Fatigue

Jen28 · May 2006

I recently finished my tenth cycle of FOLFOX for stage IIIA colon cancer. (Only two left! Yay!) It feels like the fatigue I feel is getting worse. I sleep 12 hours every night, and today is the first day since my last chemo (last Fri., Sat., Sun.) that I haven't woken up still feeling tired. I talked to a nurse practitioner about fatigue a few weeks ago, and she said it's fine for me to basically do nothing for the first week after chemo, and then to try to get a little more activity in the next week. I'm young (29) and normally very busy, so it drives me a little nuts to have such little energy. Guess I'd just like to hear about what other people's experiences with fatigue have been like. Does anyone else spend half their life sleeping? :P What kind of exercise do you do, if any?

Also, I'd love to know how long it was before the majority of the fatigue went away after chemo.

Thanks,
Jen

rthornton · May 2006

Hi Jen.

When I was diagnosed with cancer (one year ago today, at age 35 which I guess make me kinda young for a cancer patient, even if still a few years older than 29) I didn't know what to expect from chemotherapy. Intense fatigue and excessive diarrhea were my main side effects. There were days that I did not get out of bed until after lunch time, and even then I was tired. I started getting my energy back a month or so after stopping 5FU (I never really completed the treatment, since I went into remission after six cycles and the diarrhea was so bad, we stopped 5FU after only eight of twelve cycles), and am still in what I think of as recovering. I only mean that I still have days where my energy seems low. But most days are good. I do housework, exercise on the elliptical trainer, I'm leaving Monday on a three-week vacation. So it does get better.

Best wishes with your recovery ....

Rodney

JADot · May 2006

Hi Jen:

I was stage IIB at 39. Prior to getting cancer I was the healthiest and the most active amongst all of my friends. I used to think nothing of riding (bicycle) a double century (200 miles with 8,000 ft of climb) over a weekend.

Well, I am now on FOLFOX, done 6/12 and fatigue has slowed me donw too. So you're definitely not alone.

You see the chemo drugs really is kind of an indiscriminant fast-dividing-cell-killer. So it affects our bodies profoundly. Combine that w/ not being able to eat well due to nausea, you've got the burning the candle at both ends thing.

I've just learned to listen to my body - if it says it wants to sleep 12 hours a day, then let it. I think the best thing we can do is to honor our bodies needs to cope with the treatments. I sleep about 10 hours myself a day and am tired all the time still.

Another thing - our immune system really only repairs and recovers when we sleep. So sleep is an incredibly important path to stay healthy. Sleep is nature's gift of life and health, so while we've got a really good excuse to indulge, let's do it

Exercise - I walk and bike when I can. It's hard to bike with tingly hands and numb face sometimes, but walking always works for me.

Best of luck in your fight Jen.

LiveSTRONG, SleepSOUND and Thrive!

JADot

Susanbm · May 2006

I am also Stage III. I was on FOLFOX & finished my chemo in October, 05. Your routine sounds very similiar to mine & I definitely slept the hours away. I'm not quite as young (46) but prior to my diagnosis I was very active. Unfortunately,even now, I'm not a 100% of my energy level. While I am NED, the chemo has wrecked havoc on my body and it is taking more time than I would like to recover. On the bright side, I am aware of feeling stronger as the weeks go by so I am hopeful of a full return to my previous activities. Each person is different so I would just keep doing what you are doing and deal with each issue as it arises. God Bless you!

crazylady · May 2006

Hi Jen,
I finished 12 sessions of Folfox about 3 weeks ago and will have scans next week. I am still extremely exhausted. I go to sleep earlier than I ever have, get up and take my kids to school and then come home and go back to bed. Some days I don't get up until after noon. It is very frustrating because I am in the middle of moving and I'm not getting anything done. From what I've been told it's perfectly normal to be fatigued while on chemo.
Jamie

lfondots63 · May 2006

Hi Jen,

Like the rest of the posts the fatigue is the worst. I have 4 kids and work full time still so when I get tired it is almost like my body shutting down or a light switch being turned off. I take naps sometimes and go to bed early. On weekends I try to take it easy. Like JADot said, listen to your body. If it says sleep then try to do it. Try to eat well too. That helps. I have started eating a lot of fruits and veggies. Protein is good to. Your body is just so wrung out it doesn't know what to do. HUGS and know that you are not alone in this.

Lisa

debralla · May 2006

lfondots63 said:
Hi Jen,

Like the rest of the posts the fatigue is the worst. I have 4 kids and work full time still so when I get tired it is almost like my body shutting down or a light switch being turned off. I take naps sometimes and go to bed early. On weekends I try to take it easy. Like JADot said, listen to your body. If it says sleep then try to do it. Try to eat well too. That helps. I have started eating a lot of fruits and veggies. Protein is good to. Your body is just so wrung out it doesn't know what to do. HUGS and know that you are not alone in this.

Lisa

Hello Jen
I had my tenth treatment two weeks ago . And I am still so very tired .Just think only two more to go .Hang in there !! You can do it !!
TAKE CARE AND GOD BLESS.
Debra

pink05 · May 2006

It is funny what chemo can do to you. You can feel great one day then be totally wiped out the next. This week, my dad, who will be starting his 6th cycle of chemo seemed so energetic. I was so happy to see him doing the things he loves to do. Then, today, he was so tired. I went to his house and saw him laying down, which I rarely see him do. It was somewhat discouraging. But I just have to remind myself that he is not going to be quite 100% each day. I feel that he has been blessed to be able to perform his routine activities (i.e., mowing the lawn, painting, working in his garden) while on chemo at 76 years of age! Just hang in there. It may take some time, but you'll regain your strength and energy. Your in the homestretch!!!

God bless,

-Lee-

Jen28 · May 2006

Thank you for the replies! It helps to know that what I'm feeling is normal (and it definitely helps to know that I only have two more treatments to go).

cindybob · May 2006

Dear Jen,
I didn't see that anyone else did this, but I had a good friend also going through Chemo for hepatitis, demand that I get on antidepressants. I was so tired that I didn't care and I was so skinny. I took remarin for a few months. It made me eat, which helped my fatigue, yada yada yada. But still, it took what felt like forever at the time. I do not remember exactly how long. I know alot of people do not want even MORE chemicals, but I swear, I do not think that I would have survived without the Remarin.
Cindybob

NanD · May 2006

You are entering the toughest phase of FofFox treatment. I did that treatment too and it was supposed to be finished in 6 months but ended up taking 8 months. The last treatments could not be given on the two week schedule because my bone marrow was so suppressed. I took injections to keep up my red cells, gave myself injections at home to boost my white cells, and had to just wait on the platelets to rebound. Anyway, the last treatments had me TIRED-it was like getting the flu and the recovery was so much slower than in the first part of my treatments. My chemo nurses and my oncologist just kept me focused on getting through and not trying to do any more than I could. Give yourself a break and just be tired. Tired is not even the right word for it, fatigue doesn't quite explain it either, but at any rate, just take it easy. Now the good news-you're almost there! And this stuff works! So many of us on this board have fought our way through the chemo and now are living with no disease and a long future ahead. As for the exercise, I was diligent about walking and riding my bike, even using weights for the first two thirds of my treatment. Toward the end I would walk a little in the off weeks...it gets hard. Don't push yourself, your body is now doing all it can do.

jsabol · May 2006

Hi Jen, Hang in there; I was stage III, 6 months of 5FU and leuco, finished up in July of 04. I JUST found a journal I was keeping during chemo to track my symptoms, and EVERY entry after 4 weeks started with "FATIGUE". My first onc said that chemo would be a breeze ..."chemo lite, drive in, drive out, go home and cook dinner". I wasn't cooking dinner on Friday nights BEFORE chemo!
I switched oncs, took a leave of absence from work, and devoted myself to taking care of me and the things my kids needed most: food, love and encouragement. I got inordinate joy out of tending to my garden or sleeping on the deck.
I am now nearly 2 years out from chemo, No Evidence of Disease, back at work and feeling almost like my old (now 55 yo) self. After about 6 months I began to feel much better, exercising regularly and put back some of the 20 lbs I lost (didn't have that much to spare). Some mornings I remember lying in bed and tracking the cracks in the ceiling; one writer described it as "feeling Velcro'd to her bed". It does get better; stay the course and get this all behind you. Judy

livin · May 2006

Hi Jen, I finished Chemo in August 2005 still had fatigue until about a month ago when all of a sudden my labs came back with my Ferrtin level being low from not eating well during Chemo. Had to get 14 infusions of ferrentin(sp) which was given twice a week. Just finished Thursday of this week, Doctor said if my levels were not at 400 I will have to continue this treatment. Had blood drawn Thursday waiting for results. Did feel and had more energy once treatment started but lately back to being a little tired again, not as bad as before. My appetite really decreased during chemo had what you call Pica craved Feta cheese and vanilla chocolate strawberry ice cream sandwiches daily. Did not even like my favorite chicken wings. Glad appetite returned Feta cheese was killing me health wise and finacially 4 dollars for a 8oz block (chunk) at 3 blocks a day. Gain 20 pounds and blood pressure was up from the salt in the cheese. What a craving huh. I know it sounds crazy but it happened.

Fatigue

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