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Is this normal?

Rach3612
Posts: 3
Joined: Jan 2018

My mother is currently battling Stage IV cancer. It has spread extensively to her liver which has been determined as inoperable. 

She is currently doing FOLFOX every other week and has a pump for 2 days. On the weeks in between she goes for Erbitux. She’s been doing this about 2 months. 

She is nearly bedridden. Can not do much as she gets tired out very easily. Can’t even go to the grocery for a quick trip. She can’t eat much, and while I’m unsure of how much weight she has lost... it seems to be a significant amount. I read stories about patients who work or continue hobbies etc.... but she can barely even shower. 

Weve not had a follow up scan yet but it seems her CEA has decreased significantly... but she just doesn’t seem ok.  

Any  thoughts, advice, or similar experiences would be appreciated. I’m just so scared. 

 

-Rachel

Ugur
Posts: 62
Joined: Mar 2018

Hi Rachel,

Sorry to hear about your mom. I am also recently diagnosed stage 4, same situation with liver. And yeah, unfortunately it is very normal if she is all the time just tired and dizzy.

I'm a 28 yo male. I'm having Folfox every two weeks and I haven't had any biotherapy yet. Still, I feel extremely tired after small physical activities, like walking. I couldn't shave my face once ever since that I can't stand still for a long time.

Please be patient with your mom. 

Wish you the best,
Uğur 

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

I have been battling cancer for over four years. I am now stage four with mets to my lung. Several times I've been so fatigued and so tired I can barely get out of bed. Sometimes it's from chemo, sometimes from other things that have gone on, but sometimes there's no reason whatsoever as far as I can tell. At this tme it's been almost a year since I've felt as good as I do right now. I had worried that how I'd been feeling was going to be my new normal. I could hardly do anything without ending up short of breath and exhausted. 

I wish I could say why this happens but I can't. Sometimes there's nothing to worry about and it just takes time to get better. I was also lying down a lot or in bed, couldn't go to the gorcery store or had to go to the car and wait for my husband if I did, and I had a lot of trouble eating and lost a bunch of weight. I think the not eating is what made me so tired but if I tried to eat I'd gag.

It's wonderful that her CEA has dropped a lot. Very good sign!

Jan

Trubrit's picture
Trubrit
Posts: 5003
Joined: Jan 2013

I had MANY side effects from chemo, but I swear the fatigue was the worst (and there were some bad ones).

I spent allot of time on the couch, unable to move. I did make myself get out of bed, but the couch was about as far as I could make it, sometimes. 

Your mum must try to eat, or at least drink those meal shakes - Ensure or Emend - because she needs to keep enough strength to finish her chemo. 

You may want to have your mum talk to her Oncologist, just to check things out. Always best to run it by them, as well as folks like us, who have gone/going through it. 

Tru

avargov
Posts: 19
Joined: Feb 2018

I have also had a lot of fatigue with my chemo.  I am on FOLFIRI, and from what I have read, it is not quite as bad.  I just did what I could, and took MANY breaks in between.  Kinda of funny to see a skinny dude sitting on the refridgeration unit near the yogurt at the store, but you gotta do what you gotta do.  

Hopefully, things will get better and she will get a little strength.  I agree about the boost drinks.  Helped me from time to time as well.

Alan

Phoenix_66's picture
Phoenix_66
Posts: 118
Joined: Jun 2017

We are all different and how our bodies react to chemo differs greatly. Over the years I have seen people taking less chemo than me not be able to cope with the side effects. Fatigue and tiredness seem to be very common among patients no matter what chemo they are on. 

Try to continue encouraging her to eat even a little bit regularly even when she doesn't feel like it. 

abrub's picture
abrub
Posts: 2108
Joined: Mar 2010

Will she be on it for life or is it a defined course of treatment with an end in sight?  Then you get to the question of Quality of Life versus Quantity.  All important considerations.  Personally, I won't do chemo anymore, but that decision is very individual and while right for me, isn't right for everyone.

Also, check with her drs about lowering doses and mitigating some of the side effects.

Alice

abita's picture
abita
Posts: 713
Joined: Dec 2017

I have the fatigue. It is hard to explain to people, because it isn't like staying out late, and only getting a few hours sleep. 

Trubrit's picture
Trubrit
Posts: 5003
Joined: Jan 2013

I felt like a balloon that had been popped and my body completely deflated. Once, even though I knew it was ridiculous, I actually felt myself, becuase I honesty thought I was flat. 

Tru

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

I don't know if anyone has seen the milk commercials where the people are doing things like dancing and suddenly they go all flat and kind of dribble to the floor. I tell people that's how it makes me feel. Or like I worked my behind off or went for a long run or hiked or something that wipes you right out and you lie on the couch and think you'll never get up again. That's how it makes me feel.

Jan

beaumontdave's picture
beaumontdave
Posts: 1015
Joined: Aug 2013

You didn't mention your mom's age, mine had been hospitalized for a number of issues, but the sciatica/hip pain rendered her immobile. She's getting better, but still has fatigue and eating troubles much as your mom does. Mine's almost 85, and it's clear that just being debilitated for a length of time really takes a toll, and she's not coping with chemo. I hope it all improves for your mom, and for you......................................................Dave

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