Extreme Chemo Fatigue

[Surroundedbylove]

I know there are already some posts about chemo fatigue but just wanted to check to see if anyone has some new ideas about ways to combat the fatigue. I'm currently doing FOLFOX and it was supposed to be easier to take than the chemoradiation (XELOX plus radiation) that I had before surgery but the first treatment sure zapped me of all energy. My hematocrit is fine so they know it isn't anemia - they think I'm just a person that gets severe chemo fatigue. I'm a person who is generally in good physical shape and I am not overweight. Here is what I'm trying so far:

- staying well hydrated
- walking 20 to 30 minutes at a time but trying to walk 6 hours per week
- eating the "prudent diet" (as contrasted with the Western diet) from the Harvard study to the extent my ileostomy will allow it
-naps as needed
-daily multi-vitamn plus an additional 1,000 IU of vitamin D (per oncologist's recommendation)

Any other ideas?

[Gaelen]

Honestly?
Don't try so hard to fight it and get the sleep which your body is telling you that you need.
Walking is good. Staying hydrated is good. Eating as well as you can is good.
But radiation effects are cumulative (so there is some carry-over after-effect.) And chemo takes a lot out of you.

You can fight that, or you can let your body sleep. Sleep is absolutely as important to feeling better (eventually) as walking, eating right, staying hydrated, etc. So what if you have to take naps, need more than 8 hours per night? That's part of dealing with the disease, and you should NOT expect to do everything you used to do, exactly as you've always done it while on treatment.

You're effectively wasting energy worrying about your energy level. Sleep when you need it, scale down your activities and give your body the time and rest it needs to help heal itself!

[KellyBelle]

What Gaelen said: sleep. It seems like everybody's experiences are different... I only threw up a few times (but had quite a bit of nausea), and the other side effects were tolerable (even the neuropathy during treatment). But pre-dx I probably averaged 7 hours a sleep a night and was fine. During treatment I slept at least 9-10 hours a night, with naps every afternoon.

I'm about five months post-chemo, and still haven't passed the need-a-nap everyday phase... I don't always get one, but I still sleep 9-10 hours a night. Our bodies heal and regenerate when we sleep, so if that's what you need don't fight it.

This will pass, it's just a "blip" on the screen of life and you will eventually have your energy back. My oncologist said I'll probably be around 80% (energy-wise) by June, and it will take up to a year to get back to my normal, energetic self.

Keep walking! Any exercise helps, even if you come straight home and crawl in bed.

[karenM]

I just finished round 7 so have 5 more. I am so tired MOST of the time. I went to bed about 10 last night and the phone woke me at 9:45 this morning. woke once to go potty about one am. And this is just about the whole week after a treatment. When I was talking to the Onc yesterday, she said my blood work is great and that the tiredness is cumulative so that means it could get worse. But hay sleep is good for you right? LOL I just sleep when I want to and hope the next 5 go by as quick as the first ones have. God bless

[boomer187]

I have been utilizing acupuncture treatments to help with the fatigue that I feel from both radiation and chemo. It has made a huge difference in my energy levels and has also helped to improve my deep sleeping rhythm. I'm in Vancouver Canada and our cancer agency here encourages the use of a number of eastern treatments in conjunction with the traditional 'big three' of western medicine to help to combat the side effects of chemo and radiation. I find that the weeks that I have acupuncture following my disconnect day result in greater energy and I love that!

[Surroundedbylove]

Hi boomer187,

Interesting - what day do you do the acupuncture (in relation to your disconnect day)? In Washington State insurance pays for acupuncture treatments - I'll try it!

Thanks!

[whatcomesnextdude]

I can only answer this using my chemo experience during breast cancer. I had what my oncologist called, "chemo-brain." I told him during one visit that things were just not right. I told him how tired I was, how I couldn't concentrate, how I felt like a person could say, "You! Sleep!" and I would. I also forgot everything.

He prescribed Ritalin, which I was wary of taking (on top of the hundreds of pills I already took). Oh, I want to add that I was also staying well-hydrated, sleeping, getting exercise, and ate nothing but fruit salad, and vegetarian corn dogs (in other words, I ate REALLY healthy).

I took Ritalin, and it was like the fog was lifted from my world. I had more energy, more concentration, and better function.

Since then, I have switched to Provigil (I only take it twice a day). It's not quite as big of a boost to my energy level, but I don't need a huge boost any more.

Again, I have no idea if this is valid in the colon cancer world or not......is it?

[justsing]

Let us all remember that this stuff is POISON!!!!

Chemo is the opportunity for us to willingly and gratefully allow ourselves to be poisoned in order to achieve a higher purpose.

Fatigue is one of the hardest parts of this process for me to tolerate. There are days when I just sleep, and then there are days when I'm just fine. You just have to listen to your body and give it what it seems to be asking for at the time.

I have to take oral Decadron on days 2-5 to control the nausea, and it keeps me flying. Then, about 48 hours after I take my last Decadron pill, I crash. Hard. I need to sleep for about 16 hours and then I wake up and have some espresso and go about my business with essentially normal energy levels. But I have NO reserves. If I don't stop going and doing and being the INSTANT that I start to get tired, then I pay the next day in a big way.

[KalisaO]

I can only reiterate what has been said by everyone else...listen to your body!! If you are tired then sleep...if you feel like walking walk. Only you really know what your body needs to recover from the poison in your body. And it will most likely be different every treatment. Most importantly do NOT be hard on yourself, be patient your body is working and will rid itself of the chemo drugs.

I personally found acupuncture to be really helpful to rid myself of the toxins and regain some energy. I have a great acupuncturist in the city if you want her name. I also had thai yoga massages every couple weeks. I have heard it be referred to as the "lazy mans yoga". Basically you just sit there and let someone stretch you out. I thought of it as a reminder to my muscles that we were not on a permanent vacation, this was temporary and I was going to use them again. Lastly, I always asked for an extra bag of fluids when went in to get unhooked. I felt like it kicked me off on the right foot.

All my best to you.

[John in CA]

Yes, to what everyone else says: sleep. I had severe fatigue -- bad enough that I went on medical leave toward the end of chemo (and should have done so much sooner). I would sleep 10-12 hours each night, sometimes more, and nap during the day, often for hours at a time.

I did everything else you describe -- walked my dog every day, ate as well as I could, kept hydrated, even swam laps some days. Still, sleep is what my body needed most.

I finished chemo in May; by July I had most of my energy back. By September, the fatigue was a distant memory.

John

[helen098]

sleep as must as you can but not too much as my once said. for my I could not sleep enough I left work early every day and was in bed by 4pm and only woke up when someone made me around 7pm then after dinner and walking jerry a nap on the couch
Sometimes I would wake up around 11 in front of the tv and the first thing out of my mouth was why didn't someone wake me up to go to bed.
it does get better I finished chemo jan07 and by the summer I was not wanting or needing a nap any more.
hang in there and enjoy your naps

[wwroam]

Surroundedbylove, it sounds like you are doing all the right things. If you need to sleep, go ahead and do it. I worked all through chemo, but of an afternoon, I would tilt my chair back, feet up on the desk and nod off for 30 mins. From the first cycle on, we knew that blood levels were going to be an issue sooner or later. Between the 5th and 6th cycle, my business partner took off to NZ for a weeks skiing. By this time he was more worn out than I was. For that week I manned the office supervising our 4 staff and doing all the site inspections. These were 12 hour days and at the end of that I week I nearly slept around the clock on the weekend. It took its toll on me, and when I reported for chemo the following Monday my readings were dire. I had 10 days off before trying again. In that time I recovered to pre chemo levels. Though my levels slowly slid , I had learnt my lesson and paced myself better and had no more deferments. There is no substitute for rest.

[Surroundedbylove]

Thank you all s much for your tips and suggestions. The validation also helps. My onc. says the cumulative effects for me of the neoadjuvant chemo radiation and then the surgery just make it harder with the adjuvant chemo. Oh well - I will get through it just with lots of naps and taking a leave from work.

[Surroundedbylove]

I happened to glance back at a couple of old posts of mine from during treatment time and I thought I'd update this one - (I hope this doesn't confuse anyone - notice the dates on the original posting!).

This extreme exhaustion was during my first round of adjuvant chemo which was 5FU and oxaliplatin (modified FOLFOX6). As it turned out, my white blood counts had plummeted and my red counts had also gone down quite a bit. I was super fatigued. I actually had to hold off chemo for one week. Then my onc switched me back to XELOX and although I was fatigued, I did better.

I thought with new members, discussion of exercise, and helping people plan, that it would be good to show this experience of mine again. I had always exercised and chemo just zapped me - it was really tough. That being said, it was all worth it and the fatigue became manageable once I took a leave of absence, got plenty of rest whenever my body wanted to sleep (11 pm to 3 am; 6 am to 9:00 am; noon to 2:00 - those were my standard sleep times!), and did consistent but light exercise. Staying hydrated helped as did acupuncture.

SBL

[BrownBagger]

I was confused--concerned, SBL. Then I saw Justsing's post. Now I'm just bummed.

Anyway, I'm glad this was not a new post--kind of like waking up from a nightmare and going "Whew!"