Neuropathy

Chelsea71 said:

Also wondering if there are
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

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.

Chelsea71 said:

Also wondering if there are
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

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

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

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!

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.

jen2012 said:

There was something recently
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!

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...

Chelsea71 said:

Thanks for the suggestions,
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

I have a pair too - and I love them. 

herdizziness said:

Jaw pain

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

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.