Onc wants to remove oxaliplatin

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Onc wants to remove oxaliplatin

Postby angie1975 » Mon Apr 04, 2016 7:29 pm

Hello again everyone. My onc asked me last week about my side effects of folfox6 round 8 and I told her that I am beginning to get neuropathy in my toes which just began. I have always had it in my hands but now happening in my feet. She lowered my dose of oxaliplatin last week and some other symptoms do not feel as bad such as the tightness and dull pain in my sides.but now she is saying if neuropathy gets worse she wants to pull it and just go with 5fu.

She said most patients typically can't handle the oxaliplatin after 8 rounds so they end of removing it. My concern is that I have already done 8 rounds of Folfox with it, and of she removes it how does it change my odds of survival or recurrence? I only have 4 more tx to go, but i certainly dont want neuropathy for the rest of my my life. I would love to hear from other long time survivors who have had a similar situation.
Stage 3 RC, DX 9/15/15
Prospect Trial, Folfox only
Surgery 2/11/16, successful w/clean margins
1/13 nodes positive
4/11/16clean scan, NED

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Re: Onc wants to remove oxaliplatin

Postby jhocno197 » Mon Apr 04, 2016 8:29 pm

There have been studies that show that fewer treatments are just as effective as the full 12 of Folfox.

When they pulled oxi from my husband, they gave him irinotecan instead, making it FOLFIRI.
Of course, he didn't have a chemo endpoint abd was expected to be a chemo-for-lifer until they quit working, so that may be why they didn't suggest that for you.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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Re: Onc wants to remove oxaliplatin

Postby Lydia666 » Mon Apr 04, 2016 8:32 pm

I haven't done your treatment and i am
Not a long time survivor ( yet) but i think 8 rounds of folfox is a lot,, you should be fine. I know one person who managed 5 rounds with oxy and she has been clear for 6 years now.
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: Onc wants to remove oxaliplatin

Postby CRguy » Mon Apr 04, 2016 8:40 pm

I did the "dirty dozen" with a dose reduction along the way … BUTT … as pseudoadjuvant chemo after a lung met removal, not as original adjuvant post-op.
I have seen studies and references to 6, 8, 10 FOLFOX cycles being used in place of 12 … depending upon the exact diagnosis.

IF the oxaliplatin is kicking your BUTT, listen to the doc about the reduction or cessation of it.
I have lingering non-painful neuropathy 6 years out and it is annoying but NOT debilitating or limiting for me.

Remember that 5FU is still the mainstay of traditional chemo, so you are not "going home empty" if the oxi is dropped.

Best wishes
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Re: Onc wants to remove oxaliplatin

Postby Lund5505 » Mon Apr 04, 2016 10:02 pm

Stop the oxi immediately!!!!

The effectiveness is very minimal after six rounds and the probability of permanent neuropathy is very high. I had seven rounds and have spent the past two years with neuropathy in my hands and feet. I would not wish this on anyone. My neuropathy did not appear until after oxi had been stopped so beware it may likely become worse before it becomes better. At first it was so bad in my hands that I had to go on disability and remain so to this day. Not from cancer but cancer treatment. That lasted for 6 months and it has now improved to be just my feet and about up to my knees. I can tell you there is not a minute out of the day I am not aware of it and it has caused other QOL issues along the way. My husband gets up during the night to keep me from holding my painful feet as I'm sleeping because they hurt and this caused an si joint problem last summer that took several months to fix.

I will die regretting ever agreeing to more than six rounds but I was not as educated about things then and trusted doctors more than I do now. If your oncologist is suggesting eliminating it take their advice. I wish mine had.
10/2013 dx female @54 stage IV innumerable liver mets
CEA 2600 kras wild MSS
11/2013 folfox avastin 8 rounds
6/2014 neuropathy development CEA 9.8 but won't go lower
8/2014 colon resection
11/2014 folfiri and cetuximab 9 rounds CEA 1700
4/2015 cetuximab only 4 rounds CEA down to 20 but won't go lower
7/2015 chemo break getting too toxic
10/2015 xeloda 3 rounds CEA 800 then 300 then back up to 900
1/2016 irinotecan CEA 1800 at start 2/2016 too toxic
4/2016 Cea 3200
Hospice recommended but I'm not ready yet

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Re: Onc wants to remove oxaliplatin

Postby wwroam » Mon Apr 04, 2016 11:45 pm

8 years ago I completed 12 rounds of Oxi.
Neuropathy commenced after 10 but I did the next 2 anyway.
Neuropathy proceeded to worsen for about 2 months afterwards , after which it slowly tapered off a bit, but it's still there. But then so am I.
April 1 2014 my SO commenced Folfox 6 + Avastin. As of yesterday she has completed 20 rounds of Oxi. She developed the first neuropathy after 8 cycles of Oxi. Since the 14th round of Oxi there has been no change in the severity of the neuropathy. It has plateaued. At the 15th she did 3 rounds of Oxi on a de-sensitizing program which has been successful. Oxi seems to be holding things at bay.At diagnosis she had multiple mets to the liver, ovaries and breastbone.
The punchline is that she may be exploring the boundaries of how many rounds of Oxi the body can withstand.
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

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Re: Onc wants to remove oxaliplatin

Postby elise » Tue Apr 05, 2016 8:08 am

I can tell you that I only made it to 5 before the nerve damage was too great :( The nerves in my lower legs started to go and I started to trip a lot. My hands and feet were really bad and after more than 16 months off oxi, they still bother me a lot. Personally, I would not push for oxi for the last of your rounds. The price is too great after IMO :(

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

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Re: Onc wants to remove oxaliplatin

Postby barbara jayne » Thu Apr 07, 2016 10:55 am

I believe different bodies can tolerate different doses / amounts of Oxi, regardless of personality strength/ determination.
I was due to have 8 rounds of Oxi but after only one I was unable to stand couldn't use my hands either to dress myself had to be wheeled out of chemo unit in a wheelchair, problem was I also have the enzyme deficiency DPD so 5fu was definitely off the menu after just one round, I would have done anything to continue the chemo but he said it's too dangerous in my case, I was really scared because my Dad had only survived 2 yrs after his diagnoses very similar to mine :( I was stage 3 with 2 nodes receiving adjuvant treatment,so my onc decided to give me a short break around a month to regain some strength then I continued with another 3 rounds of Oxi as he wanted me to have at least some protection, it was tough & I have got lasting damage but 8 years later I'm still here sooo ? ...... so thankful to be here.
Barbara x
DX. Colon Cancer (Cecum) stage 3
Right hemicolectomy Jan '08
2/22 L.nodes positive
Oxi and Xeloda
Xeloda discontinued
due to DPD enzyme deficiency
Lynch Syndrome
11 years NED
Facebook user name,
Barbara Allen https://www.facebook.com/barbara.allen.927

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Re: Onc wants to remove oxaliplatin

Postby llupp » Thu Apr 07, 2016 6:40 pm

Hubby did 12 rounds of oxi because he would not tell the oncologist how bad his feet were getting. He might be NED right now but is in pain every day of his life the neuropathy has severely limit his life.
Caregiver of hubby
Rectal cancer 4/13
C-scan, Pet-scan 4/13
Kidney cancer 4/13
Port 4/13
Chemo and Radiation 6 weeks
Surgery 8/19

Removed left kidney and rectal tumor temp ilestomy
hospital dehydration and partial stoma block
Chemo to start around 10/15
Ned 03/25/14
Still Ned 03/10/16 Woo Hoo

Nik Colon

Re: Onc wants to remove oxaliplatin

Postby Nik Colon » Thu Apr 07, 2016 9:49 pm

I did only my first 3 with oxi cuz my disco nurse thought I may have had a stroke, all was ok but they didn't want to risk it. Had my 4th w/o oxi, then surgery. Then folfiri after, 1st full, then 2nd w/o cuz bad pain. 3-5 at 80% then last 3 only 5fu. We all react different, to some it can cost bad se's, to others their LIFE. Listen to your body. We are NOT all equal when it comes to chemo and reaction.

Best wishes

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