oxaliplatin how long does neuropathy last

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helen098
Posts: 2009
Joined: Sun Jul 01, 2007 2:07 pm
Location: Forest Hills New York

Re: oxaliplatin how long does neuropathy last

Postby helen098 » Mon Jan 19, 2015 2:45 pm

My last chemo was 8 years ago and without meds the pain,shocks, numbness is unbearable
I was told it can take up to 2 years for the nerves to regenerate
Mine did get better the first year or so then stopped
No matter what it is manageable with the right meds
Don't take it's a "small price to pay" for an answer
stage 3A surgery 6/6/6 finished chemo jan 07
11 5FU/12 Levcouorin/10oxaliplatim
port removed jun 07
anal fistula surgery oct 05 may 07 feb 08 sep 08 jun 09

heyscott
Posts: 34
Joined: Thu Oct 28, 2010 9:51 pm

Re: oxaliplatin how long does neuropathy last

Postby heyscott » Mon Jan 19, 2015 3:36 pm

Four years no evidence of disease. I still have a subtle neuropathy in my feet, non in my hands. I have noticed taking an aspirin nightly (for cancer prevention and cardiac health) helps it at night and I've noticed colder temps are better (winter) than warmer temps (wearing socks, summer without AC).

You live with a new normal after cancer!

xoxoxo
"Scott"
46yr at dx 9/29/2010 Stage 3B (T3N1M0) Rectal CA, poorly differentiated
5 wk CVI 5-FU + radiation, 4 weeks break
1/2011 lap TME + temp ileo, 3/8 positive nodes
6 mo CAPEOX-7/2011 takedown
as of 11/2014 (year 4 since diagnosis) NED.

PainInTheAss
Posts: 678
Joined: Tue Jul 02, 2013 3:08 am

Re: oxaliplatin how long does neuropathy last

Postby PainInTheAss » Tue Jan 20, 2015 3:19 am

rickrobben wrote:I had my last treatment 3 months ago. Its seems neuropathy is getting worse. Worse when cold. Anyone else experience this?


Actually, it takes about three months for oxi to get out of your system so neuropathy can appear or increase for up to three months after the last infusion. This is good news for you if you were worried about it continuing to get worse. This is as bad as it will get. Mine got worse for a few months after the last round also. The cold isn't making it worse, just more noticeable. From here, it should start to improve.

Like others mentioned, you have to give it two years or so to know how much of it will be permanent. Mine is slightly better now 6 months out from the last infusion. I'm expecting some will be permanent, but it's not bad and doesn't affect my quality if life.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

kinghtwingfire
Posts: 2
Joined: Thu May 17, 2018 8:13 pm
Facebook Username: knightwignfire

Re: oxaliplatin how long does neuropathy last

Postby kinghtwingfire » Thu May 17, 2018 8:54 pm

I Am new to this Forum and Probably the Post chemo Oxali PN. I have sever Pain in my Feet some numbness no tingling MY hands simply tingle . I have no issues with hands .other than holding 2 Gallons of milk in a Super market line up. COLD
All along Ive been on high doses of Gabapentin and had no issues until it was TOO late. THe Gaba Hid the oncoming Problems .,
MY question is How much longer will this Pain go on IF it gets worse I stopped in Early October was Called Cancer FREE in mid November 2017. After only 9 chemo treatments . My Neuropathy Spasmed me OVER the BED Rail while sleeping during my last Session. It was then Stopped . Since then its Progressed to high pain level Believe me I can take one hell of a lot of Pain. IE I had the Trigeminal NERVE ROOT REMOVED from my Face. That's the real 10 of 10. Ive broken 15 vertebra, thats a 3 of 10 This is a 7.
I take Gabapentin for my Face headaches And Spinal damage thus My Brain was very Preoccupied with pain. NOw its Over the hill and out of the CAN and Yes its painful. Ive spent my life keeping ahead of Evil Knievel in Broken bones and recovering from Death and Near Death. at now 71 I am too old for this **** you know. Just want to know how long it will last and IF any of you have found any medications that will relieve the pain . I HAVE found that the REVITIVE Foot Massager has POSITIVE effects and the $300 CDN I paid is well worth it. 30 mins at 60 -90-% helps improve circulation ANd that's ONE part of the story.
I am on day 2 of a trial of A topical Cream Containing 20 % lidocaine 8% Gabapentin 10 % Diclofenic
MY Pharmacist made the cream Wrong . I reworked the Process with one I developed in the 1970's emulsifying Waxes in OIL. The Cream went from a total DUD to a Pleasant success. ( I was a Chemical Developer in my Early 20's. This was MY expertise) This IS not your VOLTAREN you can buy that's not even close But Diclofenic Gel is VOLTAREN. at 1.5% . This Cream is PRESCRIPTION ONLY and Probably a triplicate. As it contains Lidocaine a VERY POWERFULL topical cream VERY COSTLY and is not covered by our Pharmacare. I shelled out $86 for 150 Grams (4.5 ounces for the non Scientific .) Your Doctor can Suggest a Formula that May contain any number of Analgesics in the mix some much stronger than mine. I hope this Gives you some REAL HOPE of relief its not 100% but it makes life MUCH BETTER.
THe Cream Spreads Well and I estimate this tub will last 6 months Made to MY COMPOUNDING SPECIFICATIONS.

radnyc
Posts: 446
Joined: Tue Apr 06, 2010 6:32 pm

Re: oxaliplatin how long does neuropathy last

Postby radnyc » Fri May 18, 2018 1:00 pm

Last had Oxi 8 years ago and I still have it on the tips of my fingers. Like CRGuy said, it’s not bad, but it’s there.
DX Jan 2010, at age 47
Feb - colon resection - 2/17 nodes positive
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April 2011
HAI Pump removed Dec 2015

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: oxaliplatin how long does neuropathy last

Postby boxhill » Fri May 18, 2018 7:19 pm

I'm just into my second cycle of FOLFOX, and I'm trying to stave off the neuropathy as much as I can by taking, at the recommendation of the NP who supervises chemo for my oncologist, a 100mg B complex capsule and 10 MG of glutamine daily. I've also upped by daily dose of fish oil from 3 1200mg caps per day to 4. All of these things are supposed to help protect the myelin sheath.

R-ALA is supposed to be very helpful in diabetic neuropathy, and generally for T2 diabetics, which I also am.

I'm wondering if any of these things would help after the fact...
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

kinghtwingfire
Posts: 2
Joined: Thu May 17, 2018 8:13 pm
Facebook Username: knightwignfire

Re: oxaliplatin how long does neuropathy last

Postby kinghtwingfire » Fri May 18, 2018 8:56 pm

Box Hill WHat your taking is GOOD don't discontinue they all address the Nervous System ( that's NOt the Nerves themselves). Only Good can result. NERVE DAMAGE pain is Unlike any other Pain . Ive been fighting Nerve damage from My Tri Geminal Nerve root Severed in 1968 most of it removed in the mid 90's. My lumbar and Cervical spine. The Volume of the Chemicals the nerves produce to signal their damage in many times greater than Muscle or skin damage. Pain lessening drubs like Oxycodone Morphine Codeine simply do not put much of a dent in even the slightest Nerve damage. even at max Daily doses . You learn a lot when your faced with injuries such as I have. ANti Epileptic Drugs Are used to varying degrees of success WITH not Without high doses of OPIATES. These combinations DO work. However it takes Control on your part A/ to prevent runaway Addiction to the Opiate . B/ FINE tune the Combined doses . Doctors are still very lost when it comes to the use of AE drugs They think they work as a STAND ALONE method Alone they DO Nothing SUBSTANTIAL for Neural pain add Codeine to the mix and a small addition goes a long distance . Both must be tuned in As TOO much OPIATE Nullifies any Advantage of the AE drug and it fails to help completely Too much AE and your just wasting it . Come to the Edge of the Minimum dose of Both you have RELEIF OVER or UNDER and you have no relief. or simply waste the drug. HOWEVER Oxoliplaten works by Chelation therapy technique and NOW I am Putting my expertise over the Cliff HYPOTHISIS ONLY Why Few options are presented to US is that the therapy now Chelated the very active ingredient we need to reduce the pain such a Chemical HOLD will slowly release the Chemical into the blood to be filtered out and NO positive effects will be found. REGARDLESS of dose. Even at Death defying levels no positive results would be had.
IE I was on 240 mg /day of Codeine and 3200 mg of Gabapentin. Almost Max. My Doc told me to experiment I went over max on Gaba no change I came down to 1200 MG Gaba and some reduction I reduced my Codeine and things GOT better. I now only take 60 mgs at bedtime Codeine and because My Back neck and Trigeminal issues Cried for more control I had to increase the Gaba to 2400 higher and things Were worse lower they were better for the PN but not the TGN Lower than 1800 Mg Gaba things were insane on 60 mg codeine. MORE is Obviously NOT Better as 90 Mg of codeine again Up[set the Balance.
HOWEVER the Pain is still off the charts and I am on a Razors edge treating other issues I personally have . Others May find this to be of Greater success than I understand I have so many avenues for Neural Pain Since 1993. My Personal Goal is to be Opiate free maybe I will never reach it but I keep trying. OPIATE use is a TRAP and today Doctors Cringe at this because of the Addiction rates of Prescribed Opiates however in reality Drugs knowingly have created this problem and knowingly for a long time WE need sound answers until then We are stuck with ANSWERES That we know Work .
My Thoughts go out to every person suffering this way I had NO pain from My Bowel Cancer , the CURE, LITERALLY is worse than the Disease. At least it will not kill us. Better Quality of Life ?

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: oxaliplatin how long does neuropathy last

Postby NHMike » Sat May 19, 2018 12:30 pm

I have slight neuropathy in the fingers; but it's more pronounced in the toes. I hope that it goes away with time but I have heard of people where it flares up after treatment ends.
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

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O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: oxaliplatin how long does neuropathy last

Postby O Stoma Mia » Sun May 20, 2018 10:28 am

NHMike wrote:....but I have heard of people where it flares up after treatment ends.

I didn't have much trouble with peripheral neuropathy for the first 3 or 4 years post-chemo -- just a little tingling feeling every now and then.

However, starting in year 5 things got significantly worse to the point that now my biggest concern, healthwise, is peripheral neuropathy. There are some activities of daily living that I simply cannot do any more. My hands and feet will not cooperate.

hawkowl
Posts: 132
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: oxaliplatin how long does neuropathy last

Postby hawkowl » Mon May 21, 2018 1:55 am

More than 3 years out from last oxaliplatin and still have disabling neuropathy with dysautonomia and a debilitating tremor. Meds help some with pain and other symptoms but make me fuzzy and drowsy. Better than the alternative, but still difficult
Dx 12/2014 T3N2MX (distant LPLN) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda, SBRT
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7, scans stable...
6/2020 5 years of normal CEA and stable scans
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia


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