neuropathy

Kathleen808 · May 2009

Hi Everyone,
I've been reading on some other posts about Neuropathy and am hoping to get more input. **** will have Folfox treatment #5 tomorrow and he is still tingling from #4 two weeks ago. I am the one who has read about all the side effects and I don't mention them to him until he brings them up (he read the pamphlets but that's all). Bit, by bit he has mentioned the sensitivity to cold, the tingling in feet and hands, and also some up his arm. He is still running about 5 times between treatments and still going to the gym but, the nerve damage has both of us very, very concerned.
He gets Calcium and Magnesium before and after every treatment. He is also taking B6 (per Dr. Lenz). My question is can a person be on the other nerve helpers while still on chemo? We're interested in B12 injections, Nuerontin and Lyrica. What else is out there to help with neuropathy while still on chemo.
There is also the chemo-brain issue that is a concern since we know that nerve damage in the brain is brain damage. He brought up the forgetting yeterday (he left the front door wide open the other day when he left the house) and that is when I told him about chemobrain. He has 8 more treatments to go and we are both concerned that these issues will get very bad during the next 4 months.
What do you all say?
Thanks a million for the hundredth time. You are wonderful!
Aloha,
Kathleen

lisa42 · May 2009

neuropathy
Hi Kathleen,

That's amazing and great that **** is still running and going to the gym. About all I could do while on Folfox was muster an occasional walk around the block & then very slowly. Sounds like he's really doing great, overall. Obviously, the chemobrain and neuropathy are a concern. I, unfortunately, can't tell you about treating the neuropathy while still on chemo because I didn't start to do anything about it or even tell my oncologist until I was close to done with it all. After the fact, the B-6, B-12, and L-glutamine seemed to really help me. Today, my hands are 100% back to normal! (and they were really bad- dropping things, couldn't hold a pen & definitely couldn't write- signing a check was really hard.) My feet are still tingly on the bottoms and inbetween my toes, but I really don't notice it that much anymore. You want to treat **** before he gets too bad though, of course, since you know about treating it (wish I had known before or I wouldn't have waited so long to mention it to my Dr/nurses). I didn't come on this site until after then, or I would have been more informed.

I can't see why taking B-12 would be harmful to **** while taking chemo. I don't know if Lyrica can be taken while on chemo or not- you'd have to ask the Drs. about that. One word of warning on the Lyrica though (and this is just as reported from one person I know- it may be different for others)... my friend took Lyrica and then stopped it- she felt the "foggy head" it caused was worse than what was caused by the chemo. She was taking Lyrica after finishing chemo & was still dealing with chemo brain & felt the Lyrica made it worse & so she stopped it. According to what she told me her doctor said, Lyrica is good for treating neuropathy induced pain, but does not relieve the pins and needles feeling (now I don't know that for a fact- it's just what my friend told me- but it may be good to ask a Dr. about this issue). My friend did start on something else instead after stopping the Lyrica, but I'm sorry that I don't know what that one was called.

So far as the chemo brain, it's quite real, as you know. I never thought of chemo brain possibly being "neuropathy of the brain", as I think that's what you were saying. Interesting & it does make sense. In that sense, it makes me wonder if drugs to treat/help neuropathy elsewhere in the body (hands and feet and wherever else)- I wonder if it could also help with the chemobrain (brain neuropathy??) Anyone have any thoughts or ideas on that?

Take care Kathleen & know I admire you for being such a great support to **** and being a person who will research and keep informed for him.

Blessings,
Lisa

Faith88 · May 2009

benfotiamine for neuropathy
My hubby has had severe neuropathy for going on 2 years and was on neurontin for over a year for it. At first it helped some but then he said it mainly helped him to forget about the pain, but the pain was still there. anyway, long story short he developed liver damage and had an ultra sound in February of this year which showed an enlarged fatty liver (NASH it is called). He doesn't drink alcohol, and his oncologist advised to lose weight and see if that helped. Nothing else to do he said. Well, we both went on a very healthy eating plan and he lost 25 lbs and is eating mostly vegetarian and weaned himself off the neurontin. Last week he went for his blood work and liver check up and guess what, it was completely normal! That was such good news! I know I'm getting side tracked, but what I am wanting to share really, is his neuropathy is still bad, and since he doesn't want to go on the neurontin (which even his doc said can damage the liver), he told him to try this natural supplement called Benfotiamine. You can get it online and read the info on it. We've ordered it from Amazon and will be trying it to see if it helps. Sometimes you have to pick your poisons, and he's not sorry he did the chemo or the oxyliplatin, cuz better nerve damage than a short life span. That is just my 2 cents, and I wanted to share.
I hope that helps!
Best wishes --keep the faith,
Faith88

PamPam2 · May 2009

Chemo Brain
Hi Kathleen and ****. It has been about 4 years since I quit chemo. Had some of the neuropathy in hands and feet, and the "chemo brain". Now, I have very little residual effects, though I never had it bad enough to take anything for it when on chemo. I think my brain is OK (matter of opinion,ha ha) but I am 50 and going back to college and doing very well, so I don't think it did anything permanent. Just a note of encouragement to try and help you worry a little less.
Pam

nudgie · May 2009

FLOFOX Treatment
I was on the FLOFOX Treatment in 2006 and due to the side effects of the Oxy, my Onc felt the treatment could be reduced by 20% which was industry standard and did help somewhat with the Neuropathy. When my treatments were finished, the Neuropathy began to go away. The Neyrioathy I had was in my feed, hands, arms, first bite issues and my wrists would lock-up when typing. Again, I worked in an open office environment next to a set of windows and was taking this during the winter months, so the wrist issue could have been from the cold weather and the oxy combination.

Keep in mind that each individual is different due to that person's DNA so the drugs side effects will react differently on each person.

As far as the chemo brain, this also depends on your age (ha, ha). I was DX at 42 and now will be turning 45 soon, so I was already at the forgettable stage, but there have been some studies on the effects chemo has on the brain. Again, this went away once my treatments were finished.

In my case, I was lucky to return to my normal way of life without any "major" side effects from chemo.

Kathleen808 · May 2009

B6 and B12
Thanks for your replies. The oncologist had already given the Ok to the 300mg of B6 a day. Yesterday she She OK'd 1000 mcg (?) of B12 a day. **** is taking the tab that dissolves under the tongue as it is better absorbed that the ill form that you swallow. **** is hooked up right now so I'll let you know how #5 goes. He decided not to do the Emend this time as he still had the mild nausea that he always had even though he took the Emend during #4.
The oncologist did say the other two meds (Lyrica and neur....) were for neuropathy pain which **** is not having.
Aloha,
Kathleen

daydreamer110761 · May 2009

Kathleen808 said:
B6 and B12
Thanks for your replies. The oncologist had already given the Ok to the 300mg of B6 a day. Yesterday she She OK'd 1000 mcg (?) of B12 a day. **** is taking the tab that dissolves under the tongue as it is better absorbed that the ill form that you swallow. **** is hooked up right now so I'll let you know how #5 goes. He decided not to do the Emend this time as he still had the mild nausea that he always had even though he took the Emend during #4.
The oncologist did say the other two meds (Lyrica and neur....) were for neuropathy pain which **** is not having.
Aloha,
Kathleen

worth a try
Alpha Lipoic Acid, 600mg per day. Had to write that before I forgot it! No, really - I am on #12 today, done Thursday. But I also noticed around #4 or 5 that it was taking longer for the hands and feet to get back to normal, and at #6 it lasted all the way through. The doc suggested that, I found it at GNC, and to a degree it helps, it hasn't lasted as long nor is it as bad. As a matter of fact, I am drinking cold things through this one (hands can't touch but I can drink!).

Tell **** not to feel so bad about the chemo brain - I left the front door and sliding glass doors open all night last week and it got cold here in Woodbury! I have also left the oven on, forgot where I was going, who I was calling, why I was in the store, and what I was saying. I also notice that when I go in for treatment on Tuesday, I am relatively ok at first, about an hour into the oxy is when I get fuzzy and now we just laugh at it.

One of the nurses asked me today if when I am done if I am going to write a memoir - I told her i really don't remember alot - lol! She suggested calling it - How to get through FOLFOX with a great sense of humor!

I have to admit that I have been concentrating on my kids' problems so much that I mostly forgot about mine - I think that helped! Just tell **** it will all be over with before he knows it. we're all different, but keep the faith!

Sherrie - in STILL COLD MINNESOTA!

Kathleen808 · May 2009

daydreamer110761 said:
worth a try
Alpha Lipoic Acid, 600mg per day. Had to write that before I forgot it! No, really - I am on #12 today, done Thursday. But I also noticed around #4 or 5 that it was taking longer for the hands and feet to get back to normal, and at #6 it lasted all the way through. The doc suggested that, I found it at GNC, and to a degree it helps, it hasn't lasted as long nor is it as bad. As a matter of fact, I am drinking cold things through this one (hands can't touch but I can drink!).

Tell **** not to feel so bad about the chemo brain - I left the front door and sliding glass doors open all night last week and it got cold here in Woodbury! I have also left the oven on, forgot where I was going, who I was calling, why I was in the store, and what I was saying. I also notice that when I go in for treatment on Tuesday, I am relatively ok at first, about an hour into the oxy is when I get fuzzy and now we just laugh at it.

One of the nurses asked me today if when I am done if I am going to write a memoir - I told her i really don't remember alot - lol! She suggested calling it - How to get through FOLFOX with a great sense of humor!

I have to admit that I have been concentrating on my kids' problems so much that I mostly forgot about mine - I think that helped! Just tell **** it will all be over with before he knows it. we're all different, but keep the faith!

Sherrie - in STILL COLD MINNESOTA!

thanks
Hi Sherrie,
Thanks for all the good scoop. We know that Alpha Lipoic Acid is a good antioxidant so we know it must be good for the nerves (getting the bad oxi out of the nerves). ****'s doc told him it was part of a current study and that if **** wanted to take it he should take the dose that they are using in the study (we haven't checked yet). That is great news that it has helped you.
In regard to the Minnesota cold, I remember some Memorial Day picnics in MN when we were all in parkas. Don't worry that won't happen this year. Just keep chanting, "Summer, summer, summer."

Aloha,
Kathleen

maglets · May 2009

glutamine
Hi Kath and ****....there is one other supplement that my onc likes and that is glutamine...just get it at the pharmacy....supposed to help with the neuropathy.

Sherrie i got a good laugh at your post. I do the same thing ...get all duded up ready for my oxy infusion, looking good:) and after about an hour into the infusion I'm curled up under a flannel sheet, covered in fluff, can barely remember my own name!!!! Then there's always the stumble to the washroom wound up in cords from the iv pole....I'm good at that one too

**** I am finding the same with cold drinks....can't touch the glass but i can drink cold towards the end of the cylce. On the first nights I keep a thermos of warm water beside the bed but maybe with our room temps of 50 degrees you won't have to do this.

all best love and luck
mags

daydreamer110761 · May 2009

maglets said:
glutamine
Hi Kath and ****....there is one other supplement that my onc likes and that is glutamine...just get it at the pharmacy....supposed to help with the neuropathy.

Sherrie i got a good laugh at your post. I do the same thing ...get all duded up ready for my oxy infusion, looking good:) and after about an hour into the infusion I'm curled up under a flannel sheet, covered in fluff, can barely remember my own name!!!! Then there's always the stumble to the washroom wound up in cords from the iv pole....I'm good at that one too

**** I am finding the same with cold drinks....can't touch the glass but i can drink cold towards the end of the cylce. On the first nights I keep a thermos of warm water beside the bed but maybe with our room temps of 50 degrees you won't have to do this.

all best love and luck
mags

mags
about an hour into my infusion I am stripping things off - I get sweaty and hot. I also will not stumble to the washroom, and they tease me about this - i go befgore they hook me up and am about dying at the end of 2-3 hours, but she is used to me and unhooks me and stands back. After 10 days in the hospital running with the pole, i hate being tangled in that thing! I just try not to drink more than one cup of coffee that morning!

neuropathy

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