Oh MY GOSH!! Sylvia I don't remember that!! What was going on in my head at that
time!! I have my doctor bills down pretty good but it goes up gradually
everytime I see him.He has me down to 4-6 months apart for visits.How about the
rest of you? I do get worried that it's so ong between visits.Mama goes to her
oncologist every 3 months.She is covered 100% with medicare and AARP.I have
zilch.I am so sorry I didn't follow through that,Sylvia..and can't even remember
getting it in the mail.
   Freeda




Gleevec@yahoogroups.com wrote:  There are 2 messages in this issue.

Topics in this digest:

1. Re: Digest Number 1138
From: Freeda
2. Re: Digest Number 1138
From: Silvia Keidel


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Sun, 29 Jan 2006 16:59:09 -0800 (PST)
From: Freeda
Subject: Re: Digest Number 1138

Hi,Luis,
I can't help you because I am Scandanavian descent and British isles.I have
horrible skin to begin with.Never could be in the sun long and doc says not at
all now.I am no paler.I do have drier skin.But I think that's diabetes (which
I've had for over 40 years).
I never did have a lot of hair..but enough to have a good hairstyle. After
Gleevec it started falling out and replacing itself.So I had to keep it very
short.Then I started seeing large bald places.Then what I have left stands
straight up.Can't call it punk because there are too many bald
spaces...LOL!!!Wigs are the answer.
They foot cramps are still raging! been told reasons from A-Z and no one does
anything about it.Without insurance no one is very eager to do anything...Good
old USA and medical woes.
It's good to see your names on here again!!
Luis,what month were you diagnosed? Mine was Nov 5th 2001.Then in Jan 02 I found
out what type Leukemia it was and then was put on Gleevec.So by March I was home
free.There was one scare when my white cells excellerated over night.
I've only had one BMB and never again without being knocked out cold.I found it
very difficult to stay still.And too scared to move!!

Sylvia,I didn't know about the Society. And living in AR we don't get much
happening here!!
Good health to you all!!
Freeda



Message: 1
Date: Sat, 28 Jan 2006 07:17:35 -0800 (PST)
From: luis montesinos
Subject: Re: Digest Number 1136

Freeda, Good to hear that you are doing well. I am also going into my fourth
year!!!
I wanted to ask if any of you have experienced any skin related changes since
taking Gleevec. I use to be what you would call a "brown man" now I am going
into the pale side. My doctor has only two other patient in Gleevec and they all
have fair skin so they are not good source of info.
Best to all
Luis

Freeda wrote: Hi,everyone!!
We never keep in touch any longer.I am doing well and just going into my 4th
year remission!!!!!! Nearly NO hair now.What I have sticks up or out.I got two
wing for Cristmas from Merl Norman.They really boosted my self esteem!Don't even
look like wigs! Now my husband never knows who he will be out with!
I hope everyone is doing well!!
Freeda




Message: 2
Date: Sat, 28 Jan 2006 14:00:02 -0800 (PST)
From: Silvia Keidel
Subject: Re: Digest Number 1136

Hi Freeda and everyone!
I wonder that myself why conversation and info fell asleep almost two years ago
on this site.

Freeda, good thing with the wig, but what is the reason for your sudden
hairloss? You have been on Gleevec for so long and now this?

But otherwise I am glad to hear from you again. Did you check Leukemia Society
out? Me and my husband went to their Christmas Party,which was a wonderful
source for me to socialize with people walking in the same shoes as I don't get
out of the house much.

Love to hear from you back!

Silvia
5yrs remission



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

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[Non-text portions of this message have been removed]



________________________________________________________________________
________________________________________________________________________


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------------------------------------------------------------------------
Yahoo! Groups Links




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







Freeda

---------------------------------
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[Non-text portions of this message have been removed]



________________________________________________________________________
________________________________________________________________________

Message: 2
Date: Sun, 29 Jan 2006 18:53:41 -0800 (PST)
From: Silvia Keidel
Subject: Re: Digest Number 1138

Freeda,
do you remember the email with all the info I sent you some month ago for the
Leukemia and Lymphoma Society? I checked that out for you back then and mailed
you that the St. Louis Chapter in Missouri was covering your state.
I do believe that not much is happening in AR, so thats why I thought it might a
good idea for you to register with them since you don't have insurance like me.
They will cover your out-of-pocket cost for Gleevec, lab work and re-imburse you
for transportation.Should you need some help contacting them, I will be glad to
help you, please let me know.

Silvia



---------------------------------
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[Non-text portions of this message have been removed]



________________________________________________________________________
________________________________________________________________________


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







Freeda

---------------------------------
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[Non-text portions of this message have been removed]

Freeda,
   do you remember the email with all the info I sent you some month ago  for the
Leukemia and Lymphoma Society? I checked that out for you back  then and mailed
you that the St. Louis Chapter in Missouri was covering  your state.
   I do believe that not much is happening in AR, so thats why I thought  it
might a good idea for you to register with them since you don't have  insurance
like me.
   They will cover your out-of-pocket cost for Gleevec, lab work and  re-imburse
you for transportation.Should you need some help contacting  them, I will be
glad to help you, please let me know.

   Silvia



---------------------------------
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[Non-text portions of this message have been removed]

Hi,Luis,
   I can't help you because I am Scandanavian descent and British isles.I have
horrible skin to begin with.Never could be in the sun long and doc says not at
all now.I am no paler.I do have drier skin.But I think that's diabetes (which
I've had for over 40 years).
   I never did have a lot of hair..but enough to have a good hairstyle. After
Gleevec it started falling out and replacing itself.So I had to keep it very
short.Then I started seeing large bald places.Then what I have left stands
straight up.Can't call it punk because there are too many bald
spaces...LOL!!!Wigs are the answer.
   They foot cramps are still raging! been told reasons from A-Z and no one does
anything about it.Without insurance no one is very eager to do anything...Good
old USA and medical woes.
   It's good to see your names on here again!!
   Luis,what month were you diagnosed? Mine was Nov 5th 2001.Then in Jan 02 I
found out what type Leukemia it was and then was put on Gleevec.So by March I
was home free.There was one scare when my white cells excellerated over night.
   I've only had one BMB and never again without being knocked out cold.I found
it very difficult to stay still.And too scared to move!!

   Sylvia,I didn't know about the Society. And living in AR we don't get much
happening here!!
   Good health to you all!!
   Freeda



   Message: 1
Date: Sat, 28 Jan 2006 07:17:35 -0800 (PST)
From: luis montesinos
Subject: Re: Digest Number 1136

Freeda, Good to hear that you are doing well. I am also going into my fourth
year!!!
I wanted to ask if any of you have experienced any skin related changes since
taking Gleevec. I use to be what you would call a "brown man" now I am going
into the pale side. My doctor has only two other patient in Gleevec and they all
have fair skin so they are not good source of info.
Best to all
Luis

Freeda wrote: Hi,everyone!!
We never keep in touch any longer.I am doing well and just going into my 4th
year remission!!!!!! Nearly NO hair now.What I have sticks up or out.I got two
wing for Cristmas from Merl Norman.They really boosted my self esteem!Don't even
look like wigs! Now my husband never knows who he will be out with!
I hope everyone is doing well!!
Freeda




Message: 2
Date: Sat, 28 Jan 2006 14:00:02 -0800 (PST)
From: Silvia Keidel
Subject: Re: Digest Number 1136

Hi Freeda and everyone!
I wonder that myself why conversation and info fell asleep almost two years ago
on this site.

Freeda, good thing with the wig, but what is the reason for your sudden
hairloss? You have been on Gleevec for so long and now this?

But otherwise I am glad to hear from you again. Did you check Leukemia Society
out? Me and my husband went to their Christmas Party,which was a wonderful
source for me to socialize with people walking in the same shoes as I don't get
out of the house much.

Love to hear from you back!

Silvia
5yrs remission



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

What are the most popular cars? Find out at Yahoo! Autos

[Non-text portions of this message have been removed]



________________________________________________________________________
________________________________________________________________________


Thank you for being a Gleevec Discussion Group Member!
------------------------------------------------------------------------
Yahoo! Groups Links




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







Freeda

---------------------------------
Bring words and photos together (easily) with
  PhotoMail  - it's free and works with Yahoo! Mail.

[Non-text portions of this message have been removed]

Hi Freeda and everyone!
   I wonder that myself why conversation and info fell asleep almost two years
ago on this site.

   Freeda, good thing with the wig, but what is the reason for your sudden 
hairloss? You have been on Gleevec for so long and now this?

   But otherwise I am glad to hear from you again. Did you check Leukemia 
Society out? Me and my husband went to their Christmas Party,which was  a
wonderful source for me to socialize with people walking in the same  shoes as I
don't get out of the house much.

   Love to hear from you back!

   Silvia
   5yrs remission



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

  What are the most popular cars? Find out at Yahoo! Autos

[Non-text portions of this message have been removed]

Freeda, Good to hear that you are doing well. I am also going into my fourth
year!!!
I wanted to ask if any of you have experienced any skin related changes since
taking Gleevec. I use to be what you would call a "brown man" now I am going
into the pale side. My doctor has only two other patient in Gleevec and they all
have fair skin so they are not good source of info.
Best to all
Luis

Freeda <no1freeda@...> wrote:     Hi,everyone!!
    We never keep in touch any longer.I am doing well and just going into my 4th
year remission!!!!!! Nearly NO hair now.What I have sticks up or out.I got two
wing for Cristmas from Merl Norman.They really boosted my self esteem!Don't even
look like wigs! Now my husband never knows who he will be out with!
    I hope everyone is doing well!!
    Freeda



  Gleevec@yahoogroups.com wrote:  There is 1 message in this issue.

  Topics in this digest:

  1. New Drug Approved for Treating Stomasch and Liver Cancer
  From: "telephonics"


  ________________________________________________________________________
  ________________________________________________________________________

  Message: 1
  Date: Fri, 27 Jan 2006 01:15:29 -0000
  From: "telephonics"
  Subject: New Drug Approved for Treating Stomasch and Liver Cancer

  http://www.msnbc.msn.com/id/11046139/#storyContinued






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  Freeda

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

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  [Non-text portions of this message have been removed]



   Thank you for being a Gleevec Discussion Group Member!



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---------------------------------
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[Non-text portions of this message have been removed]

Hi,everyone!!
   We never keep in touch any longer.I am doing well and just going into my 4th
year remission!!!!!! Nearly NO hair now.What I have sticks up or out.I got two
wing for Cristmas from Merl Norman.They really boosted my self esteem!Don't even
look like wigs! Now my husband never knows who he will be out with!
   I hope everyone is doing well!!
   Freeda



Gleevec@yahoogroups.com wrote:  There is 1 message in this issue.

Topics in this digest:

1. New Drug Approved for Treating Stomasch and Liver Cancer
From: "telephonics"


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Fri, 27 Jan 2006 01:15:29 -0000
From: "telephonics"
Subject: New Drug Approved for Treating Stomasch and Liver Cancer

http://www.msnbc.msn.com/id/11046139/#storyContinued






________________________________________________________________________
________________________________________________________________________


Thank you for being a Gleevec Discussion Group Member!
------------------------------------------------------------------------
Yahoo! Groups Links




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







Freeda

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

  What are the most popular cars? Find out at Yahoo! Autos

[Non-text portions of this message have been removed]

http://www.msnbc.msn.com/id/11046139/#storyContinued

Tele,what a great outcome! I know that a coma can be fatal if it goes on for
very long.I lost my husband of 27 years when he didn't come out of the come.That
was in 1983.Now my new husband looks after me on my bad days.Your wife sounds
like a real trooper!! Way to go ,Buddy!!
Freeda





There is 1 message in this issue.

Topics in this digest:

1. Freeda
From: "telephonics"


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Tue, 18 Oct 2005 23:13:17 -0000
From: "telephonics"
Subject: Freeda

No I'm just an obstinate old bastard who insists on doing things his
own way. The funniest story to come out of my long hospitalization
involves me visiting the hospital where the original surgery was
performed. As I was walking in the hall a nurse came up and asked whom
I was. I told her my name and her retort floored me. But sir, you are
supposed to be dead!!!
There is humor in every situation-to continue in my case-Long after
I had returned home and was well on the way to recovery another nurse
told me that when the Doctor's suggested to my family that making
final arrangements was recommended they also pointed out that a
patient in a coma as long as I was rarely wake up. And if
consciousness is restored one should expect severe brain damage. I was
told that upon hearing this my wife said-" But that would not cause
any change in his behavior"!!!





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------------------------------------------------------------------------
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Freeda

---------------------------------
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[Non-text portions of this message have been removed]

No I'm just an obstinate old bastard who insists on doing things his
own way. The funniest story to come out of my long hospitalization
involves me visiting the hospital where the original surgery was
performed. As I was walking in the hall a nurse came up and asked whom
I was. I told her my name and her retort floored me. But sir, you are
supposed to be dead!!!
    There is humor in every situation-to continue in my case-Long after
I had returned home and was well on the way to recovery another nurse
told me that when the Doctor's suggested to my family that making
final arrangements was recommended they also pointed out that a
patient in a coma as long as I was rarely  wake up. And if
consciousness is restored one should expect severe brain damage. I was
told that upon hearing this my wife said-" But that would not cause
any change in his behavior"!!!

Thanks ever so much for all the help and tips for cramps.I really think for the
first time in a couple of years I may be becoming cramp free.Meaning the
unbearable ones have let up considerably.Now I just can't curl my feet down or
stretch downward.Very painful.Maybe now that will go away.

The 60 year married gent,What a fortunate man you are!!! Having someone plan
your funeral must have seeped into your coma and caused you to wake up and say
no way! You think the care your wife gave you and losing all that weight caused
the CML? Thank goodness you two are doing so well now.

Freeda


Freeda

---------------------------------
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[Non-text portions of this message have been removed]

Freeda,
we are indeed lucky for beeing able to just take
a pill a day instead of the drip.
I feel with all the Leukemia patients, and I am
happy that some are even more succesfull and
fortunate in their lifes than I am, even tho I am
lucky the way things are.

Writing a few kind words is sometimes all I can
offer, I wish I could take pain and cramps away
for all of you who suffer from them. This
internet group is also my only source to get info
from fellow patients on the subject. If we all
did not live that far apart, I would welcome a
meeting once, because sometimes I feel I know you
all for ages. You and others are always on my
mind.

Take care,
Silvia



__________________________________
Yahoo! Music Unlimited
Access over 1 million songs. Try it free.
http://music.yahoo.com/unlimited/

Thanks so much Sylvia.I know how lucky we are every time I go to my oncologist
and see all the bald people sitting together getting their drips.I wonder so
often why I happened to be the one who only takes a pill instead.

Sylvia,you are always so sweet to me and I promise I won't whine again!!

Freeda





Message: 2
    Date: Sat, 15 Oct 2005 22:28:44 -0700 (PDT)
    From: Silvia Keidel <sk6898@...>
Subject: Re: Digest Number 1130

Freeda, it has been quiet all sommer long, but
now more people are writing again. I am always
happy to hear from other patients, and I too,
lean on you all, even it might not seem that way
sometimes!
My hair falls out too, but not in bushels. Thank
god I never had to go on a port for chemo and
loose all my hair. I guess we all are just lucky.

Take good care,
Silvia



Freeda

---------------------------------
  Yahoo! Music Unlimited - Access over 1 million songs. Try it free.

[Non-text portions of this message have been removed]

----- Original Message -----
From: Gleevec@yahoogroups.com
To: Gleevec@yahoogroups.com
Subject: [Gleevec] Digest Number 1131
Date: 16 Oct 2005 12:56:24 -0000

>
>
> There are 2 messages in this issue.
>
> Topics in this digest:
>
> 1. Re: Digest Number 1130
> From: Freeda Berry
> 2. Re: Digest Number 1130
> From: Silvia Keidel
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 1
> Date: Sat, 15 Oct 2005 18:46:06 -0700 (PDT)
> From: Freeda Berry
> Subject: Re: Digest Number 1130
>
> Hi,Sylvia! Good to see you again. And Fr Joseph. I believe I am
> getting some relief with the muscle relaxers now! HOOORAY!
> I have had al the testig for magnesium and potasium and am not low
> on any of those things. I realize the importance to continuing the
> Gleevec and should never say I think of going off that! After all
> it has been a miracle for us all.It's when the pain is so bad that
> I think selfish thoughts and threats.A large amount of my hair came
> out this morning.It grows in enough to cover fairly well and then
> starts to fall out again.That I can live with because it doesn't
> hurt.
> I read my email at my sister's last week and there was one from one
> of you who's been married for 60 years! I lost the message but you
> sound like a wonderful husband! Thanks for your response.
> Thanks to all of you who have allowed me my pity party! I don't
> mean to whine but you all have been through a lot as well and you
> are the ones I lean on.
> Freeda
>
>
>
>
>
> There are 2 messages in this issue.
>
> Topics in this digest:
>
> 1. Re: Digest Number 1128
> From: Silvia Keidel
> 2. Re: Digest Number 1129
> From: Joseph Peek
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 1
> Date: Fri, 14 Oct 2005 09:59:52 -0700 (PDT)
> From: Silvia Keidel
> Subject: Re: Digest Number 1128
>
>
> Freeda,
> it just breakes my heart when I read about your
> ongoing battle with those cramps. I just wish I
> had a solution for you, but I don't. I hope
> something will help sooner or later, it just has
> to be found.
> I think of you and wish you all the best. Please
> stay on the Gleevec, it has helped you and me
> tremendous over the years and we have to be
> thankful for that. Hang in there girl!
>
> Silvia
>
>
>
> __________________________________
> Yahoo! Music Unlimited
> Access over 1 million songs. Try it free.
> http://music.yahoo.com/unlimited/
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 2
> Date: Fri, 14 Oct 2005 11:01:07 -0700 (PDT)
> From: Joseph Peek
> Subject: Re: Digest Number 1129
>
> yo folks, also have your magnesium and potassium
> levels checked. Some drugs (ie prednisone) deplete
> these levels in your system. hope you find theis
> helpful. Fr. Joseph dx CML 14feb02, gleevec 440/d,
> ARSCT 07oct03, chronic GVHD 20 pred/2d, 2.5 progrf/d
>
> --- Gleevec@yahoogroups.com wrote:
>
> > ------------------------ Yahoo! Groups Sponsor
> > --------------------~--> Help save the life of a child. Support St.
Jude
> > Children's Research Hospital.
> >
> http://us.click.yahoo.com/xDyn3B/lbOLAA/xGEGAA/DxgolB/TM
> >
> --------------------------------------------------------------------~->
> >
> >
> > There is 1 message in this issue.
> >
> > Topics in this digest:
> >
> > 1. Re: Digest Number 1128
> > From: Freeda Berry
>
________________________________________________________________________
> >
>
________________________________________________________________________
> >
> > Message: 1 Date: Thu, 13 Oct 2005 16:57:41 -0700 (PDT)
> > From: Freeda Berry Subject: Re: Digest Number 1128
> >
> > Thanks,Luis. I have asked my oncologist and he said
> > he doesn't "do" side effects.I have had eveyone
> > known to the medical industry and I am at the point
> > with the cramps that I would just give up the
> > Gleevec.I can take pain and I had the biopsy without
> > help of medication;so I know I can tollerate
> > pain.The foot cramps come in a package.There are the
> > ones that make us laugh because my toes go all
> > directions and not so painful.It's the ones that
> > pull my feet to the side and tendons are pulling
> > across bones and muscles.That is the one I can't
> > cope with.It can last 1/2 hour and go away or go
> > away and come back right away.I also have them in
> > the arch and the muscle above it knots up like a
> > golf ball.I have been taking muscle relaxers and
> > tonic water.I believe that has helped in the last
> > few days.
> > Also.... Anyone still losing hair? I am going to be
> > bald in another couple years.Fatigue???? That is
> > getting more pronounced this year.I see my doctor
> > the 27th maybe there is something out there to give
> > energy that doesn't have sugar in it
> > Keep healthy,everyone! And Thank Goodness for
> > Gleevec!!!!
> > Freeda
> >
> >
> >
> >
> >
> > Message: 1 Date: Wed, 12 Oct 2005 21:29:05 -0000
> > From: "telephonics" Subject: Re: Digest Number 1124
> >
> > In recent Novartis literatuire on Gleevec they did
> > identify cramps as a side effect of their drug. What they did not
> > offer was the fix for this painful problem.
> > >
> > > I believe cramps are one of the expected side
> > effects
> > > of Gleevec. I have them from time to time, and
> > have
> > > discoverd that tasting a little bit of salt helps.
> > > Luis
> > > > --- Freeda Berry wrote:
> > > > > I have asked so many people and doctores about
> > body
> > > > cramps and I can't remember if I asked on this
> > list
> > > > if anyone else is having the same.I don't know
> > if
> > > > its a delayed side effect of Gleevec or not.I
> > saw
> > > > another doctor the other day and he seems to
> > think
> > > > it's fibromyalgia.When I lay down or sit with my
> > > > feet up I feel the twitching in feet and
> > ankles.Then
> > > > the muscles begin to "pull".My feet pull out to
> > the
> > > > side etc.
> > > > Anyone else have this??
> > > > Freeda
> > > > > > > > >
> >
> >
> > Freeda
> >
> > ---------------------------------
> > Yahoo! Music Unlimited - Access over 1 million
> > songs. Try it free.
> >
> > [Non-text portions of this message have been
> > removed]
> >
> >
> >
> >
>
________________________________________________________________________
> >
>
________________________________________________________________________
> >
> >
> > Thank you for being a Gleevec Discussion Group
> > Member!
> >
>
------------------------------------------------------------------------
> > Yahoo! Groups Links
> >
> >
> > Gleevec-unsubscribe@yahoogroups.com
> >
> >
> >
>
------------------------------------------------------------------------
> >
> >
> >
> >
>
>
>
>
> __________________________________
> Yahoo! Music Unlimited
> Access over 1 million songs. Try it free.
> http://music.yahoo.com/unlimited/
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
>
> Thank you for being a Gleevec Discussion Group Member!
>
------------------------------------------------------------------------
> Yahoo! Groups Links
>
>
>
>
>
------------------------------------------------------------------------
>
>
>
>
>
>
> Freeda
>
> ---------------------------------
> Yahoo! Music Unlimited - Access over 1 million songs. Try it free.
>
> [Non-text portions of this message have been removed]
>
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 2
> Date: Sat, 15 Oct 2005 22:28:44 -0700 (PDT)
> From: Silvia Keidel
> Subject: Re: Digest Number 1130
>
> Freeda, it has been quiet all sommer long, but
> now more people are writing again. I am always
> happy to hear from other patients, and I too,
> lean on you all, even it might not seem that way
> sometimes!
> My hair falls out too, but not in bushels. Thank
> god I never had to go on a port for chemo and
> loose all my hair. I guess we all are just lucky.
>
> Take good care,
> Silvia
>
>
>
> __________________________________
> Start your day with Yahoo! - Make it your home page!
> http://www.yahoo.com/r/hs
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
>
> Thank you for being a Gleevec Discussion Group Member!
>
------------------------------------------------------------------------
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>
>
>
>
>
------------------------------------------------------------------------
  am the one who recently celebrated our 60th wedding anniversary.  Mt
wife got CML in retaliation for having to care for me a few years ago
when surgery resulted in sepsis. I was in a coma for 6 weeks,family had
been advoised to make final arrangements but obstinate me-I would not
agree and I woke up. Subsequently 5 months in hospital-wife came everyt
day-sent home after having lost about 50 pounds and walking but 3 steps.
I determined to get back to playing golf soe each day after being
torturted by physical therapist I would rest up a bit and then repeat the
routine again by myself or with wife's assistance. Took me a year but I
did completely recover. So now understand me when I say. Listen to your
therapist and do as directed. By doind so, one will repair all the damage
done by the surgeons!!!

--
_______________________________________________

Search for businesses by name, location, or phone number.  -Lycos Yellow Pages

http://r.lycos.com/r/yp_emailfooter/http://yellowpages.lycos.com/default.asp?SRC\
=lycos10



[Non-text portions of this message have been removed]

----- Original Message -----
From: Gleevec@yahoogroups.com
To: Gleevec@yahoogroups.com
Subject: [Gleevec] Digest Number 1130
Date: 15 Oct 2005 12:06:22 -0000

>
>
> There are 2 messages in this issue.
>
> Topics in this digest:
>
> 1. Re: Digest Number 1128
> From: Silvia Keidel
> 2. Re: Digest Number 1129
> From: Joseph Peek
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 1
> Date: Fri, 14 Oct 2005 09:59:52 -0700 (PDT)
> From: Silvia Keidel
> Subject: Re: Digest Number 1128
>
>
> Freeda,
> it just breakes my heart when I read about your
> ongoing battle with those cramps. I just wish I
> had a solution for you, but I don't. I hope
> something will help sooner or later, it just has
> to be found.
> I think of you and wish you all the best. Please
> stay on the Gleevec, it has helped you and me
> tremendous over the years and we have to be
> thankful for that. Hang in there girl!
>
> Silvia
>
>
>
> __________________________________
> Yahoo! Music Unlimited
> Access over 1 million songs. Try it free.
> http://music.yahoo.com/unlimited/
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 2
> Date: Fri, 14 Oct 2005 11:01:07 -0700 (PDT)
> From: Joseph Peek
> Subject: Re: Digest Number 1129
>
> yo folks, also have your magnesium and potassium
> levels checked. Some drugs (ie prednisone) deplete
> these levels in your system. hope you find theis
> helpful. Fr. Joseph dx CML 14feb02, gleevec 440/d,
> ARSCT 07oct03, chronic GVHD 20 pred/2d, 2.5 progrf/d
>
> --- Gleevec@yahoogroups.com wrote:
>
> > ------------------------ Yahoo! Groups Sponsor
> > --------------------~--> Help save the life of a child. Support St.
Jude
> > Children's Research Hospital.
> >
> http://us.click.yahoo.com/xDyn3B/lbOLAA/xGEGAA/DxgolB/TM
> >
> --------------------------------------------------------------------~->
> >
> >
> > There is 1 message in this issue.
> >
> > Topics in this digest:
> >
> > 1. Re: Digest Number 1128
> > From: Freeda Berry
> >
> >
> >
>
________________________________________________________________________
> >
>
________________________________________________________________________
> >
> > Message: 1 Date: Thu, 13 Oct 2005 16:57:41 -0700 (PDT)
> > From: Freeda Berry
> > Subject: Re: Digest Number 1128
> >
> > Thanks,Luis. I have asked my oncologist and he said
> > he doesn't "do" side effects.I have had eveyone
> > known to the medical industry and I am at the point
> > with the cramps that I would just give up the
> > Gleevec.I can take pain and I had the biopsy without
> > help of medication;so I know I can tollerate
> > pain.The foot cramps come in a package.There are the
> > ones that make us laugh because my toes go all
> > directions and not so painful.It's the ones that
> > pull my feet to the side and tendons are pulling
> > across bones and muscles.That is the one I can't
> > cope with.It can last 1/2 hour and go away or go
> > away and come back right away.I also have them in
> > the arch and the muscle above it knots up like a
> > golf ball.I have been taking muscle relaxers and
> > tonic water.I believe that has helped in the last
> > few days.
> > Also.... Anyone still losing hair? I am going to be
> > bald in another couple years.Fatigue???? That is
> > getting more pronounced this year.I see my doctor
> > the 27th maybe there is something out there to give
> > energy that doesn't have sugar in it
> > Keep healthy,everyone! And Thank Goodness for
> > Gleevec!!!!
> > Freeda
> >
> >
> >
> >
> >
> > Message: 1 Date: Wed, 12 Oct 2005 21:29:05 -0000
> > From: "telephonics" Subject: Re: Digest Number 1124
> >
> > In recent Novartis literatuire on Gleevec they did
> > identify cramps as a side effect of their drug. What they did not
> > offer was the fix for this painful problem.
> > >
> > > I believe cramps are one of the expected side
> > effects
> > > of Gleevec. I have them from time to time, and
> > have
> > > discoverd that tasting a little bit of salt helps.
> > > Luis
> > > > --- Freeda Berry wrote:
> > > > > I have asked so many people and doctores about
> > body
> > > > cramps and I can't remember if I asked on this
> > list
> > > > if anyone else is having the same.I don't know
> > if
> > > > its a delayed side effect of Gleevec or not.I
> > saw
> > > > another doctor the other day and he seems to
> > think
> > > > it's fibromyalgia.When I lay down or sit with my
> > > > feet up I feel the twitching in feet and
> > ankles.Then
> > > > the muscles begin to "pull".My feet pull out to
> > the
> > > > side etc.
> > > > Anyone else have this??
> > > > Freeda
> > > > > > > > >
> >
> >
> > Freeda
> >
> > ---------------------------------
> > Yahoo! Music Unlimited - Access over 1 million
> > songs. Try it free.
> >
> > [Non-text portions of this message have been
> > removed]
> >
> >
> >
> >
>
________________________________________________________________________
> >
>
________________________________________________________________________
> >
> >
> > Thank you for being a Gleevec Discussion Group
> > Member!
> >
>
------------------------------------------------------------------------
> > Yahoo! Groups Links
> >
> >
> > Gleevec-unsubscribe@yahoogroups.com
> >
> >
> >
>
------------------------------------------------------------------------
> >
> >
> >
> >
>
>
>
>
> __________________________________
> Yahoo! Music Unlimited
> Access over 1 million songs. Try it free.
> http://music.yahoo.com/unlimited/
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
>
> Thank you for being a Gleevec Discussion Group Member!
>
------------------------------------------------------------------------
> Yahoo! Groups Links
>
>
>
>
>
------------------------------------------------------------------------
Feeda, if  my wife's Onc said he doesn't do side effects my reply would
be that I don't do him any longer. Then I'd find a new and more
compassionate Doctor to help me back to some semblance of a normal life.

--
_______________________________________________

Search for businesses by name, location, or phone number.  -Lycos Yellow Pages

http://r.lycos.com/r/yp_emailfooter/http://yellowpages.lycos.com/default.asp?SRC\
=lycos10



[Non-text portions of this message have been removed]

Freeda

   You have my sympathy for yopur cramps are exactly what hit my wife. All I can
offer you is the way her Oncologist dealt successfully with this problem. He
felt that the 400 MG normal dose was toxic in my wife's case. Accordingly he
stopped the Gleevec and restored her to agrylin and Hydrea. This he kept up for
a month. He then reverted to Gleevec but only at 200 MG per day. Surpise to he
and us. It did stop the cramps almost completely but best of all her bi-monthly
tests showed her to be in remission. After about 4 years some cramping activity
again started up byt her Onc added Neurontin to her daily doseages and the
cramps vanished. Hope this gives you some ideas to questioon your Onc with. Good
Luck



[Non-text portions of this message have been removed]

Freeda, it has been quiet all sommer long, but
now more people are writing again. I am always
happy to hear from other patients, and I too,
lean on you all, even it might not seem that way
sometimes!
My hair falls out too, but not in bushels. Thank
god I never had to go on a port for chemo and
loose all my hair. I guess we all are just lucky.

Take good care,
Silvia



__________________________________
Start your day with Yahoo! - Make it your home page!
http://www.yahoo.com/r/hs

Hi,Sylvia! Good to see you again. And Fr Joseph. I believe I am getting some
relief with the muscle relaxers now! HOOORAY!
I have had al the testig for magnesium and potasium and am not low on any of
those things. I realize the importance to continuing the Gleevec and should
never say I think of going off that! After all it has been a miracle for us
all.It's when the pain is so bad that I think selfish thoughts and threats.A
large amount of my hair came out this morning.It grows in enough to cover fairly
well and then starts to fall out again.That I can live with because it doesn't
hurt.
I read my email at my sister's last week and there was one from one of you who's
been married for 60 years! I lost the message but you sound like a wonderful
husband! Thanks for your response.
Thanks to all of you who have allowed me my pity party! I don't mean to whine
but you all have been through a lot as well and you are the ones I lean on.
Freeda





There are 2 messages in this issue.

Topics in this digest:

1. Re: Digest Number 1128
From: Silvia Keidel
2. Re: Digest Number 1129
From: Joseph Peek


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Fri, 14 Oct 2005 09:59:52 -0700 (PDT)
From: Silvia Keidel
Subject: Re: Digest Number 1128


Freeda,
it just breakes my heart when I read about your
ongoing battle with those cramps. I just wish I
had a solution for you, but I don't. I hope
something will help sooner or later, it just has
to be found.
I think of you and wish you all the best. Please
stay on the Gleevec, it has helped you and me
tremendous over the years and we have to be
thankful for that. Hang in there girl!

Silvia



__________________________________
Yahoo! Music Unlimited
Access over 1 million songs. Try it free.
http://music.yahoo.com/unlimited/


________________________________________________________________________
________________________________________________________________________

Message: 2
Date: Fri, 14 Oct 2005 11:01:07 -0700 (PDT)
From: Joseph Peek
Subject: Re: Digest Number 1129

yo folks, also have your magnesium and potassium
levels checked. Some drugs (ie prednisone) deplete
these levels in your system. hope you find theis
helpful. Fr. Joseph dx CML 14feb02, gleevec 440/d,
ARSCT 07oct03, chronic GVHD 20 pred/2d, 2.5 progrf/d

--- Gleevec@yahoogroups.com wrote:

> ------------------------ Yahoo! Groups Sponsor
> --------------------~-->
> Help save the life of a child. Support St. Jude
> Children's Research Hospital.
>
http://us.click.yahoo.com/xDyn3B/lbOLAA/xGEGAA/DxgolB/TM
>
--------------------------------------------------------------------~->
>
>
> There is 1 message in this issue.
>
> Topics in this digest:
>
> 1. Re: Digest Number 1128
> From: Freeda Berry
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 1
> Date: Thu, 13 Oct 2005 16:57:41 -0700 (PDT)
> From: Freeda Berry
> Subject: Re: Digest Number 1128
>
> Thanks,Luis. I have asked my oncologist and he said
> he doesn't "do" side effects.I have had eveyone
> known to the medical industry and I am at the point
> with the cramps that I would just give up the
> Gleevec.I can take pain and I had the biopsy without
> help of medication;so I know I can tollerate
> pain.The foot cramps come in a package.There are the
> ones that make us laugh because my toes go all
> directions and not so painful.It's the ones that
> pull my feet to the side and tendons are pulling
> across bones and muscles.That is the one I can't
> cope with.It can last 1/2 hour and go away or go
> away and come back right away.I also have them in
> the arch and the muscle above it knots up like a
> golf ball.I have been taking muscle relaxers and
> tonic water.I believe that has helped in the last
> few days.
> Also.... Anyone still losing hair? I am going to be
> bald in another couple years.Fatigue???? That is
> getting more pronounced this year.I see my doctor
> the 27th maybe there is something out there to give
> energy that doesn't have sugar in it
> Keep healthy,everyone! And Thank Goodness for
> Gleevec!!!!
> Freeda
>
>
>
>
>
> Message: 1
> Date: Wed, 12 Oct 2005 21:29:05 -0000
> From: "telephonics"
> Subject: Re: Digest Number 1124
>
> In recent Novartis literatuire on Gleevec they did
> identify cramps
> as a side effect of their drug. What they did not
> offer was the fix
> for this painful problem.
> >
> > I believe cramps are one of the expected side
> effects
> > of Gleevec. I have them from time to time, and
> have
> > discoverd that tasting a little bit of salt helps.
> > Luis
> >
> > --- Freeda Berry wrote:
> >
> > > I have asked so many people and doctores about
> body
> > > cramps and I can't remember if I asked on this
> list
> > > if anyone else is having the same.I don't know
> if
> > > its a delayed side effect of Gleevec or not.I
> saw
> > > another doctor the other day and he seems to
> think
> > > it's fibromyalgia.When I lay down or sit with my
> > > feet up I feel the twitching in feet and
> ankles.Then
> > > the muscles begin to "pull".My feet pull out to
> the
> > > side etc.
> > > Anyone else have this??
> > > Freeda
> > >
> > >
> > >
> >
>
>
> Freeda
>
> ---------------------------------
> Yahoo! Music Unlimited - Access over 1 million
> songs. Try it free.
>
> [Non-text portions of this message have been
> removed]
>
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
>
> Thank you for being a Gleevec Discussion Group
> Member!
>
------------------------------------------------------------------------
> Yahoo! Groups Links
>
>
> Gleevec-unsubscribe@yahoogroups.com
>
>
>
------------------------------------------------------------------------
>
>
>
>




__________________________________
Yahoo! Music Unlimited
Access over 1 million songs. Try it free.
http://music.yahoo.com/unlimited/


________________________________________________________________________
________________________________________________________________________


Thank you for being a Gleevec Discussion Group Member!
------------------------------------------------------------------------
Yahoo! Groups Links




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






Freeda

---------------------------------
  Yahoo! Music Unlimited - Access over 1 million songs. Try it free.

[Non-text portions of this message have been removed]

yo folks, also have your magnesium and potassium
levels checked.  Some drugs (ie prednisone) deplete
these levels in your system.  hope you find theis
helpful.  Fr. Joseph dx CML 14feb02, gleevec 440/d,
ARSCT 07oct03, chronic GVHD 20 pred/2d, 2.5 progrf/d

--- Gleevec@yahoogroups.com wrote:

> ------------------------ Yahoo! Groups Sponsor
> --------------------~-->
> Help save the life of a child. Support St. Jude
> Children's Research Hospital.
>
http://us.click.yahoo.com/xDyn3B/lbOLAA/xGEGAA/DxgolB/TM
>
--------------------------------------------------------------------~->
>
>
> There is 1 message in this issue.
>
> Topics in this digest:
>
>       1. Re: Digest Number 1128
>            From: Freeda Berry <no1freeda@...>
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 1
>    Date: Thu, 13 Oct 2005 16:57:41 -0700 (PDT)
>    From: Freeda Berry <no1freeda@...>
> Subject: Re: Digest Number 1128
>
> Thanks,Luis. I have asked my oncologist and he said
> he doesn't "do" side effects.I have had eveyone
> known to the medical industry and I am at the point
> with the cramps that I would just give up the
> Gleevec.I can take pain and I had the biopsy without
> help of medication;so I know I can tollerate
> pain.The foot cramps come in a package.There are the
> ones that make us laugh because my toes go all
> directions and not so painful.It's the ones that
> pull my feet to the side and tendons are pulling
> across bones and muscles.That is the one I can't
> cope with.It can last 1/2 hour and go away or go
> away and come back right away.I also have them in
> the arch and the muscle above it knots up like a
> golf ball.I have been taking muscle relaxers and
> tonic water.I believe that has helped in the last
> few days.
> Also.... Anyone still losing hair? I am going to be
> bald in another couple years.Fatigue???? That is
> getting more pronounced this year.I see my doctor
> the 27th maybe there is something out there to give
> energy that doesn't have sugar in it
> Keep healthy,everyone! And Thank Goodness for
> Gleevec!!!!
> Freeda
>
>
>
>
>
> Message: 1
> Date: Wed, 12 Oct 2005 21:29:05 -0000
> From: "telephonics"
> Subject: Re: Digest Number 1124
>
> In recent Novartis literatuire on Gleevec they did
> identify cramps
> as a side effect of their drug. What they did not
> offer was the fix
> for this painful problem.
> >
> > I believe cramps are one of the expected side
> effects
> > of Gleevec. I have them from time to time, and
> have
> > discoverd that tasting a little bit of salt helps.
> > Luis
> >
> > --- Freeda Berry wrote:
> >
> > > I have asked so many people and doctores about
> body
> > > cramps and I can't remember if I asked on this
> list
> > > if anyone else is having the same.I don't know
> if
> > > its a delayed side effect of Gleevec or not.I
> saw
> > > another doctor the other day and he seems to
> think
> > > it's fibromyalgia.When I lay down or sit with my
> > > feet up I feel the twitching in feet and
> ankles.Then
> > > the muscles begin to "pull".My feet pull out to
> the
> > > side etc.
> > > Anyone else have this??
> > > Freeda
> > >
> > >
> > >
> >
>
>
> Freeda
>
> ---------------------------------
>  Yahoo! Music Unlimited - Access over 1 million
> songs. Try it free.
>
> [Non-text portions of this message have been
> removed]
>
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
>
> Thank you for being a Gleevec Discussion Group
> Member!
>
------------------------------------------------------------------------
> Yahoo! Groups Links
>
>
>     Gleevec-unsubscribe@yahoogroups.com
>
>
>
------------------------------------------------------------------------
>
>
>
>




__________________________________
Yahoo! Music Unlimited
Access over 1 million songs. Try it free.
http://music.yahoo.com/unlimited/

Freeda,
it just breakes my heart when I read about your
ongoing battle with those cramps. I just wish I
had a solution for you, but I don't. I hope
something will help sooner or later, it just has
to be found.
I think of you and wish you all the best. Please
stay on the Gleevec, it has helped you and me
tremendous over the years and we have to be
thankful for that. Hang in there girl!

Silvia



__________________________________
Yahoo! Music Unlimited
Access over 1 million songs. Try it free.
http://music.yahoo.com/unlimited/

Thanks,Luis. I have asked my oncologist and he said he doesn't "do" side
effects.I have had eveyone known to the medical industry and I am at the point
with the cramps that I would just give up the Gleevec.I can take pain and I had
the biopsy without help of medication;so I know I can tollerate pain.The foot
cramps come in a package.There are the ones that make us laugh because my toes
go all directions and not so painful.It's the ones that pull my feet to the side
and tendons are pulling across bones and muscles.That is the one I can't cope
with.It can last 1/2 hour and go away or go away and come back right away.I also
have them in the arch and the muscle above it knots up like a golf ball.I have
been taking muscle relaxers and tonic water.I believe that has helped in the
last few days.
Also.... Anyone still losing hair? I am going to be bald in another couple
years.Fatigue???? That is getting more pronounced this year.I see my doctor the
27th maybe there is something out there to give energy that doesn't have sugar
in it
Keep healthy,everyone! And Thank Goodness for Gleevec!!!!
Freeda





Message: 1
Date: Wed, 12 Oct 2005 21:29:05 -0000
From: "telephonics"
Subject: Re: Digest Number 1124

In recent Novartis literatuire on Gleevec they did identify cramps
as a side effect of their drug. What they did not offer was the fix
for this painful problem.
>
> I believe cramps are one of the expected side effects
> of Gleevec. I have them from time to time, and have
> discoverd that tasting a little bit of salt helps.
> Luis
>
> --- Freeda Berry wrote:
>
> > I have asked so many people and doctores about body
> > cramps and I can't remember if I asked on this list
> > if anyone else is having the same.I don't know if
> > its a delayed side effect of Gleevec or not.I saw
> > another doctor the other day and he seems to think
> > it's fibromyalgia.When I lay down or sit with my
> > feet up I feel the twitching in feet and ankles.Then
> > the muscles begin to "pull".My feet pull out to the
> > side etc.
> > Anyone else have this??
> > Freeda
> >
> >
> >
>


Freeda

---------------------------------
  Yahoo! Music Unlimited - Access over 1 million songs. Try it free.

[Non-text portions of this message have been removed]

In recent Novartis literatuire on Gleevec they did identify cramps
as a side effect of their drug. What they did not offer was the fix
for this painful problem.
>
> I believe cramps are one of the expected side effects
> of Gleevec. I have them from time to time, and have
> discoverd that tasting a little bit of salt helps.
> Luis
>
> --- Freeda Berry <no1freeda@y...> wrote:
>
> > I have asked so many people and doctores about body
> > cramps and I can't remember if I asked on this list
> > if anyone else is having the same.I don't know if
> > its a delayed side effect of Gleevec or not.I saw
> > another doctor the other day and he seems to think
> > it's fibromyalgia.When I lay down or sit with my
> > feet up I feel the twitching in feet and ankles.Then
> > the muscles begin to "pull".My feet pull out to the
> > side etc.
> > Anyone else have this??
> > Freeda
> >
> >
> >
> >
> >
> >
> > There is 1 message in this issue.
> >
> > Topics in this digest:
> >
> > 1. Re: test
> > From: "danny"
> >
> >
> >
>
_____________________________________________________________________
___
> >
>
_____________________________________________________________________
___
> >
> > Message: 1
> > Date: Sun, 02 Oct 2005 13:42:31 -0000
> > From: "danny"
> > Subject: Re: test
> >
> > --- In Gleevec@yahoogroups.com, "telephonics"
> > wrote:
> > > test
> >
> > what was the question?
> >
> >
> >
> >
> >
> >
>
_____________________________________________________________________
___
> >
>
_____________________________________________________________________
___
> >
> >
> > Thank you for being a Gleevec Discussion Group
> > Member!
> >
> -------------------------------------------------------------------
-----
> > Yahoo! Groups Links
> >
> >
> >
> >
> >
> -------------------------------------------------------------------
-----
> >
> >
> >
> >
> >
> >
> > Freeda
> >
> > ---------------------------------
> > Yahoo! for Good
> >  Click here to donate to the Hurricane Katrina
> > relief effort.
> >
> > [Non-text portions of this message have been
> > removed]
> >
> >
>
>
>
>
> __________________________________
> Yahoo! Mail - PC Magazine Editors' Choice 2005
> http://mail.yahoo.com
>

Freeda:
         Creatinine has to do with the  kidneys.  Going to a kidney specialist
very soon.  I hope and pray  that the Gleevec hadn't caused my kidneys to
start working strangely.  I  will write and let you know.  My email address is
_markalanalleman@..._ (mailto:markalanalleman@...) .  I am  wondering
has anyone else's creatinine has altered while taking Gleevec or  thyroid
problems.  Thanks for the comeback. -  Mark


[Non-text portions of this message have been removed]

Mark,what's creatinine ?? I haven't heard of that.
I have asked every doctor I have what causes the muscle cramps/spasms.My onc
told me to drink diet tonic water.I have been doing that and I think sometimes
it does help.Some cramps I can tolerate but there is one foot cramp I just about
howl!!! There are several different foot cramps I have.I never knew there were
so many muscles in the foot!
You were diagnosed only a couple of months befor me! Thank Goodness for Gleevec.
Thanks for the reply,Mark.
Freeda






There are 2 messages in this issue.

Topics in this digest:

1. Re: Digest Number 1124
From: Freeda Berry
2. Re: Digest Number 1124
From: MarkalanAlleman@...


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Tue, 4 Oct 2005 16:45:19 -0700 (PDT)
From: Freeda Berry
Subject: Re: Digest Number 1124

I have asked so many people and doctores about body cramps and I can't remember
if I asked on this list if anyone else is having the same.I don't know if its a
delayed side effect of Gleevec or not.I saw another doctor the other day and he
seems to think it's fibromyalgia.When I lay down or sit with my feet up I feel
the twitching in feet and ankles.Then the muscles begin to "pull".My feet pull
out to the side etc.
Anyone else have this??
Freeda






There is 1 message in this issue.

Topics in this digest:

1. Re: test
From: "danny"


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Sun, 02 Oct 2005 13:42:31 -0000
From: "danny"
Subject: Re: test

--- In Gleevec@yahoogroups.com, "telephonics"
wrote:
> test

what was the question?





________________________________________________________________________
________________________________________________________________________


Thank you for being a Gleevec Discussion Group Member!
------------------------------------------------------------------------
Yahoo! Groups Links




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






Freeda

---------------------------------
Yahoo! for Good
Click here to donate to the Hurricane Katrina relief effort.

[Non-text portions of this message have been removed]



________________________________________________________________________
________________________________________________________________________

Message: 2
Date: Tue, 4 Oct 2005 20:42:20 EDT
From: MarkalanAlleman@...
Subject: Re: Digest Number 1124

Freeda:
I have also had cramps but in the line of work I do I sweat a lot and
by adding a little extra salt on my dinner before lying down for the night has
helped eliminate the cramps for me. My doctor said it wouldn't hurt me
after I had called him about the cramps. After being diagnosed (August,2001)
with
CML I have been on Gleevec since September and have been in full remission
since October of that same year. Cramps didn't start until about a year ago.
I have had side effects of weight gain due to Thyroid malfunction (on
Levoxyl), and for the first time just discovered (9-12-05) creatinine had risen
(no
treatment started yet). Talk to your doctors see what they may say. Good
Luck - Mark


[Non-text portions of this message have been removed]



________________________________________________________________________
________________________________________________________________________


Thank you for being a Gleevec Discussion Group Member!
------------------------------------------------------------------------
Yahoo! Groups Links




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






Freeda

---------------------------------
Yahoo! for Good
  Click here to donate to the Hurricane Katrina relief effort.

[Non-text portions of this message have been removed]

Freeda: My wife has been on gleevec since the day after it was approved by the
FDA. Initially she was on the standard dose of 400MG per day but after about 30
days the cramps she was tortured with were impossible to bear. Her Onc stopped
the Gleevex for 2 weeks and then restarted at 200mg per day.Her Onc monitored
her very closely and both he and Novartis were somewhat surprised to find that
on that lowered dose she was in remission and the cramps slowly faded into
history. But after 2+ years past the cramps started reappearing and we started
the eternal search for relief from pain. We tried them all-calcium,
potassium,bananas, glucosamine and even a copper bracelet. Bit the cramps kept
getting more sever. When someone suggested visiting a pain specialist I grabbed
at that idea and found a most compassionate Doctor. He suggested and we tried
600 mg Neurontin. This is a drug normally used to control epilepsy but it is
also useful in alleviating muscle spasms. Wife takes this dose at bedtime and
apparently the cramps are a thing of the past. She has been in  remission for
over 5 years with but 200MG of Gleevec daily.
   Hope this gives you some idea of what you might try. Right or wrong every
human is different and that was certainly true when I married my girl over 65
years ago!
----- Original Message -----
From: Gleevec@yahoogroups.com
To: Gleevec@yahoogroups.com
Subject: [Gleevec] Digest Number 1126
Date: 5 Oct 2005 12:28:19 -0000

>
>
> There are 2 messages in this issue.
>
> Topics in this digest:
>
>        1. Re: Digest Number 1124
>             From: Freeda Berry <no1freeda@...>
>        2. Re: Digest Number 1124
>             From: MarkalanAlleman@...
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>     Date: Tue, 4 Oct 2005 16:45:19 -0700 (PDT)
>     From: Freeda Berry <no1freeda@...>
> Subject: Re: Digest Number 1124
>
> I have asked so many people and doctores about body cramps and I
> can't remember if I asked on this list if anyone else is having the
> same.I don't know if its a delayed side effect of Gleevec or not.I
> saw another doctor the other day and he seems to think it's
> fibromyalgia.When I lay down or sit with my feet up I feel the
> twitching in feet and ankles.Then the muscles begin to "pull".My
> feet pull out to the side etc.
> Anyone else have this??
> Freeda
>
>
>
>
>
>
> There is 1 message in this issue.
>
> Topics in this digest:
>
> 1. Re: test
> From: "danny"
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
> Date: Sun, 02 Oct 2005 13:42:31 -0000
> From: "danny"
> Subject: Re: test
>
> --- In Gleevec@yahoogroups.com, "telephonics"
> wrote:
> > test
>
> what was the question?
>
>
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
> Thank you for being a Gleevec Discussion Group Member!
> ------------------------------------------------------------------------
> Yahoo! Groups Links
>
>
>
>
> ------------------------------------------------------------------------
>
>
>
>
>
>
> Freeda
>
> ---------------------------------
> Yahoo! for Good
>   Click here to donate to the Hurricane Katrina relief effort.
>
> [Non-text portions of this message have been removed]
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 2
>     Date: Tue, 4 Oct 2005 20:42:20 EDT
>     From: MarkalanAlleman@...
> Subject: Re: Digest Number 1124
>
> Freeda:
>       I have also had cramps but in the line of work I  do I sweat a lot and
> by adding a little extra salt on my dinner before  lying down for
> the night has
> helped eliminate the cramps for me.  My  doctor said it wouldn't hurt me
> after I had called him about the  cramps. After being diagnosed
> (August,2001) with
> CML I have been on  Gleevec since September and have been in full remission
> since October of that  same year.  Cramps didn't start until about a year ago.
> I have had  side effects of weight gain due to Thyroid malfunction (on
> Levoxyl), and  for the first time just discovered (9-12-05)
> creatinine had risen (no
>   treatment started yet).  Talk to your doctors see what they may  say.  Good
> Luck - Mark
>
>
> [Non-text portions of this message have been removed]
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
> Thank you for being a Gleevec Discussion Group Member!
> ------------------------------------------------------------------------
> Yahoo! Groups Links
>
>
>
>
> ------------------------------------------------------------------------


--
_______________________________________________

Search for businesses by name, location, or phone number.  -Lycos Yellow Pages

http://r.lycos.com/r/yp_emailfooter/http://yellowpages.lycos.com/default.asp?SRC\
=lycos10

I believe cramps are one of the expected side effects
of Gleevec. I have them from time to time, and have
discoverd that tasting a little bit of salt helps.
Luis

--- Freeda Berry <no1freeda@...> wrote:

> I have asked so many people and doctores about body
> cramps and I can't remember if I asked on this list
> if anyone else is having the same.I don't know if
> its a delayed side effect of Gleevec or not.I saw
> another doctor the other day and he seems to think
> it's fibromyalgia.When I lay down or sit with my
> feet up I feel the twitching in feet and ankles.Then
> the muscles begin to "pull".My feet pull out to the
> side etc.
> Anyone else have this??
> Freeda
>
>
>
>
>
>
> There is 1 message in this issue.
>
> Topics in this digest:
>
> 1. Re: test
> From: "danny"
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 1
> Date: Sun, 02 Oct 2005 13:42:31 -0000
> From: "danny"
> Subject: Re: test
>
> --- In Gleevec@yahoogroups.com, "telephonics"
> wrote:
> > test
>
> what was the question?
>
>
>
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
>
> Thank you for being a Gleevec Discussion Group
> Member!
>
------------------------------------------------------------------------
> Yahoo! Groups Links
>
>
>
>
>
------------------------------------------------------------------------
>
>
>
>
>
>
> Freeda
>
> ---------------------------------
> Yahoo! for Good
>  Click here to donate to the Hurricane Katrina
> relief effort.
>
> [Non-text portions of this message have been
> removed]
>
>




__________________________________
Yahoo! Mail - PC Magazine Editors' Choice 2005
http://mail.yahoo.com

Hi all. After a year long battle with a
manufacturer company of a drug for the nausea, I
finally realized that my side effects and nausea
accures less than before. I too, take the 100mg
tablet, even tho I did not like it in the
beginning. But somehow it works much better. Now
that I get the nausea drug for free, I don't need
it anymore.




__________________________________
Yahoo! Mail - PC Magazine Editors' Choice 2005
http://mail.yahoo.com

I have been on 600mg Gleevec for my GIST.  I also get leg cramps,  especially
at night when I slow down.  I tend to let myself get dehydrated,  and when I
drink more water, they seem to ease a bit.  I know I need to  take vitamins to
get potassium also for cramps, so maybe that is something to  try if you
haven't already.

Good Luck -

Stacy
Auburn, WA


[Non-text portions of this message have been removed]

I too had increased cramping since taking Gleevec back in 2001. Tried
many things but nothing really worked. Asked Doctors but got no real
solution; heck, they couldn't confirm that there was any correlation
to Gleevec.

However, I must say that my cramping has diminished in the last year
or so. The only big change has been a switch from one 400mg tablet
plus two 100mg tablets daily to 6 100mg tablets daily. Is it possible
that the composition of the larger tablet has anything to do with
it???

I will add that when I was taking the 400mg tablet I had severe
nausea 3-4 times per week; not pleasant at all!!! Since switching to
only 100mg tablets I have had nausea 3 times in 14 months. There is a
definite difference in the way these pills work even though the
contents of Gleevec is the same.





--- In Gleevec@yahoogroups.com, Freeda Berry <no1freeda@y...> wrote:
> I have asked so many people and doctores about body cramps and I
can't remember if I asked on this list if anyone else is having the
same.I don't know if its a delayed side effect of Gleevec or not.I
saw another doctor the other day and he seems to think it's
fibromyalgia.When I lay down or sit with my feet up I feel the
twitching in feet and ankles.Then the muscles begin to "pull".My feet
pull out to the side etc.
> Anyone else have this??
> Freeda
>
>
>
>
>
>
> There is 1 message in this issue.
>
> Topics in this digest:
>
> 1. Re: test
> From: "danny"
>
>
>
______________________________________________________________________
__
>
______________________________________________________________________
__
>
> Message: 1
> Date: Sun, 02 Oct 2005 13:42:31 -0000
> From: "danny"
> Subject: Re: test
>
> --- In Gleevec@yahoogroups.com, "telephonics"
> wrote:
> > test
>
> what was the question?
>
>
>
>
>
>
______________________________________________________________________
__
>
______________________________________________________________________
__
>
>
> Thank you for being a Gleevec Discussion Group Member!
> --------------------------------------------------------------------
----
> Yahoo! Groups Links
>
>
>
>
> --------------------------------------------------------------------
----
>
>
>
>
>
>
> Freeda
>
> ---------------------------------
> Yahoo! for Good
>  Click here to donate to the Hurricane Katrina relief effort.
>
> [Non-text portions of this message have been removed]

Freeda,

I had quite a problem with leg cramps, though not the kind you described.
Since taking a daily multivitamin they have gone away, though don't know if
that is the reason.

Best Wishes,

Bill Kime
----- Original Message -----
From: "Freeda Berry" <no1freeda@...>
To: <Gleevec@yahoogroups.com>
Sent: Tuesday, October 04, 2005 7:45 PM
Subject: Re: [Gleevec] Digest Number 1124


> I have asked so many people and doctores about body cramps and I can't
remember if I asked on this list if anyone else is having the same.I don't
know if its a delayed side effect of Gleevec or not.I saw another doctor the
other day and he seems to think it's fibromyalgia.When I lay down or sit
with my feet up I feel the twitching in feet and ankles.Then the muscles
begin to "pull".My feet pull out to the side etc.
> Anyone else have this??
> Freeda
>
>
>
>
>
>
> There is 1 message in this issue.
>
> Topics in this digest:
>
> 1. Re: test
> From: "danny"
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
> Date: Sun, 02 Oct 2005 13:42:31 -0000
> From: "danny"
> Subject: Re: test
>
> --- In Gleevec@yahoogroups.com, "telephonics"
> wrote:
> > test
>
> what was the question?
>
>
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
> Thank you for being a Gleevec Discussion Group Member!
> ------------------------------------------------------------------------
> Yahoo! Groups Links
>
>
>
>
> ------------------------------------------------------------------------
>
>
>
>
>
>
> Freeda
>
> ---------------------------------
> Yahoo! for Good
>  Click here to donate to the Hurricane Katrina relief effort.
>
> [Non-text portions of this message have been removed]
>
>
>
>
> Thank you for being a Gleevec Discussion Group Member!
> Yahoo! Groups Links
>
>
>
>
>
>
>
>

Freeda:
      I have also had cramps but in the line of work I  do I sweat a lot and
by adding a little extra salt on my dinner before  lying down for the night has
helped eliminate the cramps for me.  My  doctor said it wouldn't hurt me
after I had called him about the  cramps. After being diagnosed (August,2001)
with
CML I have been on  Gleevec since September and have been in full remission
since October of that  same year.  Cramps didn't start until about a year ago.
I have had  side effects of weight gain due to Thyroid malfunction (on
Levoxyl), and  for the first time just discovered (9-12-05) creatinine had risen
(no
  treatment started yet).  Talk to your doctors see what they may  say.  Good
Luck - Mark


[Non-text portions of this message have been removed]