Peripheral neuropathy from oxaliplatin

On Apr 18, 2012 10:40 AM survivor_bug wrote:

In 2005 I had the oxaliplatin in one  setting over 6 months every other week with the magnesium and calcium and I still have the PN.  I was told it would go away and it did during the first 3 months of treatment then it was here to stay.  Did neuronton (no response), lyrica (bad side effects), and several other drugs that are used for depression from the neurologist that had no impact on it.  I also lost the taste and smell nerves except for the sweet (that has gone now after the progression of the neuropathy) and the salty - I still have that one for now.  I still react to the sour taste but can not taste it.

Hi Survivor, I also tried lyrica and yes bad side effects. The main thing I have found that has helped me and maybe it is the reason that I am feeling so much better is acupuncture.

I found a good acupuncturist and spoke with him over the phone before making an appointment. He was trained in China and is also a registered nurse he has lso treated diabetics with PN. I started off with weekly appointments then after 6 weeks I went onto fortnightly appointments and now I am on 3 weekly and in a few weeks will go on monthly then hopefully I will not have to see him again as that is his main aim, to treat with the hope I will never have to return.

My neurologist has also told me that rubbing deep heat into the affected areas on a regular basis helps as it slowly builds up and decreases the pain from NP.

I haven't lost any taste or smell nerves through NP but I have lost it all just through the chemo and I find that for a few days after having my chemo treatment I cannot taste any food.

Maybe you could try and find an acupuncturist and give that a try.

I hope all works out for you eventually.

Dear Doctor Dan:

I think I wrote to you previously...but I thought if I update you with my "progress", maybe you or my other friends could please come to my rescue!

I was "managing" to live a somewhat normal life (for a person with chronic neuropathy) being medicated with 1200 mg of Gabapentin(600mg 2x daily), 10 mg of Oxicontin 2x a day, 40 mg of Celexa(at night)...I still had pain, I was still limited with driving at times (I would skip the morning Oxi when I had to drive)...and then UPMC Healthcare in all of their wisdom decided I did not need the Oxicontin.  I have now tried Fentynal...no good, Nuycenta..starting working, then the drug manfacturer changed their plan...no longer covered, and now I am at the local Pain Center.  They now have me on 15 mg of MS Contin 3x a day, increasing Gabepentin to 3600 (up 300 mg weekly up to what I can tolerate) and changing the Celexa to Cymblata (I am sure my insurance company will be denying this medication..we'll see) and final Liboderem patch which was denined because my neuropathy is not related to diabetis.  I tried this regime and I still am have the burning pain on my feet..esp. the right foot on the top.

Now they are considering changing the MS Contin to Opana....what??????? and they are wanting to see what is causing me to be tired....are they kidding...I don't have a medical degree but I can tell you, I know it the narcotics and the Gabapentin and oh yeah the Celexa!

Ok Doctor Dan....what say you????

 am sorry to hear your neuropathy is this painful, i too have developed it frim the chemo treatments.  Fortunately for me it is nowhere near that degree.  I wish i could offer a simple solution but i know none.  I can only empathize about the treatment from the insurance companies, my daughter also has trouble frm insurance companies refusing her meds, although not cancer related they do let her function through the day.  I am 4th stage breast cancer that is why i know about the neuropathy.  Good luck.   

Thanks for your response....honestly, sometimes I think I have more trouble from the insurance companies than I do the pain.  I worked in Human Resources for 30 years advocating for the employees who worked for our company.  I was the one who worked with the brokers negociating with the insurance companies.  Of course Blue Cross/Blue Shield was the best...expensive but not so intursive...Health America...kinda of pain...but in the end they pain for all of my very expensive and complicated procedures and medications.  And then there is UPMC Healthcare.....what a nightmare....not only are they giving me a hard time...they are also giving my husband are hard time (He is also a cancer survior advanced prostrate) So all you HR Directors and anyone in charge of making decisions about your employee's healthcare needs...STAY CLEAROF UPMC HEALTHCARE!!!!!  great comericals....ABSOULTELYHORRIBLE IN REGARDS TO MANAGING THE EMPLOYEE'S HEALTHCARE NEEDS AND ALSOTERRIBLE CUSTOMER SERVICE!!!!

Ok that was my rant for the day....thanks for your empathy and I hope you are doing ok. :D

On Apr 18, 2012 1:44 PM mazsa wrote:

On Apr 18, 2012 10:40 AM survivor_bug wrote:

In 2005 I had the oxaliplatin in one  setting over 6 months every other week with the magnesium and calcium and I still have the PN.  I was told it would go away and it did during the first 3 months of treatment then it was here to stay.  Did neuronton (no response), lyrica (bad side effects), and several other drugs that are used for depression from the neurologist that had no impact on it.  I also lost the taste and smell nerves except for the sweet (that has gone now after the progression of the neuropathy) and the salty - I still have that one for now.  I still react to the sour taste but can not taste it.

Hi Survivor, I also tried lyrica and yes bad side effects. The main thing I have found that has helped me and maybe it is the reason that I am feeling so much better is acupuncture.

I found a good acupuncturist and spoke with him over the phone before making an appointment. He was trained in China and is also a registered nurse he has lso treated diabetics with PN. I started off with weekly appointments then after 6 weeks I went onto fortnightly appointments and now I am on 3 weekly and in a few weeks will go on monthly then hopefully I will not have to see him again as that is his main aim, to treat with the hope I will never have to return.

My neurologist has also told me that rubbing deep heat into the affected areas on a regular basis helps as it slowly builds up and decreases the pain from NP.

I haven't lost any taste or smell nerves through NP but I have lost it all just through the chemo and I find that for a few days after having my chemo treatment I cannot taste any food.

Maybe you could try and find an acupuncturist and give that a try.

I hope all works out for you eventually.

I did acupuncture for a good 6 months.  She too was trained in China and was in the healthcare field.  Her claim to fame was that she cured the "hiccup girl".  That was the year I went to her.  She kind of did not believe the taste/smell part and tested me and sure enough I was for real.  She was the second practioner I went to.  Insurance did not cover it and I invested over $2,000 before I gave up on it too.  My oncologist has no other patients with PN this long and has tried so many avenues.  The one thing I will not do is the nerve blocks with the pain management doctors.  Nerve blocks are too invasive through the back.

On Oct 04, 2010 4:12 PM survivormom wrote:

Dr. Dan, My 16 yr. old son was diagnosed with testicular germ cell tumor, intermediate risk. He is experiencing continual ringing in his ears for about a month so far. I know its from Cisplatinum-(not sure if related to oxaliplatin).He also had Etoposide and Bleomycin. He also had tingling, numbness in legs and arms and speedy heartbeat(could have been from bleomycin)after walking a long way-about 30 min. once but it went away. He still has episodes of coldness and tingling occasionally in arms hand fingers feet and legs. His oncologist wants him to go to ENT for the ear ringing and he will but after the research I've done' there's not much they can do.If "" target="_blank" rel="nofollow">http://do.If " target="_blank" rel="nofollow">do.If they suggest an operation or more chemicals I'm going to flip!I just pray that over time the damaged ear nerves will heal back to normal. Personally even 1 day of ear ringing would drive ME crazy!So yes doc, cisplatin does cause neuropathy and ringing of the ear and probably more I'm not aware of yet wether it be ocassional or constant. God bless you for doing this important research!

My brother was on cisplatin for non-small cell llung cancer.  They didn't tell him it may damage his hearing.  He is now completely deaf in his right ear. I don't know if there are any remedial mitigators ( medicines) that might lessen or eliminate this, nor do I know if everyone taking cisplatin ends up with hearing loss or deafness, but I would question his doctor about this.  I just noticed that your post was from 2010. I am new to this website--I hope his hearing was not affected

Just new to this message board and have been reading about the PN.  MY husband was diagnosed with small cell lung ca in March he did Cisplatin and etoposide Last tx was August Now he has increasing PN pain in hands and feet, severe hearing loss, and all the other symptoms I read previous to this entry.

I guess I am a little upset because the make light of the side effects.  As a nurse  I choose quality over quantity of life.  But it was my husbands choice to beat this no matter what.  It has been helpful reading the entries in this site.

this is my first time replying.Ihave been out of chemo for 2months i hadto return to work a job that i have to be on my feet for 8 hours .I have pins and needle in the soles of my feet by the end of my shift i cant wait to go home take off my shoes and rest. i wasnt expecting this because it wasnt bad when i wason my chemo.going to the gym helps. Icant do asmuch cardio as i would like because of the numbness

this is my first time replying.Ihave been out of chemo for 2months i hadto return to work a job that i have to be on my feet for 8 hours .I have pins and needle in the soles of my feet by the end of my shift i cant wait to go home take off my shoes and rest. i wasnt expecting this because it wasnt bad when i wason my chemo.going to the gym helps. Icant do asmuch cardio as i would like because of the numbness