts: 444
Joined: Aug 2010

Your thoughts ring true for me. I am learning to think positive when I wake up. My goal is to get out of bed sooner and earlier rather than feeling "lackadaisical". Yes, wake up with gusto!! Like John, I say amen.

Hugs,
Liz

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