Post cancer fatigue

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teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Post cancer fatigue

Postby teachpdx » Fri Aug 23, 2019 6:40 pm

I was just wondering how many survivors here suffer from post cancer fatigue. I keep thinking I'll get better, and I do exercise, but then a day will hit and I can't get off the couch. Hard to explain to non-survivors.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Stage4jj
Posts: 4
Joined: Sun Sep 16, 2018 6:04 am
Location: Indiana

Re: Post cancer fatigue

Postby Stage4jj » Fri Aug 23, 2019 8:50 pm

I’m so glad someone else has this problem!! It’s been 2 years since my last surgery, and I honestly sometimes feel like it was just yesterday. I previously worked a very physical job in a steel mill, there’s no way I can do that type of work again. No one seems to understand this, and I feel like they think I’m just lazy. But, like you, there are some days that I can barely get of the couch. On top of that there’s some days that I can barely make it out of the bathroom... I’m finding out that no gallbladder and missing a foot of colon really throws off any hope of a “normal” bowel lifestyle. I’m curious to see others reply to this. Is this the norm for survivors?
12/2016 - Stage 4 Sigmoid CC w/Mets to liver , Kras mutation
1/2017 - Colon Resection, 1 tumor removed from liver for biopsy
3/2017 - 6 rounds of Chemo (folfox, avastin)
5/2017- 2 more tumors on liver....removed via ablation
8/2017 - Liver resection, removed right lobe & gallbladder
9/2017 - Ned

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Post cancer fatigue

Postby TinaFish » Fri Aug 23, 2019 9:18 pm

I'm not where you are, but I'm always of the "listen to your body" mentality. It knows what it needs. If it asks for rest, give it rest. Let it be strong so that it can fight off any future illnesses.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

User avatar
CRguy
Posts: 10179
Joined: Sun Feb 10, 2008 6:00 pm

Re: Post cancer fatigue

Postby CRguy » Fri Aug 23, 2019 10:31 pm

teachpdx wrote:I was just wondering how many survivors here suffer from post cancer fatigue. I keep thinking I'll get better, and I do exercise, but then a day will hit and I can't get off the couch. Hard to explain to non-survivors.

My energy levels tanked for a number of years and the best I ever got back to was about 80-90% of what was my old normal.
I blame the radiation ( no scientific proof ) with that and the fact that a few of my WBC counts stayed low or low/normal for YEARS :shock:

However I am now an old fart so ... I should probably be getting less "energetic" anyway :?:
(( screw THAT nonsense :twisted: :twisted: :twisted: ))

I have never been at the " cannot even get up to pee ... " level
BUTT I do understand and can relate to how and why
that would mess with you/us/me

We do just KEEP ON !!!! keepin' ON !

Harmony All
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Rock_Robster
Posts: 507
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Post cancer fatigue

Postby Rock_Robster » Fri Aug 23, 2019 11:14 pm

I’m still in treatment, but fatigue is my biggest side effect. Other than exercise, I find acupuncture to be very helpful. My practitioner focusses on strength and energy levels (whatever that is in TCM), and I definitely notice a difference when I don’t go.

Best of luck,
Rob
38M Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic VMAT radiation; complete met. response
07/19 Robot ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect #2
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope

Beckster
Posts: 417
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Post cancer fatigue

Postby Beckster » Sat Aug 24, 2019 4:53 am

I was on Xeloda for 6 months and I have been done for over 2 years. I used to be able to go, go,go....now I go and stop! I find that I have more energy in the morning, but by the afternoon, it is done. It is very frustrating to say the least. My mind says one thing, but my body says another.
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction
1/2/17 to 6/9/17- Xeloda monotherapy
6/17,12/17,6/18,12/18, 6/19, 12/19 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0
Clear Colonoscopy 10/17, 11/19 :D

margiej
Posts: 96
Joined: Sat Apr 14, 2018 8:46 am

Re: Post cancer fatigue

Postby margiej » Sat Aug 24, 2019 2:51 pm

I was on capeox for 4 months over 3 years ago. I have been exercising regularly all along and was in good shape before all this went down. Just in the past 3-4 months, I finally feel like I have more physical stamina. I don't find myself breathless with a little exertion, my pulse is lower. I still don't mind a nap but I definitely feel like I have turned a corner of some sort. Keep being kind to yourself as you continue to strengthen and heal.
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/2017 and 1/2020
CT 10/3/17 clear
CT 10/17/18 clear
CT 10/17/19 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

sadysue
Posts: 986
Joined: Tue Aug 02, 2011 6:59 pm
Location: Charleston, TN

Re: Post cancer fatigue

Postby sadysue » Sat Aug 24, 2019 5:18 pm

I wish I could say something positive regarding fatigue but unfortunately, I cannot. My path was chemo/rad daily for two months (weekends off) before surgery and six months of follow-up chemo after surgery. Eight years later, I am still very fatigued almost on a daily basis. I hope you see significant improvement and feel better soon. Many people feel great afterwards - I hope you are one of those people :-) Good luck!
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012
NED

teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Post cancer fatigue

Postby teachpdx » Sat Aug 24, 2019 6:03 pm

Sadysue, thanks for posting. We're about the same time out and it's taken me this long to figure out that fatigue was a big issue. Peace to you on your journey - I know how much it sucks. Feel free to PM me if you want to chat.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

NHMike
Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: Post cancer fatigue

Postby NHMike » Sun Aug 25, 2019 1:08 pm

There's a YouTube video of me playing tennis while on Chemo and Radiation. Most people that see it tell me that it doesn't look like I had cancer. But I did and the chemo and radiation did a number on my RBC and WBC and that means that I had about 1/3rd of my usual stamina.

My last surgery was July 30, 2018 and I did walk five miles after surgery and nine the next day.

I was originally diagnosed June 2017 and I had just run forty miles. Last week I ran 20 miles which is the first time that I'd done so since diagnosis. I have not felt like running a lot but have been doing a lot of strength-training instead.

The treatment alone takes a big toll on your body. Then there's the recovery and we're talking years. It can be much shorter for some people. Then there's dealing with the side-effects which can reduce your quality of sleep or just take a lot of time out of your day so you struggle to get things done.

I do find that exercise helps quite a bit. I'm stronger today than I've ever been. My balance is decent and I'm working on getting my cardio back. I would encourage getting exercise - especially if you know how and can judge your limits. For others, a trainer, especially one that is familiar with older clients, may be helpful.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT


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