Hi I'm FOLFOX...how do you like me so far ?

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Hi I'm FOLFOX...how do you like me so far ?

Postby CRguy » Thu Jun 03, 2010 2:59 pm

Hi FOLFOX, I'm CRguy and so far...you're a nice place to visit but I don't plan on living there.
All you veterans, bear with me....bit of a ramble, courtesy of dexamethasone induced euphoria and insomnia.

SO, had my BARD powerport installed on May 21 and he had his first run yesterday.
( Named it "Elwood"..FYI Fletch..keep readin' )

Great Oncs, Residents and chemo nurses at the Agency. 6 th floor looks more like a VIP lounge at the airport, and they are totally dedicated to patient-centered care : visitation dogs, coffee/tea/cookies, programs for light exercise, Taiji, meditation, yoga, counseling, complementary medicine consults..all free to patients and caregivers. Yes we are known as "Lotusland" to the rest of the country. I am impressed. Last chemo was at a community hospital based unit, but I figured if I was temporarily being kicked out of my own" three five oh club" I was gonna go BIG or go home ! I like BIG !

My chemo nurse just moved out from another province and chose BCCA specifically for its reputation of patient care and leading edge programs. Said she used to refer to the website info and protocols all the time. Great lady.
Anyway back to "Elwood" : took all the usual suspects in stride - calcium gluconate, magnesium sulphate, leucovorin, oxaliplatin ( my Beelze-Bag...Fletch's satin-in-a-bag : edit -not satin as in "goes down smoothe !" but SATAN-in-a-bag), more Cal-Mag, first bolus 5FU....with cleaning flushes in between. Ondansetron & dexamethasone appetizers to set the stage, with instructions to chase them up with 3 more dex, and prochlorperazine as needed.

Now I met "Joliet Jake" the baby bottle of 5FU for chemo takeout ! He won't be with us all the time..only gets out for a 2 day pass, and then we take him back to the big house on Friday. All he's good for is spitting out "FU..FU..FU" 24/7...so "Elwood" and I will be glad to see him go.... Two days of FU and I'm thinking FU too "Jake."

Now side effects : tired - wired on dex !, couple of toe tingles getting up today - gone now, cold "shock" in the fingers yesterday when I went to wash my hands and the tap wasn't warm yet...hugely in yo' face wake up call to all the pre-talk I got from 3-4 docs 'n nurses...Oh yeah evil-oxi = neuropathic thingies to watch out for. Decided Not to test the sensitivity for the pharyngolaryngeal dysesthesia syndrome ..I'll take their word on that one.
I must be a slow learner though...grabbed a drinkable yogurt right out of the fridge today...
Hello CRguy...I'm FOLFOX...how do you like me so far ?

Ok so my new mantra : doin' 6 months in FOLFOX county jail with "Joliet Jake and Elwood" but tryin' not to sing the Blues ! Blues Brothers always crack me up, so my way of keeping it light, and a little divine intervention wouldn't hurt either, they were on a mission from God after all !

Cheers all. Stay strong on the journey.

In Harmony
CRguy...the 3rd Blues Brother
Last edited by CRguy on Thu Jun 03, 2010 4:56 pm, edited 1 time in total.
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

helen098
Posts: 2009
Joined: Sun Jul 01, 2007 2:07 pm
Location: Forest Hills New York

Re: Hi I'm FOLFOX...how do you like me so far ?

Postby helen098 » Thu Jun 03, 2010 3:25 pm

I think your still kind of wired, but it’s not than bad a feeling, just watch out for the crash when you unhook
I felt like I was sliding down a very big wall very slowly then was left in a pool on the floor

You can always freak others out with “Jake” its great fun showing it to people and watching them turn pale and kind of nauseous.

Do you have gloves by your fridge yet? If not get them now because you will forget and go to grab some juice and well you know the pain is bad.

Remember to drink (water or juice only till you unhook) don’t want to be buzzed with the “baby” besides it would have to be warm- yuck

Glad thing are going well, keep fighting
stage 3A surgery 6/6/6 finished chemo jan 07
11 5FU/12 Levcouorin/10oxaliplatim
port removed jun 07
anal fistula surgery oct 05 may 07 feb 08 sep 08 jun 09

User avatar
paula
Posts: 450
Joined: Sat May 31, 2008 10:20 am

Re: Hi I'm FOLFOX...how do you like me so far ?

Postby paula » Thu Jun 03, 2010 3:36 pm

Thanks for the laughs about your folfox perspective ...wired or not, you're hilarious. Poor CRguy. I'm not far behind, and I swore I'd rather be dead than do chemo again. But that's not true. I really wouldn't rather be dead. Whatever it takes, we pay the price for our lives. Sometimes a high price. Hang on up there in the beautiful province.
3/08 Stage IIIa, colon resection, 12 rounds folfox
5/10 recurrence; right lobe liver metastasis
Hepatic resection 6/10; HAI pump and 6 months folfox/FUDR
Currently NED

The world is unfathomably beautiful today

User avatar
Ashlee H.
Posts: 2435
Joined: Fri Oct 09, 2009 11:50 pm
Location: Southern California

Re: Hi I'm FOLFOX...how do you like me so far ?

Postby Ashlee H. » Thu Jun 03, 2010 4:03 pm

CRGuy - you have such a gift of putting into words what we go through. I enjoyed the view of the "FU" repeated for the 46 hours it hangs out with you, pretending to be your friend. I thought I was the only one who named my fanny pack -figured if I was sleeping with it, it should have a name. You are making the Chemo experience sound more like an adventure. The chemo nurses must love your attitude!

Ashlee
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

User avatar
Nanette
Posts: 1323
Joined: Sat Jan 31, 2009 11:15 am
Facebook Username: Nanette Pepperday-Derry
Location: Buffalo, NY

Re: Hi I'm FOLFOX...how do you like me so far ?

Postby Nanette » Thu Jun 03, 2010 4:52 pm

Hey CRguy!

Could you hear me laughing??? You are too funny!! For having to go through chemo, you have a great positive attitude! I applaud you for that. I saw how Bruce was when he was doing his treatments, and he has your same attitude. I wish you nothing but a quick, smooth, NO (or very limited) side-effects, uneventful chemo journey!!!!!

And just remember...when you send Jake back to the big house, make sure you are home resting for a few days afterwards!! :o

Sending thoughts and prayers your way...
-Nanette
Husband, Bruce - diag. 12/07/08 at age 50
Stage IIIB CC, poorly diff, muc. adeno, sig. ring cell
Stage I bladder cancer
1 of 17 LN affected
Colonectomy 12/11/08
Finished chemo/rad on 8/19/09
Four years NED on 12/11/12 - Thank God!!
Livin' life!!!!!!

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

Re: Hi I'm FOLFOX...how do you like me so far ?

Postby CRguy » Thu Jun 03, 2010 5:08 pm

Trying to be a smartass flyin' on dex is more fun than I thought !

helen098 - thanks, the fridge gloves and the sloooowwwww slide from dex is good advice. Got hit up by a panhandler at the plaza today "working on the price of a bottle" - missed my chance to show off "Jake !"

paula - I know what you're feeling, 'cos we do pay a high price for our lives. But, being around to do it...Priceless !

Ashlee - I am now scarred for life...I am sleeping with the Blues Brothers !!! Shoulda named them Laverne and Shirley I guess !

Nanette - I am good to go with NO side effects !! otherwise uninteresting and uneventful will do nicely.

Cheers folks & thanks.
In Harmony
CRguy
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

User avatar
Gaelen
Posts: 3833
Joined: Fri Jun 13, 2008 12:57 am
Location: CNY
Contact:

Re: Hi I'm FOLFOX...how do you like me so far ?

Postby Gaelen » Thu Jun 03, 2010 5:29 pm

wow - be a little careful with that baby bottle of 5FU. If it's the kind they used on me (just once, never again) it has a little sensor taped near your port that regulates the flow based on body heat - not exactly the most precise delivery system when it's hot, or you have a hot flash due to the DMSO speeding thing (that lovely red flushing thing can also be accompanied by a body temp rise.) I'm one of those people who needs my 5FU slow and carefully regulated, so I was given mechanical pumps rather than the temp-sensor pumps.

Only time I ever vomited on 5FU was when it was run in too fast.

BTW, days 4 and 5 are the ones to watch out for. As we say about carcigenicity studies - the rats who live through day 5 will make it to the end of the regimen.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

SkiFletch
Posts: 6361
Joined: Mon Dec 07, 2009 3:39 pm
Facebook Username: Michael Fletcher
Location: Buffalo, NY

Re: Hi I'm FOLFOX...how do you like me so far ?

Postby SkiFletch » Thu Jun 03, 2010 5:45 pm

Hahaha, wow dude, totally wired, I love it :) Hope you can keep that energy up the next couple days, those are the tough two like Gaelen said. And man, I thought my oncologist was cool, but it sounds like you're being treated at a palace :)
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

User avatar
Ivona
Posts: 2048
Joined: Mon Jan 19, 2009 12:39 pm
Facebook Username: Ivona Bradley
Location: Ottawa, Canada

Re: Hi I'm FOLFOX...how do you like me so far ?

Postby Ivona » Thu Jun 03, 2010 6:21 pm

Well I'm glad to hear our federal transfer payments are being put to good use out there is Lotusland. :D :D Got your gov't approved shipment of medical maryjane/ganja/weed..etc. yet? I work for Health Canada so I could put in a good word for you.....LOL.....

THanks for sharing. You are bringing back tons of memories for me....most which I didn't need! The cold sensitivity is defintely a BI*CH!! At least it ain't winter.

Keep us posted on your progress.
dx'd Oct '08 (age 48)
T3bN2Mx
9/23 LN's
resection Nov '08
Folfox Jan '09 - March '09
Xeloda March 24/09 - July 6/09

"Yesterday is history, tomorrow is a mystery, but today is a gift. That is why it's called 'the present'. "

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Hi I'm FOLFOX...how do you like me so far ?

Postby ams5796 » Thu Jun 03, 2010 6:36 pm

I love your attitude! Your posts really lift my spirits. I always say (but not always do) that its the only way to go through this crazy journey with a heavy dose of positivity! You have it down to a science, CR Guy. Keep up the fight!
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

User avatar
hopeful
Posts: 1372
Joined: Mon Jan 04, 2010 11:43 am

Re: Hi I'm FOLFOX...how do you like me so far ?

Postby hopeful » Thu Jun 03, 2010 7:17 pm

CRguy on steroids! You are too funny! Ditto on the gloves by the fridge and also slippers by the bed for cold bathroom floors at night. I bet you keep the chemo nurses laughing!
Caregiver to husband diagnosed 11/09 stage IIIb colon cancer
Surgery 11/5/09
12 rounds FOLFOX beginning 12/18/09
Folfox finished 6/3/10
Last scan Jan 2015
NED since Dec. 2009

NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: Hi I'm FOLFOX...how do you like me so far ?

Postby NWgirl » Thu Jun 03, 2010 8:33 pm

Lucky you - the dex gets you going! For me, it sets me into a deep depression - very weird stuff. I dropped it cold turkey from my regime about mid-way through when I realized that was causing me to sing the blues! If it's working for you, awesome. Break out the guitar and post some tunes on Youtube for us!

Thinking of you my friend - sending warm thoughts up your way on the I-5 corridor. Hope you're a little warmer and drier than we are down here.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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

Re: Hi I'm FOLFOX...how do you like me so far ?

Postby CRguy » Thu Jun 03, 2010 10:47 pm

Gaelen - Yup that's it, and they were very specific in the chemo teaching and at the first infusion about this, so I am avoiding any "hyperthermic" pursuits until "Jake" is dispatched. The technology always impresses me, but your point is very well taken : it it always just a "tool" and keeping on top of the human reality and variability factor is where the real talent lies. My job now is set on being a "day five rat" if I can't be a 350 !

SkiFletch - yeah I planned on chillaxin' the whole first week and assess the oxi effects. 5FU (Xeloda) was no real issue for me. and Yes...I don't impress easily and I am blown away so far, so I guess if I gotta be a patient ....

Ivona - My order is on the way my dear !!! BUT only prime BC Bud (actually didn't really know it was a different species !! ) seriously, just having had a lung met out I won't "be blowin' fatties with Ross Rebgliati", probably go for "brownies" or pills if it gets to that ?? So far so good (he says after two frickin' days yet !!)

ams5796 - I find it does help me to get through, if I can share some positives and humor...well my definition of humor anyway :mrgreen: ...fightin' the good fight !

hopeful - If I can't try to laugh at life's joke on me then I am taking myself too seriously, and that gets me down. I always try to make that human connection with the medical folks...you cease being a disease to them and they appreciate that you value their efforts. I love my nurses !! said that many times in the past too. AND they all have pets so we have an instant connection..even got a visit from a visitation pooch on my first infusion !

NWgirl- Hey Belle I-5's back atcha. Yeah the dex is wierd...used it lots on my patients, works great but they can't say they are "buzzed" or hormonal. I agree there is a definite impact on the hypothalamus/pituitary/adrenal system and the buzz-withdrawal effect is real ! but then so is the nausea and neuropathy :(

Thanks for the input folks, I am always amazed at the community here.

Cheers
CRguy
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

Surroundedbylove
Posts: 3126
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: Hi I'm FOLFOX...how do you like me so far ?

Postby Surroundedbylove » Thu Jun 03, 2010 11:16 pm

YOu are too funny! I love your attitude and it is infectious - in a good way!

I-5s to you too!

SBL
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

User avatar
jenhopesprays
Posts: 523
Joined: Mon Aug 25, 2008 7:19 pm

Re: Hi I'm FOLFOX...how do you like me so far ?

Postby jenhopesprays » Thu Jun 03, 2010 11:24 pm

CR guy....

Hope you're felling a bit of relief after all that's been said
About the nasty effects of Folfox in threads
With the oxali in your veins
You're slamming cells like warplanes
and got some serious, well-earned, street cred :)

Super corny to go with your dex buzz!

Cheers!
Stage IV: dx 8/07 at 39.. colon & liver resection & rt ovary
17 rounds of folfox.
12/08 ovary tumor removed with HIPEC & folfiri w/Avastin
9/11 liver resection # 2 followed by chemo
NED

Have Hope with Capitol H


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot] and 118 guests