What to you do to keep up your strength?

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debb
Posts: 191
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

What to you do to keep up your strength?

Postby debb » Thu Feb 22, 2018 10:58 pm

Hello...I've just started a new round of chemo, Folfiri & Avastin, and had a rough go the first week. This will be the 4th time over the last 10 years that I am going through a 12-round course of treatment. You'd think I'd be an expert at this!

This time is different for me because pain is keeping me from being my normal, active self. I wanted to poll my friends here to see if they have any "tricks" they use on OFF WEEKS to help them GEAR UP for the chemo weak.

Is there a food you eat, place you visit, supplement you take, exercise you do....anything that makes you regain your strength and focus so you go into the next treatment with more fortitude??

Thank in advance for any suggestions.
2008, Stage 3C, age 42, mom of 4
Folfox 9/08-2/09
Met to right ovary, both removed 7/10
HIPEC 8/10
VATS 7/12, right lung
10/14 Stivarga clinical trial
3/15-7/15 Folfiri & avastin
8/16 Folfiri & avastin
Break! 10 months of freedom
1/18 - 4/23 many Folfiri & Avastin
6/23 Clinical trial REGN7075. Progression
8/23 radiation to femurs and L4
9/23 rechallenged Folfox. Allergic reaction at 4th infusion
11/23 will start Bot/Bal

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: What to you do to keep up your strength?

Postby CRguy » Fri Feb 23, 2018 1:24 am

debb wrote:....anything that makes you regain your strength and focus so you go into the next treatment with more fortitude??


Don't know if this will help you ... BUTT
I come from a long line of tough folks I guess ( Scottish and Icelandic = Braveheart meets the Vikings ! :shock: )

and some times
some days
I just used to get up and DO IT
whatever needed doing, when it needed doing ....AND
then would just sink back, regroup and re-energize

I know, probably not helpful as a tip or hint ... BUTT just sharing how I made myself
Do It.

Can't really distill all my feelings and posts here into one nice reply ... BUTT
Just have to say what I have been feeling since diagnosis :
cancer : you messed with the wrong guy.
I was and AM ignited to absolutely kick your ASS back to the last millenium


once I really resonated with THAT feeling and knew what I had to do INSIDE

I would just Do It


So maybe my reply is :
Find what resonates with you
your true north

what keeps you going
what you cannot live without

win or lose
WHAT do you need to do, so you never have to look back and say " damn I shoulda' ...."

do THAT and you will find new energy

your question actually was :
What to you do to keep up your strength?


Body Mind Spirit ?
We need ALL of them to thrive and survive

Find what makes YOU stronger
and kick ass

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

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O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: What to you do to keep up your strength?

Postby O Stoma Mia » Fri Feb 23, 2018 1:55 am

Just like what CRguy said..,

Anyway, in my case I walked to the end of the beach and back, twice every day, rain or shine. (There was never any sleet or snow, but I would have walked anyway if the weather had really turned bad.)

I always felt much better when I got home.

lovelife789
Posts: 161
Joined: Thu Aug 24, 2017 5:28 am

Re: What to you do to keep up your strength?

Postby lovelife789 » Fri Feb 23, 2018 2:01 am

Heya,

I live in a super metropolitan city, no beach near my home and the air is bad... So what I do is usually I play board games to get the "foggy brain" out of the way, and then I'd go grocery shopping picking food for a healthy diet to get myself feeling I'm "actively doing something for my body". Then, I do some minor yoga stretching and pace quickly in my home while I pray.

I do drink fresh veggie juice every morning to get my bowel moving, that seems to be a good thing to do. I don't do it as often now (just can't get up too early in the morning and juice and rush to work) and I feel not as refreshed... :wink:
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: What to you do to keep up your strength?

Postby rp1954 » Fri Feb 23, 2018 5:14 am

What to you do to keep up your strength?

I think the most dramatic QOL turnaround in Folfiri patients that I've seen discussed, was one member who, at the point of quitting Folfiri, began IV vitamin C + K3 and other supplements. She found a clinic in BC (Canada) that did both folfiri and IV vitamin C. She got almost three more years with good QOL on folfiri, even on a suboptimal C+K schedule ($$$). I believe she also got the IV vitamin C same day as folfiri, then one a few days later, and one in the off week (skipped one in the off week). I'd look at the Life Extension list and get other integrative medicine recs on supplements.

For us, the IV vitamin C and (oral) vitamin K2 (MK4) made 5FU work, long after 5FU-LV quits in most people. We were able to avoid irinotecan with other off label adjuncts.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: What to you do to keep up your strength?

Postby NHMike » Fri Feb 23, 2018 6:16 am

I'm in NH and we had two days with 70+ degree weather. I went out and walked. My ideal day would see a five mile walk every day (I have a Garmin watch to track my walking) but the numbers dip a lot after treatment of course. On Tuesday I went back to barbells - I only do four exercises: deadlift, military press, squats and bench press, but those four exercises work probably 85% of the muscles in your body so I try to do them daily.

I try to do my stretching and bodyweight routine daily but it's more like every other day. I've been negligent on balance exercises.

So for me it's exercise but it's also limited as chores pile up on the down weeks.

It's rough because you only feel good one week out of three. And even then, you're not 100%.

I bought some Hypafix tape to help secure the wafer on my Illestomy and I need to measure myself for a Stealth Belt so I can get back to running.

I was extremely active before surgery and want to get back there but it is very challenging.
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

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: What to you do to keep up your strength?

Postby Ron50 » Fri Feb 23, 2018 7:56 am

G'day Debb,
I will start at the end. I had 48 bags of 5Fu via canula and over 200 tablets of levamisole. At the end of it all my oncologist sat down with me and said I have never had that happen before , I said what? He said in the whole 48 weeks your blood counts never wavered ,they remained totally normal. He asked what I had been eating. I just said everything bland. Breakfast was always rolled oats made on milk with a dollop of honey , lots of fresh fruit and fish. Boring but healthy. I actually put on some weight whilst on chemo. I didn't do much exercise but I was out in my boat fishing at every opportunity , so plenty of fresh salty air. I guess it all worked for me. I've been ca free for over 20yrs now. All the best Debb, Hugs ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

debb
Posts: 191
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: What to you do to keep up your strength?

Postby debb » Fri Feb 23, 2018 11:47 am

Hi all....thanks for telling me what works for you to get your head back in the game.

This first new treatment hit me hard because I actually forgot how hard this is!!

Similar to CRguy's advice, I "fake it until I make it." As I've previously posted, I was diagnosed almost 10 years ago at the age of 42. I've had recurrences nearly every 18 month, give or take, and have treated sometimes with surgery, sometimes with chemo. As a mom of 4 kids, ages 8-14 at diagnosis, I had neither the time or the inclination to sit back! I've been an active participant in life the entire time. Most people don't even know I have cancer. I have my own motto: Today is a good day for a good day!

I have been off chemo for 10 months, and when I restarted last week, I was thinking "OK, here we go. Yes, it sucks but you can do.." But it's like childbirth....I didn't quite remember how sucky and painful it is! :) As a self-declared expert on surviving chemo, I have my own ways of making the process easier. I don't do steroids because the crash is not worth it to me. I don't do Nuelasta shots, because my counts don't drop very much (like Ron50) and the shots make me feel really bad. I have the anti-nausea protocol that I follow. Lots of liquids. Lots of sleep. Lots of trashy TV. I start chemo on Monday, disconnect on Wednesday. By Friday, I'm feeling almost human again. And Sunday morning finds me yelling at my kids to pick this up! or put that away!..and they're like: OK, Mom's back!

My off week is all about catching up on errands and chores. Being Mom. Hanging with my Hubby. Meeting friends for lunch or book club or drinks. And exercising....which is now walking instead of running, yoga instead of boot camp. Right now it's the exercise that I miss because I have been in a bit of pain in my rib area. But since the first day of treatment, I have not had to take a pain pill, so that's great. And I actually slept on my side last night, for the first time since December. All good!

I don't take any special supplements, but eat a healthy diet. I take Vitamin D, Vitamin C, probiotics and Lunesta at night to sleep. One thing I've done over the last 10 years is take 800mg of cimetide daily (Rp1954). I researched this early in my journey and it seemed like it could help and couldn't hurt.

Thanks again for all your advice. You're the best!!
2008, Stage 3C, age 42, mom of 4
Folfox 9/08-2/09
Met to right ovary, both removed 7/10
HIPEC 8/10
VATS 7/12, right lung
10/14 Stivarga clinical trial
3/15-7/15 Folfiri & avastin
8/16 Folfiri & avastin
Break! 10 months of freedom
1/18 - 4/23 many Folfiri & Avastin
6/23 Clinical trial REGN7075. Progression
8/23 radiation to femurs and L4
9/23 rechallenged Folfox. Allergic reaction at 4th infusion
11/23 will start Bot/Bal

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: What to you do to keep up your strength?

Postby rp1954 » Fri Feb 23, 2018 12:01 pm

debb,
You used cimetidine in which time periods ? e.g. perioperative, in between chemo, during folfiri, during 5FU-LV (which chemos?)

Several patients found cimetidine harder during folfiri, so if you're relatively satisfied with cimetidine during folfiri, that's notable here.
Thanks
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

debb
Posts: 191
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: What to you do to keep up your strength?

Postby debb » Fri Feb 23, 2018 3:16 pm

Hey Rp1954...I didn't know anything about cimetidine when I was first diagnosed in 2008 at Stage 3C. I have rectal cancer but it was on the verge so went straight to surgery and then 12 Folfox treatments (actually 8...had an severe allergic reaction and then continued final four with just 5FU & LV). I did not take cimetidine at this point.

So, it was probably in about 2009 when I first heard about it and started taking it. I couldn't really find specifics about how to take it at the time, just learned to take 800mg. So, I decided that I would take 400 in the morning and 400 in the evening. I have taken it every day for the last 8+ years...before and after having my ovaries removed, before and after HIPEC, before and after VATS, and during the 2 previous times of Folfiri & Avastin.

I didn't realize that people found it hard during Folfiri. Do you think that's why I feel so incredibly shitty during Folfiri?

Weirdly, I first discovered cimetidine from our podiatrist. My daughter was having a hard time clearing up plantar's warts and he recommended cimetidine. I did some research on it before giving it to her, and it's usage for CRC came up during the search. I asked my doc if I could take it (didn't say why because I didn't want him to poo-poo it) and he said sure. By the way, my daughter's multiple plantar's warts went away with cimetidine and never returned.

It's Tagamet...but I buy store brands at Walgreens or the grocery or wherever...
2008, Stage 3C, age 42, mom of 4
Folfox 9/08-2/09
Met to right ovary, both removed 7/10
HIPEC 8/10
VATS 7/12, right lung
10/14 Stivarga clinical trial
3/15-7/15 Folfiri & avastin
8/16 Folfiri & avastin
Break! 10 months of freedom
1/18 - 4/23 many Folfiri & Avastin
6/23 Clinical trial REGN7075. Progression
8/23 radiation to femurs and L4
9/23 rechallenged Folfox. Allergic reaction at 4th infusion
11/23 will start Bot/Bal

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: What to you do to keep up your strength?

Postby rp1954 » Fri Feb 23, 2018 8:10 pm

debb wrote:I didn't realize that people found it hard during Folfiri. Do you think that's why I feel so incredibly shitty during Folfiri?

It could be contributory, particularly on/around infusion days, but folfiri has lot of its own notable toxicities spectrum. The thing that makes me take my breath about any tradeoff or choice is that the cimetidine papers' results suggest raw odds for benefit with advanced CRC of 60+% (even without targeting) and your long usage. This is partly why I drone on about CRC bloodwork, CA199, LDH, etc less related to their ordinary upper limits but rather their midpoints and the upper half.

I asked my doc if I could take it (didn't say why because I didn't want him to poo-poo it) and he said sure. By the way, my daughter's multiple plantar's warts went away with cimetidine and never returned.
Cimetidine has a lot of successful off label credits. A prescription can save money because the $9-$10/monthly or $20-25/qtrly generic is cheaper than Tagamet over the counter, and some drug plans give it for small change, e.g. ~$2 or free.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

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

Re: What to you do to keep up your strength?

Postby teachpdx » Tue Feb 27, 2018 9:57 pm

CR you are such a poet - love reading your posts. When it comes to energy, I have found that what I think is NECESSARY has changed dramatically the last five years. I literally recycled a pot I cooked rice in to cook soup in this evening! You might find this funny or gross, butt I've never done that in my life before tonight.

Doesn't seem like a big deal, butt cancer and it's aftermath makes you realize what's important - peace and rest.
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!


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