Quality of life on Folfox and others

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Quality of life on Folfox and others

Postby Lydia666 » Tue Oct 16, 2018 2:30 pm

Friends, who can tell me if the quality of life of various chemo protocols is still reasonable.

How terrible is living with neuropathy? What are the nastiest side effects?

Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

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Re: Quality of life on Folfox and others

Postby mhf1986 » Tue Oct 16, 2018 3:41 pm

DH was on FOLFOX +Avastin for 18 months with a short summer break in the middle. He had treatments on Tuesdays and took off those Thursdays to nap/have port needle removed. There was some neuropathy (he can still type fine), some sensitivity to cold, and some fatigue. Lots of good pretreatment drugs.

Irinotican was much harder because of diarrhea. He got some Lomotil last time and that's helped.

Vectibex caused face breakouts but not horrible.

He's said he'd do any again if they'd work again.

Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

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Re: Quality of life on Folfox and others

Postby dianetavegia » Tue Oct 16, 2018 3:44 pm

I completed FOLFOX 9 years 3 months ago and still feel like I'm walking on sand. My fingertips always tingle and I drop things easily. Several years after chemo ended, the tingle moved from my feet slowly up to my knees. I have L'Hermitte's Sign (or syndrome - same thing) and it's just part of my new normal.

I didn't tell my onc about the L'Hermitte's symptoms until a year or more after chemo ended. He was very upset and said they would have stopped chemo if he'd known. It could have crippled me, or as he put it, 'spent the rest of your life in a wheel chair'. Well, that was a long time ago and it's just the new normal.

Even tho my blood work is perfect, I'm tired every day and really need a nap. Most days I'm up at 6, nap from noon til 1 or 2 and by supper time, I'm tired again. Once I cook and eat, I get my energy back and watch TV or other activities until around 11 p.m.

The scariest thing about FOLFOX was the first time I attempted to drink cold tea. I thought my throat was completely frozen and coated with ice. It passed quickly but after that, I drank room temperature or warm foods during chemo.

Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. PET = 1.5cm liver met. HR 4/11/12 No chemo

Over 10 years since dx and 7 years post liver resection.
NED since 2012

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

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Re: Quality of life on Folfox and others

Postby Jannine » Tue Oct 16, 2018 7:02 pm

I've had 8 of my 12 doses of FOLFOX and have no neuropathy yet. The cold sensitivity is pretty awful the first several days for me, but within 4-5 days I can drink chilled water (not ice water), and almost a week after treatment I can handle things out of the fridge reasonably well (although glass is more challenging than plastic containers). I can usually eat ice cream the last 4 days or so before my next Oxaliplatin dose. If I try to eat ice cream before then, it is like trying to eat glass. I have also learned that fountain drinks in restaurants are kept much colder than regular fridge temps. Being able to drink something out of the fridge doesn't mean I can drink something cold in a restaurant.

The most surprising thing for me has been that once I get tingly fingers I need to run warm water over them for quite a while to get them solidly warmed up again. Just 15 seconds of warm water will not do the trick; my fingers would start tingling again before I even get my hands dry. The tingly feeling from cold sensitivity can last quite a while for me if I don't do something to warm up my hands or feet. I was convinced I had neuropathy at one point because of that, but no; just cold sensitivity.

Other than that my side effects haven't been bad; my appetite tends to be lousy for several days after chemo, but I try to make up for that once I get it back. I've had no nausea at all;they give me Zofran and Compazine before each infusion but I haven't taken either at home since my first infusion, despite having them on hand. I actually had some stomach discomfort after the first few infusions, and did a lot of burping for a couple days after each one, but I'm not having that any more.

I made it through my first 6 rounds of FOLFOX without any significant fatigue, but rounds 7 and 8 I've needed naps Sunday/Monday/Tuesday (after a Friday infusion). Wednesday tends to be back to normal for me; I don't get out of breath going up a couple flights of stairs by Wednesday, etc. I was in good health before all this started and my oncologist thinks that's a big factor in how well my body is handling this stuff. That said, I've had my liver enzymes shoot up significantly once, and now my platelets are getting low enough that they are decreasing my FOLFOX dosage by 25%. It seems like the whole thing varies wildly from person to person.

Also it sounds like neuropathy generally starts in the feet first and lingers there longest. I'm super concerned about developing it in my hands but I'm hopeful that we'll catch it early enough (if I have it) when it gets my feet so that it won't cause problematic damage in my hands.
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

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Re: Quality of life on Folfox and others

Postby Pat » Tue Oct 16, 2018 10:56 pm

I found that wearing gloves almost 24/7 was helpful. The cheap stretchy type worked well for everything except my phone. I had 6 pairs to cycle thru the wash. I drank warm water during my nine months of treatment and one month after. I am 2 years out from last treatment and find the residual neuropathy is only slightly annoying. I still become fatigued when in temperatures below 50 degrees. Shoes & socks are a must except during Summer, feet hurt if not kept warm. Neuropathy was frustrating during treatment but not so much now. I’d do it again.
57 yr old. Dx 9/2015, Stage IIIc T4aN2bM0 BRAF/V600e
10/2015 Right Hemicolectomy
High Grade, poorly differentiated Adenocarcinoma of the Hepatic Flexure
25 of 30 lymph nodes cancerous extranodal extension
Barrett's Esophagus
11/2015 Folfox 12 cycles stopped 3x for month each due to low blood counts
7/30/2016 - finally finished Folfox
9/15/2016 - Clear colonoscopy, 1 sessile polyp
9/7/2017 - clear colonoscopy, next due in 3 yrs

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Re: Quality of life on Folfox and others

Postby crikklekay » Thu Oct 18, 2018 10:25 am

My DH did all 12 rounds of Folfox, though near the end the Oxy was reduced due to neuropathy. The cold sensitivity didn't bother him much, we just kept a pair of knit gloves by the fridge, in his car, at his job etc to make sure he could snag them when needed. He works in the foodservice industry so whenever he needed to handle cold food products he just put on a pair of latex gloves over his knit ones and that worked well. He was always the most tired the day his pump was removed and the day after, but he always bounced back after hydration a couple of days later. I think the thing that lowered his quality of life the most was the taste changes. First it was just one or two things that tasted off, but it quickly developed into anything that stayed on his tongue longer than a few seconds tasted like a combo of ash and glue paste. For about two months he was on a purely liquid diet because that's all he could stand and it made him miserable. I think it will be a long time before he willingly eats a shake, smoothie or bowl of soup.

As for lasting effects, he has numbness in the soles of his feet and tips of his fingers. It doesn't bother him, though sometimes he says it feels a little odd. He does now have a tendency to drop things now because he can't feel them slipping and that upsets him, so he would say that's the worst part of the neuropathy. Our oncologist said that would hopefully diminish with time though it would take a while, he's also on B vitamins to help with the healing.
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD

Achilles Torn
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Re: Quality of life on Folfox and others

Postby Achilles Torn » Sat Oct 20, 2018 12:46 am

I did 12 rounds of FolFox and Bevicuzimab and about 15 more of 5FU and Bev (now on round 2 of Xeloda and Bev). Side effects sucked but I would describe my quality of life as good. While on full FolFox I was knocked down for a few days every 2 weeks but after that I was just a bit more tired than normal. I did get neuropathy near the end in my hands and feet and did develope Lh sign about a month after finishing oxi. It went away in a few months and I just have some barely noticeable numbing in my fingers left. I count myself lucky but I’ve met a few people personally in the chemo room who’ve done even better with almost no symptoms. Stay positive as much as you can !
40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

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Re: Quality of life on Folfox and others

Postby Spazzyjanet » Sun Oct 21, 2018 6:31 pm

I have just finished my first round of Oxy+ 5FU. Got unhooked Friday at lunch. No diarrhea, but actually was constipated all day yesterday. Is that normal? I expected goo and got the opposite? Or is the goo still on it's way?
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

Posts: 339
Joined: Sat Nov 04, 2017 11:08 am

Re: Quality of life on Folfox and others

Postby heiders33 » Sun Oct 21, 2018 6:47 pm

People have different reactions on the gastric side of things. I had some diarrhea from Xelox, but others can have the opposite reaction, although I think diarrhea is more common. Since I had an ileostomy I didn’t notice it as much. After a few days you will know how your body reacts and what is normal for you each time.
36 year-old female
May 2017: Dx rectal cancer T3N2M0
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU

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Joined: Sun Apr 16, 2006 4:09 pm

Re: Quality of life on Folfox and others

Postby Lee » Sun Oct 21, 2018 6:56 pm

Hi (((Lydia)))

I did 12 rounds of FOLFOX, at full dose. I got FOLFOX when it was still an experimental drug approved for stage IV folks only (I was IIIC at the time). I was part of trial that my Onc got me on board with.

For the most part I recovered. My feet suffer the worst. When they are cold, it's like walking on large rocks. As long as I keep my feet warm (sock and shoes), no problem. Many night I wear light slippers to bed to keep my feet toasty.

There is a slight numbness in my fingers today, butt nothing that stops me from doing simple things like buttoning a shirt. I am aware of a few people who are elderly and have worse issues than me. Growing old can be a B*t*h. Personally my night sweats and daily hot flashes are far worse then any neuropathy issues I may have.

My hair got very frizzy while on chemo. Never really lost it, butt once I was finished with chemo, you could see an improvement in quality of my hair. 6 months out, I got a short haircut to correct the frizzle issue.

Best advice, get food in your stomach prior to each infusion. For me, BurgerKIng breakfast egg sandwich. Keep food in stomach, 6 small snacking vs 3 meals a day. Junk food is always better than nothing. AND the best advice, drink a TON of water day or two prior to each infusion. You will lose it. You don't want to end in ER with dehydration issues.

Know you can do this. thinking of you,

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 - 10 years and counting!

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Re: Quality of life on Folfox and others

Postby Jannine » Sun Oct 21, 2018 7:56 pm

I have uncomfortably hard and frequent stools on Folfox, starting the day after Oxali/Leucovorin infusion and lasting another 3-4 days (so far). I manage it with generic over the counter Colace (so far I limit to 1-2 of them per day and that seems to work) and a little extra fiber. I also got a Bidet to help with cleanup and so I wouldn't have to wipe down there so frequently, but I could probably avoid that by being more aggressive with the Colace/taking more metamucil or something similar. The nutritionist in oncology said sometimes Compazine helps with this too, but I haven't needed to take anything for nausea so far, fortunately.

Definitely stay well-hydrated, my oncologist recommends 2-3 quarts of water per day right before, during, and after infusion. This helps with the stools and also helps flush the nasty stuff out of your system.
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

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Re: Quality of life on Folfox and others

Postby horizon » Mon Oct 22, 2018 8:33 am

You have to remember that everyone reacts differently. I did Xelox and I did start to have some neuropathy. I told my oncologist immediately and he reduced my Oxy infusions (it went away for me eventually). I was able to work (and work out at the gym) during the six months. I took of Wed for infusions and worked from home on Thurs and Fri. Monday I went back to my normal routine until the next infusion.
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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Re: Quality of life on Folfox and others

Postby AppleTree » Mon Oct 22, 2018 8:52 pm

When I started Folfox it was right after my July lung Vats surgery. My white blood cell counts plummeted. I got the Neulasta shot which really made me feel like I had been beaten with a baseball bat. I had to wear a scarf over my face when walking to dogs or I felt my throat was closing up! No touching or drinking/eating anything could. I noticed my toenails became noticeably thinner. By December I was bald! That was unexpected. I started out strong. I was working part time and taking 6 credits at University. By the December university break I decided not to do the spring semester. My boss took a sabbatical so no work either. This was actually best for me because I was pretty sick. I know other people who work all through chemo. Everyone is different!

I knit all through chemo, which I think my fingers from extreme neuropathy. I like knitting socks, but was unable to hold the small needles. I switched to larger needles and persevered with scarfs (slowly, but I did it). While walking the dogs I would often stamp my feet. It has been almost 6 months since stopping chemo. I still drop things. And my feet often feel like I am walking on wet sand.

I also have extreme diarrhea issues, but it is a combo of issues prior to chemo and aggravated even more by chemo.
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

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

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Re: Quality of life on Folfox and others

Postby mariane » Mon Oct 22, 2018 9:14 pm

I can recommend walking and exercising. I walked even with chemo attached and it helped me to stay in good shape through chemo. Gardening and prayer also helped. I was able to fall asleep and to relax.
I tried to eat small portions but often. It was important for me to at least maintain weight. The numerous surgeries caused weight loss. There are studies that maintaining weight can prolong survival.

Chemo weakened my previously sensitive sense of smell. I sometimes miss it. It seems to slowly come back but 2 years post treatment I doubt if I will regain it completely. My sense of touch is delicately altered but not too much. Most of the time I don't feel any difference.
mom of now 10 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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Re: Quality of life on Folfox and others

Postby RichieTheK » Tue Oct 23, 2018 4:30 am

I've gone through 7 cycles of FOLFOX with 4 more planned. The First Bite Syndrome is the worst side-effect so far. I have some cold sensitivity but it's not severe. I can drink cold liquids and take things out of the refrigerator bare-handed, but not from the freezer. My hands and feet feel a bit off, but it is easily ignored.

I have been taking B-6 (100 mg) and B-12 (100 mcg) as well as L-Glutamine (8g 2x/day) which may be helping. I expect my side-effects to get worse over the next few weeks, but so far I am satisfied, as is my oncologist.
DX 5/13/2016 (Friday the 13th) mRCa Stage 4b
Met Liver, Lungs, Spine
mut KRAS G12V
mut PIK3CA
5/15/2016 Tumor partially obstructive; colostomy performed
5/2016 FOLFIRI with higher dose of Irinotecan
8/2017 Signs of tumor growth, added Avastin to FOLFIRI
4/16/2018 Primary tumor invading surrounding tissue. Chemo stopped
5/2018 Started radiation.
6/2018 Radiation finished
7/2018 Start FOLFOX
1/2019 FOLFOX canceled due to neuropathy after 14 cycles.
Now on maintenance, 5FU and Avastin

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