Neuropathy From Oxaliplatin

I'm a 71 year old male and in the "crowd" with Neuropathy from Oxaliplatin.  I had stage 2 cancer and 12 out of 20 lymph nodes test positive and then had 12 FOLFOX treatments.  The neuropathy, mainly in my feet, didn't start until near the end of the treatments.  Every time I would come in for a treatment (every other week) my Oncologist would ask me about my fingers and feet and it wasn't until the chemo was almost done that it started.  He told me it would "go away in 6 months to a year".  My last chemo "treatment" was in Feb of 07 and it's now over two years and I still have the Neuropathy, a little in my fingers but mostly in my feet.  I'm on Neuronton (300 mg X 3 times a day) but I often wonder if it really helps. My Oncologist increased the dosage at one time but that caused other side affects so it was back to the 300X3.  Lyrica didn't do anything more than Neurontin except lighten my wallet since it is not a generic and cost quite a bit more co-pay.  I read on one site that approx 30% of patients either suffer "long term" affects or permanent affects.  Since I'm past the "6 months to one year" that my Oncologist stated I have to assume I'm in the 30%.

My colon resection was done at the Moffitt Cancer Center in Tampa, FL.  On a positive side, I've had P.E.T. scans every 6 months and annual Colonoscopy's and to this point everything has been negative. 

Hi, Fireberd

I am also almost 71 years old.  I am sorry that your neuropathy is no better.  I think I am in that 30% you mentioned.  I think it is excellent that you have the P.E.T. scans every 6 months and colonoscopy annually.  I had a colonscopy shortly after my chemo was completed.  They said I don't have to have a repeat one for 3 years.

It sounds as though they are keeping good check on you.  I go for the CEA tests at the oncologist and so far they have been good.

I refused to take Neurotin on a continuing basis after I had some swelling of the ankles and legs from it.  I only take B vitamins and magnesium.  I also take aquatic classes at the YMCA in their warm water pool which has helped tremendously for balance. 

I guess it is a small price we have to pay for being alive and cancer free.  Good luck and I pray that you remain cancer free.

Fireberd or anyone out there...if you have any good suggestions to relieve the neuropathy in the feet, please tell us.  I keep searching for solutions.  Thanks.   

 

 

Hi everyone with neuropathy, I also have had neuropathy since my chemo treatments stopped in April'08. I am always researching to see if there is anything new and on Sunday I came across a Dr. that surgically corrects neuropathy. If you research Dr. A. Lee Dellon, you may find him interesting. I have set up a consult in June to see if I am a candidate for the surgery. Best of luck to all, Pearl

Thanks, Pearl for the info.  Please let us know how it works out.

Best of luck to you.

Dianejean 

 

Wow! How great to discover this message stream! I joined Cancer Compass a couple months ago, but just now feel the worsening effects of neuropathy even thougn I had my last Oxaliplatin mid April 09, and last Taxitere 2 weeks after that. I am 57 woman diagnosed with stage 4 stomach cancer with mets now to lungs, I had distant lymph node involvement at time of discovery of cancer (9/08.) I completed 10 sessions with Oxaliplatin and 11 with taxotere and 12 with 5 f/u. the neuropathy didn't get noticeably bad until several weeks after it stopped. Before that I had cold sensitivity, but not the constant tingling and some pain that I have now in fingers, toes, now hands, up arms, and feet and even ankles and knees get out of whack sometimes. I have tried some of the things people recommended here such as vitamin B6 B12, Magnesium. I also was told by a physician friend to try Lipoic acid 600-1000mg per day. I also got this tincture at health food store to put 20 drops in water for "nerves". It is very difficult to tell what is working but I will keep taking these things and eat well also. I also was recommended to take PROGREEN (costs half at Vitacost website for same thing.) That is for general supergreen nutrition. The only Rx I am using is generic Oxicodone 5 mg tab- I take 3 at a time- (15 mg very low dose) and about 20 minutes later the prickly pain in my hands is gone, my nerves settle down and I am in a much better mood. I take this late afternoon and it really picks me up a lot. I may take another dose before bed if my hands and feet hurt and I am restless falling asleep. It really helps a lot. I am a little disappointed to reflect what some others are saying, that as good as my oncologist is, (and I have back up consults at Memorial Sloan Kettering in NYC) not one doctor, PA or nurse has mentioned nutrition, supplements etc. My doctor did say "It can't hurt." I am about to start on my second set of treatments but this time with someting different which I plan to research more heavily for side effects than I did Oxaliplatin. I almost think the doctor didn't emphasize the bad side effects because he was hoping I wouldn't get them, and so was I. It seems that unless you've experienced this problem, it is hard to imagine how it intrudes on every aspect of your life! Jeanne

Hi Jeanne,

I can't offer any wonder drugs for neuropathy- wish I could!   I have it also- hands and feet (sometime up to the knees). I am taking Neurotonin ( not sure of spelling)- only take 1 ea at night, so I think I need to start taing 2 x.  I still am working., so I am not sure how it would work taking it in the morning.  Today I just completed my 17th treatment with Oxilaplatin-  I did have a reaction at my 14th, but my 2nd opinion Dr,at USC said to infuse over 4 hours instead of 2.  So that is what we do now, and with all the pre-meds I am doing fine.  But, in reading all these mesaages on neuropathy I am starting to ask more questions.   It scary, becauses you are afraid to stop chemo- with the drugs that are working.

I have Stage IV bile duct cancer which was intrahepatic at Stage I, had a liver resection 4/1/08- then In October all heck broke loose.  mets to lungs and two lymph nodes..  But, CT scans since then up to 5/27 have shown no growth and even shrinkage on the lymph nodes.

So I keep plugging away.  I do also takei B12 and B6- my feet seem to be worse then my hands.  I have learned that yoiu can't know too much- you have to be your own advocate.

 Take care, and all are in my prayers= Celeste

 

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Celeste, Wow, you have had 17 treatment!?! I could only tolerate 10. are you taking anything else with it ? I was also taking Taxotere with it which also causes neuropathy. I'm glad you are tolerating so many treatments because it seems to be working for you. For me, my last 2 scans showed minimal if any improvement, so stopping was the right thing for me. I had 2 more treatments of 5 f/U after that and no chemo at all since April. The great thing is, after I stopped, I was going to restart in June, but new scans showed lung tumors significantly smaller, and others were stable with no chemo! So I am taking more of a holiday and will rescan end of July. Also, you may be taking a smaller dose than me, but for me, the neuropathy got worse after I stopped, so be careful. Best to you and keep in touch. Thanks for writing to me. BTW- I now take B6 50mg, B12 500 mcg, Magnesium 400mg, and Lipoic Acid 600mg (a physician friend recommended all these) and the B6 he said should be P5P/PAK- this is all for neuropathy. I can't tell if it is working. My feet and ankles are affected, so I can't walk far, fast or hike anymore. I did go for a hike this past weekend though with my hiking boots which are over my ankles and it was much better. Slow but I did it! Jeanne

On 2/1/2005 Biscuit wrote:

I have terrible neuropathy in my feet and legs from Oxaliplatin. I can no longer continue with treatment. Neurontin doesn't help me. I have pain and numbness that stops me from living. Has anyone dealt with this terrible conditon?

Biscuit, How is it going? I just came to this posting even though it is from 2005. I was recommended bu a physician friend to take Lipoic Acid 600-1000mg, B6 P5P/PAK 50 mg, B12 500 MCG. My firned who has neuropathy from diabetes recommended magnesium 400 mg to stop the pain but doesn't help her neuropathy. None of these things is helping mine either but I keep taking them hoping it gradually will get better. Jeanne

 

On 6/16/2009 neenjeanne wrote:

Celeste, Wow, you have had 17 treatment!?! I could only tolerate 10. are you taking anything else with it ? I was also taking Taxotere with it which also causes neuropathy. I'm glad you are tolerating so many treatments because it seems to be working for you. For me, my last 2 scans showed minimal if any improvement, so stopping was the right thing for me. I had 2 more treatments of 5 f/U after that and no chemo at all since April. The great thing is, after I stopped, I was going to restart in June, but new scans showed lung tumors significantly smaller, and others were stable with no chemo! So I am taking more of a holiday and will rescan end of July. Also, you may be taking a smaller dose than me, but for me, the neuropathy got worse after I stopped, so be careful. Best to you and keep in touch. Thanks for writing to me. BTW- I now take B6 50mg, B12 500 mcg, Magnesium 400mg, and Lipoic Acid 600mg (a physician friend recommended all these) and the B6 he said should be P5P/PAK- this is all for neuropathy. I can't tell if it is working. My feet and ankles are affected, so I can't walk far, fast or hike anymore. I did go for a hike this past weekend though with my hiking boots which are over my ankles and it was much better. Slow but I did it! Jeanne

 

Hi Jeanne-

 Thanks for your reply.  I have been on a 1/2 dose of Oxc. for quite a while, so maybe that is why I am able to continue on with treatments.I am so happy to hear that you your scans showed some improvement.  As we know, "some" is great news to us !  Sometimes I want to stop chemo-I still work full time, and it is pretty tiring at times.  I have two more treatments than a scan- we will see how I am doing.  Do you get CT scans or PET scans?

 I am going to try the Lipoic acid- will buy it today!  So nice to hear from you- I will keep in touch.  Where do you live?

Take care, Celeste

Celeste- I live in Montgomery, NY which is 2 hr south of Albany in Orange County. My neuropathy may be getting slightly better but it is hard to tell. I just started a yoga class and am going to try to go 2-3 x week. I stopped working when I started the chemo in October. I was so fatigued I knew I couldn't even drive the 45 minute commute. I am 57 and decided to retire prematurely -- 5 years early. But I need some income, I couldn't go on leave without pay, and I wasn't sure if I would be able to work or not. I still second guess that decision every day!!! and I suppose I could change my mind until the end of July. But my job had a lot of stress (is there a job that doesn't?) What kind of work do you do? Good for you for working! I miss work terribly. Where do you live? I'd love to keep in touch with you. Jeanne