CSN Login
Members Online: 13

Neuropathy

Chelsea71
Posts: 1170
Joined: Sep 2012

Steve should be starting Folfirinox this week. It will be the first time he has had Oxilaplatin. I realize there has been a ton of discussion regarding the neuropathy that is caused by the oxy. Unfortunately, I haven't payed much attention as it has never been an issue. I am wondering if there is anything he can do to lessen the severity. Is there a vitamin he could be taking? Some sort of of ointment that can be purchased? Should I ask the onc to prescribe anything to counter this effect? Any suggestions will be appreciated.

Thanks guys,

Chels

Chelsea71
Posts: 1170
Joined: Sep 2012

Also wondering if there are other side effects from the Oxy and what we can do to prepare for them in advance? We know what to expect from the Irenotecan.

Thanks

MaryCarol5's picture
MaryCarol5
Posts: 95
Joined: May 2013

The cold sensitivity for me is pretty bad with oxaliplatin and seems to increase the severity of the neuropathy as well.  I have to drink warm water to stay hydrated.  Even room temp water feels like knives going down my throat.  Also, the air conditioner has caused laryngeal spasms if I pass under a blowing vent.  Keep hands and feet warm with socks and gloves if touching anything cool.  I also had a great deal of stiffness in my neck that is not here now with my break from the oxy. 

Like anything else, it is individual.  Some people do not have the same side effects or have the severity as others.  I hope he has minimal adverse effects.

Trubrit's picture
Trubrit
Posts: 1690
Joined: Jan 2013

I've had 30 different side effects to the Oxaliplatin and 5FU. 

Of course chemo effects everyone differently.  

Here's A list of the worst ones:

Sensitive scalp 

Almost complete hair lloss

Nose sores and bleeding

Thrush (definitely one of the worst side effects for me)

Throat constriction with cold drnks

Heart Burn

Hand neuropathy (feet came later with my 24/7 5FU hook up)

Constipation

And probably worst of all, fatigue.  

But alas, I've heard of people who just breeze through the Oxi. 

Whatever your husband goes through, were on his side with thoughts and prayers. 

 

 

 

herdizziness's picture
herdizziness
Posts: 3492
Joined: Apr 2010

Jaw pain, For some reason they don't mention that too often when listing side effects at the cancer centers.  It only lasts the first couple of bites and then you are home free from the pain, this usually occurs Everytime That you first start to eat. Also, his hands and legs may go spastic, fingers pulling back, legs not doing what you want them to do, again, this only last for a few minutes, just don't be surprised by them. This is from Oxy.

also of course the cold, warm liquids are okay first few days, otherwise it's like drinking cold shards of glass down your throat, not a good feeling.  Again, cold air is bad, could lose his breath for a minute or two if hit with a cold blast of air near the mouth, just remind him, he will breathe again, a scary feeling, but it will stop, put hands near or over mouth and warm the air.

Make sure he has gloves.

those were the side effects I suffered, it was relatively an easy chemo for me.  Fatigue was not a problem, didn't lose my hair (Irenotican was a whole different story, lost all my hair on that one) I did really well on the Oxy, Avastin, Xeloda (pill form of 5FU) combo.  Best of luck to hubby.

oh, and get some of those nice wet wipe that can be flushed down toilet, won't be able to use them when hands are suffering from cold sensitivity but good from rear end due to diarrhea, also the AD for baby diaper rash is great to ease any discomfort down that way.

Winter Marie

hippiechicks's picture
hippiechicks
Posts: 374
Joined: Sep 2012

aaaahhhhh...I just remembered about that jaw pain!!!! Cringing with its memory! Yell

serenity101's picture
serenity101
Posts: 82
Joined: May 2013

For me, the sensation was like I had bitten into something incredibly sour. I found that if I consciously thought about the fact that I was going to take a bite before I did it, the senasation was greatly reduced. I don't know why it helped, but if it helped me maybe it will work for someone else too, so I thought I'd share it.

Chelsea71
Posts: 1170
Joined: Sep 2012

Interesting. He did mention getting a sharp pain in his jaw yesterday while driving home from chemo. Says it happened when he opened his mouth to take a bite. Will pass this tip on to him.

Thanks

LivinginNH's picture
LivinginNH
Posts: 1337
Joined: Apr 2010

Tip: Consider ordering a few pairs of wool padded LLBean sox - Rick wore them 24/7.  He liked their "Wicked Good Slippers" too, nice and cozy.  :)

Annabelle41415's picture
Annabelle41415
Posts: 4398
Joined: Feb 2009

Nasty drug but glad that you are trying to prepare.  Have a pair of gloves going in the grocery store.  Don't drink cold drinks and the air condition is at a comfort level he can tolerate.  Get some "miracle mouthwash" because the treatment can cause mouth sores and better to have it on hand instead of waiting for an appointment.  My onc suggested taking B6 which lessesn the neuropathy but it really didn't help me.  Be careful of the mag/cal that has been suggested as my onc said that it lessens the effect of the drug if this is added but that was my doctor.  Actually I'm now suffering from neuropathy years after and I'll never recover from it so just follow what you feel is best after doctor's advice.  Good luck on future treatments.

Kim

jen2012
Posts: 1251
Joined: Aug 2012

There was something recently that told oncs they should stop the Cal/mag. Vit b didn't seem to help my husband either. Chelsea ....no other suggestions that the others didn't say...just good luck....hoping Steve gets a well deserved break and doesn't have any of the issues!

Sundanceh's picture
Sundanceh
Posts: 4339
Joined: Jun 2009

Interesting about the discontinued use of The Mags for neuropathy due to it lessening the effects of the chemo.

That could very well be the case now...and maybe it was then too....though my doc never said it when he ordered it.....he ordered it because I had been reporting increasing neuropathic symptoms....and one day it was on my IV tree.

Personally, I wouldn't do Oxy without, despite what's being said...I've heard from many (including myself) where it was a benefit for them in reducing the cold symptoms from the treatment.  I know I could immediately drink cold liquids right out of infusion...and the tingling of my fingers under cool water was greatly reduced. 

I recurred anyway, where Mags reduced the effectiveness or not.....and I recurred again on a different chemo where Mags was not required.

I've got some neuropathy...mostly in my one foot.....my hands and arms tingle sometimes, but not all the time.  I think for me if I tingled all over my extremeties, I just don't know what I would do...

The Mags does not work for everyone, that is true....but many folks have written me and told it was a tremendous help to them....and it brings with it a sort of humaness in that treatment that makes it bearable.

That's just me though...

traci43's picture
traci43
Posts: 448
Joined: Jul 2007

Not too much to add but always keep gloves handy and never drink anything cold.  Avoid air conditioners.  I was picking up my anti-nausea meds right after chemo and stood under the vent.  I literally could not feel myself breathe.  I never passed out so after about 5 minutes I realized I was okay but by then the paramedics were called.  LOL!  Oh and my tear ducts hurt when I cried, still does sometimes.

I haven't had oxy for alost 4 years now.  I did the Ca/magnesium but I see they are saying that it's not good anymore.  I don't know that it really helped me anyway.

 

Good luck!

 

herdizziness's picture
herdizziness
Posts: 3492
Joined: Apr 2010

I forgot about tears. Both of my eyes hurt something awful if I cried, it was painful, my mother passed away while I was on Oxy, so a lot of physical pain from crying to go with the mental.

Wintwr Marie

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

I've had the same side effects as everyone else and don't have much to add.  One thing that helped is eating with plastic ware for at least the first week during chemo.  The metal fromt he real silverware really hurt my mouth.  Definitely keep gloves by the refrigerator.

annalexandria's picture
annalexandria
Posts: 2320
Joined: Oct 2011

I was told to take glutamine powder, at a daily dosage of 30 mg in three divided doses.  You can buy it at vitamin stores in big jugs.  I mixed it with juice and choked it down...it's kind of sludgy.  But they give it to all their patients where I was treated, so I assume there's some reseach that shows it helps.  I didn't take it as often as I was supposed to, because I really hate sludgy drinks, and did develop some significant neuropathy, but I know other people who were religious about taking it, who had much better results.  Worth asking the doc about it.

Chelsea71
Posts: 1170
Joined: Sep 2012

Thanks for the suggestions, everyone. Will ask Steves onc about all of them. Except the "Wicked Good Slippers". I'm guessing she would approve. Hey Cynthia, I went to the LL Bean website and ordered a pair of slippers - for myself! Aren't I the loving wife? They looked so comfortable and appear to be very good quality.

I read these posts to Steve and they made him feel better. I may have unnecessarily scared him with info. I shouldn't have even mentioned side effects to him. Everyone is different. We've gotten so comfortable with the Folfiri, it's scary moving on to something new. I'm many of you have been there. What's that expression......The devil you know is better than the devil you don't know.....

Thanks guys.

Chels

LivinginNH's picture
LivinginNH
Posts: 1337
Joined: Apr 2010

 

I have a pair too - and I love them.  :)

Chelsea71
Posts: 1170
Joined: Sep 2012

First Folfox was yesterday. Has not noticed any side effects yet. No tingling or cold sensitivity. Possibly due to Ann's drink. So far so good.

Home care delivered another spill kit last night. We've got quite a collection going.

LivinginNH's picture
LivinginNH
Posts: 1337
Joined: Apr 2010

Hi Chelsea,

I'm so glad that he hasn't experienced the cold sensitivity yet - it hit Rick on the very first treatment.  :(

Oh, and you might want to call home care or you'll end up with more supplies than places to store them!  The only thing I used out of the extra kits was the yellow needle can - they fit perfectly under the bathroom sink and I'd use them to store water during a storm (I have a well, so if there's no electricty, there's no water.  Plus I'm a typical Yankee so repurposing things is in my blood!).  ;)

Please give my best to Steve, take care guys,

Hugs to you both.

Cyn

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Cynthia,

Yes, the first one went very smoothly. The only side effect he noticed was the hiccups which we all know is from the 5fu. Maybe the Glutamine powder helped (we call it "Ann's drink").

When we went to the home care office on Sat for disconnection, I brought along 12 boxes of supplies and spill kits. I couldn't help but point out to them that it would save some tax dollars to simply call ahead and inquire about supplies before automatically shipping them. Oh well.

smokeyjoe
Posts: 1428
Joined: Feb 2011

I started on folfox too, switched from Folfiri,  I have the cold sensitivity, it's a good thing it's summer,  if it were winter I don't think I could tolerate this drug.   The cold sensitivity wasn't too bad first infusion,  I had more of a cramping in my arms,  following infusions it got worse.   Nausea was worse,  but this last treatment I got everything seemed to have settled down, except the cold sensitivity, it's lasting days longer and I notice the tingling when I'm grocery shopping.   Had some strawberries and shrimp the other night when we went out for dinner and my fingertips were tingling.      Hope all goes well for him.   Westie who used to post on this site was on folforinox for her gall bladder cancer,  she's also in Ontario,  but she paid out of pocket for this combo. as it was not approve/covered.

annalexandria's picture
annalexandria
Posts: 2320
Joined: Oct 2011

that, technically, in order to be called "Ann's drink", it should include gin.  Vodka is acceptable in a pinch.*

 

*in all seriousness, I really hope it helps!

Chelsea71
Posts: 1170
Joined: Sep 2012

Ha ha. He already asked me if it would still "work" if he mixed it with beer. I told him I'd ask you.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network