Re: Joe vs Neuropathy , Neuropathy is winning :(

[Guest guest]

Donnelle:

I was told that Motrin is OK.

[Guest guest]

It is so depressing that the neuopathy is lasting that long. But

again it is getting a little better for your husband. I am sorry that

he is going through so much of the numbness and tingles. Just going

to take time for him. I am hoping he gets some relief soon. Ingrid

> My husband had neuropathy in his feet and legs before chemo and was

under the care of a Neurologist. He tried him on the Neurotin and it

did nothing for it (even the oncologists said he had never seen any

favorable results from it). The Neurologist then recommended he take

ALA (Alpha Lipoic Acid) as he had had several patients with good

results. Up until the end of chemo (05/04) my husband was okay.

After treatments were over, he got neuropathy in his feet and hands,

but is now back on the ALA as he couldn't take it consistently while

on chemo because he said it made him sick. He didn't take the B-

complex that the onc. recommended either for the same reason.

>

> He still has the tingling in his hands, but about every other day

he says it is getting better. The other days he says no it is

not It is some better because I am not having to button the top

button on his shirt anymore (he couldn't see that one).

>

> MA

> Joe vs Neuropathy , Neuropathy is

winning

>

>

> Well , Joe has been done with chemo for going on 8weeks monday

and his Neuropathy is getting worse!

> Called the oncologist and they had upped his Neurontin from 100mg

x1 a day , to 100mg x3 a day. Still NO relief.

> Well called them again , they upped the dosage to 200mg x3 a day :

(

> And they are recommending him to a neurologist ( which he is

balking at going )

> His neuropathy is in his hands/feet/ankles/ and he gets this

electric shooting vibes from top of neck down his whole body (like

getting zapped ) several times a day

> All of this is making him GGGG RRRR UUU MMM PPP YYY !!!!

>

> Dani is doing fairly well , except she is upset , one of her

bestest chums has a birthday party tomorrow night , she KIND OF

wanted to go , but daddy said NO not until check up

> (she only kind of wanted to go , because she is self conscious

about the scars on her head)

> Gosh when will this all be over???????????????????

> sorry for venting

>

> Deb

>

>

> 33yrold husband Joe, was diagnosed with CC in Sept,

> resection on Sept 27th 2004

> found mets to the abdominal wall lining 3 lymph nodes involved

> open wound from infection until Jan 2005

> Ileostomy reversal Dec 7th 2004

> Chemo regiment begun Jan 2005

> 5fu/levorican/Oxaplatin/ Avastin added Feb 14 2005 (Happy

Valentines

> Calcium Magnesium added for the Tingles Feb 28 2005

> Ct Scan done March 23rd 2005 , 16 millimeter cyst like object on

liver found

> April 1 2005 PET scan done awaiting results

> April 11 PET SCAN SHOWS

NED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

> May 9 Plateletts are low 75,000

>

>

>

>

>

> ---------------------------------

> Start your day with Yahoo! - make it your home page

>

>

[Guest guest]

if he has liver involvement he does need to take Tylenol....I have been

advised not to and have noticed several others also...hope he is up and

about soon..hugs,kaye

Re: Re: Joe vs Neuropathy , Neuropathy

is winning

>

>

> After working all day ( he drives for living delivers mail to rural post

offices ) he TRIES to walk and they hurt SOOO horrible that its almost

impossible

> Dani is doing much better headaches are far and inbetween now , she

still has issues with her neck, cant move it correctly yet , but that will

come in time.

> She is still having leg issues , (pain in upper thigh , butt area) but

Joe is insisting that its just from the week of lack of use , she has a

checkup with nurse on Tuesday , if its not better by then Im gonna mention

it .

> Yesterday , she was on puter for about an hour and get up and her leg

started to buckle on her, now again maybe she was sitting funny on it , but

with the surgery they did one worries , I know the right side of her upper

body was numb before surgery due to nerve damage, makes me wonder if the

nerve damage is going farther down , she also has numbness on the back left

hand side of her skull that wasnt there before. Makes me wonder again ,

why??

> Making a long list to ask questions Tuesday.

> anyhow

> How are you doing ?????? Is the pain getting any better? Are you able to

move around more and more??

> As for your son doing some chores for you , he has had 13yrs of

playtime, working for these few months will not hurt him , and although he

may not like it ( heck what teen does like to do chores?) they really will

make a better man out of him.

>

> Wishing you all the best

> Deb

>

> Ingrid Lowe lowenco@...> wrote:

> Deb, So sorry that Joe is still hving the problems. Hopefully he can

> get some help soon. I know my feet stilll tingle and my chemo has

> been done since last week of April. But found out walking does seem

> to releive it some. I am Praying that Joe gets some help.

> How is Dani doing with her headaches? Have they stopped yet? Ingrid

>

>

>

> > Well , Joe has been done with chemo for going on 8weeks monday and

> his Neuropathy is getting worse!

> > Called the oncologist and they had upped his Neurontin from 100mg

> x1 a day , to 100mg x3 a day. Still NO relief.

> > Well called them again , they upped the dosage to 200mg x3 a day

> > And they are recommending him to a neurologist ( which he is

> balking at going )

> > His neuropathy is in his hands/feet/ankles/ and he gets this

> electric shooting vibes from top of neck down his whole body (like

> getting zapped ) several times a day

> > All of this is making him GGGG RRRR UUU MMM PPP YYY !!!!

> >

> > Dani is doing fairly well , except she is upset , one of her

> bestest chums has a birthday party tomorrow night , she KIND OF

> wanted to go , but daddy said NO not until check up

> > (she only kind of wanted to go , because she is self conscious

> about the scars on her head)

> > Gosh when will this all be over???????????????????

> > sorry for venting

> >

> > Deb

> >

> >

> > 33yrold husband Joe, was diagnosed with CC in Sept,

> > resection on Sept 27th 2004

> > found mets to the abdominal wall lining 3 lymph nodes involved

> > open wound from infection until Jan 2005

> > Ileostomy reversal Dec 7th 2004

> > Chemo regiment begun Jan 2005

> > 5fu/levorican/Oxaplatin/ Avastin added Feb 14 2005 (Happy

> Valentines

> > Calcium Magnesium added for the Tingles Feb 28 2005

> > Ct Scan done March 23rd 2005 , 16 millimeter cyst like object on

> liver found

> > April 1 2005 PET scan done awaiting results

> > April 11 PET SCAN SHOWS

> NED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

> > May 9 Plateletts are low 75,000

> >

> >

> >

> >

> >

> > ---------------------------------

> > Start your day with Yahoo! - make it your home page

> >

> >

[Guest guest]

they told me not to take tylenol because I have liver mets that it can cause

your liver functions to be off....check with your dr. but others on here

probably have heard the same thing..I take Ibrofins(can't spell)...hugs,kaye

Re: Re: Joe vs Neuropathy , Neuropathy is

winning

>

>

> In a message dated 7/24/2005 7:17:13 PM Eastern Standard Time,

> kayeskuts@... writes:

>

> if he has liver involvement he does need to take Tylenol....I have been

> advised not to and have noticed several others also...hope he is up and

> about soon..hugs,kaye

>

>

>

> I'm confused, Kaye...if there is liver involvement, do you take Tylenol

or

> not?? Or when do you NOT take Tylenol??

>

> Lots of hugs and prayers, Donelle

> Caregiver to Glenn

>

>

>

[Guest guest]

Does the ALA come in natural form or ???

Deb

" M. Womack " m_womack@...> wrote:

My husband had neuropathy in his feet and legs before chemo and was under the

care of a Neurologist. He tried him on the Neurotin and it did nothing for it

(even the oncologists said he had never seen any favorable results from it).

The Neurologist then recommended he take ALA (Alpha Lipoic Acid) as he had had

several patients with good results. Up until the end of chemo (05/04) my

husband was okay. After treatments were over, he got neuropathy in his feet and

hands, but is now back on the ALA as he couldn't take it consistently while on

chemo because he said it made him sick. He didn't take the B-complex that the

onc. recommended either for the same reason.

He still has the tingling in his hands, but about every other day he says it is

getting better. The other days he says no it is not It is some better

because I am not having to button the top button on his shirt anymore (he

couldn't see that one).

MA

Joe vs Neuropathy , Neuropathy is winning

Well , Joe has been done with chemo for going on 8weeks monday and his

Neuropathy is getting worse!

Called the oncologist and they had upped his Neurontin from 100mg x1 a day ,

to 100mg x3 a day. Still NO relief.

Well called them again , they upped the dosage to 200mg x3 a day

And they are recommending him to a neurologist ( which he is balking at going

)

His neuropathy is in his hands/feet/ankles/ and he gets this electric shooting

vibes from top of neck down his whole body (like getting zapped ) several times

a day

All of this is making him GGGG RRRR UUU MMM PPP YYY !!!!

Dani is doing fairly well , except she is upset , one of her bestest chums has

a birthday party tomorrow night , she KIND OF wanted to go , but daddy said NO

not until check up

(she only kind of wanted to go , because she is self conscious about the scars

on her head)

Gosh when will this all be over???????????????????

sorry for venting

Deb

33yrold husband Joe, was diagnosed with CC in Sept,

resection on Sept 27th 2004

found mets to the abdominal wall lining 3 lymph nodes involved

open wound from infection until Jan 2005

Ileostomy reversal Dec 7th 2004

Chemo regiment begun Jan 2005

5fu/levorican/Oxaplatin/ Avastin added Feb 14 2005 (Happy Valentines

Calcium Magnesium added for the Tingles Feb 28 2005

Ct Scan done March 23rd 2005 , 16 millimeter cyst like object on liver found

April 1 2005 PET scan done awaiting results

April 11 PET SCAN SHOWS

NED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

May 9 Plateletts are low 75,000

---------------------------------

Start your day with Yahoo! - make it your home page

[Guest guest]

We get ours at Wal-Mart in pills. Be sure and check the grams, he takes 600 a

day. They are in the vitamin section in most drug stores as well.

He does have the neuropathy after chemo, but he did not take them consistently

(nor the B-Complex) during chemo. Before any of this nightmare started, the ALA

had been the only thing to help his neuropathy in his legs, and the Neurologist

had tried several prescription medications. The ALA has been extensively

studied in Germany for Diabetic neuropathy.

I really believe that time is about all that will help the chemo neuropathy.

But as I said, every other day he says he thinks it is better. Today it is

getting better . Joking aside, I can tell he is better.

MA

>

>

> Date: 2005/07/25 Mon PM 10:41:51 EDT

> To: colon_cancer_support

> Subject: Re: Joe vs Neuropathy , Neuropathy is winning

>

>

[Guest guest]

Can only hope it keeps getting better for him. Ingrid

> We get ours at Wal-Mart in pills. Be sure and check the grams, he

takes 600 a day. They are in the vitamin section in most drug stores

as well.

>

> He does have the neuropathy after chemo, but he did not take them

consistently (nor the B-Complex) during chemo. Before any of this

nightmare started, the ALA had been the only thing to help his

neuropathy in his legs, and the Neurologist had tried several

prescription medications. The ALA has been extensively studied in

Germany for Diabetic neuropathy.

>

> I really believe that time is about all that will help the chemo

neuropathy. But as I said, every other day he says he thinks it is

better. Today it is getting better . Joking aside, I can tell he

is better.

>

> MA

> >

> > From: deb vamdembos

> > Date: 2005/07/25 Mon PM 10:41:51 EDT

> > To: colon_cancer_support

> > Subject: Re: Joe vs Neuropathy ,

Neuropathy is winning

> >

> >

[Guest guest]

> I take vitamin B6 and B 12's and have thru out chemo for

neuropathy...that

> is something the oncologist told me was the only vitamins I could

take and

> that they help circulation....hugs,kaye

Why are these the ONLY vitamins he will let you take? Did he explain?

My oncologist says go for whatever, even C, which I know is

controversial. Most curious. Thanks!