Re: Joe vs Neuropathy , Neuropathy is winning :(

[Guest guest]

In a message dated 7/21/2005 11:28:20 PM Eastern Standard Time,

debbied31@... writes:

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

Well, darn, Deb and Joe!!! I'd really like to say " damn, damn, damn " , but I

won't say that here...LOL Love your subject line, btw!!!!

I well aware of how very GRUMPY people can be when they have pain everyday!!

Is Joe still able to work with this?? Tell Joe he fought and didn't let

the Cancer or the Chemo win...just a little more FIGHT to get through this!!!

Extra prayers coming your way!!!

Tell Dani there will be many more parties she CAN attend...be patient and

get well.

One day at a time, Deb....that's all you can do!!

Lots of hugs and prayers, Donelle

Caregiver to Glenn

[Guest guest]

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]

Hi: I had terrible neuropathy, so bad I walked as if I had rheumatoid

arthritis, shooting pains -- the whole 9 yards. My onc was NO HELP.

Desperate I took some Excedrin, and voila! The pain went away. Now not

sure if it will work for everybody, but it was TOO SIMPLE for anyone

else to think of... for what it is worth...

Good luck!

>

>

>

>

>

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

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

>

>

[Guest guest]

Hi: I had terrible neuropathy, so bad I walked as if I had rheumatoid

arthritis, shooting pains -- the whole 9 yards. My onc was NO HELP.

Desperate I took some Excedrin, and voila! The pain went away. Now not

sure if it will work for everybody, but it was TOO SIMPLE for anyone

else to think of... for what it is worth...

Good luck!

>

>

>

>

>

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

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

>

>

[Guest guest]

I have been reading your post..and do not want to say something

wrong..but I too tried neurotin and it did not work for me..tried for months

and it only made me worse...I actually got better without anything it just

took time...the neurotin made me walk like I had 50lb. feet and I really had

some irritableness...I am easy to get along with but this medicine made me

otherwise...I have also known others that have tried this medicine and it

has failed them..maybe try nothing and give it time to get better or another

med...just my opinion on what happed to me I am not a dr....just wish I

could help and give you my 2 cents worth...I am a cc survivor stage IV for

over 5 1/2 years now...still have mets but right now we are holding our

own...hugs,kaye biggs

Re: Joe vs Neuropathy , Neuropathy is

winning

>

> In a message dated 7/21/2005 11:28:20 PM Eastern Standard Time,

> debbied31@... writes:

>

> 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

>

>

>

>

> Well, darn, Deb and Joe!!! I'd really like to say " damn, damn, damn " ,

but I

> won't say that here...LOL Love your subject line, btw!!!!

>

> I well aware of how very GRUMPY people can be when they have pain

everyday!!

> Is Joe still able to work with this?? Tell Joe he fought and didn't let

> the Cancer or the Chemo win...just a little more FIGHT to get through

this!!!

> Extra prayers coming your way!!!

>

> Tell Dani there will be many more parties she CAN attend...be patient and

> get well.

>

> One day at a time, Deb....that's all you can do!!

>

> Lots of hugs and prayers, Donelle

> Caregiver to Glenn

>

>

>

[Guest guest]

I have been reading your post..and do not want to say something

wrong..but I too tried neurotin and it did not work for me..tried for months

and it only made me worse...I actually got better without anything it just

took time...the neurotin made me walk like I had 50lb. feet and I really had

some irritableness...I am easy to get along with but this medicine made me

otherwise...I have also known others that have tried this medicine and it

has failed them..maybe try nothing and give it time to get better or another

med...just my opinion on what happed to me I am not a dr....just wish I

could help and give you my 2 cents worth...I am a cc survivor stage IV for

over 5 1/2 years now...still have mets but right now we are holding our

own...hugs,kaye biggs

Re: Joe vs Neuropathy , Neuropathy is

winning

>

> In a message dated 7/21/2005 11:28:20 PM Eastern Standard Time,

> debbied31@... writes:

>

> 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

>

>

>

>

> Well, darn, Deb and Joe!!! I'd really like to say " damn, damn, damn " ,

but I

> won't say that here...LOL Love your subject line, btw!!!!

>

> I well aware of how very GRUMPY people can be when they have pain

everyday!!

> Is Joe still able to work with this?? Tell Joe he fought and didn't let

> the Cancer or the Chemo win...just a little more FIGHT to get through

this!!!

> Extra prayers coming your way!!!

>

> Tell Dani there will be many more parties she CAN attend...be patient and

> get well.

>

> One day at a time, Deb....that's all you can do!!

>

> Lots of hugs and prayers, Donelle

> Caregiver to Glenn

>

>

>

[Guest guest]

hmmmmmmmmmmmmm excedrin , at this point ANYTHING is worth a try

Thanks

'Deb

tracysmithpdx tasmith@...> wrote:

Hi: I had terrible neuropathy, so bad I walked as if I had rheumatoid

arthritis, shooting pains -- the whole 9 yards. My onc was NO HELP.

Desperate I took some Excedrin, and voila! The pain went away. Now not

sure if it will work for everybody, but it was TOO SIMPLE for anyone

else to think of... for what it is worth...

Good luck!

>

>

>

>

>

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

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

>

>

[Guest guest]

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]

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]

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]

Deb, Did Dani have an epidural duing her surgery? If she did that may

account for some of the numbmess. I had the epidural and my left leg

was completley numb after surgery. The nurse said it was from the

epidural. But that issue resolved quickly. I would talk to the

doctors about Dani's numbness. I know surgery can do a lot of strange

things to you. It is from all the drugs they give you. But Dani's

issues are going on way too long. I would talk to the doctors about

this right away. They can only give you some answers. Alight they

don't know it all but perhaps they can give you an idea.

The rib pain is still there. I think it is better each morning but

as the day goes on it gets worse. The surgeon told me it is because

each rib has a nerve under it. And those nerves are talking to me.

Ok, yelling at me!!!LOL Just going to take time. More time then I

would of thought!!! One day at a time!!! 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]

Deb, Did Dani have an epidural duing her surgery? If she did that may

account for some of the numbmess. I had the epidural and my left leg

was completley numb after surgery. The nurse said it was from the

epidural. But that issue resolved quickly. I would talk to the

doctors about Dani's numbness. I know surgery can do a lot of strange

things to you. It is from all the drugs they give you. But Dani's

issues are going on way too long. I would talk to the doctors about

this right away. They can only give you some answers. Alight they

don't know it all but perhaps they can give you an idea.

The rib pain is still there. I think it is better each morning but

as the day goes on it gets worse. The surgeon told me it is because

each rib has a nerve under it. And those nerves are talking to me.

Ok, yelling at me!!!LOL Just going to take time. More time then I

would of thought!!! One day at a time!!! 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]

Deb, Did Dani have an epidural duing her surgery? If she did that may

account for some of the numbmess. I had the epidural and my left leg

was completley numb after surgery. The nurse said it was from the

epidural. But that issue resolved quickly. I would talk to the

doctors about Dani's numbness. I know surgery can do a lot of strange

things to you. It is from all the drugs they give you. But Dani's

issues are going on way too long. I would talk to the doctors about

this right away. They can only give you some answers. Alight they

don't know it all but perhaps they can give you an idea.

The rib pain is still there. I think it is better each morning but

as the day goes on it gets worse. The surgeon told me it is because

each rib has a nerve under it. And those nerves are talking to me.

Ok, yelling at me!!!LOL Just going to take time. More time then I

would of thought!!! One day at a time!!! 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]

Hi Ingrid, tell those ribs of yours to SHUDUP!! ((poor gal )))

As for Dani nope she didnt have an epidural , but the syrinx thingy in her

spinal canal , causes numbness issues, (neuropathy)

So we kind of wonder if this isnt whats causing it ( I pray to God not )

The whole idea for the chiari decompression was basically to make more room in

base of neck/skull area, and hope that cures the syrinx which can cause severe

complications ( paralysis , lose of bowel /bladder control etc)

but wont know if it cured the syrinx for 3-6months

She was less sore today though so maybe it is just from lack of leg use

Thanks alot for letting me rant

Deb

Ingrid Lowe lowenco@...> wrote:

Deb, Did Dani have an epidural duing her surgery? If she did that may

account for some of the numbmess. I had the epidural and my left leg

was completley numb after surgery. The nurse said it was from the

epidural. But that issue resolved quickly. I would talk to the

doctors about Dani's numbness. I know surgery can do a lot of strange

things to you. It is from all the drugs they give you. But Dani's

issues are going on way too long. I would talk to the doctors about

this right away. They can only give you some answers. Alight they

don't know it all but perhaps they can give you an idea.

The rib pain is still there. I think it is better each morning but

as the day goes on it gets worse. The surgeon told me it is because

each rib has a nerve under it. And those nerves are talking to me.

Ok, yelling at me!!!LOL Just going to take time. More time then I

would of thought!!! One day at a time!!! 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]

Deb, I feel so bad what poor Dani is enduring. I am so glad she is

less sore. She needs to take it easy for awhile. I know as she gets

to feeling better she may over do it. That is what my problem is.

Then I pay for it all afternoon and evening. Just want all of us to

get well znd feel better. Tell Dani we are all Praying for her. She

is young and will get over this. She will be just fine. I know God

will do this. Ingird

> > > 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]

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]

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]

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]

The traveling really hurts my husband so thank goodness he doesn't have to drive

in his job. He says he gets " stiff " all over after just a little while in the

car. We just got back from a 4 day journey, and he was hurting so badly today

for the 4 hour trip home, he stopped for tylenol. I only had Ibuprofen and

Alieve with me, and he swears tylenol helps him the most.

He says the Arthritis strength tylenol helped but he is in bed right now. I

really think the whole trip was too much for him, but it was his idea.

MA

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]

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]

You do NOT take Tylenol if there is liver involvement (according to my

surgeon and oncologist).

[Guest guest]

You do NOT take Tylenol if there is liver involvement (according to my

surgeon and oncologist).

[Guest guest]

In a message dated 7/24/2005 7:46:19 PM Eastern Standard Time,

brencolinmom@... writes:

You do NOT take Tylenol if there is liver involvement (according to my

surgeon and oncologist).

Thanks, Pat...just making sure for Glenn. He really hasn't taken either for

a long time. If he hurts bad enough, he takes oxycodone or morphine.

Lots of hugs and prayers, Donelle

Caregiver to Glenn

[Guest guest]

In a message dated 7/24/2005 7:46:19 PM Eastern Standard Time,

brencolinmom@... writes:

You do NOT take Tylenol if there is liver involvement (according to my

surgeon and oncologist).

Thanks, Pat...just making sure for Glenn. He really hasn't taken either for

a long time. If he hurts bad enough, he takes oxycodone or morphine.

Lots of hugs and prayers, Donelle

Caregiver to Glenn

[Guest guest]

Donnelle:

I was told that Motrin is OK.