Much/any difference in side effects when oxaliplatin is removed

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SarahS
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Much/any difference in side effects when oxaliplatin is removed

Postby SarahS » Wed Mar 22, 2017 12:10 pm

My husbands oncologist told us that if his next scan looks good he will remove the oxaliplatin from the mix and have him continue on with just the 5FU and avastin.
He has so far done 6 full Folfox treatments , and would be looking at doing another 2 before potentially removing the ox
While he has managed to continue to work , do some exercise and live a reasonable normal life on this combination I think he has probably had about every side effect imaginable and then some that even his oncologist thinks are unusual, nothing debilitating, just a lot of little irritating things.
I was wondering for those who have trod a similar path, did you find chemo without the oxaliplatin more tolerable? less side effects?
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras G12C MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

LMighty
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Re: Much/any difference in side effects when oxaliplatin is removed

Postby LMighty » Wed Mar 22, 2017 1:20 pm

My mom was on Xelox every 3 weeks (6 infusions in total). Stopped at late December 2016. Almost three months passed and she feels the neuropathy are 80% gone. Our onc said it might cause permanent damage to the nerves if we continued treatment.
Supporter to my mom (64 yr); KRAS wild type; MSS

2012: DX Stage I, rectal cancer; resection and colostomy
5/16: DX Stage III, mets found; right groin lymph node and soft tissue
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid
7-12/16: Xelox + Avastin X 6
1/17: Clean PET scan, NED
2/17: Pleural effusion; recurrence
4/17: Iri + Erb X 3
5/17: Ascites; Chemo failed
6/17: Keytruda X 1
7/17: TECENTRIQ (atezolizumab) + COTELLIC (cobimetinib)
9/17: At peace

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dianetavegia
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Re: Much/any difference in side effects when oxaliplatin is removed

Postby dianetavegia » Wed Mar 22, 2017 2:19 pm

I did all 12 of FOLFOX and the last four or five had me on the sofa for the two weeks prior to my next tx. Check with your husband and ask if he feels a strong sensation in his feet if he's standing up and bends his neck as to look at his feet. If so, he needs to mention this to his onc. I didn't and have continued to have more nerve damage over the years. That sensation is called L'Hermitte's Syndrome. It's found in MS, spinal cord injuries and damage from chemo. Doctor would stop the oxi early, or at least mine said we should have.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

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

fumaros
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Re: Much/any difference in side effects when oxaliplatin is removed

Postby fumaros » Wed Mar 22, 2017 2:51 pm

Stopping the oxaliplatin felt great. I had 10 full FOLFOX treatments before they stopped the oxaliplatin. My side effects had began to scare me when the oxaliplatin was stopped.
The remaining two rounds with just 5-FU were pretty easy to get through. After stopping oxaliplatin, i no longer had neuropathy in my hands. I still have neuropathy in my feet even till this moment, but it has been get better.
If your onc is okay with stopping oxaliplatin, it is not a bad idea to stop before permanent determental effects set in.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

Achilles Torn
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Re: Much/any difference in side effects when oxaliplatin is removed

Postby Achilles Torn » Wed Mar 22, 2017 4:46 pm

My Oncologist said we will also stop Oxy at 8. I'm on 6 myself. I think this is common in stage 4 patients who aren't NED from surgery as the Oncologists are looking at long term chemo. Adjuvant chemo may be pushed for longer as there is hope for curative result.
Diagnosed as 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 + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

SarahS
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Re: Much/any difference in side effects when oxaliplatin is removed

Postby SarahS » Wed Mar 22, 2017 5:50 pm

Thank you everyone for your responses.

Diane that is interesting, I will run that test by my husband later .

I know it's not unusual to drop the oxaliplatin before 12 rounds , I was just wondering/ hoping if it made much of a difference to how people felt without it in the mix?
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras G12C MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

debb
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Re: Much/any difference in side effects when oxaliplatin is removed

Postby debb » Wed Mar 22, 2017 8:10 pm

Yes, your DH will get relief from symptoms when dropping the Oxi! I know I did. Sure, he'll have some side effects, but I found them to be so much more manageable. It really made it so much easier. I stopped the Oxi after 8 treatments, and finished 4 more without. At that point, I felt like I got my life back!
Good luck to you and your DH.
2008, Stage 3C, age 42, mom of 4
Folfox 9/08-2/09
Met to right ovary, both removed 7/10
HIPEC 8/10
VATS 7/12, right lung
10/14 Stivarga clinical trial
3/15-7/15 Folfiri & avastin
8/16 Folfiri & avastin
Break! 10 months of freedom
1/18 - 4/23 many Folfiri & Avastin
6/23 Clinical trial REGN7075. Progression
8/23 radiation to femurs and L4
9/23 rechallenged Folfox. Allergic reaction at 4th infusion
11/23 will start Bot/Bal

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LPL
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Re: Much/any difference in side effects when oxaliplatin is removed

Postby LPL » Thu Mar 23, 2017 5:10 am

Hi SarahS,
You wrote:
He has so far done 6 full Folfox treatments and would be looking at doing another 2 before potentially removing the ox

My DH had 7 full Folfox, #8&9 was with 50% Oxi reduction and #10-12 without Oxi. He said it felt good different already when they took away 50% but still felt some peripheral neuropathy that stayed until next treatment started. That was why they then totally removed Oxi. During all his chemo treatments he did not have so many types of side effects though, it was mainly fatigue & neuropathy/cold sensitivity - those things got better without Oxi for him.
All the best to you & your husband /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

SarahS
Posts: 49
Joined: Sat Mar 11, 2017 12:44 pm

Re: Much/any difference in side effects when oxaliplatin is removed

Postby SarahS » Thu Mar 23, 2017 10:37 am

Thank you Debb and LPL that is good to know :)

It's odd but the one side effect my husband hasn't experienced is the cold sensitivity, no problems throughout the treatment handling cold things.
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras G12C MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

Deb m
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Joined: Tue Jan 14, 2014 10:08 am

Re: Much/any difference in side effects when oxaliplatin is removed

Postby Deb m » Thu Mar 23, 2017 10:42 am

My husband's last 2 or 3 treatments ( can't remember which) were done without the oxi and it was much easier. Still not a total cake walk, but much easier.

mtipte
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Location: Lima, Peru

Re: Much/any difference in side effects when oxaliplatin is removed

Postby mtipte » Sat Apr 29, 2017 5:54 pm

Thanks, my mum is taking the Capox but it's only 5 rounds , each round containing 130 mg ( the onc said at 80% round 1). It will be given once every two weeks. I'd like to know the difference in protocols, why 12 rounds? Maybe the interval is short and quantity as well???

I appreciate your help.

Cheers.
Dear Mum 60 y/o
dx 09/16 RC III CEA 9
Chemo/rad 28 from 10/16 till 12/16
Xeloda
multiple lymph nodes
Adenocarcinoma low grade invasive
Now 2000 mg Xeloda for 2 weeks as maint. before surg.
24/01/17 CEA 4,9
APR surgery permanent colostomy :( 24/03/17
3/26 nodes involved -LVI - clean margins
Staged after surgery: T3N1Mx
Infection due to bladder problems. Slow recovery.
CEA 1.7 :)
Adj. Chemo Xelox 6 rounds 29/04/17
After round 3 CT Scans Clear 15/07

God is faithful. Only Jesus.

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Much/any difference in side effects when oxaliplatin is removed

Postby mhf1986 » Sat Apr 29, 2017 6:25 pm

Just saying Hi to Sarah again. I think Onc is going to remove DH's oxy on May 17. While the symptoms haven't been horrible, they are getting more noticeable, especially the painful hands and slightly numb feet. The cold sensitivity is bad, he wears gloves and drinks only room temperature things. Onc said he doesn't want it to get worse and become non-reversable. So DH made it thru 6 full rounds of oxy and will continue with the 5FU+Avastian.

However, CT scan is May 12 and we make seek alternative measures at that point. CEA is way down which makes us think tumors are still shrinking and there might be other ideas out there.

Hugs to all,

Melissa
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

SarahS
Posts: 49
Joined: Sat Mar 11, 2017 12:44 pm

Re: Much/any difference in side effects when oxaliplatin is removed

Postby SarahS » Sat Apr 29, 2017 9:33 pm

Hi Melissa :)

It's uncanny how simialr our husband's journeys have been. We just had another CEA test this week and it came back at 12, still dropping
He also just did treatment number 7 the first one without oxi and the difference has been fairly pronounced, no nausea at all, in fact his appetite is better than it has been in years and not anywhere near as much fatigue
I'm wishing you all the very best for that next scan, keep us posted as to how it goes

Hugs and well wishes to everyone

Sarah
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras G12C MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

Scilla
Posts: 24
Joined: Tue Apr 11, 2017 4:09 am

Re: Much/any difference in side effects when oxaliplatin is removed

Postby Scilla » Sun Apr 30, 2017 2:25 am

Sy mom is supposed to start CAPOX next week, so oxi IV on day one and xeloda orally twice a day for two weeks. The hope is to shrink her tumors, so she be a candidate for surgery. She is very weak and has lost a lot of weight, so I'm just wondering if she would get too many side effects from oxi and onc says OK to skip the oxi all together, would xeloda be enough to shrink the tumors? Has anybody been on xeloda and have their tumors shrink?
Supporter of mom 68 yr
Dx RC CRC 03/17
Rectal tumor 5cm, colon tumor 9cm
Two small liver mets,
04-05/2017 CAPOX Started twice, stopped due to side effects.
05/2017 One week of radiation to rectal tumor.
06-08/2017 Irinotecan+Bevacizumab
08/2017 Treatment stopped due to frail health
Mom is in Gods hands

sdino
Posts: 85
Joined: Tue Mar 28, 2017 5:32 pm

Re: Much/any difference in side effects when oxaliplatin is removed

Postby sdino » Mon May 01, 2017 7:33 am

My Wife did 8 out of 12 treatments of Folfox-Avastin-Oxi. The first 8 were very rough on her with Oxi. Once the Onc stopped Oxi, she could easily tolerate the Chemo without Oxi.
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: 25+ Bilateral ranging 4mm-5.0cm
MSS, KRAS-G12D; TP53
iTCR TIL Trial NCT03412877 4/19 to 7/19 Off trial, - Sept. 2019 TIL trial NCT01174121
CT Scans: 7/2020 lung met shrinkage 36%, 3 lung mets left, two Liver mets destroyed by TILs
Brain tumor removal 3/2020
CEA:16-11/16; 5 -9/18; 63 -8/19; 1 -1/20; 0.8-5/20


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