neurapathy??- jaw, neck
Also, i started neulasta, but i think this numbness started before that. This is the only issue i have with folfox... was going actually pretty well...but now this. Thanks all. You are all very kind for giving your input.
Comments
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hi janie
sorry to hear about your folfox side effects which were different to mine. i tried a few naturopaths who specialise in colorectal cancer and had good results.
pete0 -
Hi Janie!
The Jaw and neck
Hi Janie!
The Jaw and neck stiffness is not uncommon, but it went away quickly. My jaw would pop at the end of chemo.
If your pain gets bad or you lose feeling in hands, feet, lips, etc... this is a sign to lower the dose of chemo. You need to tell the Onc right away. If you get really stiff a muscle relaxant works well. When my pain and/or stiffness was really bad, one Darvocet and a glass of wine would put me at ease. (I do not advocate that, it just worked for me.)
Glucosamine did nothing for me. Drinking more fluids helped flush out my system. The nausea and headache was just there all the time for me. It was kind of like a new normal. It was not really horrible for me but irritating. At times I just could not sleep and would stay awake until the nausea and headache went away.
I would not feel like eating but the smell of food made me feel good. I ended up baking a lot to have the smells around. I actually got good at baking from scratch. I got "Ove Gloves" from Target. They are kevlar gloves that allowed me to get cold stuff out of the fridge and freezer, and hot stuff out of the oven.
Best Always, mike0 -
How long are your infusions?
If you are getting the oxaliplatin in less than 4 hours, ask them to lengthen your infustion time. Many of these other issues go away or lessen if infusion time is spread out to 4-6 hours. A lot of patients cannot tolerate the 2 hour infusion time. I could not - I needed to spread it out over the full 6 hours (for the oxaliplatin - so that means many hours when you also add in the pre-meds).
If you are having these issues at the 3rd tx, you really need to start tweaking it now to avoid a whole set of potential problems. There is a full syndrome that goes along with facial or neck numbness or jerking (I had it). Be firm with your oncologist - tell him you want your infusion slowed down!0 -
Oxaliplatin and 5 FUKathryn_in_MN said:How long are your infusions?
If you are getting the oxaliplatin in less than 4 hours, ask them to lengthen your infustion time. Many of these other issues go away or lessen if infusion time is spread out to 4-6 hours. A lot of patients cannot tolerate the 2 hour infusion time. I could not - I needed to spread it out over the full 6 hours (for the oxaliplatin - so that means many hours when you also add in the pre-meds).
If you are having these issues at the 3rd tx, you really need to start tweaking it now to avoid a whole set of potential problems. There is a full syndrome that goes along with facial or neck numbness or jerking (I had it). Be firm with your oncologist - tell him you want your infusion slowed down!
HI all: I'm getting scared now! I start the full-blown oxaliplatin/irenatecan/5FU on Tuesday. My oncologist warned me about the intolerance to hot and cold around the mouth and throat - said that would only last 3 days after each treatment and then would be gone. He said nothing about the peripheral neuropathy, but that seems to be a major major side effect on this discussion board. So, a question: does the sensitivity to hot and cold only last a few days after treatment or was he being unrealistic? Oh, another question: does the peripheral neuropathy last the whole time or go away a few days after treatment? I live alone, have a dog, and need to walk a lot.
I'm also trying to think what to eat during the no hot-cold days other than lots of room temperature water, juice, and ensure. Any ideas for me?
Thanks!
Cheryl0 -
If you taking barf pills
If you taking barf pills that might be it. I had the same problem with my comazine (sp)0 -
I'm on my 3rd treatment
I'm on my 3rd treatment coming up of Folfox w/Avastin. I also have the problems with Oxalyplatin. My lips are numb, I can't drink anything cold/or with ice, when I do and I swallow it feels like I'm swallowing broken glass. I also am having problems with certain foods I eat that feel like they are burning my throat as I swallow. My fingers tingle and are sensitive when I even go into the cold section of the grocery store. Still can't pick up anything cold out of the refrigerator/freezer without it hurting. I spoke to my Onc's asst about it the other day and she said they will probably have to reduce the dose. I had my last treatment on 5/6 and I am still having the problems today; that's 7 days into it. Good luck!
Pam0 -
I was able to eat anythingwestie66 said:Oxaliplatin and 5 FU
HI all: I'm getting scared now! I start the full-blown oxaliplatin/irenatecan/5FU on Tuesday. My oncologist warned me about the intolerance to hot and cold around the mouth and throat - said that would only last 3 days after each treatment and then would be gone. He said nothing about the peripheral neuropathy, but that seems to be a major major side effect on this discussion board. So, a question: does the sensitivity to hot and cold only last a few days after treatment or was he being unrealistic? Oh, another question: does the peripheral neuropathy last the whole time or go away a few days after treatment? I live alone, have a dog, and need to walk a lot.
I'm also trying to think what to eat during the no hot-cold days other than lots of room temperature water, juice, and ensure. Any ideas for me?
Thanks!
Cheryl
as long as it wasn't extreme in temperature or had any heat from spices. Even standard black pepper made food too spicy for me.
I used plastic flatware or wooden chopsticks, and at the same as the rest of my family.
As for the neuropathy: start your B6 - I've heard as much as 100 mg 3x/day. Also, grease your feet and hands regularly with Udderly Smooth or Bag Balm - try not to let them get ahead of you. Well-padded shoes are a must.
On another note, start rinsing your mouth out several times a day with salt/baking soda solution. I kept a jar of equal parts salt and baking soda by my sink, and threw a heaping teaspoon into a cup of warmish water whenever I walked into the bathroom and rinsed my mouth. Do it daily, including non-chemo days. Again, it's best to get ahead of the mouth sores, and I had very few problems with them following that regimen.
Chemo's no fun, but work on catching everything before it happens.
Alice0 -
Neuropathy etc with Oxaliplatinpscott1 said:I'm on my 3rd treatment
I'm on my 3rd treatment coming up of Folfox w/Avastin. I also have the problems with Oxalyplatin. My lips are numb, I can't drink anything cold/or with ice, when I do and I swallow it feels like I'm swallowing broken glass. I also am having problems with certain foods I eat that feel like they are burning my throat as I swallow. My fingers tingle and are sensitive when I even go into the cold section of the grocery store. Still can't pick up anything cold out of the refrigerator/freezer without it hurting. I spoke to my Onc's asst about it the other day and she said they will probably have to reduce the dose. I had my last treatment on 5/6 and I am still having the problems today; that's 7 days into it. Good luck!
Pam
Thanks Pam and Alice for the suggestions. Things they never tell you at the cancer centre! (Perhaps they don't want to worry you ahead of time but one needs to know to prepare.) I'll keep gloves and a scarf by the fridge, a Britta full of room temperature water on the counter, juice on the counter, get some plastic utensils, keep a jar of baking soda/salt in the bathroom, keep the udder butter beside the bed, and take Vit B6 several times a day. In Ontario, they will give you a cal/mag infusion if you get neuropathy. I'm also going to try L-glutamine and alpha lino-whatever acid. Not the SAMe until after treatments are over. I am very worried about not being able to walk - my shoes are padded because I wear heavy duty orthotics - and drive.
I'll keep you posted.
Cheryl0 -
hi mikethxmiker said:Hi Janie!
The Jaw and neck
Hi Janie!
The Jaw and neck stiffness is not uncommon, but it went away quickly. My jaw would pop at the end of chemo.
If your pain gets bad or you lose feeling in hands, feet, lips, etc... this is a sign to lower the dose of chemo. You need to tell the Onc right away. If you get really stiff a muscle relaxant works well. When my pain and/or stiffness was really bad, one Darvocet and a glass of wine would put me at ease. (I do not advocate that, it just worked for me.)
Glucosamine did nothing for me. Drinking more fluids helped flush out my system. The nausea and headache was just there all the time for me. It was kind of like a new normal. It was not really horrible for me but irritating. At times I just could not sleep and would stay awake until the nausea and headache went away.
I would not feel like eating but the smell of food made me feel good. I ended up baking a lot to have the smells around. I actually got good at baking from scratch. I got "Ove Gloves" from Target. They are kevlar gloves that allowed me to get cold stuff out of the fridge and freezer, and hot stuff out of the oven.
Best Always, mike
the oven mit is the perfect present for someone with colorectal getting folfox0 -
hi janie, cheryl and pam
it seems like you three and possible a few lurkers are starting your folfox treatments.
i would encourage you to post at least every cycle so that others to see what your experiencing and offer helpful suggestions. it seems some onc forgot ? failed to mention what the folfox experience is all about.
now it is supposed to be effective , well i trusted my onc and then decided to do my best to get througth it. having other people , even if internationally going through the same thing at the same time all over the earth was somehow reassuring. i was not alone through my folfox experience and you guys don't have to be, unless thats how you prefer it.
just look up folfox or folfox express. we used to describe as a train ride.
also just whatchout for any emotional issues as a result of the dexamthasone as well which is often prescribed with folfox.
best of health and I hope your folfox is effective,
pete0 -
Thanks everyone for yourpete43lost_at_sea said:hi janie, cheryl and pam
it seems like you three and possible a few lurkers are starting your folfox treatments.
i would encourage you to post at least every cycle so that others to see what your experiencing and offer helpful suggestions. it seems some onc forgot ? failed to mention what the folfox experience is all about.
now it is supposed to be effective , well i trusted my onc and then decided to do my best to get througth it. having other people , even if internationally going through the same thing at the same time all over the earth was somehow reassuring. i was not alone through my folfox experience and you guys don't have to be, unless thats how you prefer it.
just look up folfox or folfox express. we used to describe as a train ride.
also just whatchout for any emotional issues as a result of the dexamthasone as well which is often prescribed with folfox.
best of health and I hope your folfox is effective,
pete
Thanks everyone for your input. Cheryl, don't worry. I was/am just having something strange with my neck and jaw...not the typical cold sensitivity with hands and feet, which for me is not bad at all. I still like to walk a lot. Kathryn, I may have another question about infusion time, but I'll ask you after your busy weekend. Enjoy the weekend.
The B6 recommendation....i was taking 5mg. with a multivitamin, and that is supposedly, 250% of daily recommended value. Taking 100mg. 3 x day? Does that sound about right to any of you? I know very little about that. Just sounds like a lot. I just put warm compresses of Epsom Salt on my neck to see if that would "untighten" it.... no luck with that either. I hope this is irreversible.0 -
Neuropathy long term
I had 5FU/Oxyil. as well, 12 treatments, one every 2 weeks. The neuropathy started lasting longer and longer between treatments until finally it just didnt' go away. My last chemo treatment was the first week of November, 2010 and as I sit here today typing this I STILL have mild issues with neuropathy.
It has gotten gradually better and better, and there MAY come a time when it's all gone, but my Oncologist tells me that usually the side effects should go away completely within a 6 month time frame. If they don't, then it's very likely they just won't go away. This month is my 6 month point since the last treatment, so it looks like this is just something I'll have to learn to live with.... but the operative term there is LIVE with
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Oxaliplatin/Irenotecan/5FUAncientTiger said:Neuropathy long term
I had 5FU/Oxyil. as well, 12 treatments, one every 2 weeks. The neuropathy started lasting longer and longer between treatments until finally it just didnt' go away. My last chemo treatment was the first week of November, 2010 and as I sit here today typing this I STILL have mild issues with neuropathy.
It has gotten gradually better and better, and there MAY come a time when it's all gone, but my Oncologist tells me that usually the side effects should go away completely within a 6 month time frame. If they don't, then it's very likely they just won't go away. This month is my 6 month point since the last treatment, so it looks like this is just something I'll have to learn to live with.... but the operative term there is LIVE with
Thanks Janie, Pam, Alice, Pete, and Ancient Tiger. Still sounds scary to me but I know I can get lots of information on this discussion board. You're right, Pete, it is comforting to know that others are going through it at the same time, or have gone through it, and you're not suffering through it alone. And you're right Ancient Tiger - the operative word is LIVE. And Janie, there is hope if it is not a terrible problem for you. Not a lot of people in Canada have this treatment because of the great cost of the oxaliplatin (I'll be paying over $15,000 just for it - the others are covered) - it wasn't approved in Ontario until 2009 or so and isn't covered by Cancer Care Ontario or most private plans. And it is a test treatment for me as gallbladder cancer is so rare - the usual treatment is cisplatin/gemiticibine which works sometimes but not if cancer has moved to the peritoneum. I didn't have any problems with that combination. It is interesting that the ovarian cancer women that get peritoneum cancer as well have taxol/carbo... as their chemotherapy treatment. Doesn't get rid of it but keeps it at bay.
For sure I'll post frequently as I'm scared to say the least and this helps a lot.
Cheryl0 -
Cant wait for mine to gowestie66 said:Oxaliplatin/Irenotecan/5FU
Thanks Janie, Pam, Alice, Pete, and Ancient Tiger. Still sounds scary to me but I know I can get lots of information on this discussion board. You're right, Pete, it is comforting to know that others are going through it at the same time, or have gone through it, and you're not suffering through it alone. And you're right Ancient Tiger - the operative word is LIVE. And Janie, there is hope if it is not a terrible problem for you. Not a lot of people in Canada have this treatment because of the great cost of the oxaliplatin (I'll be paying over $15,000 just for it - the others are covered) - it wasn't approved in Ontario until 2009 or so and isn't covered by Cancer Care Ontario or most private plans. And it is a test treatment for me as gallbladder cancer is so rare - the usual treatment is cisplatin/gemiticibine which works sometimes but not if cancer has moved to the peritoneum. I didn't have any problems with that combination. It is interesting that the ovarian cancer women that get peritoneum cancer as well have taxol/carbo... as their chemotherapy treatment. Doesn't get rid of it but keeps it at bay.
For sure I'll post frequently as I'm scared to say the least and this helps a lot.
Cheryl
Cant wait for mine to go away. Had last(12th) treatment on Apr 5th. Fingers and feet numb bigtime. Can hardly button a shirt, tie shoes ect. Drop things all the time.0 -
Cant wait for mine to gowestie66 said:Oxaliplatin/Irenotecan/5FU
Thanks Janie, Pam, Alice, Pete, and Ancient Tiger. Still sounds scary to me but I know I can get lots of information on this discussion board. You're right, Pete, it is comforting to know that others are going through it at the same time, or have gone through it, and you're not suffering through it alone. And you're right Ancient Tiger - the operative word is LIVE. And Janie, there is hope if it is not a terrible problem for you. Not a lot of people in Canada have this treatment because of the great cost of the oxaliplatin (I'll be paying over $15,000 just for it - the others are covered) - it wasn't approved in Ontario until 2009 or so and isn't covered by Cancer Care Ontario or most private plans. And it is a test treatment for me as gallbladder cancer is so rare - the usual treatment is cisplatin/gemiticibine which works sometimes but not if cancer has moved to the peritoneum. I didn't have any problems with that combination. It is interesting that the ovarian cancer women that get peritoneum cancer as well have taxol/carbo... as their chemotherapy treatment. Doesn't get rid of it but keeps it at bay.
For sure I'll post frequently as I'm scared to say the least and this helps a lot.
Cheryl
Cant wait for mine to go away. Had last(12th) treatment on Apr 5th. Fingers and feet numb bigtime. Can hardly button a shirt, tie shoes ect. Drop things all the time.0 -
Numb hands and feetKenny H. said:Cant wait for mine to go
Cant wait for mine to go away. Had last(12th) treatment on Apr 5th. Fingers and feet numb bigtime. Can hardly button a shirt, tie shoes ect. Drop things all the time.
I too finished my 12th Folfox treatment April 7. I was hoping this would get better. I live in Northern Minnesota and am hoping when Spring finally arrives and it is warmer outside I can start back walking outside and have these side effects leave.
I did share my concern with the onocologist and the test was to pick up a penny. If you can pick up a coin you are doing OK is what I was told.
Good Luck
NB0 -
Numb hands and feetrelaxoutdoors08 said:Numb hands and feet
I too finished my 12th Folfox treatment April 7. I was hoping this would get better. I live in Northern Minnesota and am hoping when Spring finally arrives and it is warmer outside I can start back walking outside and have these side effects leave.
I did share my concern with the onocologist and the test was to pick up a penny. If you can pick up a coin you are doing OK is what I was told.
Good Luck
NB
Hi Kenny andn NB (and others): I saw my oncologist today and voiced my concerns re the neuropathy. He wasn't too much help - either it will happen to me or it won't! He did say he has had more patients who didn't get it or didn't have too much problem with it than who did have a problem (e.g. a dentist who had to give up his profession for obvious reasons). Treatment starts tomorrow - I'll keep you posted (if I can type!). I'm getting my kitchen ready just in case.
Cheryl0 -
Most of my problem are in mywestie66 said:Numb hands and feet
Hi Kenny andn NB (and others): I saw my oncologist today and voiced my concerns re the neuropathy. He wasn't too much help - either it will happen to me or it won't! He did say he has had more patients who didn't get it or didn't have too much problem with it than who did have a problem (e.g. a dentist who had to give up his profession for obvious reasons). Treatment starts tomorrow - I'll keep you posted (if I can type!). I'm getting my kitchen ready just in case.
Cheryl
Most of my problem are in my legs. My last chemo treatment was Dec 29th 2009 and my hips and legs hurt sooooo bad. They say it probly wont go away and will be the same for ever. sometime I walk like a 80 year old man but I'm alive. what a trade off!!
Brooks0 -
My onc at Memorial Sloan Kettering told me 50 mg 3x/day. My onc at Albany Medical Center told me 100 mg 3x/day (or maybe it was the other way around, I don't remember which one told me what.) My Primary Care leans toward the 50 3x/day.janie1 said:Thanks everyone for your
Thanks everyone for your input. Cheryl, don't worry. I was/am just having something strange with my neck and jaw...not the typical cold sensitivity with hands and feet, which for me is not bad at all. I still like to walk a lot. Kathryn, I may have another question about infusion time, but I'll ask you after your busy weekend. Enjoy the weekend.
The B6 recommendation....i was taking 5mg. with a multivitamin, and that is supposedly, 250% of daily recommended value. Taking 100mg. 3 x day? Does that sound about right to any of you? I know very little about that. Just sounds like a lot. I just put warm compresses of Epsom Salt on my neck to see if that would "untighten" it.... no luck with that either. I hope this is irreversible.
Yes, it's lots more than the RDA, but we're trying to get the neuro effects. (40 years ago, they were recommending 500-1000 mg/day for PMS, but they found that a dose that high could cause neurological problems. I took that for a while with no problems, and it did help my PMS! I stopped when it became cause for concern.)0 -
First Oxaliplatin/irenotecan/5FU Cycle Todayjust4Brooks said:Most of my problem are in my
Most of my problem are in my legs. My last chemo treatment was Dec 29th 2009 and my hips and legs hurt sooooo bad. They say it probly wont go away and will be the same for ever. sometime I walk like a 80 year old man but I'm alive. what a trade off!!
Brooks
Hi: It was a long day, lots of chemicals, pills, injections. I started a new post on it. Gosh, still joint pain after all this time. I already have bad arthritis and this feels the same. But I controlled the arthritis with pills. They don't seem to be working today!
To bed, it was a long sleepless night.
Cheryl0
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