CSN Login
Members Online: 4

You are here

How to deal with fatigue?

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I've been on Xeloda for a couple of months now and my onc has been bumping up my dosage slowly because she's worried after my toxic reaction to the last one. I'm at 80% now and will go up to 90% next week. I feel like I've had few side effects but since the last bump up I think I'm getting fatigue. I'm not working and have been finding myself needing a nap every day at 3 pm. And when I lie down I go right to sleep. Normally I'm not a napper. I rarely nap and when I try to I don't fall asleep, I just lie there for an hour and kind of zone out while fully aware of everything going on around me. Now I fall asleep immediately and sleep for two hours. Then at a normal bedtime I go to sleep and sleep all night.

My understanding of how chemo works is that it kills all cells it comes into contact with, healthy along with cancerous. The hope is that it manages to kill as many cancer cells as possible and the number of them in ratio to healthy cells is so low that its okay to kill lots of healthy cells along with the cancerous ones. Have I got that right? And this is why we get fatigue and low immunity during chemo. How am I doing so far?

We can take things to boost our immunity but it doesn't help fight cancer cells because the body doesn't recognise them and doesn't send whatever our immunity system consists of to fight it. So boosintg our immunity doesn't help fight cancer. Still correct?

So, if we can boost our immunity during chemo that should help with fatigue, right? Because the fatigue comes from the body doing so much more work due to the low immunity. 

If I'm right about all of this, is there anybody who has done something to boost their immunity during chemo? If so, what did you do and did it help? Or is there something else that helps fight fatigue? I take vitamins D and B12 as supplements as per doctor direction.

Thanks for any suggestions!

Jan

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Just thought of this. Maybe we're supposed to sit around and rest during this so this is the best thing to do? I try to fight it but maybe I shouldn't?

mozart13
Posts: 118
Joined: Nov 2016

Rest is the right answer, like you said, boosting immunity would be counterproductive.

When I had chemo/rad back in winter time they told me to stay away from anti oxidants and vitamins, this time I am on folfox, was told almost the same, except this time I took few things to flush my liver and kidneys, this oxilaplatin is so toxic.

4th and 5th day after therapy are toughest I find, so those days I sleep and rest most of the time, my usual walk is down to minimal as I get tired very fast, my heart rate is usually elevated for few days as well.

Good luck Jan!

Trubrit's picture
Trubrit
Posts: 5292
Joined: Jan 2013

'Maybe we're supposed to sit around and rest....'

I am glad you (still) have the choice. When I was going through chemo and radiation, I had no choice. I could barely move for the most part, and then it would wash over me, and if I wasn't sitting down, I was on my knees crawling, and then barely able to get up on to the couch.  

I felt like a balloon that was leaking air, until I was totally deflated. And I mean I REALLY felt like I was delflated. I remember once feeling my face, because I thought it had collapsed. It was the weirdest feeling. 

So yes, rest. Rest and DON'T feel guilty. Your body is craving that rest so that it can repair. 

Tru

SandiaBuddy's picture
SandiaBuddy
Posts: 1126
Joined: Apr 2017

Jan, as you may recall I am on Xeloda (capecitabine) as well.  I am only on my second course, but I have started taking a few handfuls of supplements this time and they really have helped with my energy and lessened the side effects.  The only problem is, I could not tell you which one, or which combination is working, since I started them all about the same time.  Like you, I am taking D3, 10,000IU a day, plus Glucosamin/Chondroitin/MSM supplement, as well as a fortified Brewer's Yeast (Folate and B-Vitamins plus Trace minerals) plus a multivitamin and Vitamin K.  To that I add Curcumin and Quercetin (plant extracts) plus some melatonin at night.  If I were to guess I would think it is the D3 plus Glucosamine/Chondroitin/MSM that is making the difference, but since it is working, I am not looking to eliminate anything at this time.  Oh yeah, and I take at least a low dose aspirin every day.  I have never taken supplements and I am skeptical as to their effect, however, having had cancer and then a part of my colon removed, it makes sense that my nutritional needs might be different.  Oh yeah, and I nap every day.  I have for years.  Most cultures in the world take a siesta, so it seems natural to me.  If the nap leaves you feeling more functional, why not just plan on it?  I hope you feel better soon.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you all for the replies! Mozart, I don't wantto rest, that's the problem. Tru, I hear you but I'm nowhere near that bad. I'd say I feel like I woke up and gained 60 pounds overnight and have to drag that around. Or like those milk commercials where the people are doing things like dancing and suddenly they go all flat and kind of dribble to the floor.

I've also noticed that the chemo brain has become really bad. Much worse than it was. My failure to think of words or ability to type on the computer and even just remembering things that have happened a short time ago are all much worse. I'm writing everything down because I can't remember anything. Even just litle things that have happened througout the day to tell my husband. It's probably good that I haven't found a job yet because they'd think I was a total idiot.

SBuddy, I can't take vitamin K because of being on blood thinners and I know the glucosamine/chondroitin/MSM is for degeneration of soft tissue in joints such as cartilage because I had to really research that for an old horse I had. Plus I can't take aspirin because of the blood thinners. The Brewer's yeast might be something to think about, though. I don't want to take a nap because I'm worried I'll start to depend on it. My husband has been a napper forever and is now on a CPap machine and still needs to nap. I want to stay as job ready as possible. But I'm starting to wonder if losing my job has been a blessing in disguise because I think I'd be a drooling idiot at work. I've had to go back through this post and fix probably twenty mistakes because I'm just so dopey. I an't even talk properly. I'm coming out with wrong words or saying things incorrectly. It's like being drunk. I really don't like this at all.

I can nap every day but it's summer. I don't want yet another one ruined by stupid cancer and I was feeling so good last week. Dammit, when does this s**t ever end??

 

 

mozart13
Posts: 118
Joined: Nov 2016

I got same problem, week of chemo I cant remember 3 things, it sucks, hope fully will go away. Did manage to put few ponds on as well, in last few days my appetite is not as good as it was, I think its gastrofil side effect, maybe will loose some padding, LOL.

Nice talking to Jan, rain just stopped in Toronto, gonna go for walk to TH to have coffe.

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks Mozart. Its a beautiful day here near Calgary. But my day has started out pretty crappy. Got up to one of the dogs having had an accident on the rug. A big pee puddle. So I'm cleaning that up in a minute, I have stuff on it soaking right now. Then I realized my husband didn't take the garbage out before he left so I had to do it. He puts in in a huge barrel and he's strong enough to get it out after but it's really hard for me, particularly right now while I'm weak so I was out there struggling with that and crying and crabbing at him out loud while I was doing it, even though hes not here. I hope the neighbours didn't see me. 

Ugh, just not having a good time right now. And I've got myself convinced that I'm going to get bad news when I finally get my CT results next week. There's been so many happy stories in here and it can't last forever and I think I'm going to be the negative one.

Yup, I'm negative Nelly these days in a big way. I should stay off of here. Nobody needs to hear my boring stories of woe. I hope evetyone has a great weekend!

Jan

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Jan - You're a fighter so keep on fighting!  I know it is so nerve racking to wait for the scan results. It clouds everything. So challenging that the results are taking so long to get processed. You've been through so much and you will continue to stay strong throughout.  Doing meditation and mindfulness may help. I do it every morning and focus on a centering thought for the day to keep me above the doubt and uncertainty of it all. Not to be a commercial but Deepak Chopra often does a 21 day free meditation series which I do when it comes up.  One is coming up soon so google it and give it a shot.  That all said, I started to get anxious about my first scan after my surgery. Surprisingly, the results of the abdomen/pelvis were released to my health portal but my chest scan was not. I calmed myself down that it was probably an administrative error and kept being mindful of my negative thoughts pushing them away.  My husband on the other hand went to the dark side and thought the results were being withheld until the visit with the doctor to give me the bad news. I stayed focused on being neutral not letting myself start to think what if... As it turned out it was an administrative issue and the radiologist reading the scan did not electronically sign off on the doc.  Also, the original results should not have been posted to begin with but should have been held for my doctor to review with me in person. This is to say keep the faith, be strong, it's OK to have a pity party but brief with a time boundry, be kind to yourself...  We are hanging in there with you...

Cindy 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Aw, thanks Cindy. I appreciate the support. Usually I'm good but it just sems like so many things are not going well in our lives and I never seem to have anything good happen for very long before some other crap comes along. Not to be a whiner or have a pity party but it's kind of the story of my life. Nothing good ever seems to last and it's always a struggle.

But, yes, mindfulness is a great thing. I was at a cancer weekend in the fall and they were talking about it and had a class on it. It turned out that it's something I've done for a long time but didn't realize it. I think it's why I don't usually have sleep issues. And it's what got me through almost four months of being in the hospital paralyzed and unable to walk or take care of myself.  

It's also what's enabling me to accept it if I get bad news next week. I feel like I'm prepared for the news. I've gone over it in my mind and I'm ready, I think. I have very limited options for the mets because of the blood clot. They can't do surgery which is what would be the best option. I know that every day I've had since the blood clot and the five cardiac arrests that day are a gift.

Anyway, thank you Cindy.

Jan 

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Jan - You're in our hearts and thoughts... We'll collectively be there with you in spirit next week as you get your results....

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you Cindy. You're very kind. I'm crying now. It helps so much when people understand. 

Jan

beaumontdave's picture
beaumontdave
Posts: 1089
Joined: Aug 2013

I guess I'm the one in the group with the "quick fix" mentality. If one is stressed, I'm the guy pushing Xanax to take the edge off. If someone says their hurting, I tell them I'd double up on my Tramadol and Ibuprofen. So in that spirit Jan, my answer for no energy is a couple cups of coffee when I'm home, but when I was at work during the Folfox days, and my butt was dragging, I carried a bunch of those dollar store little energy bottles. I'd drink half, wait 30 minutes or so, and if I didn't feel any better, I'd drink the other half. The ones I bought had niacin, b6, b12, Taurine, caffeine[about as much as a premium cup of coffee, the label says], and some stuff I don't know about, like N-acetyl. Anyway that was my solution to the lack of energy then, and I still keep a couple in my ice chest in the truck, just in case. I haven't looked at  the contraindications for Xeloda, or blood thinners regarding these "energy" drinks so I can't say they're safe for you, but they have picked me up when I had to get things done. So there's my two cents, I hope you find what you need, and feel better...............................Dave

beaumontdave's picture
beaumontdave
Posts: 1089
Joined: Aug 2013

I looked up N-acetyl and it's a body detoxifier. What's really dumb about me, is in the time I take to type that I don't know what something is, I can Wiki it. Still behind the learning curve of this powerful thing called a computer..............................Dave

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks Dave! I was doing okay today, feeling pretty good and then at 2:45 it was like a switch went off and I was done. Had my nap for an hour until someone phoned and I was still okay afterwards. I don't trust the energy drinks and I've never been a coffee drinker. I like my caffeine cold- Pepsi. My understanding with the energy drinks is that they'll give you more energy if you're active but if you're not doing anything they don't help. Plus I get a buzz off of them and feel vibraty if that's a word. Kind of creepy. 

Jan

beaumontdave's picture
beaumontdave
Posts: 1089
Joined: Aug 2013

Pepsi was Cindy's energy drink, she couldn't abide much else, and she knew they were serving the right/real stuff because she'd always have a small hiccup after the first sip. Go figure! As for the buzz and "vibratey" feeling, I get them, but I just run with it. If I didn't, I wouldn't like the feeling either...........................Dave

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Hi Jan

Tomorrow you'll be getting your scan results so I will keep you in my thoughts and prayers all day...  I'm actually flying to Cali for a wedding which will be my first time flying with an ileostomy.  Broke the flight into two trips to deal with "stoma baby".  Will try to log in at some point to hear how things went.  I know it's so stressful waiting but hang in there taking deep breaths, being hopeful and kind to yourself... hugs!

Cindy

 

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you so much Cindy! And thanks for remembering. Of course I can think of little else right now. 

Jan

mysweetheartrusty's picture
mysweetheartrusty
Posts: 19
Joined: Jun 2017

Just remember its not the normal you. This is a just a bump in the road and part of getting better. Only a temporary bad day that will fade and be something you can say you survived.

My husband was so busy all the time before he started feeling bad and had his CRC dx. He has unmedicated ADHD actually, so when I say he was busy...he was BUSY. Now with the chemo he has to sit in his recliner all day. He HATES it. He used to try to fight the chemo side effects until day he literally fainted from exhaustion trying to do too much in a day and we had to take him to the ER. He was at our sons band Christmas Concert. It was embarrassing for him and upsetting. He had to learn the hard way to rest. He was never a napper or sleeper really. It stinks for him. It makes him sad and he cries too. Especially the day before he has to go in for another chemo treatment. Its grief for losing the person he was and wants to be, but I keep telling him its only temporary. Its this treatment. So try to remember the effects fade. You are feeling better and ARE better than you used to be. The fatigue is not you. You are not being lazy, just tired from the chemo medicine. If you only need a nap to fix that one bad thing you can prevent, go for it! This disease is the pits. Do what you can do, leave the rest. Some days will be better, some worse, but all in all its progress.

And not having a job is Blessing. He has damaged more things trying to fix them with a chemo brain lol... I don't tell him what's happened, but wow. I don't have enough space to list the stuff that been "fixed" that needed fixing again. Its makes him feel better to think he's helping, but I can't imagine him trying to work for a person lol! (hug)

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you. I can really relate to your husband. I was always busy, busy, busy. If there was nothing to do I'd find something. When I had the blood clot and stroke and was paralyzed for months I did learn a bit about having some patience but now I just feel like finally I'll have a good summer and not be working and we never know when it'll be the last good summer and I'm too tired to do much. But at the same time, with me not working, there's not much money to do things. I'm just sick of thinking 'oh, next year' and then the next year comes and I still don't feel well. 

And, stupidly, my husband will sometimes make comments like why does he always have to mow the lawn. If I get upset he says he's kidding but it hurts. His first wife was a hothouse flower who did nothing around the house and certainly never mowed a lawn. I get in there and help with everything and have helped renovate our last house, and do all kinds of work most women wouldn't or couldn't. And I always mowed, more often than he did because of his work hours. Plus he puts so much fertilizer on the grass you can almost watch it grow. And he gave away my electric lawnmower so we just have a gas one and I'd told him if he did I'd never mow again. 

I hate feeling useless and I think its getting old, my husband and saughter, who are wonderful, get sick of me always being sick or tired or can't do things. I know it wears on them, it wears on me. And I'd probably feel the same. I hate this...

Jan

bobby66
Posts: 69
Joined: May 2017

did you get your scan results? i have been praying that everything will be ok.. .

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks for asking. I just got home. Thank goodness I was prepared. I figured the winning streak couldn't last and I'd be the one to break it. I have three spots in my left lung, two were deemed to be cancerous and the third one not. Turns out the third one is a met and all three have doubled in size since December. And I have a new small one as well. So four mets now that are growing at what she called a surprising rate.

The good news is that my kidney isn't any worse and the cancer isn't anywhere else. 

I'm continuing on the Xeloda for another two months and then having another CT to see if it's helping at all. All of the other chemos I could try have blood clots as a possible side effect. I'm on blood thinners and have an IVC filter in my vena cava to stop any blood clots but she wasn't sure if she was comfortable having me try them. She said it's up to me. She can't guarantee anything with them. Or I try the one that made my face break out so badly again at a lower dose.

I was told I'd only have a 30% chance of surviving surgery to have the lung removed. I've seen other members on here have surgery done by a doctor after another one refused. I wonder what the reason was that one refused. I need to check this out. Right now I feel absoluetely deflated and cursed. 

Jan

 

Trubrit's picture
Trubrit
Posts: 5292
Joined: Jan 2013

I am so very sorry to hear this news.  

You have every right to feel deflated and cursed, and no dount a whole bunch of other things. 

You will keep on keeping on, because thats what we do. 

Know that you are in my thougths and prayers. 

Tru

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you. I know it's not the end but I have so few options that I don't know what to do or what to think. I'm so tired of living scared and living with this. I don't want to live whatever time I have left being sick and on treatments.   

SandiaBuddy's picture
SandiaBuddy
Posts: 1126
Joined: Apr 2017

Jan:  I am very sorry to hear your bad news.  Perhaps with some exploration other doors will open.

Canadian Sandy's picture
Canadian Sandy
Posts: 666
Joined: Jul 2016

Sorry your news wasn't better. Keep your chin up. I am praying for you. 

 

bobby66
Posts: 69
Joined: May 2017

Sorry for the bad news. will keep on praying. only God knows when is our time. Doctor's can only give you an estimate, but at the end. God is in control.

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Hi Jan  - Not what you wanted to hear and new data to tackle...thoughts about second opinon?  Thoughts about research trials? Be your own best advocate. Be present with your family, friends and horses. Focus on you. Be positive and keep fighting... hugs.

Cindy

Bellen
Posts: 281
Joined: Aug 2016

Hi Jan - Thinking of you as you make a decision about your next step.  I wonder if anyone on site can respond if they have had a similar diagnosis and what treatment was suggested for them.  This website can be so helpful.  Sending you thoughts and prayers that your next option will bring you some positive results.  Hugs!

EissetB
Posts: 135
Joined: Apr 2017

I also dealt with fatigue syndrome, Jan. I took Tylenol and fell to sleep for 3 hours!! When I woke up although not hungry I shove in a few bites of steamed rice with a few drops of lite sodium soy sauce on it. And boy, I felt a little better. But of course it's me, it might be different for you though or you might try it. I do hope you feel a little better if not a lot. Big Hugs from me.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks you guys! I appreciate the support on this forum more than nayone can ever know. To have pople who understand is priceless. I've just gotten over an absolutely miserable week which I'm going to put in a new topic in case it's helpful to anyone.

Hugs!

Jan

Subscribe to Comments for "How to deal with fatigue?"