FOLFOX Treatment Diary

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DocSavage
Posts: 48
Joined: Wed Jun 08, 2016 5:00 pm

FOLFOX Treatment Diary

Postby DocSavage » Thu Jun 23, 2016 11:01 am

I am going to try and record what goes on during my FOLFOX treatments. Perhaps it will help someone down the road. Today was the first day and it was not nearly as scary//nerve racking as I thought.

My treatment is given at the Texas Oncology in Austin. The infusion bay/room is very bright and soothing. There are easy chairs for the patients (kind of tactical lazy-boys) and small loveseat/sofas for the visitors. Since this was the first time for me I was given a training session by the infusion nurse. What she told us was pretty much a rehash of what the other documents we were given and what I read here. In addition I received a cool knapsack with all sorts of goodies. It had fleece blanket, beanie hat, scarf, and other stuff. Some of it was a bit too cancer reminder stuff and I don't need reminding about that. There are snacks scattered around the room like pretzels, trail mix, bottles of water and little bottles of Ensure.

The day before I was given prescriptions for EMLA cream (a lidocaine/prilocaine cream to deaden the area around the port before the stick), Zofran (ondansetron - for nausea. It is specific for chemo induced nausea and is not supposed to be sedating), Phenergan (promethazine - another nausea drug. Quite sedating and shorter half life than zofran), and Ativan (lorazepam - for anxiety and to help with sleep).

I had also found online some t-shirts that allowed for easy access to the port (http://www.comfychemo.com/). Being a guy I don't have an low cut v-neck shirts and being a computer nerd I don't even have any button down shirts. In addition I had talked to some people who said you should wear the same thing every time and then burn it all when you are done! I bought two and they are very soft and comfortable.

So I had been told that it would be about 2 hours - but that is only for the main infusion course. It really is going to run about 3.5 - 4 hours with the checking in, lab work and premedication. The premedication had a small bag of IV zofran run over 30 minutes, then a small bag of dexamethasone with a piggy back of leucovorin (Folinic acid - the FOL in FOLFOX), this was also run over 30 minutes. After that was done she started the two hour infusion of Eloxatin (oxaliplatin - the OX). It wasn't too unpleasant. I read a bit, watched a John Wayne movie for a while, napped and had a few snacks. I am a IV taster - in other words when there is a push often I can taste what drug is being pushed. For example there is a distinct taste to the normal saline that is used to clear lines, to me it tastes like what hospitals smell like, kind of a antiseptic smell. However other than the normal saline I never did get a strong taste of anything bad.

After this infusion was complete the nurse pushed 5-FU (fluorouracil - the second F) and then hooked up the infusion pump and showed me the button to push if it started beeping. We tinkered with a few ways to carry it in the little pouch, set up the appointment 46 hours later to get it disconnected and I was free to go.

By the time we got home is was feeling a bit off - not really bad per-se but not 100%. I had a bit of queasyness - food just didn't appeal to me at all. I took a phenergan since they told me you could have both zofran and phenergan together. It made me really sleepy so I took a good nap and then got up to do some work. I had a little snack and noticed the first bite pain. To me it felt exactly like when you bite a lemon and feel you salivary glands spasm - not too bad but there. I didn't push my luck on cold stuff so I can't comment on that and no pins and needles in my feet and hands.

At bed time I took another phenergan as I was still feeling suboptimal tummy wise and figured out how to sleep with the pump on my bedside table. The little noise it makes when it pumps is only slightly chinese water torture like. I remembered to pick it up when I had to go to the bathroom at night so I never jerked it off the table. At about 2 am after peeing I took another phenergan as tummy was unhappy (not really nauseated, just unhappy).

All in all slept not too bad and got up to have breakfast with my wife. The coffee was good - but nothing was really appealing food wise. I took a zofran and had some toast.

I figured out the shower dance with the pump to keep it dry and used some saran wrap to put over the port to keep it dry.

As part of our kit to take home I got a toxic waste spill pack. It has goggles, gown. biohazard bags and instructions to bring everything back to the clinic if deployed. I told the guys at the office if I spit on them it would be instantly fatal. I am not sure if the believed me.

So first treatment - not too bad as yet. I would describe feeling a general malaise, or perhaps ennui or even le cafard. I do expect it to get worse as the treatments wear one but am going to take it one step a time and my next step is tomorrow to get the pump removed.

11 more treatments to go

If this is TMI or not the right place let me know.

-Andy
Embrace The Suck
Diagnosed at age 61 - Male
DX: CC 05/19/2016
Tumor Location: sigmoid colon
Tumor type: Adenocarcinoma
Tumor size: 3.9cm
Tumor grade: G2: Moderately differentiated (intermediate grade)
TNM code: T3N2aM(N/A)
Stage: Stage IIIc
Positive lymph nodes: 4 out of 26
Mets: N/A
Baseline CEA: 1.7
Surgical margins: clear
Primary surgery type: laparoscopically assisted sigmoid-colectomy 06/01/2016
FOLFOX started 06/22/2016
NED: 12/14/2016
Recurrence: Liver mets 6/12/2019

kooptroop
Posts: 2
Joined: Thu Jan 21, 2016 3:49 pm

Re: FOLFOX Treatment Diary

Postby kooptroop » Thu Jun 23, 2016 2:53 pm

Hi Andy,

Thank you for sharing your experience! I don't have much to say except that my mother (DX Aug 2012 Stage IV colon cancer) also goes to Texas Oncology in Austin (North Mopac location by Parmer Ln). I wish I remembered what her side effects were while on Folfox but it's hard considering she's been on every conventional treatment possible. She was on Folfox for well over a year (carry home pump and all) and she was running around town doing errands and working out. It kept her stable for a long time but now we are going to START center in San Antonio for trial options, the staff there is excellent.

My mom finds her infusions very relaxing even though she's getting pricked and prodded. She doesn't have to focus on anyone else, just herself for those hours and just recline in the lazy-boy style infusion chair with a warm blanket and catch up with her favorite shows. I guess you always have to find a silver lining. :)

Anyhow - wish you the best of luck fellow Austinite!
Kristy
DM - DXed Aug. '12 Stage IV
Colon and liver resection Aug. '12
<insert all conventional chemo possible so much so an oncologist looking over her medical history said "Holy Cow"> 2012-Dec. 2015
2016 - START Center in San Antonio for trials
Currently: mets to liver, lung, and very large cyst in right ovary

thehunter
Posts: 65
Joined: Thu May 19, 2016 10:13 am

Re: FOLFOX Treatment Diary

Postby thehunter » Thu Jun 23, 2016 2:59 pm

Great information. I think it's a great idea to detail the information for everyone to read!
Mar 15 stage 3 colon cancer
Apr 15 Colon resection
Cancer found LN & in fat in back
Jun 15 - 6 months chemo oxi & 5fu
Dec 15 scan : colon clear but mark on liver
Feb 16 mark on liver is a tumour
Feb 29/16 - liver resection
1 Tumour liver & attached to diapgrham & LN
May 16 - pet scan - peritoneal seeding, pelvic mass & marks in lungs & Lymph node by collarbone.
May 16 - TX: IRINOTICAN & 5 FU
Aug 16 chemo stopped. Not working.
lynch syndrome negative
KRAS Mutation present

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: FOLFOX Treatment Diary

Postby Pita » Thu Jun 23, 2016 3:04 pm

Yep this is the right place.
Glad your experience wasn't awful, only thing I would suggest is:
I do expect it to get worse as the treatments wear one but am going to take it one step a time and my next step is tomorrow to get the pump removed.
Don't expect anything to be worse. I read a lot and I understand what "could" happen with every treatment, surgery, etc. I will experience but never do I expect the worst. "Reality is never as dark as the places your brain visits in anticipation"
Food is a challenge for me, but I do try and force myself to eat something every 2 hours, especially protein. Lots of water too.
Good luck to you (((Doc))) and sail through those treatments with flying colors!!!
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: FOLFOX Treatment Diary

Postby juliej » Thu Jun 23, 2016 3:29 pm

Agree with Pita about drinking lots of fluids! You need to flush the chemo from your system. I also found that exercise (walking, jogging, biking, etc.) helped lessen the nausea and stimulated my appetite. There were many times I laced up my shoes thinking about throwing up only to return 30 minutes later from a walk with an appetite!

I only did mild exercise the first week, then ramped it up the second week when I was feeling better. I know everyone is different, but I felt like exercise made me more able to handle the treatment both physically and mentally. Water tasted bad to me so I drank sports drinks or used Nuun tabs, both of which have electrolytes to replenish your body. Oh, and Goldfish crackers were essential for the infusion room! :D
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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DocSavage
Posts: 48
Joined: Wed Jun 08, 2016 5:00 pm

Re: FOLFOX Treatment Diary

Postby DocSavage » Thu Jun 23, 2016 4:17 pm

Pita and JulieJ - you guys are so right. I am really missing my exercise right now and I am sure it colors my outlook. The surgeon doesn't want me to do anything but walk for 3 more weeks. In a normal week I do weight training, pilates with my wife (for bonding) and bike riding.

I went to work today until lunch time where upon I had homemade banana pudding (because it looked good and I deserved it). Then I came home so I could take a nap and then finish up work from home. I am lucky that I both have an understanding boss and a job that can be done from home.

What was interesting to me was I thought perhaps I had dodged the cold sensitivity. I like to take really ripe bananas peel and freeze them. They are almost like ice cream when you eat them. So I got one out of the freezer, broke off a little piece and ate it. It didn't bother my hands... on the first piece but when I put it in my mouth it was like sticking your tongue on a flag pole on a February night in St. Petersburg Russia. Quite startling, more so than painful. Then the next pieces also made my fingers feel that way. It went away in between bites...

The quesiness as abated somewhat so that's good.

-Andy
Embrace The Suck
Diagnosed at age 61 - Male
DX: CC 05/19/2016
Tumor Location: sigmoid colon
Tumor type: Adenocarcinoma
Tumor size: 3.9cm
Tumor grade: G2: Moderately differentiated (intermediate grade)
TNM code: T3N2aM(N/A)
Stage: Stage IIIc
Positive lymph nodes: 4 out of 26
Mets: N/A
Baseline CEA: 1.7
Surgical margins: clear
Primary surgery type: laparoscopically assisted sigmoid-colectomy 06/01/2016
FOLFOX started 06/22/2016
NED: 12/14/2016
Recurrence: Liver mets 6/12/2019

User avatar
DocSavage
Posts: 48
Joined: Wed Jun 08, 2016 5:00 pm

Re: FOLFOX Treatment Diary

Postby DocSavage » Fri Jun 24, 2016 4:46 pm

Slept pretty well last night - even with having to get up to pee 3 times during the night. I am guessing that I am diuresing all the fluids from the IV's. Woke up feeling a bit queasy and not really hungry for breakfast. Took a zofran and slowly ate some toast.

I went into the office to get some work done before heading to the treatment center to have the pump dc'ed. Really felt sluggish all day. After the infusion nurse pulled the pump I said - well I guess I will see you in two weeks, she replied you mean in 11 days but who's counting...

Decided to leave work early and go take a nap - after waking up I am feeling a bit hungry so it's now snack time :D

What I really want to do this weekend is go to our small ranch and sit on the porch with a beer, my feet up and watch the cows graze while listening to the wind and birds.

-Andy
Embrace The Suck
Diagnosed at age 61 - Male
DX: CC 05/19/2016
Tumor Location: sigmoid colon
Tumor type: Adenocarcinoma
Tumor size: 3.9cm
Tumor grade: G2: Moderately differentiated (intermediate grade)
TNM code: T3N2aM(N/A)
Stage: Stage IIIc
Positive lymph nodes: 4 out of 26
Mets: N/A
Baseline CEA: 1.7
Surgical margins: clear
Primary surgery type: laparoscopically assisted sigmoid-colectomy 06/01/2016
FOLFOX started 06/22/2016
NED: 12/14/2016
Recurrence: Liver mets 6/12/2019

Nik Colon

Re: FOLFOX Treatment Diary

Postby Nik Colon » Fri Jun 24, 2016 6:46 pm

Hey doc, I also have a similar thread for my own experiences (it's in my sig). It's nice to be able to help others by sharing your own experience and also to look back on to see your progress and remember things you may forget. Best wishes. Hope all goes well.

Lee
Posts: 6200
Joined: Sun Apr 16, 2006 4:09 pm

Re: FOLFOX Treatment Diary

Postby Lee » Fri Jun 24, 2016 7:36 pm

One thing I found that helped me. I would get a BurgerKing breakfast egg sandwich on my way to chemo. Egg gave me protein, bread gave me carbs. Would get me through that 1st day. I found small meals through out the day was better than eating 3 meals. Food seemed to help me keep nausea at bay.

And drinking a ton of liquid a day or two prior to infusion was essential to avoid dehydration.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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ANDRETEXAS
Posts: 653
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: FOLFOX Treatment Diary

Postby ANDRETEXAS » Fri Jun 24, 2016 11:27 pm

I, too, had my treatments at Texas Oncology on Reinfert Way. Went there today as a matter of fact. Blood work was great, and my oncologist told me to come back in four months. Knock on wood. My best advise is to stay positive. I, too, continued my three-mile walks while on FOLFOX, even days when I was wearing my pump. You will get tired near the middle of your treatments, but forge ahead as much as you can -- even when all the food takes like mud-covered styrofoam. :wink: Stay hydrated and rest as much as you can. You will make it !! Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: FOLFOX Treatment Diary

Postby LPL » Sun Jun 26, 2016 12:29 pm

Hi 'Doc',
Thank you for sharing your experience with Folfox.
My husband has also just started, his 2nd treatment will be on Wednesday. (This is my first post and I have not created a profile yet, sorry).
Can I ask? Are you checking your weight?
My husband's weight went down (not alarming but..) the first week after his 1st treatment eventhough he had good apetite. This second week it seams to stabilize and even up a little. Kind Regards /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

User avatar
ANDRETEXAS
Posts: 653
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: FOLFOX Treatment Diary

Postby ANDRETEXAS » Mon Jun 27, 2016 1:10 am

LPL --- My weight went up and down during FOLFOX. I would lose a little...then the doctor told me to keep my weight on....so I ate more to keep the weight on....That was the first 4-6 weeks. During the course of FOLXFOX, I was down 30 pounds from the beginning....but 3-4 months after chemo, I was back to where I was before I started chemo. Not on the same end, but I also had trouble with constipation and diarrhea.....and sometimes in the same week. :wink:
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

User avatar
DocSavage
Posts: 48
Joined: Wed Jun 08, 2016 5:00 pm

Re: FOLFOX Treatment Diary

Postby DocSavage » Mon Jun 27, 2016 9:36 am

LPL -

My weight has slowly dropped at least from the before surgery period, but as you said not alarmingly so. I probably have lost about 4 pounds total. My wife says 1) I look good 2) I don't snore as much as I did before.

For me what it has been is what is called chemo induced anorexia - which is just a fancy way of saying loss of appetite. While on the pump I seem to be just slightly queasy all the time and as a such nothing really seemed to make me hungry. I tried sipping some ensure which worked pretty well - but it was really about 2 days after the pump was removed before I felt really hungry.

There is also still a bit of free-floating anxiety which is not helpful, but seems to be easily controlled with a Ativan in the evening. I was still really sleepy all weekend after the pump was dc'd but as of this Monday am perking back up. I am guessing you get to feel almost normal and then wham -

RIght now I am not worrying about what I eat as much as if it looks good eat it. Hmmm maybe a few Krispy Kreme's are in order....
Embrace The Suck
Diagnosed at age 61 - Male
DX: CC 05/19/2016
Tumor Location: sigmoid colon
Tumor type: Adenocarcinoma
Tumor size: 3.9cm
Tumor grade: G2: Moderately differentiated (intermediate grade)
TNM code: T3N2aM(N/A)
Stage: Stage IIIc
Positive lymph nodes: 4 out of 26
Mets: N/A
Baseline CEA: 1.7
Surgical margins: clear
Primary surgery type: laparoscopically assisted sigmoid-colectomy 06/01/2016
FOLFOX started 06/22/2016
NED: 12/14/2016
Recurrence: Liver mets 6/12/2019

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: FOLFOX Treatment Diary

Postby LPL » Mon Jun 27, 2016 3:49 pm

Hi and Thank You AndreTexas & DocSavage for
Your replies. What I thought was odd was that hubby lost weight eventhough he had Good apetite and ate normal + 1 extra high protein drink per day that I had bought and he took reluctently :( and still he lost instead of gained weight. BUT we will se if that happens again with treatment nr 2. Perhaps it was due to not being far out from his BIG colectomy + gall bladder removal + reversal colostomi surgery... All that was done on May 23rd.
Interesting AndreTexas that you experienced both
Up & down weigh while on chemo!
All the best to You both & your Journey!
Kind Regards / L
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

User avatar
CRguy
Posts: 10264
Joined: Sun Feb 10, 2008 6:00 pm

Re: FOLFOX Treatment Diary

Postby CRguy » Mon Jun 27, 2016 10:14 pm

Hey Doc
glad you are diarizing your "trip" with FOLFOX !
as Nik says, it will be of benefit and HERE ..... we always pay it forward my friend ! :mrgreen:

At the risk of self-promotion or continuing to annoy my homies here .... :shock:
I offer my own version of a "FOLFOX Diary" kinda, almost ???
Hi I'm FOLFOX...how do you like me so far ?

Seriously ... yes I CAN BE :twisted:

With the Zofran / Decadron :
I used to get plugged up by Zofran, so I would take Miralax 2 days before and a couple of days after using the Zofran.
I had NO nausea issues with any chemo so I would "tweak" my meds WITH ONC's approval and just used the bare minimums of anti nausea meds.
DEXAMETHASONE = :twisted: at least in my systemic metabolism .... so I eventually reduced it to the very smallest dose, once before chemo and that was it !

I have distilled a perfect description of my response to dexamethasone :
think...puberty, PMS, hangover, sugar high, manic-depressive, narcolepsy... all nicely rolled into one cute little tablet (or infusion)


I did NOT need it so I was good to kick it to the curb ... BUTT ..... YMMV
(sorry that is = Your Mileage May Vary :mrgreen: we used to throw that phrase around a lot here )

Use it if you need it !!!

The Dex ... not the phrase .. well OK you can use the phrase too
BUTT ....
I am sensing you will also be bringing some of your own kinda' mojo to this little clambake here .....
JMO.

BRING all you've got !
We are here and have your back, as one day
YOU will have ours

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


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