permanent nerve damage due to oxaliplatin

Hi Everyone,

I need some advice from anyone who's had oxaliplatin. 

I've only had 4 treatments with oxaliplatin and am worried that the following symptom is a predictor of permanent damage down the road if I continue treatments.  So, tell me, is the following symptom common after just 4 treatments?  Three times since I got treatment #4, my right hand has frozen up on me for about 2-3 minutes.  I try to move it and it moves in an uncoordinated way as if in slow motion.  There's a disconnect between the muscles in my fingers and my brain.  It's not numbness.  I believe this condition is called ataxia.  Right now it's transient, but the fact that it has repeated itself has me worried that it might become permanent. 

I've read quite a few journal articles that have led me to infer that if a person gets serious side effects early on, they're a candidate for long-term permanent damage. 

So, how serious is this side effect after just 4 treatments?  Common or uncommon?  I also have the pins and needles thing that lasts all 14 days, though dimininishing in intensity by day 14. 

I really need your input ASAP.  I don't completely trust my oncolologist, unfortunately.

Trish,

Bear with me as my fingers don't work so well all the time from the Oxy.  I have only had 1 treatement and I had such a bad reaction during my first infusion that they had to stop the infusion twice and medicate me with benedryl and prednisone in order to continue at a much slower rate.  So, I know that I have a much different experience than most.

I am havng trouble with my fingers intermittenly but, not to the degree that you are.  Sometimes it's like they just sort of don't work but it's more like just for a split second or so.  Kind of like they are lagging behind my brain.  Typing is a real adventure.  I'm now 10 days out and it's still there though not as much as it was in the first week.

I have actually read ... but, I can't remember were ... so I can't verify ... that if you have the side effects early, that you are more likely to recuperate after finishing chemo and that if you have a later onset, the effects seem to be more lasting.  Believe me, when I got them right away, I tried to find that article again that said that but, I'm a little foggy and can't seem to place it.  I would think though that it was from a medical study or journel as those are the articles that I read and take the most stock in.  I'm sorry that I can't tell you that is the case for sure.  Somehow, I remember that it said that those who showed side effects at the 8th treatment and later tended to have the most lasting effects.

I'm sorry that you don't trust your onc.  Is there anyway that you can change your onc and get one that you trust?  That is very important for your treatment.

I hope you feel better and notice an improvement in you side effects.  Take care.

On Nov 03, 2010 6:26 PM Lori-S wrote:

Trish,

Bear with me as my fingers don't work so well all the time from the Oxy.  I have only had 1 treatement and I had such a bad reaction during my first infusion that they had to stop the infusion twice and medicate me with benedryl and prednisone in order to continue at a much slower rate.  So, I know that I have a much different experience than most.

I am havng trouble with my fingers intermittenly but, not to the degree that you are.  Sometimes it's like they just sort of don't work but it's more like just for a split second or so.  Kind of like they are lagging behind my brain.  Typing is a real adventure.  I'm now 10 days out and it's still there though not as much as it was in the first week.

 

I have actually read ... but, I can't remember were ... so I can't verify ... that if you have the side effects early, that you are more likely to recuperate after finishing chemo and that if you have a later onset, the effects seem to be more lasting.  Believe me, when I got them right away, I tried to find that article again that said that but, I'm a little foggy and can't seem to place it.  I would think though that it was from a medical study or journel as those are the articles that I read and take the most stock in.  I'm sorry that I can't tell you that is the case for sure.  Somehow, I remember that it said that those who showed side effects at the 8th treatment and later tended to have the most lasting effects.

 

I'm sorry that you don't trust your onc.  Is there anyway that you can change your onc and get one that you trust?  That is very important for your treatment.

I hope you feel better and notice an improvement in you side effects.  Take care.

Dear Lori,

Thanks so much for taking the time to respond.  Sounds like you're having a rough time--and after only one treatment! 

It's reassuring, actually, to hear you describe your symptoms, "like they just sort of don't work . . . like they are lagging behind my brain."  That's exactly what happens to me when I get these attacks.  What's bizarre is that none of the medical literature describes symptoms like these as being associated with oxaliplatin.  Numbness, yes, but not what we're experiencing.  I was so worried that I went to see my oncologist today. 

He agreed with me that oxaliplatin does NOT cause these symptoms.  In rare cases, 5FU does.  He's sending me for an MRI and to a neurologist to rule out a brain tumor.  If they find nothing, he's going to blame it on the 5FU. 

So, let's hope it's the 5FU and not a brain tumor. 

Good luck with your treatments,

Trish

On Nov 02, 2010 10:56 AM trishisintune wrote:

Hi Everyone,

I need some advice from anyone who's had oxaliplatin. 

I've only had 4 treatments with oxaliplatin and am worried that the following symptom is a predictor of permanent damage down the road if I continue treatments.  So, tell me, is the following symptom common after just 4 treatments?  Three times since I got treatment #4, my right hand has frozen up on me for about 2-3 minutes.  I try to move it and it moves in an uncoordinated way as if in slow motion.  There's a disconnect between the muscles in my fingers and my brain.  It's not numbness.  I believe this condition is called ataxia.  Right now it's transient, but the fact that it has repeated itself has me worried that it might become permanent. 

I've read quite a few journal articles that have led me to infer that if a person gets serious side effects early on, they're a candidate for long-term permanent damage. 

So, how serious is this side effect after just 4 treatments?  Common or uncommon?  I also have the pins and needles thing that lasts all 14 days, though dimininishing in intensity by day 14. 

I really need your input ASAP.  I don't completely trust my oncolologist, unfortunately.

Hi Trish,

I had 12 cycles of folfox - the regieme that includes oxaliplatin - back in 2006. I used to experience the acute side effect of pins and needles in my hands for up to 7 days on average of the 14 between each cycle. The acute side effects were cumulative in that they lasted longer as the cycles progressed, as did the fatigue. At the beginning the side effects lasted 2 or 3 days. Towards the very end, my side effects were contnuous throughout the 14 days.

About six weeks after my last cycle I began to notice the first signs of the chronic, long-term nerve damage in my extremities. I had paraesthesia in my fingers and numbness in my feet which still persists to this day. I also have residiual numbness to all my fingertips, which I guess I've just learned to live with.

I have trouble with buttons and tying shoe-laces, especially if I'm not looking at what I'm doing. I believe the technical term for this is impaired proprioception. I also have slight impairment of balance as feedback from my feet is affected too.

I do think that there is a connection between the severity of th acute side effects during treatment and the severity of the late onset chronic side effects.

Whilst I maintained complete confidence in my oncologist, he wasn't altogether sympathetic when I mentioned my nerve damage problems. On the other hand I have survived 5 years following a Dukes stage C diagnosis, so I'm not unhappy about the long-term effects as who can tell if lesser side effects could have been accompanied by a relapse in my colon?

The only other serious effect I originally had was nausea and vomitting, but my anti-emetics were enhanced and this put a stop to the nausea immediately.

On one occasion I'm sure that the oxaliplatin was too concentrated as within minutes I had a very bad metallic taste in my mouth and also felt as if I had a consricted throat. The nursing staff immediately stopped the oxaliplatin drip and changed to a different batch! I always wondered if this incident affected my long-term late-onset side effects. Who knows?

If fine motor control and perfect fingertip sensation is absolutely essential to you long-term, then I'd have a word with your oncologist about your dosage or the number of cycles t=you should have. Otherwise it might be best to accept some "minimal" long-term side effects as they are also an indicator that the drug is around in your system in effective doses to tackle the cancer too.

I hope this helps.

Steve

Trish,

I'm glad that you got to the onc.  Please be sure and post what you find out.  I'm pretty sure it's chemo related as mine only started directly after my infusion.  Maybe it is the 5FU instead of the oxy?? 

I will hope for the best for you!

Steve,

On my first, and right now only, infusion of oxy, about 2 minutes into the infusion, my eyes wouldn't focus and suddenly my body felt like it caught on fire with flames out of my head.  My heart startd pounding, throat and chest constricted and I got confused and I guess I stood up as the next thing I remember is about 15 medical personnel around me pushing me back down into the recliner telling me to sit down.  They gave me 10mg benadryl and after a couple of minutes, I was OK.  After waiting 20 minutes and the attending physician ordering a slow down on the infusion they restarted the infusion.  Then it happened again.  So I was given 20 more mg benadryl, waited 20 more minutes and they restarted at an even slower pace.  The doctor said it was ok to try again as my blood pressure was ok during the reaction. That time it worked ok and I got through the infusion.  From now on I will be pre-medicated with the IV Dex and IV benadryl before each infusion. and the order was written at what rate I tolerate the infusion.  Means I get to spend 6 hours in the infusion room from now on.

I am also allergic to IV contrast and have to be pre-medicated before that.  My reaction to the oxy was similar to my reaction to IV contrast but, on a lesser scale as I actually coded and my blood pressure bottomed out with the IV contrast but, the onset to that was the same type of feelings.

When I discussed the reaction with my onc he said that we would give it a try this next time with the pre-meds and slow infusion but, if there are any other signs of reaction during infusion to let him know as they can lower the dose and if that doesn't work, I will have discontinue it all together.

I am so happy to hear that you got a good result from your treatments.  It is encouraging for those of us just starting out. Congratulations on your 5 years!

Not sure if this will answer your question  but this was my experience on Oxaliplatin. I had 12 treatments after surgery with Oxaliplatin. I experienced the neddles in my throat and fingers. It got real bad at about the 8th or 9th treatment and they took it out of the rest of my treatments. I experienced this on the first time and everytime after but it got worse as we went.

My last treatment was October of 2008 and my left foot is still numb, right foot minor and left hand a little numb. When it gets cold out it still goes right through me.

I hate Oxaliplatin.

Firstly, after 5 rounds my markers kept going up and up. It did absolutely nothing. Second, I am a musician. I play guitar.... or I used to. Oxali has destroyed the sensitivity in my finger tips. Even after being off it for 3 months now. My feet are permanently numb/pins and needles and I get shots of pins and needles down my legs regularly. My left hand also locks in place momentarily from time to time. I had 9 months of FOLFIRI + Avastin with no vomiting but started vomiting immediately on FOLFOX + Avastin. Lost 8 kg's during my 3 months on Oxali.

I also experienced a numbness in... ahem... another "extremity"... which was quite distressing but that has started to go away.

My Pharmacist says it will all correct itself over time. I hope so. The cold still affects me too, feels like razors on my toes.

My husband is getting cisplatin with no results so we are looking into Xeloda with Gemzar. I don't know the extent of your dx but definitely get a second opinion. Don't give up.

Stay strong.

First,  I hope you can fire your doc and get one you trust. This journey is too difficult without a good relationship with your doctor. 

Second, I have had the same symptoms as you- hands not cooperating, but they are fleeting.  I had 11 treatments of Folfox 3 years ago, and stopped (even though my tumors were shrinking) as soon as I told my doctor that my hands were numb most of the time and my feet were numb,  and I was stumbling.  As soon as I stopped, those symptoms got better quickly and disappeared. I started Folofox again, after 3 years of Irinotecan and Erbitux (because they stopped working)  and I have a lot of tingling and some ataxia, as you called it, but my doc says these are sensitivities and are not as serious as the numbness.  That said, she also mentioned that most people can only tolerate 6-8 doses and I have done 4, this round. 

I have not heard about these symptoms in relation to the 5-FU.   Also- I think Colon cancer very rarely spreads to the brain. This was a relief to me.  

Good luck and live well.