Neuropathy From Oxaliplatin

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?

Dear sandra, i have the same problem, try having someone rub your feet and then put on hot socks from the dryer. i also put a heating pad under my feet in my bed. mine ache and this helps me get to sleep suanned

Dear Suanne D.
Thank you for telling me about what helps
you. I'm also on Neurontin for nerves. It
hasn't helped much yet. Need to see a Vascular
doctor for the terrible veins in my right foot
caused from chemo damage. I have stopped all
chemo and am currenly only on Avastin.
Thank you again.
Sandy

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.

Thank you so much John.
I believe in keeping informed as well. I even
have a son in medical school as well. He thinks
Oxaliplatin is wonderful and never told me
about the calcium and magnesium treatment. I
also had a doctor who twice gave me the drug
when my blood was too low. He did not look at
the blood report before signing his consent
for treatment.
Do you have any ideas for me now? What
do you think?
Sandra

I took 10 cycles of oxaliplatin and discontinued due to numbness in fingers- I am a dental hygienist! I was unaware of any preventive treatment possibilities as John mentioned but after the chronic cumulative effects set in, I did research on internet sites about that and found various treatment options that looked promising, but they were PREVENTIVE, not post-therapy treatments. It has been 9 months since my last Ox. treatment and I have hoped symptoms would subside- and they did from the worst that I experienced the first 2 months or so after discontinuing Ox.( the symptoms worsened AFTER treatment ended)- the symptoms I'd say are about 15% less of the initial worst of it- jittery-ness, dropping things.. but swelling and achyness, numbness have remained... I have decided to wait one full year and then look for treatment options and evaluate benefits of them... I am aware neurontin and tegretol have drowsy symptoms which I don't need.... but I have not received any advice from my oncologist, hardly any comment actually when I have remarked on symptoms... also at bend of neck it feels strained and nasal passages are stuffy. All this I can live with but would love relief if reasonably. I am curious if there's anyone out there who has been out of treatment awhile and their symptoms, treatment researches... wondering how long you were in treatment? stage of cancer? age? I am 42, and my colon cancer was stage 3. I am glad to recieve any info, as it is hard to find on neuro damage of the chronic kind, as even this message board took me awhile to find....I am on my own since my oncologist seems uninterested, I am wondering if he has seen others in much worse shape and my case seems mild to him...I am 15 months post diagnosis, surgery and last Fl/leucovorin was Sept. 04... so I'm doing well so far ... I am looking into genetic factor- having my blood tested for genetic flaws, and would love ongoing help w/ neuro problems as available.... thanks to anyone who wants to respond!

Hello yrfriend, I am a 65 yr old woman who had folfox treatment from Aug 2004 to Feb 2005. I have mild neuropthy in feet and hands. The feet sometimes get so cold that nothing I do warms them up. My worse side affect from oxaliplatin is pulmonary fibrosis. That starts with a dry cough, which my oncologist said had nothing to do with the chemo. That was not true!! This disease can spread thru out the lungs causing death to the patient. I have been seeing a doctor at Pennsylvania Hospital and will be going to the University of Pennsylvania for a second opinion. I am on oxygen 24/7 and can do very little for myself. I have found, on the internet, that only 1% of oxaliplatin patients get the fibrosis. Does anyone else out there have this disease??? Any response would be appreciated.

Hi Barbara? I'm not looking at the message you replied from mine...so already forgot your name...anyway I can't offer any advice on your pulmonary fibrosis but I am glad you brought it up sometimes I wonder if maybe there are things that are going on possibly inside me that aren't very obvious or may become a problem later like breathing. I wonder if maybe I could have a mild fibrosis & not notice it and maybe someday I get pneumonia or something and I don't heal as well...just wondering not worrying. I just can't help but think there are prob. some things going on inside we don't know and aren't being checked for...so I just appreciate you calling attention to it and I feel anyone taking Ox. should at least be alert to the possibility of minor things maybe lurking, make doctor aware of at exam time. I looked up Oxaliplatin in a PDR - "Physician's Desk Reference" which every doctor and dentist has on their shelves, and there were like 11 pages on oxaliplatin, very scientific, but a doctor can navigate all that that is over anyone's head...not to cause alarm but it is good to know all facts and percentages of having some of this stuff. I was one of the first in my area to take Ox & there are no long term studies yet on we who are taking it at this regimen so I think even the Oncologists are learning what really tends to be the side effects of it...mine does downplay mine as I said, and maybe he's just glad I haven't had the worse stuff like you. I'll pray you find treatment if that's possible and for God to restore your health...that's all we all can do...and stay informed! take care- yrfriend2

Dear Natalie B.
I had a stage 3 adenocarcinoma tumor in my lower colon,
surgically removed. I am now 61 years old. There are no
indications to date of any reoccurrence.
Post surgery, I completed 12 cycles of the FolFox 4 Regime
[oxaliplatin, with 5- FU with leucovorin 48 hr. infusion drip]
The oxaliplatin was discontinued on the twelfth cycle . Chemo
treatments ended early March 2004. At 16-17 months post
treatment, as best phrased, there has been an almost
imperceptible improvement of the chronic neuropathy that
developed post-treatment. In particular, neuropathy
developed in the fingers and palm heels of both hands with a
glove effect extending to the wrist, and in both feet with a
stocking effect extending to the knee, worse in right leg. I
experience difficulties in maintaining balance from side-to-
side, but not heel to toe.
Your post-treatment achiness and neck stiffness symptoms
also coincide with those I continue to experience. I even
experienced for a time, Lhermitte’s sign (an electric sensation
experienced with flexing of the neck) (considered rare)
I am currently experiencing wrist, elbow stiffness and shoulder
position discomfort in both arms. Both knees also ache if held
in one position too long. (However, I am not able to
differentiate ankle ache from the general neuropathic
sensations that developed and currently persist.) All of the
involved joints also generate pain upon initial movement that
subsides with continued motion. Sleeping is a problem.
I am investigating with physicians other possibilities for the
onset of the joint pain, but because it is symmetrical and
associated with my limbs I suspect it relates to neuropathic
consequences of the Oxaliplatin therapy. I do not have any
swelling or redness indicating any irritation of the joint
membranes. I am forwarding and Article entitled "Oxaliplatin-
Associated Neuropathy: A Review" by Robert J Cersosimo, Ann
Pharmacother 2005;39:128-35, to you.
Good luck in your investigation and keep me posted.

Hello Yrfriend (Natalie B?), I was glad to come across this forum since I also searched in vain to find discussions of oxaliplatin induced neuropathy. I had stage 3 resected colon cancer, followed by 12 cycles of FOLFOX4. Several times the time between cycles was extended because of low blood values. However, I was getting worse and worse chronic peripheral neuropathy to the point of what is called level 3 (affect daily living). My oncologist felt it better to "tough it out" and finish the cycles rather than back off the dose or stop. I agreed but in retrospect, I wonder if this caused the high degree of chronic neuropathy I suffer now. At first I took clonazepamum (may not be avail. in US, trade name Rivotril, an anti-seizure drug) which worked well. Still I had to increase the dose steadily for 4 months after my chemo ended. Then I thought things were improving for a few months since I could decrease the dose but this was a fake improvement due to the extremely long-lasting effect of the medicine. I soon found things getting very bad and had to up the dose again. Then after about 6-8 months post chemo, the neuropathy "changed" in terms of sensations from moving pinpricks (hands and feet) to a more steady tingling. The Rivotril no longer completely masked this sensation which quickly became maddening and intolerable. I tried Neurontin which didnt work until I was at a fairly high dose (4 x 300mg per day). I am now 15 months post chemo and am up to 4 x 500mg per day and with more discomfort than before. Thus I can attest to having an increasing degree of discomfort beyond 1 year after end of chemo. I too have searched the internet for more info and for possible things to try to "get better" but we long-term oxaliplatin neuropathy sufferers seem to be too few for anyone to take us seriously. I seem to be lucky in that the two medications I am taking do not have serious side effects yet, although I am experiencing occasional nausea from my morning dose of Neurontin. I am barely able to work normally (I have to sit down and rest a lot). I cannot do any of the activities I enjoyed before (running, biking, hiking). In fact anything that increases my heart rate (walking upstairs) also increases the effects of the neuropathy to the point of intolerable annoyance or pain.
What little info I could find, as well as from my oncologist and neurologist, seems to indicate that although the damage is in principle repairable, in some people the repair doesnt occur or only occurs partially. I was told that if it doesnt improve after 2-3 years, it is probably permanent. So, we still have a chance but given the direction mine is going, I am doubtful.
Thats my story and I hope that there might be some chemo induced neuropathy sufferers out there that have even longer duration information for us as it would improve my morale if I learn that someone had a similar case that got better, even if it took 3 years!
I hope your neuropathy is going in the right direction but if it get unmanageable, I would ask to try Neurotin and/or one of the anti-seizure drugs which sometimes are effective for neuropathy. It doesnt hurt to also take the usual vitamin supplements well known for nerve problems (basically all the B complex, especially B12). That about all I can recommend.
If Davide happens to read this, I would appreciate also receiving the Cersosimo article.