oxaliplatin how long does neuropathy last

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rickrobben
Posts: 31
Joined: Wed Jan 07, 2015 2:18 pm

oxaliplatin how long does neuropathy last

Postby rickrobben » Fri Jan 16, 2015 5:24 pm

I had my last treatment 3 months ago. Its seems neuropathy is getting worse. Worse when cold. Anyone else experience this?
June 13 2014. Stage 3 rectal
6 rounds Folfox chemo, oxilpilatin, with leucovorin and then Fluorazine in the bottle
11/14LAR complete response
Temp iliostomy
Folfox chemo, oxilpilatin, with leucovorin and then Fluorazine in the bottle
5/15 Reversal
9/1 blood and sigmoidoscopy clear

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: oxaliplatin how long does neuropathy last

Postby CRguy » Fri Jan 16, 2015 5:56 pm

Yes.
Last oxi dose was Nov 2010 and still have non painful neuropathy, cold sensitivity today.
It comes and goes but is not debilitating so I live with it.

JME, but it does improve overall.... BUTT it is still there.
hope yours gets better and disappears !

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

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MamaN
Posts: 666
Joined: Tue Dec 30, 2014 2:34 am

Re: oxaliplatin how long does neuropathy last

Postby MamaN » Fri Jan 16, 2015 5:59 pm

Hi Rickrobben, if you are new welcome, to the support group. Every one has diferent experience with this . Butt for me i had it bad in hands and feet, eventually hand returned to normal no problems just seem a little more sensitive to the cold. My feet now that's a different story ...I kept asking onc every check up when my feet would feel better he had told me it could take a couple years... Well finally by my 3 yr appt. I asked again and he said it looks like its permant! Feet always feel like they are buzzing, tight socks and shoes bother it. Time will tell if you go back to normal . Like I said I waited three years it didn't happen . Best of luck to you , hoping nothing permanent for you.

I noticed you do not have a signature , that some time helps
Dx@45 stage t3 n1b m unknown IIIB
Resected in 8/2010 rectosigmoid
5.5 tumor with 3 /26 lymph nodes
Lymph vascular invasion
Folfox sept 2010 to feb 2011
10 tx only stopped due to low wbc

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: oxaliplatin how long does neuropathy last

Postby JDinNC » Fri Jan 16, 2015 6:00 pm

Yes..my neuropathy started 5 days after my last treatment...it will be one year this February when it all started and it hasn't gotten better. Yes, it's worst during this cold weather.
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

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chemo sabe
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Joined: Fri Mar 09, 2012 9:01 pm

Re: oxaliplatin how long does neuropathy last

Postby chemo sabe » Fri Jan 16, 2015 6:08 pm

I am in the same boat as MommaN except my Onc was willing to call it permanent at 15 - 18 months. This is not a complaint. Just responding to your question.
64 year old male
Diagnosed Stage 3 Rectal Cancer - T3N1M0 - Oct 2011
28 radiation treatments with xeloda
Colon resection with ileostomy Feb 2012
8 Rounds of Xelox completed Sept 2012
Ileostomy reversal surgery Oct 2012
Incisional Hernia Repair Nov 2013

shade
Posts: 162
Joined: Thu Feb 20, 2014 7:08 pm

Re: oxaliplatin how long does neuropathy last

Postby shade » Fri Jan 16, 2015 7:16 pm

Its only been 2 mos since I stopped Oxy, but I still have tingling fingers. Annoying, not painful.
Stage IV rectal
10/12 Cancerous polyp removed age 51
6/14 uLAR and resected liver met
12/14 finished FOLFOX / Avastin
1/15 ilio reversed = LARS!!!
1/20 onc said “cured!” - no further monitoring unnecessary
5/21 chest pain revealed new lung mets… radiation
10/21 maintenance avastin/xeloda
9/22 stivarga 2 weeks, d/c'd due to foot pain
10/22 vectabix + irinotecan

Ontario Guy
Posts: 278
Joined: Fri Aug 03, 2012 7:55 am

Re: oxaliplatin how long does neuropathy last

Postby Ontario Guy » Fri Jan 16, 2015 7:33 pm

Two years out and I still have minor tingles in my fingertips and the soles of my feet. Worse when it's cold, like right now. Entirely manageable, but I'm really glad I don't play violin anymore. I can type and play keyboard (for myself, not in public), but anything more finicky is out of the question. I drop things, too, so I have to be extra careful.

Short answer: it lasts. But it's better than the alternative.

Good luck!

OG

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cashmere
Posts: 305
Joined: Wed Jul 15, 2009 2:52 pm

Re: oxaliplatin how long does neuropathy last

Postby cashmere » Sat Jan 17, 2015 8:56 am

Not to scare anyone, but I am 7 years out from my last chemo treatment and have permanent neuropathy. I take Lyrica daily and that keeps it at bay. The heat bothers me more than the cold, my hands and feet swell in the heat. I do wish I had known more about the damage chemo can cause, I found this group after my treatments, I may have elected to stop the Oxi sooner.
Stage III
Diagnosed 4/07 at 51
36 rad/24/7 chemo bag
surg 9/07
6 mon chemo w/48 hr bag
ileo reversal 5/08
NED since 9/07!!
Just resolved my 13th blockage
Been able to control blockage issues with fiber supplements!!

janderson
Posts: 679
Joined: Tue Mar 27, 2012 11:46 am

Re: oxaliplatin how long does neuropathy last

Postby janderson » Mon Jan 19, 2015 8:33 am

My last oxaliplatin treatment was nearly 9 years ago and I still have nueropathey on the bottom of my feet but hands are good.
DX 10-05 stage IV
liver resection 12-05 Folfox1-05 to 7-06
Liver resection 8-07 Folfiri 9-07 to 3-08
Liver resection 12-11
Recurrence 2/7/2014, liver, chestwall mets, 16 rounds chemo
7/3/14, y90 radioembolization, steady shrinkage
12/8/14, cryoablation to liver and chest wall
6/1 to 6/26 SBRT radio surgery
7/2 more cryo ablation to right lung
7/16 lung infection drain tube installed
9/4 chest wall resection to remove 2 ribs

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: oxaliplatin how long does neuropathy last

Postby Deb m » Mon Jan 19, 2015 11:13 am

Our oncologist at MDA told us that it can take up to 3 years from your last treatment to resolve. He said after three years, what you have is what you will probable have the rest of your life. My husband is 4 years out from his last treatment and has mild neuropathy on the bottom of his feet. He also had it on his fingers, but over the past couple of years it resolved there, but not on his feet.

Hope yours completely resolves,

deb m

nkoske
Posts: 442
Joined: Fri Feb 22, 2013 2:00 pm
Location: California

Re: oxaliplatin how long does neuropathy last

Postby nkoske » Mon Jan 19, 2015 12:05 pm

The numbness in my hands is pretty much gone. Still have numbness in my feet. More annoying than painful. I think it has affected my balance to some extent. The symptoms peaked a month or two after my last Oxaliplatin infusion and it seems that's common from what I read.

At this point it's likely the numbness in my feet is here to stay (18 months since my last Oxali treatment). But, like Ontario Guy said, "Better than the alternative."
Nick, DX @ age 34, IIIB Rectal Cancer 10/2012
ChemoRad IMRT 11/2012
Laparoscopic LAR 1/2013 (No Ileo)
Post Surgery Path IIIB (2/15 LN)
Chemo 2/2013 (XelOx)
Currently NED, Graduated from Med Onc 10/2017

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dianetavegia
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Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: oxaliplatin how long does neuropathy last

Postby dianetavegia » Mon Jan 19, 2015 12:22 pm

Forever it seems for me. 6 yrs now. My neuropathy got worse a few months after chemo ended. Finger prints returned in about 2 years. I still have numb fingers but my feet are the worst. Slight numbness halfway to my knees and constant tingling, needles in my feet. I deal with it.

I had L'Hermitte's Sign (Syndrome) which is where the chemo caused permanent damage to my central nervous system. If I bend my neck forward, I get a 'sonic boom' sensation in my feet.

It became my new normal. I refuse to take killer drugs to lessen the sensation!
Last edited by dianetavegia on Mon Jan 19, 2015 12:51 pm, edited 1 time in total.
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

jean60
Posts: 427
Joined: Sun Sep 02, 2012 3:47 pm

Re: oxaliplatin how long does neuropathy last

Postby jean60 » Mon Jan 19, 2015 12:32 pm

I had my last treatment the first week of 2013 and my feet are still numb. Not painful, just numb and it does affect my balance a bit. Other than that, very manageable.

Jean
Dx Rectal Cncr 5/12
Stage III
5 weeks Chemo (5FU) & Radiation completed
LAR with temporary ileostomy 9/12, complete response
Began FOLFOX 10/12. oxil reduced after tx 1, eliminated after tx 2. Now 5FU.
Finished 1/13
Ileostomy reversal 5/13

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ziggymonster
Posts: 538
Joined: Tue Feb 05, 2013 3:23 pm
Location: California

Re: oxaliplatin how long does neuropathy last

Postby ziggymonster » Mon Jan 19, 2015 1:13 pm

I am almost 2 years out and still have moderate to severe neuropathy in my feet, my hands still have some mild neuropathy.
DX advanced prostate cancer 2002
2014 still fighting mPca , failed surgery, radiation, hormone
DX Stage IIIa Rectal Cancer 12/12 1 of 12 nodes +
LAR permanent colostomy 1/13
Folfox 2/13 - 7/13 clear CT CEA 1.2
7/14 liver met chemo the resect in Oct
6/15 2 pos lung mets watching for now

nicola smith
Posts: 1040
Joined: Thu Oct 07, 2010 9:06 am

Re: oxaliplatin how long does neuropathy last

Postby nicola smith » Mon Jan 19, 2015 1:24 pm

Hi Rickrobben,

I have major neuropathy from my feet to mid-calf and very minor tingles in my fingers. The shin and ankle area are numb. When I walk, my feet feel ice cold and crunchy, as though they were walking through ice cold wet sand. That sensation gets worse when doing anything that puts pressure on the feet. Strangely, my balance does not seem to be affected.

After 4 years, I'm not expecting any improvement.

I take Nortyptaline daily, prescribed by the local cancer pain clinic, It helped by getting rid of the most painful tingling in my feet.

My neuropathy started about my 8th treatment but oxi was not cut-back until the 12th one. I don't think it got worse after treatments ended, but it certainly didn't get better.

The bottom line, however, is that I can live with this because I have to!

Good luck
UC history
11/09: Dx, CEA 2.9
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
2010/11/12/13/14: 6 PET and/or CT's - NED
quarterly 03/2010- 03/2015: CEA range 0.8-1.3
03/2015: discharged to GP :D


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