Neuropathy and Oxaliplatin Revisited
I do have SAMee but was warned about taking it during chemo.
However, thanks to this site, I know lots of others have gone through this so I'm not alone (although it doesn't appear to be a routine treatment yet in Ontario at least). But why can't they come up with a pill to curb this like they have for nausea?
Cheryl
An added note - the diarrhea is coming back - more white rice and lomitil!
Comments
-
Bummer
Wish you could get away from any symtoms but it's hard not to. Glad that you are taking what you are to minimize symptoms. Always tell your doctor what happens to you when you experience anything. Hope that your poopies get controlled too
Kim0 -
just hang in there
dear cheryl,
sounds bad after number 2, my neuropathy got worse after 12.
be guided by your onc, you are doing so much to help yourself.
the diarrhea for me was the main battle.
at least all these issues gets your mind off crc
hugs,
pete0 -
Cheryl, my neuropathy onlypete43lost_at_sea said:just hang in there
dear cheryl,
sounds bad after number 2, my neuropathy got worse after 12.
be guided by your onc, you are doing so much to help yourself.
the diarrhea for me was the main battle.
at least all these issues gets your mind off crc
hugs,
pete
Cheryl, my neuropathy only got bad towards the end, like maybe treatment 10. My onc is great, he wanted to stop the remaining 2 but I said no. My feet are the worst. its different for everyone I guess. Just make sure you tell them everything and Hang in there
Betty Jo0 -
oxaliplatin/neuropathyBettyJoM said:Cheryl, my neuropathy only
Cheryl, my neuropathy only got bad towards the end, like maybe treatment 10. My onc is great, he wanted to stop the remaining 2 but I said no. My feet are the worst. its different for everyone I guess. Just make sure you tell them everything and Hang in there
Betty Jo
Hi,
Would you mind going into a bit more detail regarding what you mean by "my neuropathy only got bad towards the end"?
My aunt is supposed to start on oxaliplatin as well as two other drugs (not sure when) and I'd just like to have as much knowledge as possible. I do realize that everyone is different but I'd like to know anything that MIGHT happen just so IF it happens to my aunt I can reassure her somewhat.
Thank you
Marianne0 -
This comment has been removed by the ModeratorMarianne313 said:oxaliplatin/neuropathy
Hi,
Would you mind going into a bit more detail regarding what you mean by "my neuropathy only got bad towards the end"?
My aunt is supposed to start on oxaliplatin as well as two other drugs (not sure when) and I'd just like to have as much knowledge as possible. I do realize that everyone is different but I'd like to know anything that MIGHT happen just so IF it happens to my aunt I can reassure her somewhat.
Thank you
Marianne0 -
A rare, but real oxaliplatin side effectMarianne313 said:oxaliplatin/neuropathy
Hi,
Would you mind going into a bit more detail regarding what you mean by "my neuropathy only got bad towards the end"?
My aunt is supposed to start on oxaliplatin as well as two other drugs (not sure when) and I'd just like to have as much knowledge as possible. I do realize that everyone is different but I'd like to know anything that MIGHT happen just so IF it happens to my aunt I can reassure her somewhat.
Thank you
Marianne
is "first bite syndrome" where on the first bite of food, pain shoots through the jaw/cheek. It can last up to a minute, and can be blinding, but then subsides, and subsequent bites of food are fine. It's just when starting to eat after any break (for me, of greater than 15 minutes.)
It's not a common side effect, and so I wasn't warned. However, it was quite startling, and started immediately with the Oxaliplatin drip, day one, for me. You can tell your aunt she might have jaw pain on her first bite of food if you want to warn her, but don't describe it as I have. Hopefully, she'll be like most people, and have no problem, but at least if she does, she'll know she's not going crazy!
Also, more common, if drinking something cold, it may feel like she's swallowing shards of glass, or her throat may feel like its closing. This is more common (hence, I didn't have that side effect, tho cold food/drink was uncomfortable). Keep those foods and drinks at room temp; think about using plastic flatware (metal can feel cold and painful.)
Best wishes to you and your aunt,
Alice0 -
oh my goodnessabrub said:A rare, but real oxaliplatin side effect
is "first bite syndrome" where on the first bite of food, pain shoots through the jaw/cheek. It can last up to a minute, and can be blinding, but then subsides, and subsequent bites of food are fine. It's just when starting to eat after any break (for me, of greater than 15 minutes.)
It's not a common side effect, and so I wasn't warned. However, it was quite startling, and started immediately with the Oxaliplatin drip, day one, for me. You can tell your aunt she might have jaw pain on her first bite of food if you want to warn her, but don't describe it as I have. Hopefully, she'll be like most people, and have no problem, but at least if she does, she'll know she's not going crazy!
Also, more common, if drinking something cold, it may feel like she's swallowing shards of glass, or her throat may feel like its closing. This is more common (hence, I didn't have that side effect, tho cold food/drink was uncomfortable). Keep those foods and drinks at room temp; think about using plastic flatware (metal can feel cold and painful.)
Best wishes to you and your aunt,
Alice
I read this stuff and I cry. I have so much respect for all of you who have gone through this. My heart breaks each time I read a story here, but at the same time I know I am learning what I can reassure my aunt about and I thank God that I found you guys and this site, although heartbreaking, it is also reassuring to me and so so helpful. I just wish I could remember everything so I could/can reassure her when/if this starts with her. The Dr. did tell her that cold stuff would cause much discomfort to her throat. Sad because she always chews on ice guess she will have to break that habit and find a new one to take it's place. (I think the ice chewing is due to the fact that she quit smoking a month before she was diagnosed) Better late than never they say, but I do wonder what possible difference it makes for her now.
Thanks to everyone who responded to my question....after posting this I will take more notes so I have them handy.
Marianne0 -
NeuropathyMarianne313 said:oh my goodness
I read this stuff and I cry. I have so much respect for all of you who have gone through this. My heart breaks each time I read a story here, but at the same time I know I am learning what I can reassure my aunt about and I thank God that I found you guys and this site, although heartbreaking, it is also reassuring to me and so so helpful. I just wish I could remember everything so I could/can reassure her when/if this starts with her. The Dr. did tell her that cold stuff would cause much discomfort to her throat. Sad because she always chews on ice guess she will have to break that habit and find a new one to take it's place. (I think the ice chewing is due to the fact that she quit smoking a month before she was diagnosed) Better late than never they say, but I do wonder what possible difference it makes for her now.
Thanks to everyone who responded to my question....after posting this I will take more notes so I have them handy.
Marianne
HI Alice and all: Yes, Alice, I definitely had that but luckily had read your earlier post (a week or so ago) and knew what it was. I get it every time I start to eat and it is an interesting feeling to say the least but it goes away right away and I can continue eating. As long as one is prepared for that and for the throat closing thing, and you know it isn't really happening, only feels like it, you relax and say, yup, this will pass. Luckily everything I described on my original post has now subsided, just a tiny bit of neuropathy. I am taking my L-Glutamine in powder form (5 g/day) - luckily I bought it right away. The diarrhea is under control now that I have lomotil. But I am scared to go off the "white" foods. I did have a bit of Kraft Dinner yesterday (I'm addicted to it from graduate school days when it was all I could afford!) and it went down OK and didn't set off any reactions. The baby's diaper rash cream is a god-send - use lots!
So all in all a good day today, sunny, warm (not the 100 it was yesterday even up here in Canada), and breezy. The pump comes off tomorrow, the Neulasta shot on Friday. Thanks so much everyone!
Marianne: I think it is good that you will know what COULD happen but might not. So you can be ready for it to help her. She may have none of these things but now you know what to have on hand. The key for me was to relax when my fingers started jumping around and my lips felt like they were falling off my face. Relax, watch some TV, don't think about. You'll be a big help to her.
Cheryl0 -
Marianne - after all of that, I'm doing greatMarianne313 said:oh my goodness
I read this stuff and I cry. I have so much respect for all of you who have gone through this. My heart breaks each time I read a story here, but at the same time I know I am learning what I can reassure my aunt about and I thank God that I found you guys and this site, although heartbreaking, it is also reassuring to me and so so helpful. I just wish I could remember everything so I could/can reassure her when/if this starts with her. The Dr. did tell her that cold stuff would cause much discomfort to her throat. Sad because she always chews on ice guess she will have to break that habit and find a new one to take it's place. (I think the ice chewing is due to the fact that she quit smoking a month before she was diagnosed) Better late than never they say, but I do wonder what possible difference it makes for her now.
Thanks to everyone who responded to my question....after posting this I will take more notes so I have them handy.
Marianne
The follow-up to my tale is that I am now doing extremely well, and have a great prognosis (from Stage 4). Yes, I have some residual neuropathy problems. But for the most part, I live a normal life - walking, bicycling, kayaking, curling (on ice). I can eat anything, and I have no restrictions, so while treatment is extremely difficult, there is another side.
Your aunt is lucky to have you to help her get through all of this.
Take good care,
Alice0 -
X2,,,,...pete43lost_at_sea said:just hang in there
dear cheryl,
sounds bad after number 2, my neuropathy got worse after 12.
be guided by your onc, you are doing so much to help yourself.
the diarrhea for me was the main battle.
at least all these issues gets your mind off crc
hugs,
pete
Never had it this
X2,,,,...
Never had it this bad (numbness) till week or 2 after rd 12. Wondering now if I went back to work to early. Hard to perform some minor tasks.
Will it end? My worse symtom.0 -
Never had it like thisKenny H. said:X2,,,,...
Never had it this
X2,,,,...
Never had it this bad (numbness) till week or 2 after rd 12. Wondering now if I went back to work to early. Hard to perform some minor tasks.
Will it end? My worse symtom.
Hi: Gosh now I'm worried that mine started so early in my treatment (right after cycle 1). Are you taking L-Glutamine? Lots of posts on this on another topic line - people reporting it gone after 3 months, some not even after 5 years. It seems something that needs much more research to me. Now for my L-Glutamine "drink" ...
Cheryl0 -
Much of what others have reported
Like many others I didn't have real problems with neuropathy until my last treatment of oxy. Because I did really well tolerating the bi-weekly oxy and 5fu no one ever said anything. Of course I was also particularly stubborn because I really just tried to pretend that I was doing everything without a problem so my kids wouldn't worry.
It has been about 8 months since my last treatment and six months since the reversal of my illeostomy. For several of those months I was taking Gabapentin which was supposed to help with the neuropathy until a neurology consult said that one of the side effects was swelling of extremities. Since I have started using lyrica the neuropathy symptoms have seemed much better or at least better controlled. I just need to cover my ears when I see the ad on TV.0 -
Glad to hear itmicknh said:Much of what others have reported
Like many others I didn't have real problems with neuropathy until my last treatment of oxy. Because I did really well tolerating the bi-weekly oxy and 5fu no one ever said anything. Of course I was also particularly stubborn because I really just tried to pretend that I was doing everything without a problem so my kids wouldn't worry.
It has been about 8 months since my last treatment and six months since the reversal of my illeostomy. For several of those months I was taking Gabapentin which was supposed to help with the neuropathy until a neurology consult said that one of the side effects was swelling of extremities. Since I have started using lyrica the neuropathy symptoms have seemed much better or at least better controlled. I just need to cover my ears when I see the ad on TV.
Glad to hear that you didn't have it too bad with the side effects. Oxaliplatin can have some very positive results for many with minimal permanent debilitating side effects. At times I had to suck it up too to "protect" the kids. It's mainly a non-issue but that's because I try to keep it that way.
Stay well
-p0 -
Post ColonoscopyPhillieG said:Glad to hear it
Glad to hear that you didn't have it too bad with the side effects. Oxaliplatin can have some very positive results for many with minimal permanent debilitating side effects. At times I had to suck it up too to "protect" the kids. It's mainly a non-issue but that's because I try to keep it that way.
Stay well
-p
I had a colonoscopy this week which was clean. I have had two great days without bathroom issues and only wait for them to start up again0 -
Post colonoscopymicknh said:Post Colonoscopy
I had a colonoscopy this week which was clean. I have had two great days without bathroom issues and only wait for them to start up again
Hi: Great news! You're on your way!
I'll check out the drugs you are taking if this neuropathy gets worse. Why do you have to cover your ears for the commercial? Too loud or the content?!
Cheryl0 -
I am too prone to suggestion. If I heard the side effects I would be sure it was happening to mewestie66 said:Post colonoscopy
Hi: Great news! You're on your way!
I'll check out the drugs you are taking if this neuropathy gets worse. Why do you have to cover your ears for the commercial? Too loud or the content?!
Cheryl0 -
neuropathy help
Hello Westie66,
Just thought I would share some info regarding the neuropathy. I've been on chemo for 6 sessions now and started feeling the neuropathy by the second treatment. My Oncologist suggested trying a supplement that has helped quite a bit (i'm on the oxiplaten)thought perhaps you may not have tried this yet. It's called Alpha-Lipoic Acid & I take 600 mg a day. Within a couple of weeks of taking this I noticed a big difference in the finger tingles & the throat sensation really went down as well. Hope this may be of some help to you.
D0 -
What you are describing is not "normal"
What you are describing isn't just neuropathy. It sounds to me like you might have the rare syndrome that I had from oxaliplatin. It causes all sorts of troubles - including with your eyes and face, throat and neck. Those with this syndrome often have allergic reactions to oxaliplatin (I did). Be very aware of this for your next infusion, and if you don't have someone with you, make the chemo nurses keep a close eye on you. I am not saying this to scare you, but to let you know that what you are describing can be very serious. Watch for hives or redness in chest or face, or any swelling of lips, tongue, or throat. If you start to feel "off" tell the nurses right away. If your face freezes in weird positions, your heart starts pounding hard, your head feels like it is going to explode - any of those things - speak up immediately.
INSIST they slow down your infusion time to 4-6 hours. If you are getting it in 2 hours, your body just can't handle that rate, if you are having the problems with your face and eyes. Mine had to be slowed to 6 hours - I couldn't handle it any faster than that.
Standard peripheral neuropathy that you get in your feet and hands from oxaliplatin is different than what you are describing. Once you start getting it in your feet you will see the difference. I know I shouldn't say "once you start getting it" because everyone is different, but reading what you've written so far, I think it is very probable that you will get it. It does take a while for the chemo to start damaging the nerves, so it is rare to have neuropathy issues until after a few treatments. Often neuropathy continues to get worse after stopping oxaliplatin, before it then starts to get better.
The throat thing when drinking is something "normal" that happens to most patients on oxaliplatin. Some are more sensitive than others. For some they just can't have anything very cold. For others, even room temperature can be too cold.0 -
hi cheryl
glad you kept this neuropathy theme going.
i just wanted to share some good news that my fingers and feet are noticably better.
its such a relief.
not sure whats helped, but i will stay on my diet, juicing, tea and supplements.
i hope yours improves aqs well.
hugs,
pete0 -
Who knows
I have just come from my rheumatologist. There is a conflict with the nephrologist. My joints are an absolute mess, everything from hands to toes have swollen and inflamed joints. My nephrologist needs me to do a 24 hr urine collection to monitor my protein loss. If it has risen he wants to do another kidney biopsy. He thinks I may have some sort of vasculitis. Trouble is my rheumy wants me to start Imuran for my psoriatic arthritis. The problem being that Imuran is also used to treat renal vasculitis. If I start the drug it may stuff things up for the neph. So I remain in pain and limbo. Imuran is a front line transplant drug to stop rejection. I told my rheum that the immuno-suppressants have cost me several teeth already and also that a spot had come up on my face in the last few months. He took one look and said it has to come of asap. I'm sick of all of it. Ron.0
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