Neuropathy From Oxaliplatin

Hi to all of you who have shared on this message board.  This darn neuropathy has certainly got all of us searching the internet.  The main reason I remain interested is because it helps me to know that even though no one seems to take my neuropathy seriously, it is not all in my head.  My oncologist does take it seriously of course, and is a very caring and up to date and proficient caregiver and I hate that there's not much he can do for me.  It's not his fault so I don't complain (much...)  Anyway, I'm 2  1/2 years out from chemo and happy to be here, but still have annoying peripheral neuropathy.  It is always "humming" but only occasionally painful.  I gave neurontin and b vitamins a try but they made no difference.  I am a veterinarian and have lost confidence in my surgical skills so have altered my days to include all the other aspects of practice and schedule surgery with the other vets in the practice.  I was back playing tennis pretty competitively but my balance was a little off...finally this June I stumbled and fell so hard I dislocated my left ankle.  I have spent the last 4 months recovering-surgical repair, cast, crutches, etc. but now am back walking well.  The reason I sought out this message board was because when I mentioned by neuropathy to my orthopedist in terms of whether I could safely risk this bum ankle on the courts again, he just didn't make the connection.  ARGGHH!!  Said I should see a neurologist...Anyway thanks for a place to share.  I don't think I will ever be normal again, but since I was stage III c with thirteen positive nodes I really am grateful for the oxaliplatin.  Let's all stay in touch.  The best advice I have is to eat right, exercise, rest, destress... when I take care of myself the neuropathy is lots easier to tolerate and even milder I think.  Best to all,  Nancy

Hi Vetmom, I've been reading or skimming over some of these messages re: neuropathy and it seems that the general conclusion is that there isn't, as yet, any cure or promising treatment for those of us who have this! I guess we can always hope that we're in the group who will eventually be free of the irritating symptoms. I read on another website that 90% of chemo-induced neuropathy eventually goes away, which is certainly encouraging. What I don't know is when that "eventual" time is! I think most everyone also agrees that it's better to have the neuropathy-for awhile at least-than "the other option"!

I'm currently taking Lyrica. After the 7-day trial period it seemed(hopeful imagination?)to improve some, maybe 5%, so I figured it was worth continuing. But now, at least a month later, I don't detect anymore improvement, so I'm thinking of stopping the Lyrica.

In some of the messages on this board I detected a disinterest on the part of some of the oncologists, which was also the case w/ mine. Maybe disinterest is not the right word, perhaps ignorance is a better one...ignorance of what can/should be done to treat neuropathy. Maybe they should search the web, like we are, to come up w/ some ideas!

It's wonderful to know that God does not operate according to human statistics, so I believe we all should be encouraged to know that there is hope for us...the type of hope that makes us trust Him to not only do what is best for us but also to give us the strength, patience...whatever it takes! to go through days and hours of pain and/or discomfort. And He does answer prayer. I know that b/c I am walking proof of that!

Nice chatting w/ you and with whoever stopped to take the time to read this.

OK, it has been exactly two years since my last oxaliplatin infusion. (I received 11 infusions, stage 3 colon cancer) The neuropathy has not gone away in my feet and legs and still lingers in my hands, although not as severe. My oncologist just shrugs his shoulders when I tell him that the neuropathy is no better. I guess I am one of the 15% of patients who develop permanent neuropathy. I am now 50 years old. Good luck to all. Perhaps some day we will have a less barbaric cure for cancer. jOSEPHj

I finished treatments about 16 months (Dec 2006) ago with oxaliplatin.  I'm 54 with stage 3 rectal cancer.  I'm a pharmacist and was aware of the benefits of calcium and magnesium.  I still had neuropathy in my feet, legs, and fingers even after using the calcium and magnesium.  My fingers are good enough to button my shirt, however my feet and legs continue to bother me.   I continue to play sports, including 4.0 tennis.  My problems consist of pain in the bottom of my feet after playing tennis.  They are tender enough for me to hobble when I get up in the morning.  I take some ibuprofen to help with pain and allows me to move around better.  I find doing some excercises with my feet help some.  I have given up on it getting any better.  I too have tried Lyrica but felt the drowsiness was not worth the little or no releif I got from it. Like most other people I do feel fortunate to have no cancer at this time, it just bothers me when I think about the additional problems numb feet can cause me in the future.  I appreciate everyones comments and get some satisfaction reading other's stories and their progress.   Thanks steverj

Hey- yrfriend2 again... still here after 4 years! Yay- that's the part that matters, even tho I still have same neuropathy.. gotten used to it, and still very cold natured, fingers ache more when cold- early chemo-induced arthritis...  the bend at neck turned out to be 2 herniated discs, which prob. partly due to my job as a dental hygienist, but came soon after chemo ended.... the neuropathy never got any better after the 1st couple months following chemo... like I said, I get used to it.. still annoying, occasionally awkward if I type or write alot etc.. but  it's ok... I'm here, and God is good... life goes on and its better to know we've been given more time! blessings to you all

 

On 4/18/2008 Yrfriend wrote:

Hey- yrfriend2 again... still here after 4 years! Yay- that's the part that matters, even tho I still have same neuropathy.. gotten used to it, and still very cold natured, fingers ache more when cold- early chemo-induced arthritis...  the bend at neck turned out to be 2 herniated discs, which prob. partly due to my job as a dental hygienist, but came soon after chemo ended.... the neuropathy never got any better after the 1st couple months following chemo... like I said, I get used to it.. still annoying, occasionally awkward if I type or write alot etc.. but  it's ok... I'm here, and God is good... life goes on and its better to know we've been given more time! blessings to you all

YUP YOUR RIGHT!!! I too am here 4 years after being told I only had 3-6 months!!! I have AWFUL pain in my feet!!! I (and my drs) have tried EVERYTHING!! I have finally figured out this probable is what its going to be like forever. After letting"it" get to me (and it still does sometimes!) I decided that at least Im alive and get to see my kids(youngest is now 16) and grandkids(due in Oct) grow up!!(God willing) and if this is the price I have to pay...then ok!! I figure its worth still being alive!!! Maybe one day they will have something for it.Right now Im on low dose methadone and tramadol and it helps me get through the day(not without pain though) But I would do it again,for the same results!! Heidi

VetMom,

I just completed a FOLFOX6 regimine on 7/18.  Fingers and feet were constantly 'buzzing' for the last 3 of 12 treatments.  Oncologist said not to worry, everything would be normal after a couple of months after treatment.  Well, I don't see any difference except the buzzing has turned to sensitivity in my fingers such that the tips of them get really sore after an hour or so on the computer.  The buzzing, tingling, and soreness cover any sensitivity to light touches. (I hope no one wants me to hand them a raw egg!)  My feet feel as though i walked barefoot on a gravel bed yesterday.  I'm seeing significant reduction in balance.  Between stumbling around, dropping stuff, and knocking over stuff, I'm beginning to feel like a toddler again!  One other thing, I have slight spinal cord compression at L3,L4, and L5.  According to my neurologist, I could have expected the low-grade pain I was experiencing from that to get worse since all nerves are targets for the platinum and any pre-existing inflamed areas will just get worse.  Give the man a prize!  The lower back/upper leg pain is no longer low-grade!  Recommended treatments;  steroid injections for the lumbar issues and patience for the fingers and feet issues!

I've been to the Oxilaplatin manufacturer's web site.  There are several articles that discuss the drug and neuropathy and none of them are very encouraging.  In one study 30% of the participants dropped-out due to neuropathy effects during the study.  One article said neuropathy existing 18 months after final treatment is likely to be permanent.  Further, from the data I saw, the difference in 5-yr survival rates between Oxilaplatin and alternative treatments were not overwhelming.  After the fact I've learned that there are alternative programs with similar results and different side effects.  One is nearly 100% for hair loss and bad for stomach and bowel upsets; that was not explained to me.  I very well may have chosen the alternative if I had known then what I know now.

What's done is done.  Praise God for the good results we've had so far, but more discussion of treatment alternatives and the pro's and con's of each would have been nice.

Good luck and may God bless  you

Ed

Hi, I am new here.  I usually post at the colon cancer chat board.  I am 3 years post oxaliplatin for colon cancer (FAP) and have severe neuropathy in hands, legs, and feet.  The hands seem to be regressing to cold sensitivity recently.  I have tried neuronton, Lyrica, accupuncture and the glut. things.  My question is how many of you have lost your taste and smell as well as all allergies at the same time that you aquired the neuropathy and have you found any thing to help that?  I have had the sinus studies to rule out any other issues besides the nerve damage.  Any feed-back would be appreciated  June

 

On 4/19/2005 John456 wrote:

Too bad no one told you about the treatment (suggested by Oxaliplatin or Eloxatin's manufacturer, Sanofi-Aventis) to reduce side effects such as neuropathy and cold sensitivity. The treatment consists of 1000 mg. Calcium Gluconate and 1000 mg. Magnesium Sulfate both before and after your Oxaliplatin infusion. At first, it didnt' seem to make much of a differance for me. After the second treatment, I noticed significant improvement. I'm told by my various nurses that improvement is cumulative. I believe in being informed. I learned of this particular treatment from a guest physician at an "I Can Cope" class put on by the American Cancer Society. By the way, this is the class from which I learned the most. I was the one who took the information to my physician and requested this treatment to reduce side effects. Sanofi-Aventis said that they sent a flyer recently to all prescribing oncologists about this treatment, but I had to ask for it. If Oxaliplatin is really not for you, look into FOLFIRI as a treatment option, that is if you are using 5FU currently.

I've checked the Sanofi-Aventis web site very recently and could find no reference to the treatment you described.  Finally after a lot of digging, I found that they no longer recommend this since they had study data that indicated that it reduced the cancer-control effect of the oxilaplatin.  I've got the same buzzing fingers and feet and a slightly compressed nerve in my back starting kicking my butt!  Lyrica is helping the finger and feet soreness but the buzzing continues.  Steroid injections have really helped the back.  An anesthesiologist at a local pain clinic has been the most sympathetic and, by far, the most helpful in my battle against pain and neuropathy.  My oncologist is a non-participant and his PA is 'sorry'.

Hi, Ed

I completed my FolFox4 with oxi treatment in 2/9/08 for stage 3 colon cancer with 2 lymph nodes involved.  The oncologist discontinued the oxi after the 8th treatment.  The neuropathy just continued to get worse after I was off it.

Yesterday was my first anniversary since the chemo stopped.  At present I am cancer free.  The neuropathy in my hands and fingers has improved with time, but still slightly there.  My feet are another problem.  From the tip of my toes to about the ball of my foot are tingly and numb.  Whenever I think my feet feel a little better...it is back to square one.  I have tried massaging them, wearing warm socks, having them snug in my walking shoes...but it does not seem to help.  I did read some place to wear Croc shoes and get them large enough that they do not touch your toes.  I also knitted socks that are soft and bulky to wear with them.  That does help some.

I recently saw a neurologist and had tests and I thought it interesting that you mentioned you had some L3, L4, L5 disc involvement.  They tested me to see if my herniated discs had anything to do with the neuropathy.  It makes sense what your neurologist said.  I go back to the neurologist the latter part of this month to get the results of the tests. 

I am taking B vitamins and magnesium for the neuropathy...but notice no change.  The neurologist said that it can take 1 and 1/2 years after chemo to be better...or not.

I pray that they will find something to help with the neuropathy...but I am glad that I am alive and would probably still have taken the oxi to insure being cancer free.

I hope that your neuropathy symptoms improve with time.

Thanks!

Diane