Tips for a Folfox newbie – starting Tuesday

Please feel free to read, share your thoughts, your stories and connect with others!
Darn Blond Neon
Posts: 8
Joined: Thu Jul 26, 2018 7:18 am

Tips for a Folfox newbie – starting Tuesday

Postby Darn Blond Neon » Sat Jul 28, 2018 7:10 am

Hello all…

First of all, thanks to you all for a superb resource – the plain-spoken and (mostly) jargon-free personal experiences on this forum have been a great source of knowledge and reassurance after my own unexpected diagnosis.

I'm in the relatively lucky position of having had my tumour completely removed without any prior intervention. I am now about to start a 12 cycle course of Folfox to mop-up the nasties at a cellular level.

The prospect of chemo is daunting; in daylight hours, I can cope with the concept, but I lie awake at 3am worrying about how I'll cope with the side effects. (I get seasick watching Titanic…)

To that end, I would welcome any hacks, tips, or tricks that you folks found helpful in managing, anticipating, and reducing the impact of Folfox.

I'm a slim (now very slim), fit, active and (otherwise) healthy 48 year old, so I'm hoping that gives me a good start.

From reading the personal accounts in this forum, the key tips seem to be to keep hydrated and moving, and to anticipate rather than react to side effects.

But if any of you kind people can share any other pearls of wisdom, they would be very much appreciated! Thanks in advance…
- - - - - - - - - - - -
Male 48 years old
31st May 2018 – sigmoid colectomy due to complete bowel obstruction; no significant prior symptoms
7th June 2018 – pathology confirms 2.5cm tumour is cancerous; 3 of 12 lymph nodes affected – pT3 N1b Mx
31st July 2018 – Due to start 1 of 12 cycles of Folfox

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

FOLFOX side effects management, and treatment diaries, etc.

Postby O Stoma Mia » Sun Jul 29, 2018 3:07 am

FOLFOX side effects management, and treatment diaries, etc.
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=44542&p=321388#p321388

User avatar
mobrouser
Posts: 110
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Tips for a Folfox newbie – starting Tuesday

Postby mobrouser » Sun Jul 29, 2018 9:42 am

Hi Darn Blonde.

There is a topic in the forum called "Mop up chemo experiences" that is always current. Link for it is here: viewtopic.php?f=1&t=59639.
It will give you insight into what you might experience. I'm sure you've been told that each patient reacts differently so you won't necessarily experience all side effects. Some of them will hit right away, as in while receiving your first infusion, others will show up hours or days later. Also some will become more "severe" as you go through your infusion cycles. (Severe is not the word I'm looking for as it sounds harsh but can't think of the right word)

If your oncologist gave you an information package about your chemo drugs it should also have side effects listed. I encountered at least one that wasn't listed on mine. If you were prescribed anti-nausea meds to be taken prior to your infusions, take them for at least the first infusion to see what your responses will be. The oncology nurses in the chemo suite will be monitoring you frequently during your first infusion to ensure you aren't having an allergic reaction to the chemo meds. They will be very helpful and can answer many questions.

If you are able to keep up your fitness routine, even if modified, during this process you will be in a good position once it is all over.
I'll be doing my last of 12 Folfox on Tuesday, so I will be thinking of you.

Cheers,
8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear

Jannine
Posts: 90
Joined: Wed Jun 20, 2018 7:46 am

Re: Tips for a Folfox newbie – starting Tuesday

Postby Jannine » Sun Jul 29, 2018 10:46 am

Your situation sounds a lot like mine; we are the same age. I was already thin and have not yet managed to put much weight back on after surgery. Being in the hospital for a week on a liquid diet didn't do me any favors. I have trouble eating for a good 3-4 days after each infusion, even though I don't have any notable taste changes yet aside from first bite; I just have a lot of discomfort and bloating in my stomach that makes food seem unappetizing. It hasn't seemed bad enough to try Gas-X to address it but I think I will try that with my 3rd round if it isn't any better by then.

I also had cold sensitivity with the first round of Folfox, where even tap water was too cold for me, but it faded to where fridge-temperature was tolerable within a couple-few days. Freezer-temp sensitivity is lasting much longer for me after my second-round dose. I think this is pretty unique to the individual, so your experience may differ substantially.

The anti nausea meds for the infusion seem to vary based on the oncologist; they give me meds in pill form (zofran and compazine) about 30 minutes before my infusion starts, so I don't need to take them on my own beforehand. This is really just a preventative, since I haven't had any actual nausea yet. It sounds like some people here didn't get nausea meds until after they started to feel nausea, though.

Make sure you talk to your oncologist about being prone to nausea so they get you set up appropriately. If you haven't done that yet and you're not seeing the oncologist before the first infusion, call Monday or talk to the infusion nurse about it ASAP when you go in. They'll coordinate with the oncologist as needed. There should be plenty of time for them to make adjustments, as there will be a wait between checking in, blood work, getting the results, and the FOLFOX drugs being prepared. I am usually there a couple of hours minimum before they actually hook me up to an IV. Bring a book or some other way to occupy yourself.

I have been using nuun hydration tablets (the original formula, mostly because the combo packs of the new formula sold on Amazon include grape flavor and I hate grape, lol) to hydrate for a few days before, during and after my chemo treatment, and that is working well for me. Plus they taste a lot better than gatorade. I only get the hydration ones, not the ones with vitamins and not the ones with caffeine.

Based on the information gathered here, I'm also avoiding foods with added folate (e.g. I'm having oatmeal at breakfast rather than fortified cereal, using organic wheat bread for sandwiches, and checking all labels for added folate/folic acid). I can't tell you if that's helping or not, but it's an easy change to make so seems totally worth doing. I already was the kind of person who checked food labels to see what was in stuff. :)

I really would like to try the fasting thing too, which has been talked about on these boards, but it looks like all the studies that have looked at this have been with people who have a BMI higher than mine. As long as my side effects aren't too bad, I think it's probably best for me to keep eating as much as I can, so I don't lose any more weight.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8

Tdubz
Posts: 132
Joined: Sun May 07, 2017 11:01 am

Re: Tips for a Folfox newbie – starting Tuesday

Postby Tdubz » Sun Jul 29, 2018 11:16 am

Make sure you have someone come with you at least on your fisrt infusion. I never felt like I could drive safely for the few days after infusions. Bring something to do. You will be there for 5-6 hrs. Some people could sleep but I never could. I’d read a book or watch a movie on my phone.

I didn’t get nausea medicine to take before infusions so I didn’t have to worry about that, I think mine was actually in the infusion itself. I did get some pills to take when I was at home afterwards though. I always took those every 6 hours as prescribed regardless if I was feeling nauseous or not. I figured better to be safe then sorry.

Keep track of all your symptoms, especially when they begin and end. You will need to report everything to your oncologist. If you are having lasting neuropathy for example, they might lower your next dose of oxaliplatin.

My infusions were always first thing in the morning, so I’d eat a good breakfast and then I’d try to get a meal for lunch I really enjoyed during infusion as well. You probably won’t want to eat much or be that hungry in the days following infusion, and food doesn’t always taste the same. I’d also use the infusion as my last chance to drink something cold, since after the infusion, it might be a few days or more until you can handle the cold again.

orlar
Posts: 65
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: Tips for a Folfox newbie – starting Tuesday

Postby orlar » Sun Jul 29, 2018 11:57 am

1) I always took anti-nausea pills for several days after my infusion as a routine to prevent nausea.
2) Have a pair of knit gloves around for anything you touch below room temp. (items from fridge/freezer)
The cold sensitivity can also affect the inside of your mouth, tongue, lips while eating/drinking. Room temp. food/drinks are your friends.
3) First bite is a weird stinging sensation upon eating or drinking something sweet, but only lasted a few seconds for me.
4) Everyone is different with different side affects. Mine lasted longer into the 2 week cycle during the later cycles of therapy.

Once you get the first cycle under your belt and know what to expect, you'll get in the "routine". Good luck and don't stress too much.
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56

Darn Blond Neon
Posts: 8
Joined: Thu Jul 26, 2018 7:18 am

Re: Tips for a Folfox newbie – starting Tuesday

Postby Darn Blond Neon » Sun Jul 29, 2018 1:57 pm

Many thanks to you all for those helpful replies... I have a morning of "training and education" at the hospital tomorrow - and you folks have given me lots of advice to follow up on! Thanks again...
- - - - - - - - - - - -
Male 48 years old
31st May 2018 – sigmoid colectomy due to complete bowel obstruction; no significant prior symptoms
7th June 2018 – pathology confirms 2.5cm tumour is cancerous; 3 of 12 lymph nodes affected – pT3 N1b Mx
31st July 2018 – Due to start 1 of 12 cycles of Folfox

boxhill
Posts: 125
Joined: Fri Apr 06, 2018 11:40 am

Re: Tips for a Folfox newbie – starting Tuesday

Postby boxhill » Sun Jul 29, 2018 7:16 pm

My advice is not to borrow trouble. :) You may never experience some of the side effects, or you may have a very mild version.

At the same time, be prepared. make sure you fulfill prescriptions for anti-nausea drugs so that you can hop right on it should nausea occur. Make sure you have immodium on hand in case you get bad diarrhea. Get a soft tooth brush.

My infusions start with premeds through the port, no pills: a steroid to fend off reaction to the oxaliplatin (and for anti-nausea), and two different anti-nausea meds, one of which is slower acting. I have never had any nausea, and haven't touched the prescriptions with one exception: lorazepam (aka Ativan). They recommend that I take one at night on infusion day to counteract the steroid and get better sleep. I've taken it a few other times when I feel I need some help with sleeping.

Beware of the cold sensitivity. It is likely to start during infusion. Don't drink anything cold, remember to run the faucet so the water is warm before washing your hands, use some kind of glove or mitt to take things out of the fridge. If you're in a cold place, you might need to put on warm socks when you get out of bed. I've even had to wear winter gloves in the house, but that's no longer a problem since things finally warmed up. (I live in Maine, LOL.) Some of my funniest experiences have involved trying to get a glass of warm tap water in restaurants. And then if you do, fending off the person who is constantly circulating with ice water! :D If your hands start prickling, run them under very warm water, and it will go away. My NP suggested taking a B Complex 100 capsule and 10grams of glutamine powder in water daily to fend off neuropathy.

Side effects I have had: diarrhea, some fatigue, some thinning hair, cold sensitivity, somewhat weird feeling in my mouth at times similar to the after feel of burning my tongue. All recede in the second week.
Side effects I haven't had: nausea, first bite, mouth sores, hand/foot, loss of appetite (DARN!), loss of taste (except for red wine, which is a good thing, LOL).
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule
11/20/18 CT scans NED. Lung nodule likely calcified granuloma. Enlarged spleen.

Tdubz
Posts: 132
Joined: Sun May 07, 2017 11:01 am

Re: Tips for a Folfox newbie – starting Tuesday

Postby Tdubz » Tue Jul 31, 2018 7:11 am

Good luck today! Lets us know how it went.

Darn Blond Neon
Posts: 8
Joined: Thu Jul 26, 2018 7:18 am

Re: Tips for a Folfox newbie – starting Tuesday

Postby Darn Blond Neon » Tue Jul 31, 2018 10:13 am

Thanks again, folks…

All good this morning - no drama, and I'm consciously trying not to anticipate / look for any side effects!

(Having said that, my fridge gloves are at the ready… https://i.imgur.com/YgiEcFJ.jpg )

I left with a bagful of meds. Omeprazole, Dexomethasone, Maxalon (Metoclopramide), Valoid (Cyclizine Hydrochloride) – and Ativan, on my personal request!

When you add on the over the counter medicine to either slow down or speed up my bowel, I suspect I have every possible eventuality covered…
- - - - - - - - - - - -
Male 48 years old
31st May 2018 – sigmoid colectomy due to complete bowel obstruction; no significant prior symptoms
7th June 2018 – pathology confirms 2.5cm tumour is cancerous; 3 of 12 lymph nodes affected – pT3 N1b Mx
31st July 2018 – Due to start 1 of 12 cycles of Folfox

User avatar
mobrouser
Posts: 110
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Tips for a Folfox newbie – starting Tuesday

Postby mobrouser » Tue Jul 31, 2018 2:17 pm

I'm glad that you had a good start and hope all future infusions are uneventful.
Did you come home with a pump?

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear

Darn Blond Neon
Posts: 8
Joined: Thu Jul 26, 2018 7:18 am

Re: Tips for a Folfox newbie – starting Tuesday

Postby Darn Blond Neon » Tue Jul 31, 2018 2:22 pm

Oh yes - forgot to mention the home pump... it’s one of the silent “no motor” ones, which is great.
http://dxline.info/img/new_ail/chemotherapy-at-home.jpg
- - - - - - - - - - - -
Male 48 years old
31st May 2018 – sigmoid colectomy due to complete bowel obstruction; no significant prior symptoms
7th June 2018 – pathology confirms 2.5cm tumour is cancerous; 3 of 12 lymph nodes affected – pT3 N1b Mx
31st July 2018 – Due to start 1 of 12 cycles of Folfox

Caat55
Posts: 544
Joined: Sat Dec 23, 2017 6:01 pm

Re: Tips for a Folfox newbie – starting Tuesday

Postby Caat55 » Wed Aug 01, 2018 5:21 pm

I found garden gloves, new ones obviously, worked great for cooking as they were insulated but with a rubbery surface for holding foods. Read labels, my oncology nurse told me to avoid all things with added folate, cereal, bread, flour, pasta, cornmeal. I have been baking with Bob's Red Mill organic flour, found sources for bread, Alpine Valley, and pasta from Europe.
One of the challenges for me was staying cool but avoiding fans, blowing air. I would have to leave air conditioned rooms to stand outside in 100 degree temps to get the tingling to stop and lump from my throat.

The effects of the treatment are cumulative in my experience so use this time to honor yourself, exercise, and be well. I finished all my chemo on July 19th. I can drink ice cold beverages, hold cold things and the lump in my throat is gone.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

User avatar
CRguy
Posts: 9675
Joined: Sun Feb 10, 2008 6:00 pm

Re: Tips for a Folfox newbie – starting Tuesday

Postby CRguy » Wed Aug 01, 2018 11:47 pm

Darn Blond Neon wrote:Oh yes - forgot to mention the home pump... it’s one of the silent “no motor” ones, which is great.
http://dxline.info/img/new_ail/chemotherapy-at-home.jpg

There is a temperature sensitive "valve" associated with most of these baby bottle infusers ... SO be careful with strenuous exercise, hot showers, sunbathing OR running any kind of fever =>> IF your body temp goes UP they will increase your infusion rate and you may experience overdosing of the 5FU component.

IF ANY issues or ???? = CALL YOUR DOCS / Infusion center ASAP
WORD !

Darn Blond Neon wrote:Thanks again, folks…
All good this morning - no drama, and I'm consciously trying not to anticipate / look for any side effects!
(Having said that, my fridge gloves are at the ready… https://i.imgur.com/YgiEcFJ.jpg )
I left with a bagful of meds. Omeprazole, Dexomethasone, Maxalon (Metoclopramide), Valoid (Cyclizine Hydrochloride) – and Ativan, on my personal request!
When you add on the over the counter medicine to either slow down or speed up my bowel, I suspect I have every possible eventuality covered…

While polypharmacy may have benefits, that cocktail has many possible opportunities for "treating the side effect, to control the side effect and creating more ... side effects !!! :shock: "

I found, as a minimalist, I did exactly what the docs ordered for the first cycle ... THEN with their advice and permission ... I decreased and deleted a lot of the "normal" meds dispensed to FOLFOX patients, and asked about 1 or 2 others if needed.

Been a vet for over 35 years : I know my drugs and have always found " less is often MORE " in terms of patient wellbeing

JMO

Best wishes ... and wait for it
1 cycle under your belt so less to go !!!!

and just FYI .... these treatments can ALWAYS be adjusted in terms of dosages, infusion rates and numbers of cycles IF they are kicking your ass
SPEAK to your Docs if you need to.

I did the dirty dozen of FOLFOX and had no major issues then, but still have low grade neuropathy now ( NON painful )

Cheers and Harmony on the Journey
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Tips for a Folfox newbie – starting Tuesday

Postby O Stoma Mia » Thu Aug 02, 2018 3:34 am

CRguy wrote:IF ANY issues or ???? = CALL YOUR DOCS / Infusion center ASAP

Just a note to say that you should probably have contact numbers that will put you in contact with relevant specialists 24 hours a day, 7 days a week. What often happens is that serious problems erupt on week-ends or holidays when the infusion centers and doctors offices are closed and their telephones are not being answered. It's important to know what you are expected to do if a problem develops when the usual doctors are not in the office.

In your case, there will be a 3-day long weekend for Labor Day that will start four days after your third infusion. Do you know what you will do if the cumulative effect of your chemo starts to kick in during the third cycle? (A 3-day long week-end is a long time to wait for help to arrive.)


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



Who is online

Users browsing this forum: dragonpppoe and 43 guests