Cancer Support and Caregivers Who Are Trail Blazers!

[Dominique]

Originally Posted by DapperButch

Yes, but my neuropathy is not horrid. The Neurontin (Gabapentin) is prescribed by my oncologist (600mg twice a day). The L-Glutamine powder (35-40g) and B-6 (100mg, twice per day)
!

Funny how neuropathy affects us all a little differently. B-6 is interesting. It causes a full body flushing effect on me. I like the B vitamins, for more reasons than just neuropathy.

Ice cold water....no thanks. I prefer warm soaks. Cold metal sets it off for me. I have found a supplement called L-Arginine helps alot. The Gabapentin, made me feel like I was being electrocuted. The tip of my big toe is constantly stinging. Movement helps me the most....nothing like a good workout, power walk.

[DapperButch]

Originally Posted by Yellow band

Funny how neuropathy affects us all a little differently. B-6 is interesting. It causes a full body flushing effect on me. I like the B vitamins, for more reasons than just neuropathy.

Ice cold water....no thanks. I prefer warm soaks. Cold metal sets it off for me. I have found a supplement called L-Arginine helps alot. The Gabapentin, made me feel like I was being electrocuted. The tip of my big toe is constantly stinging. Movement helps me the most....nothing like a good workout, power walk.

Hi, Yellow band.

I agree with the warm soak idea. Cold is what I am trying to get away from!

Even in the summer, I had to wear socks at all times because it cut down on the pain/numbness. I couldn't wear sandals and that is usually what I wear every day in the summer. So, on the one hand I needed the socks for the neuropathy in my toes, but I was hot b/c I had on socks. My mother got me these socks (can't remember where they are from...some catalog she got in the mail) that were only for the top half of your foot. Since I tend to not wear shoes in the house, it was really useful. Just thought I would mention that for those in hot climates...

Also, I agree with movement as helping.

I really like that this thread is currently busy. It is nice to talk about these things with others who are also experiencing them.

Have a great day everyone!

[Dominique]

[QUOTE=DapperButch;430953]Hi, Yellow band.

I agree with the warm soak idea. Cold is what I am trying to get away from!

I have a pair of insulated rubber dipped gloves I keep near the refidgerator...reaching into there, or the freezer is pain for the rest of the day. I wear wool socks most of the time. I wear the thorlo's...they come in I, II, and III...and they come in all heights too....for example,in the summer, I wear the ones as they allow for maximum wicking, they sweating of the feet, in our case, if not released 100% will make the neuropathy start.....they come in footies in the I....now i'm into the II...and they are ankle height. Winter thorlo III are mid cafe. I also bought the wool sock liners.....again because of wicking. I wear these light weight gloves indoors. Too bad what they look like. It's either the gloves, or I am at a high level of irritable from the pain. I bought the gloves at REI. They were only $20.00. I'm typing in them now. (It's still cool and raining, and I have tingling hands and feet)...I went to pain management to learn about this, as it has been 5 years and is part of my life. They key to living with it is to try to not set it off. TRUE!

QUOTE]

Thanks folks for talking about this.

[Novelafemme]

the cold foot bath was something we read on the internet and thought it sounded fairly accurate. and it actually helped!

[Dominique]

Originally Posted by CatalinaRose

the cold foot bath was something we read on the internet and thought it sounded fairly accurate. and it actually helped!

Hi CatalinaRose.......

I'm certainly not saying it doesn't work....it doesn't work for me. Cold accelerates neurapoathy for ME! Even if I am pretty warm, i/e like summer time warm...and walk into a/c....that will set it off. Dapper was saying cold sets his off too.

It seems to be different for every one.

[JustJo]

Originally Posted by Yellow band

Hi CatalinaRose.......

I'm certainly not saying it doesn't work....it doesn't work for me. Cold accelerates neurapoathy for ME! Even if I am pretty warm, i/e like summer time warm...and walk into a/c....that will set it off. Dapper was saying cold sets his off too.

It seems to be different for every one.

I have a touch of neuropathy too (as well as periodic foot cramps so strong they'll bend my toes backwards, not fun)...from diabetes...and cold triggers it horribly. Warmth and massage help immensely.

[Dominique]

Originally Posted by JustJo

I have a touch of neuropathy too (as well as periodic foot cramps so strong they'll bend my toes backwards, not fun)...from diabetes...and cold triggers it horribly. Warmth and massage help immensely.

I have neuropathy from frostbite (so we are clear) They did microvascular surgery to seperate the good tissue from the bad. In fact, this is similar to how they treat the advanced diabetic cases. I was in treatment with and in PT with the diabetics. They told me neuropathy can be like fire (the cold water would make sense) it can be stinging and numbness. Sometimes my foot feels like a piece of wood (?) I totally understand why my feet would be subject to neuorpathy, but I don't understand my hands. They were not burn't as baddly as my feet and required no surgery. I buy alot of hand warmers in the summer (for use in the winter)....we are not suppose to use them! I squeeze them outside my gloves, and toss them back and forth between my hands. ~ remember the game, hot potatoe~

My Dr. suggested I wear therma-care heat wraps on my ankles if I am going to be outside. This will call for blood from your heart, and is such a
low dose request, it will not burn us.....it works too. (expensive remedy).

[deb_U_taunt]

Originally Posted by Yellow band

Hi CatalinaRose.......

I'm certainly not saying it doesn't work....it doesn't work for me. Cold accelerates neurapoathy for ME! Even if I am pretty warm, i/e like summer time warm...and walk into a/c....that will set it off. Dapper was saying cold sets his off too.

It seems to be different for every one.

No cold for me either. I get cold and I just ache. Massage and heat for me. I am hoping that the pain gets better soon. I can't stand or walk for long, but it hasn't been long since my last chemo.

[deb_U_taunt]

Tomorrow I start daily radiation for 6 weeks. I keep hearing its not so bad, it just makes ya tired. I am still nervous.

[DapperButch]

Originally Posted by Yellow band

I wear these light weight gloves indoors. Too bad what they look like. It's either the gloves, or I am at a high level of irritable from the pain. I bought the gloves at REI. They were only $20.00. I'm typing in them now. (It's still cool and raining, and I have tingling hands and feet)...I went to pain management to learn about this, as it has been 5 years and is part of my life. They key to living with it is to try to not set it off. TRUE!

QUOTE]

I meant to come back to this post. Yellow band, do you happen to remember the name of the REI gloves? I have a hard time typing in gloves and I am not looking forward to struggling to type at work again this winter.

[Dominique]

Originally Posted by DapperButch

I meant to come back to this post. Yellow band, do you happen to remember the name of the REI gloves? I have a hard time typing in gloves and I am not looking forward to struggling to type at work again this winter.

Hi Dapper, It's raining and the stinging hands woke me up. I'm typing in the gloves now. They are made by polartech, the brandname is manzella, comes in male and female and for typing and in the house I wear the warm. It's the lightest weight. They are very sharp and do not look like you are wearing an isotoner. Its available in a warmer and warmest. I also have the warmest. ($70.00) I bought them a size bigger and slip the hand gloved in the warm right inside the warmest. They are not bulky. Buy them now, my experience is they sell out quickly. Popular gloves.

I hope this helps you. This has saved me!

[Novelafemme]

the hospital just called and moved my surgery up again! now it's at 2pm!

i'm sneaking in a smallish cup of coffee and then taking the kiddos to school.

send good vibes and healing energy this way and i'll see you all soon.

[Novelafemme]

Hi Friends!

Got the path report back today and it isn't good. But....I have faith and am gonna take the bull by the horns and tackle this head on. I'm also gonna take a break from the online world for a while, so if you don't hear from me please feel free to reach me via email: landphair@pharmacy.arizona.edu

so long for now and BE WELL, everyone!!!

[DapperButch]

Originally Posted by Yellow band

Funny how neuropathy affects us all a little differently. B-6 is interesting. It causes a full body flushing effect on me. I like the B vitamins, for more reasons than just neuropathy.

Ice cold water....no thanks. I prefer warm soaks. Cold metal sets it off for me. I have found a supplement called L-Arginine helps alot. The Gabapentin, made me feel like I was being electrocuted. The tip of my big toe is constantly stinging. Movement helps me the most....nothing like a good workout, power walk.

Just a comment on the B Vitamins. I took a B complex to help boost my immune system during chemo. My docs have now told me that FOR ME taking B1, B2 could encourage any present cancer cells to grow, so I had to stop that supplement. I take a multi vitamin that doc manufactures for cancer survivors (which includes Bs) and B6 (and I need to add B12) in addition.

I don't know if the B1 B2 discouragement is based on the type of cancer I had, or what.

[deb_U_taunt]

Originally Posted by DapperButch

Just a comment on the B Vitamins. I took a B complex to help boost my immune system during chemo. My docs have now told me that FOR ME taking B1, B2 could encourage any present cancer cells to grow, so I had to stop that supplement. I take a multi vitamin that doc manufactures for cancer survivors (which includes Bs) and B6 (and I need to add B12) in addition.

I don't know if the B1 B2 discouragement is based on the type of cancer I had, or what.

I was told the same. What is the name of the multivitamin you are taking now? I would like to start taking vitamins again.