Energy

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4us4
Posts: 16
Joined: Tue Aug 13, 2019 2:58 pm
Location: Oregon USA

Energy

Postby 4us4 » Thu Jul 30, 2020 2:50 pm

Hey All,
My energy is sooooooo looooowwwww. I’m 5-6 months past my last chemo... 8 months past major surgery (cytoreductive & Hipec). I guess I felt like I’d have more pep by now... but I’m not doing well with keeping up with just day to day tasks/chores. I spend the day walking to sit in one spot— then another. I have two little kids and feel like I’m just dragging— instead of getting out there to make memories with them.

Is this normal? Or do you all think something else might be going on? Any tips on rebuilding energy?

Thanks!!!
DX@39yo in April 2019: Stage 4 Sigmoid-spread to peritoneum, both ovaries, spleen
June-Oct 2019: FOLFOX, Avastin, 5FU (9 infusions)
Nov 2019: Cytoreductive+HiPEC at UCSD, PCI score= 8
Jan2020: FOLFOX, Avastin, 5FU (3 infusions)
Next: LIVE!

Married w/2 boys 4yo & 1yo, Live at the Oregon Coast, Solid in my faith & firmly believe that WHATEVER the future holds, God is with me & THAT is enough... while praying my socks for full recovery & chance to raise my kids to adulthood.

User avatar
CRguy
Posts: 10207
Joined: Sun Feb 10, 2008 6:00 pm

Re: Energy

Postby CRguy » Sat Aug 01, 2020 8:43 pm

hey homie
just bumping you up here

I have NO magic bullets to offer except to say after radiation and surgery/ chemo ...
it took me a shitload of time to even feel semi normal, energy wise.

my lymphocytes were low for 2 years and that should have NO direct impact ... BUTT ....
maybe it was just a measure of how long my body was reacting to all the trauma ?

Hoping more homies will weigh in for you

Cheers and best wishes
CRguy on the Journey
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

NHMike
Posts: 2464
Joined: Fri Jul 21, 2017 3:43 am

Re: Energy

Postby NHMike » Sun Aug 02, 2020 7:01 pm

I would recommend some kind of training. It could be walking or something else but do it every day and try to do a bit more over time. Perhaps check nutrition and bloodwork to see if there are reasons for feeling tired (low red blood count would be an obvious one). Make sure you get enough high-quality sleep (tough with little ones). Make sure you get enough hydration (water, electrolytes).

I'd recommend a fitness tracker to prod you to get in steps, hydration, enough sleep and maybe walking up and down stairs. Some of them will measure your VO2Max which is a measure of cardiovascular capacity. You're really young and should have good energy levels. Also, any chance that you could get in some temporary help with your kids from parents or siblings?
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

Vana3
Posts: 39
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: Energy

Postby Vana3 » Sun Aug 02, 2020 10:39 pm

Hi!

I think that NHMike had some great suggestions. Especially around sleep and finding some help with the kids. I am 4 1/2 months out from chemo and 3ish months since liver resection, my energy is not the same as it was but slowly slowly it’s coming back. My husband takes care of our toddler in the morning so that I can sleep in when I need to. We also hired a part time babysitter. My social worker at Dana Farber encouraged us to find a babysitter that we felt we could be comfortable with (talking about COVID precautions). It’s been a game changer for me... to deal with the normal postpartum period alone is hard enough but to add cancer and treatment to that, well it’s more than overwhelming.
Wishing you well and big hugs
36 year old mom of 3 kids (10 year old twins and a 6 month old)
T4aN2M1
5 cm tumor in cecum removed with clear margins
17 out of 45 lymph nodes positive
1 cm omental deposit removed
LVI present
prior to surgery CEA level 5, post surgery 4.2
MSS, KRAS g12d, Braf WT
Mutational burden: 10.9
8/20/19 more scans (CAT, MRI. PET) showed small spots on right lobe of liver
9/19 start Folfox with Avastin continued thru March 2020
1/02/20 CEA 3.6, 2/15- 4.4 3/15- 4.6, 6/05 4.6
Liver resection 4/15/20

4us4
Posts: 16
Joined: Tue Aug 13, 2019 2:58 pm
Location: Oregon USA

Re: Energy

Postby 4us4 » Mon Aug 03, 2020 9:24 pm

Thanks!!! Yeah, this COVID threw a kink in the plan for child care + preschool ... and now it looks like it’s all closed up in my area again Fall2020.

I did a bunch of reading about “Cancer Related Fatigue” and added in more protein (which helped). I might just be one of the ones that struggles with fatigue a bit longer (just like I gained vs lost weight through all the mess- boo!)

Thanks team!
DX@39yo in April 2019: Stage 4 Sigmoid-spread to peritoneum, both ovaries, spleen
June-Oct 2019: FOLFOX, Avastin, 5FU (9 infusions)
Nov 2019: Cytoreductive+HiPEC at UCSD, PCI score= 8
Jan2020: FOLFOX, Avastin, 5FU (3 infusions)
Next: LIVE!

Married w/2 boys 4yo & 1yo, Live at the Oregon Coast, Solid in my faith & firmly believe that WHATEVER the future holds, God is with me & THAT is enough... while praying my socks for full recovery & chance to raise my kids to adulthood.

hondo77
Posts: 3
Joined: Wed Aug 05, 2020 7:56 pm

Re: Energy

Postby hondo77 » Wed Aug 05, 2020 8:27 pm

How active were you before all this happened? Either way, I treated exercise like I was starting from scratch: start with a little and gradually increase. Set aside time for whatever you're doing: walking, riding a bike, whatever. Start with a walk once around the backyard (I have a big backyard). The next day (or two) later, twice around the backyard. Slowly build up, going at your own pace. You're now training.

NHMike
Posts: 2464
Joined: Fri Jul 21, 2017 3:43 am

Re: Energy

Postby NHMike » Thu Aug 06, 2020 4:19 am

4us4 wrote:Thanks!!! Yeah, this COVID threw a kink in the plan for child care + preschool ... and now it looks like it’s all closed up in my area again Fall2020.

I did a bunch of reading about “Cancer Related Fatigue” and added in more protein (which helped). I might just be one of the ones that struggles with fatigue a bit longer (just like I gained vs lost weight through all the mess- boo!)

Thanks team!


I also gained weight through chemo but eventually took it off. Nutrition is a bigger factor in weight loss than exercise so that's an area to look at. The thing about fitness is that it's important to get started and keep up with it. Motivation is a big factor as is maintaining it. Finding something that you enjoy doing or doing something with other people is a good way to be motivated.
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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