Help plz- discouraged after 3rd Folfox

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Rebequita
Posts: 18
Joined: Fri Jul 10, 2015 6:54 pm

Re: Help plz- discouraged after 3rd Folfox

Postby Rebequita » Mon Mar 07, 2016 11:11 am

HopeForJesse wrote:Thank you Rebequita - do you just take it for those 4 days each round? Or daily while on chemo?


Hi,
They administered it through my port just prior to each infusion, and then sent three 10 mg tabs home with me, one for each day following the infusion. This is a high dose, but my nausea was so severe and debilitating that I decided to stick with the higher dose. Then the nausea would pass/become manageable and I wouldn't need it until my next round. I did an infusion every three weeks, coupled with oral Xeloda for the first two weeks of each cycle. I'm not sure how I would have coped without the Zyprexa - it truly made all the difference. Hang in there!! Hoping they can find the right cocktail for your husband.
6/15 Diagnosed RC Stage IIIb at age 38
7/15 Neoadjuvant Radiation and Xeloda
10/15 Lower Anterior Resection and temporary ileostomy; tumor shrunk to "in situ" and removed with clean margins; 0/19 nodes positive for cancer
11/15 Began 6 rounds of Oxaliplatin infusion/oral Xeloda
12/15 Negative for Lynch
3/16 NED
4/16 Ileostomy reversal
8/16 NED

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kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Help plz- discouraged after 3rd Folfox

Postby kellywin » Mon Mar 07, 2016 1:28 pm

HopeForJesse wrote:I don't want to be pushy but want him to fight if there is any chance this can be temporary and he gain quality time. Am I being selfish? Do I need to step back here and respect his rights as the patient or is this where I need to hold my ground for his sake to get him through it?


1. Yes, step back. As others said, this is his decision, not yours. Chemo is an awful thing, not just physically, but mentally. You have no idea what it's like to go into that place and voluntarily let them POISON you. But you should try and encourage him to speak with the docs to get this nausea under control.

2. Head off the nausea as others said. Take everything as prescribed, don't wait for it to happen.

3. Fatigue - yes, sometimes I slept for an entire day and then the following day, didn't get off the couch.

3. Food. It tastes like shit on chemo. A few times the most I could manage was crackers. Even water tasted horrid.

Good luck to your husband.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

kandj
Posts: 301
Joined: Sun Sep 27, 2015 11:29 am

Re: Help plz- discouraged after 3rd Folfox

Postby kandj » Mon Mar 07, 2016 1:37 pm

canadiandaughter wrote: My dad also sleeps a lot more on folfox than he did on folfiri and it also upset my mom. We
have to keep reassuring her that it is NOT the cancer, it's the chemo!!!!


I have noticed DH sleeps less on Folfiri then FOLFOX also. He slept through most the infusion on day 1, would be ok for part of day 2, just little lie downs here and there, until about 4pm, then it was off to bed. And on Day 3 (discharge day) he would sleep until discharge, I would take him in for discharge, would get fluids and steroids, sleep thorough that as well, then go back home and sleep. first day off chemo was a recoup day, and then he was much much better. Folfiri has him sleeping less, but still very tired. He does seem to eat more with Folfiri though. I always bring food to him on Day 1 at the oncologist office. I try to get him to eat a good lunch on day 2 at least, since dinner is hit or miss. He tended to not eat until dinner time on day 3 when on FOLFOX.

Chemo sucks. Try to be as supportive as you can, but in the end it is his body. I tell DH how much I love and admire him, I try to make everything else around him as easy as possible (kids, house work, etc) on those days. The kids know Daddy has to sleep a lot when he wears the funny bag (the chemo pump for the 5FU). It is so hard to watch someone you love, someone you have been married to for years suffer in this way. We both keep saying that this is going to be worth it to get him cancer free. But it just sucks.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again

macpudd
Posts: 120
Joined: Tue Jul 21, 2015 7:00 pm

Re: Help plz- discouraged after 3rd Folfox

Postby macpudd » Mon Mar 07, 2016 1:37 pm

Hello HopeForJesse,
When I was on Folfox I was very tired and sleepy for five to seven days after infusion and would sleep for long periods. I was on Dexamethasone which helped with the nausea, but had to come off it as it made me feel very down, then went on Zofran which I found worked well except for constapation. Also when I ate salads and some fruits or spicy foods it increased my nausea, had to have a very bland diet, thankfully I had no problems with biscuits and sweets. So sorry that you and your husband are in this situation, hopefully things will improve soon.
Regards
Macpudd
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm tumor on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain craniotomy 80% of tumour removed pathology says gbm4
6 weeks of rad and Temodar chemo and then 6 monthly cycles of Temodar
MRI in Oct no tumor
Mri Jan 2019 tumour growth Feb Pet scan tumour 6cm, no surgery, starting Avastin also Lomustine

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elise
Posts: 1519
Joined: Fri Apr 27, 2012 5:09 pm
Location: Ontario (Canada)

Re: Help plz- discouraged after 3rd Folfox

Postby elise » Mon Mar 07, 2016 7:17 pm

I used Emend with better success. But truly FOLFOX does suck.

I think every chemo patient hits a point where they wonder what the hell they're doing. Personally I needed to talk to someone else who had done it. Then I had to dig really deep. Encourage him to look at WHY he wants to continue. What does he have to gain.

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

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HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: Help plz- discouraged after 3rd Folfox

Postby HopeForJesse » Mon Mar 07, 2016 9:24 pm

Thanks again all. Spent the day at the hospital for dehydration and got some antibiotics too. Something else seems to be going on as DH had a fever. Waiting for culture tests but nausea slightly better now. Doc is checking with insurance for Emend but said he wants to try chewer Kytlin first. Really appreciate all of the insight.
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

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HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: Help plz- discouraged after 3rd Folfox

Postby HopeForJesse » Mon Mar 07, 2016 9:25 pm

'Cheaper' not 'chewer' - typed too fast!
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Help plz- discouraged after 3rd Folfox

Postby midlifemom » Tue Mar 08, 2016 7:16 am

Hope the antibiotics and IVs helped!
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?


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