What Helped You Make It Through Folfox Cycles 6-8

Please feel free to read, share your thoughts, your stories and connect with others!
Deep
Posts: 35
Joined: Thu Nov 01, 2018 6:10 pm

What Helped You Make It Through Folfox Cycles 6-8

Postby Deep » Sun Sep 15, 2019 7:19 pm

I have chemo in the morning and must say, the side effects are definitely cumulative. I feel nauseous just thinking about going in the morning. The headaches are pretty severe and have been waking me up at night. And, the neuropathy is sticking around this time around. Not as intense, but still there. Just wondering if anyone has any tips or advice for making it through chemo. I feel like tapping out...
11/29/18 Diagnosed T3N1 Rectal Cancer (Age 39, Male, no family history)
01/02/19--02/7/19--- 25 rounds radiation/chemo (Capecitabine 2000 mg)
04/15/19 Surgery, temp ileostomy (Tumor Staged T2)
7/8/19-10/15/19 Chemo (8 Rounds) Folfox
11/12/19- Scan NED

User avatar
horizon
Posts: 1526
Joined: Tue Apr 12, 2011 10:10 pm

Re: What Helped You Make It Through Folfox Cycles 6-8

Postby horizon » Sun Sep 15, 2019 7:32 pm

Deep wrote:I have chemo in the morning and must say, the side effects are definitely cumulative. I feel nauseous just thinking about going in the morning. The headaches are pretty severe and have been waking me up at night. And, the neuropathy is sticking around this time around. Not as intense, but still there. Just wondering if anyone has any tips or advice for making it through chemo. I feel like tapping out...



Make sure you tell them about all of your symptoms. They dialed back my Oxi dosage when I started feeling neuropathy.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

sbpaq1
Posts: 10
Joined: Sat Aug 25, 2018 8:09 pm
Facebook Username: Matthew

Re: What Helped You Make It Through Folfox Cycles 6-8

Postby sbpaq1 » Sun Sep 15, 2019 7:41 pm

Tell them to crank up the pre meds for any nausea, don’t resort only to zofran. As the other poster mentioned if the non cold type of neuropathy is sticking around inform them immediately.
Age 30, Male
07/05/18 - Colonoscopy, T3N2M0/Stage IIIB Rectal, MSS and High Grade
09/10/18 - 28 Days Xeloda/Radiation
10/11/18 - MRI decrease in Tumor & Nodes
11/19/18 - lAR
12/06/18 - Bad news, Surgery margins inconclusive, 17 of 19 nodes, PNI & LVI
12/09/18 - Bad news, 2 spots on liver and 1 on Lung, XELOX start
02/15/19 - Good News! Lung spot gone, Liver Spot down to 1, Nodes shrinking.
06/15/19 - bad news! Rectal recurrence and node increase
07/01/19 - folfiri
08/23/19 - surgery consult unc

User avatar
ginabeewell
Posts: 371
Joined: Wed Oct 24, 2018 10:30 am

Re: What Helped You Make It Through Folfox Cycles 6-8

Postby ginabeewell » Sun Sep 15, 2019 7:44 pm

My neuropathy started to not “snap back” at about eight doses too. Dr K took me off of it and wouldn’t put me back even when I asked!

I did wind up with a chemo break after 5. Not intentionally, but I had an infection and needed 7 weeks to heal. I was in bad shape between the chemo and the infection, and I think I gained back 20 lbs in that time. I tolerated the return to chemo much more easily.

For what it’s worth, chemo has never been as bad for me. I just finished my 18th cycle and the last three - all after my first liver resection - have been pretty easy. So it’s not ALL cumulative.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: What Helped You Make It Through Folfox Cycles 6-8

Postby Rock_Robster » Sun Sep 15, 2019 7:53 pm

Yep I feel you - rounds 6-8 were the hardest for me (then an allergic reaction on round 8!).

Things that helped me:
- added Emend (aprepitant) as an anti-nausea pre-med
- added Neulasta injections to help boost neutrophils
- started using cannabis products, particularly full-spectrum THC/CBD oil - amazing stuff
- twice-weekly acupuncture between sessions for fatigue, nausea and neuropathy

Good luck, hope some of this is useful.

Cheers
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

Gravelyguy
Posts: 261
Joined: Thu Jul 05, 2018 6:03 pm

Re: What Helped You Make It Through Folfox Cycles 6-8

Postby Gravelyguy » Sun Sep 15, 2019 9:57 pm

Those last three rounds were right up there with the first four (pre surgery) which included Vectbix. I think what got me through them was keeping my eye on the prize. I was doing this for a reason. I wanted to be there for my family for as long as I could and those rounds were going to help me get there.

I also had a whole lot of people praying for me. I am convinced that that helped get me through it because I don’t think I was strong enough on my own to make it.

Between the side effects of the oxy and the steroids it is a bear.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

boxhill
Posts: 404
Joined: Fri Apr 06, 2018 11:40 am

Re: What Helped You Make It Through Folfox Cycles 6-8

Postby boxhill » Mon Sep 16, 2019 10:44 am

I had a pretty easy time with FOLFOX, compared to some. Days of crushing fatigue, but no outright nausea. I do remember telling people when I reached cycle 8 that it was wearing on me at that point.

As soon as you start feeling residual tingling in your fingers that lasts beyond the initial cold-sensitivity days, ask to cut back the oxy (if they don't suggest it first). It is fine to halt it altogether near the end. You want to minimize long-term neuropathy.

Do you know what premeds they are giving you? Mine included steroids and longer-acting anti-nausea drugs like Emend from day 1, which is perhaps one reason why I was never nauseous. I was also given 3 different drugs to take at home if I did have symptoms, and they encouraged me to get right on top of it and switch from drug to drug as needed. During my first infusion they gave me Sustol, but I found the local reaction to it (in my arm) so painful and lingering that I refused it before the second one. It can be given in the belly, which I gather can be less painful, so if you are really troubled by nausea that's another option. I found that eating something small, like crackers or a little applesauce, and avoiding a completely empty stomach made me feel better.

Drink a lot of fluids while on the pump. If you feel crappy when you go back to be unhooked, ask them to give you a bag of fluids then. It helps a lot of people. My center advises taking an ativan before bed on infusion day to counteract the insomniac affects of the pre-med seteroid.

Rest when you need it.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

zephyr
Posts: 263
Joined: Thu Aug 18, 2016 7:31 am

Re: What Helped You Make It Through Folfox Cycles 6-8

Postby zephyr » Mon Sep 16, 2019 5:31 pm

I don't know if someone mentioned this and I missed it but it's important enough to repeat: the reason you MUST tell your oncology team about neuropathy progression is because if they don't adjust the dosage soon enough, the neuropathy can be permanent. As for nausea, I couldn't take the anti-nausea meds so I used Sea-bands, ginger, and medical marijuana. Many months afterwards, a surgical RN mentioned that peppermint cream on your upper lip will do wonders for nausea. I've tried it - but only for general nausea, not chemo nausea - and it worked reasonably well but it didn't last long. I happened to have on hand a small tube of Peace of Mind roll-on cream by Origins but I'm sure you can find others.

Someone told me about Relief Band for chemotherapy nausea. I can't recommend it because I never tried it but the person who told me was very enthusiastic about it. Below is an Amazon link; in my experience, Amazon is terrific about returns if something doesn't work as advertised, so long as you return it promptly.

Relief Band ---> https://tinyurl.com/y4tghzc5

Hope you find some relief!
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

User avatar
ANDRETEXAS
Posts: 625
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: What Helped You Make It Through Folfox Cycles 6-8

Postby ANDRETEXAS » Mon Sep 16, 2019 11:39 pm

I was able to finish 12 rounds of FOLFOX with full oxaliplatin, but it took a lot of determination and drive. I exercised and slept (sometimes 15 hours at a stretch) through rounds 8-12. I almost quit eating because everything tasted like cardboard. Pellegrino and soup were my life savers. I did start getting neuropathy around No 6, but I discussed that and all my side effects with my oncologist before each round. I think he asked me if I wanted to reduce the oxaliplatin at Round 12, but I told him "no," mostly because I'm stubborn and I have determination (or stupidity). I know many times there are more serious occasions where stopping the oxaliplatin is necessary. You and your doctors should decide what's best for YOU. I didn't have any nausea during my chemo. I really just put myself and my mind in a zone. I took one day and one round at a time and hardly concentrated on anything else except getting to the finish line.
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 !

NHMike
Posts: 2335
Joined: Fri Jul 21, 2017 3:43 am

Re: What Helped You Make It Through Folfox Cycles 6-8

Postby NHMike » Tue Sep 17, 2019 8:23 am

The tools are to take a break (one week two times for me), or drop the dose or drop the Oxaliplatin for one cycle.

Talk to your oncologist about your systems and they will make suggestions.

This chemo is very rough stuff - quite a bit harder than Neo-Adjuvant. This is one of those reasons why people are impressed with survivors as they think that you've been through hell. Well, you have been or are going through hell.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Deep
Posts: 35
Joined: Thu Nov 01, 2018 6:10 pm

Re: What Helped You Make It Through Folfox Cycles 6-8

Postby Deep » Tue Sep 17, 2019 8:40 am

Thanks for all the replies. The anti nausea meds that I got are Ondansetron and Prochlorperazine. They gave me Benadryl as well. I am on my pump right now but felt nausea when getting my infusion yesterday. I informed my Doctor but no changes were done to my chemo. I think what has been happening is that I wasn't taking the nausea meds as prescribed, and it caught up with me. I will push through this. Only two more rounds to go. If I can manage to keep the nausea at bay, I will make it. My Doctor told me to take the Ondansetron and Prochlorperazine at the same time, and if that doesn't work, add the Benadryl. So far, this has been working. I feel fine right now, but just have to remember to take the meds on a schedule.
11/29/18 Diagnosed T3N1 Rectal Cancer (Age 39, Male, no family history)
01/02/19--02/7/19--- 25 rounds radiation/chemo (Capecitabine 2000 mg)
04/15/19 Surgery, temp ileostomy (Tumor Staged T2)
7/8/19-10/15/19 Chemo (8 Rounds) Folfox
11/12/19- Scan NED

AmyG
Posts: 301
Joined: Tue Dec 25, 2018 8:08 pm

Re: What Helped You Make It Through Folfox Cycles 6-8

Postby AmyG » Tue Sep 17, 2019 12:58 pm

Set an alarm on your phone maybe?

I've never felt sick, at all, during chemo. Fatigue was what got me. Not much can be done for that than being horizontal as much as possible.

Hope you get through with minimal ill effects!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!


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



Who is online

Users browsing this forum: Google [Bot] and 31 guests