Tips for a Folfox newbie – starting Tuesday

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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 » Thu Aug 02, 2018 3:45 am

Thanks for that tip - I’m in today to get the home pump disconnected, and I’ll ask them that question... there is also a public holiday in Ireland this Monday.

So far so good, apart from a wave of nausea yesterday morning - I now take the anti nausea meds 30 minutes or so *before* food and that seems to be helping.

Also got some really seismic bouts of hiccuping yesterday - so far managed with eye-rolling patience from those around me, and deep breathing exercises from me...
- - - - - - - - - - - -
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

Jannine
Posts: 30
Joined: Wed Jun 20, 2018 7:46 am

Re: Tips for a Folfox newbie – starting Tuesday

Postby Jannine » Thu Aug 02, 2018 8:04 am

I've got that same kind of infusion pump! Mine looks a little different, but it's totally silent. I call it my chemical piglet, lol. I got the warnings to be careful not to get too warm or exercise while I'm hooked up to it, for the reasons described.

The warning I got from the nurse on my second infusion (but not the first) was to be careful not to let the smaller second sensor (the one that isn't taped to your body) get wet; she said that that could make the pump stop. I was like, well that's good to know! Mine has usually finished infusing by the time I get up in the morning on disconnect day.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid colon resection (24 cm removed); no stoma.
1 noncontiguous tumor deposit found and removed; margins clear
7.5cm X 6cm X 2cm adenocarcinoma -- G2 (moderately differentiated)
T3 pN1c M0
31 lymph nodes tested, 0 positive.
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; 2nd infusion delayed because of neutropenia; Neulasta after all future infusions

mobrouser
Posts: 45
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Tips for a Folfox newbie – starting Tuesday

Postby mobrouser » Thu Aug 02, 2018 8:57 am

I' m given the same portable bottle too.
First cycle it hadn't quite emptied by disconnect time but all the subsequent ones were done by 42 hours.
The volunteers at the cancer centre sewed or crotcheted pouches that hang around your neck to hold the bottle.
I'm only 5'2" and they gave me one that would fit someone 6' +. I felt a bit like Borat except it wasn't lime green.
8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic 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)
CT scan Aug 8 2018 - Clear
CEA - 01/15/18 - 2.8 07/29/18 - 5.3 Waiting for PET scan to be scheduled

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 Aug 05, 2018 1:26 pm

Hello all - the very minor side affects abated even further over the past two days, which is great. I split my last steroid dose to give me a slight tapering into another morning, but I probably didn't need to!

From tomorrow - day 6 - I'm now advised to take the two anti nausea meds "as needed" rather than three times a day... What have your experiences been of this transition?

I'm tempted to take the Maxalon (Metoclopramide) first thing as usual, but leave out the Valoid (Cyclizine) unless I actually feel nauseous. What do you all think?
- - - - - - - - - - - -
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

Jannine
Posts: 30
Joined: Wed Jun 20, 2018 7:46 am

Re: Tips for a Folfox newbie – starting Tuesday

Postby Jannine » Sun Aug 05, 2018 2:39 pm

Aside from the doses they have given me before Oxaliplatin starts, I've only taken anti-nausea meds after getting home (at first I took Zofran, but I backed off that and went to Compazine instead). After that I've only taken them for occasional morning and evening ickiness. I really haven't felt truly nauseous yet. I've mostly been taking the less-heavy hitter I was prescribed, Compazine, rather than Zofran. Zofran tends to constipate, which I'd prefer to avoid.

I haven't been given any steroids; not sure about when they decide to give them and when they don't.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid colon resection (24 cm removed); no stoma.
1 noncontiguous tumor deposit found and removed; margins clear
7.5cm X 6cm X 2cm adenocarcinoma -- G2 (moderately differentiated)
T3 pN1c M0
31 lymph nodes tested, 0 positive.
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; 2nd infusion delayed because of neutropenia; Neulasta after all future infusions

User avatar
ANDRETEXAS
Posts: 581
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Tips for a Folfox newbie – starting Tuesday

Postby ANDRETEXAS » Sun Aug 05, 2018 3:03 pm

Keep your eye on the prize.....visit with your oncologist of any side effects before each round .....stay strong and stay positive and know there's light at the end of the tunnel. All the best ! Andre
2014
2/10 - Colon resect
2/13 - DX- Stg IIIb
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

ONE DAY AT A TIME !

boxhill
Posts: 90
Joined: Fri Apr 06, 2018 11:40 am

Re: Tips for a Folfox newbie – starting Tuesday

Postby boxhill » Mon Aug 06, 2018 10:58 am

Jannine, are you sure you aren't getting a steroid as a pre-med before the infusion? That's when I get it (dexe-something). It is given for two reasons, mostly: to stave off any allergic reaction to oxaliplatin, and as an anti-nausea aid. I talked with my onc about possibly not taking it, since it wreaks havoc with my blood sugar, but he said that the primary thing was to avoid an allergic reaction to oxy, so we agreed it would be very unwise for me to try to do without it. I am not given any in pill form: only the pre-infusion push.
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, mut KRAS, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

mobrouser
Posts: 45
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Tips for a Folfox newbie – starting Tuesday

Postby mobrouser » Mon Aug 06, 2018 11:23 am

My oncologist prescribed Dexamethasone (steroid) and Ondansetron both in pills to be taken minimum 1 hour prior to chemo. The 1 hour prior was difficult on the days when I had blood tests scheduled the same day as infusion as for the first 7 infusions I was never sure if I would get the go ahead due to low platelets and neutrophils. The Ondansetron also had to be taken 12 hours after the first dose. I was also prescribed Prochlorperazine to be taken as needed after infusion.

I thought at first it was the Dex that was giving me sleep problems after infusion but found that it was actually the Ondansetron which counteracts serotonin. Anyway I took both before every infusion but didn't feel the need to take the Prochlorperazine. Any nausea I felt was never strong enough to make me vomit thankfully as it seems I was prone to every other side effect possible.

As others have said, talk with your oncologist or their assistant to discuss your concerns. They will work with you to make infusion as comfortable as possible.

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic 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)
CT scan Aug 8 2018 - Clear
CEA - 01/15/18 - 2.8 07/29/18 - 5.3 Waiting for PET scan to be scheduled

AppleTree
Posts: 189
Joined: Fri Mar 18, 2016 8:16 am

Re: Tips for a Folfox newbie – starting Tuesday

Postby AppleTree » Mon Aug 06, 2018 10:37 pm

You got lots of good tips!

I would add...make friends with the oncology nurse. She/he will be able to help you more than the receptionist! My nurse was often available when the DR was not. She also could call in basic RX to the pharmacy. Of course, some RX have to be on the blue paper now a days because they are narcotics. So, remember to get your RX refills on the blue paper before you get too low or you might have to make an extra trip back to the hospital to get it.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!

Koreysue
Posts: 8
Joined: Mon Apr 30, 2018 2:36 pm

Re: Tips for a Folfox newbie – starting Tuesday

Postby Koreysue » Tue Aug 07, 2018 12:56 pm

Hi,
I just wanted to put in my two cents. I did folfox a year ago and found the neuropathy to be the worst symptom for me. My naturopath reccomemded L. Glutamine the day prior to chemo through the day after. It’s a powder you dissolve in water. It did seem to help with my symptoms plus it helps to protect your gut lining from the effects. Something to ask your onc about.
Also, remaining active if possible is so important for your physical and mental health.

Wishing you well.
Korey
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7

lakeswim
Posts: 62
Joined: Sat Mar 31, 2018 9:37 am

Re: Tips for a Folfox newbie – starting Tuesday

Postby lakeswim » Thu Aug 09, 2018 3:55 pm

Hello!
I am chiming in. So much good advice here. First off, I'm sorry you are here. Second, it is totally true that everyone is different, so don't be too freaked out by what is said here. Be mindful of how YOU feel and advocate for yourself when things become bad. My first infusion was a non-event. Rounds 2 and 3 were dreadful - the constant hand and leg cramping so I couldn't hold anything or walk was the worse of it (but there was more that I won't get into here). Round 3, I had such terrible constipation (never had been constipated before in my life) that I nearly had a trip to the ER. (And if I had to choose between a hell week after infusion and the 3 days I dealt with the constipation, I'd take the chemo week.) I had (and have) many other side effects that the others had, but suffice to say, communicate with your Onc team. I spoke to my Onc nurse after Round 3 and I felt as if she thought I was a baby. But I advocated for myself and met with my Onc and he agreed that my reaction to the Ox was extreme and he decreased my Ox dose by half. That made things more bearable for me for Round 4 (no cramping). Anyway, I have found that each round is an adventure with its own challenges (and some side effects are consistent throughout). I was forced to take a 2 week break before Round 5 as I had elevated liver enzymes and that break was loooooovely. Round 5 was tolerable but I am betting it will escalate again. I have 3 more rounds. My chemo is prior to radiation and surgery. I am 49 and was a picture of health before this happened. So, hang in there and hope for the best and advocate for yourself if it starts to get too bad. Good luck.
49 - F
RC - dgns March '18 (colonoscopy aftr 6 mos blood in stool)
Adenocarcinoma
10-11 cm from anal verge
T4N0M0
Stage 2
Started FOLFOX May '18 (8 rounds total chemo - then 6 wks chemo/rad - then surgery)

lakeswim
Posts: 62
Joined: Sat Mar 31, 2018 9:37 am

Re: Tips for a Folfox newbie – starting Tuesday

Postby lakeswim » Thu Aug 09, 2018 3:58 pm

One more note. I think the pre-meds (steroid and anti-nausea meds) they give me at infusion make me feel bad (I don't take the anti-nausea meds at home) but they don't recommend dropping them. Someone here mentioned going without some meds. I wish I was brave enough to try.
49 - F
RC - dgns March '18 (colonoscopy aftr 6 mos blood in stool)
Adenocarcinoma
10-11 cm from anal verge
T4N0M0
Stage 2
Started FOLFOX May '18 (8 rounds total chemo - then 6 wks chemo/rad - then surgery)

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 » Fri Aug 10, 2018 8:23 am

lakeswim wrote:Hello!
My first infusion was a non-event. Rounds 2 and 3 were dreadful.


Gosh, you've had a rough ride - my sympathies. In the weird world I now live in, I truly appreciate how lucky I am that my cancer was caught and cut out with (almost) no prior symptoms or advance warning… I would not have coped well with the waiting and wondering.

I'm also conscious of the advice of @boxhill to not borrow trouble! I've seen this advice expressed in a number of ways across this board, and now that I've started my chemo, it's an attitude I'm working hard to adopt. I tend to be a catastrophist at the best of times, and I've now seen the practical benefits of dealing with the now rather than worrying about the what if…

Thanks again to you all for the great advice and experiences. I was really struggling to imagine what the experience would be like for me. With one round under my belt and your experiences in my in-box, while I'm not taking anything for granted, I'm less daunted by a crippling fear of the unknown.

For others who are new to Folfox, I found that water and walking were useful for me in week one. The chemo nurse "prescribed" that I walk 10,000 steps a day and drink 3 litres of water every day. This, and fine-tuning my fibre intake, became my "job". When I was jittery or just feeling odd, I would walk… and the sense of control it gave me was worth more than the tiny endorphins it released.
- - - - - - - - - - - -
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: 483
Joined: Sat Dec 23, 2017 6:01 pm

Re: Tips for a Folfox newbie – starting Tuesday

Postby Caat55 » Fri Aug 10, 2018 9:03 am

Darn Blond Neon wrote:
lakeswim wrote:Hello!
My first infusion was a non-event. Rounds 2 and 3 were dreadful.


Gosh, you've had a rough ride - my sympathies. In the weird world I now live in, I truly appreciate how lucky I am that my cancer was caught and cut out with (almost) no prior symptoms or advance warning… I would not have coped well with the waiting and wondering.

I'm also conscious of the advice of @boxhill to not borrow trouble! I've seen this advice expressed in a number of ways across this board, and now that I've started my chemo, it's an attitude I'm working hard to adopt. I tend to be a catastrophist at the best of times, and I've now seen the practical benefits of dealing with the now rather than worrying about the what if…

Thanks again to you all for the great advice and experiences. I was really struggling to imagine what the experience would be like for me. With one round under my belt and your experiences in my in-box, while I'm not taking anything for granted, I'm less daunted by a crippling fear of the unknown.

For others who are new to Folfox, I found that water and walking were useful for me in week one. The chemo nurse "prescribed" that I walk 10,000 steps a day and drink 3 litres of water every day. This, and fine-tuning my fibre intake, became my "job". When I was jittery or just feeling odd, I would walk… and the sense of control it gave me was worth more than the tiny endorphins it released.


I think walking and drinking are good advice. I got in over 10000 most days in first three rounds, was much harder to do much last one. I kept flowers and garden growing, nourished myself with nature. Tried to wash that stuff out with water, tea.
Just one foot in front of the other.
S
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

User avatar
horizon
Posts: 1473
Joined: Tue Apr 12, 2011 10:10 pm

Re: Tips for a Folfox newbie – starting Tuesday

Postby horizon » Fri Aug 10, 2018 9:07 am

Darn Blond Neon wrote:Thanks again to you all for the great advice and experiences. I was really struggling to imagine what the experience would be like for me. With one round under my belt and your experiences in my in-box, while I'm not taking anything for granted, I'm less daunted by a crippling fear of the unknown.


I was more worried about the chemo than I was the surgery. You're right, once you've got one session behind you it's different and you can start to focus on getting through it instead of wondering what it will be like.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 7 years NED). Is this real life?


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