Vision Problems

[Guest guest]

Hey,

I have what is called Occular Migraines - not painful - just bright zig-zaggy

lines of pretty colors. Doesn't happen terribly often - went to the eye doctor

and he almost popped my eye out to get a look at the back - says there's a

disturbance in the " jelly " . There's a lovely image. (no pun intended) They

haven't figured out the cause as yet.

Hope

[Guest guest]

Hi Hope!

I don't have CMT, my son does, but I get Occular Migraines! You are the first

person I've ever met who gets them...I thought my doctor was nuts when he told

me what they were. I describe mine as if I am looking through a cracked mirror

with bright rainbow lights shining from behind. They aren't painful but they

are most disturbing because I become totally blind....Imitrex best for me...what

works for you? My doc says that it has something to do with the optic

nerve...which would make sense...please keep us updated if you find the

cause....

Good luck with the heel cord extension surgery. I understand that it can be

very successful in adults!

[Guest guest]

Hope -

Like , my son has CMT, but I get Occular Migraines too, though

this is the first time I've ever been able to label it. Mine are like

an after image of a bright light, blocking my vision, and not going

away for 30-60 minutes. I've never known what they were until you put a name to

it & I was able to look it up in WebMD. They are scary when

they occur when I drive - sometimes bright lights from oncoming traffic will

kick it off & I have to look around the blockage to see the road.

I only get them once every couple of months.

Good luck with the surgery and recovery,

Jim

[Guest guest]

I didn't either, and was wondering WHAT you people were talking about, so went

to Buhner's book again and there I found it. I am sure I read it in the

beginning, but was quite forgetful back then. Still am at times. Lame brain, I

mean Lyme brain. LOL

Jim.

###

rasheedaas <rasheedaas@...> wrote:

Ah-Hah!

I didn't realize these two were the same.

" There are two classes of active compounds in lesser

periwinkle—alkaloids and tannins. The major alkaloid is known as

vincamine. "

What a pretty flower!

http://www.vitacost.com/Healthnotes/Herb/Periwinkle.aspx

ellen

[Guest guest]

I went to the Dr again today for my check up and my wbc has gone back up and is

now higher than it has ever been. It is 104,000. I have also been having some

problems with my vision in my left eye but the Dr doesn't seem to think it has

anything to do with the CML or Gleevec. I know that Gleevec can cause some

vision problems but since it is only when I first wake up and only last for

about 30 minutes, he isn't concerned. When I first wake up I can only see

straight in front of me. It's like tunnel vision. Has anyone else had this

problem taking Gleevec or is it just my vision and not related to the CML. I am

not sure I trust this Dr, he just seems that he is really not concerned.

Blessings,

[Guest guest]

This guy sounds like a cold fish. Any chance you can swap him for a better (more

empathetic!) model?

From: wendyphillips54@...

Date: Mon, 27 Jul 2009 22:34:29 +0000

Subject: [ ] Vision Problems

I went to the Dr again today for my check up and my wbc has

gone back up and is now higher than it has ever been. It is 104,000. I have also

been having some problems with my vision in my left eye but the Dr doesn't seem

to think it has anything to do with the CML or Gleevec. I know that Gleevec can

cause some vision problems but since it is only when I first wake up and only

last for about 30 minutes, he isn't concerned. When I first wake up I can only

see straight in front of me. It's like tunnel vision. Has anyone else had this

problem taking Gleevec or is it just my vision and not related to the CML. I am

not sure I trust this Dr, he just seems that he is really not concerned.

Blessings,

_________________________________________________________________

Windows Live™ SkyDrive™: Store, access, and share your photos. See how.

http://windowslive.com/Online/SkyDrive?ocid=TXT_TAGLM_WL_CS_SD_photos_072009

[Guest guest]

Hi ,

It certainly sounds like you have every reason not to trust this

doctor. It sounds like Gleevec is not working for you. Vision

problems can be caused by active cml. With a wbc of 104,000 you

certainly have active cml. Have you tried calling your local chapter

of the Leukemia Society and asking them for ideas on what to do

without insurance?

I don't recall how long you have been on Gleevec but a person should

get control of blood counts by 3 months on Gleevec. If blood counts

are not normal by 3 months a patient is generally considered to have

failed Gleevec. You should be put on one of the other drugs.

Best wishes,

Dorothy

On Jul 27, 2009, at 6:34 PM, wendyphillips54 wrote:

> I went to the Dr again today for my check up and my wbc has gone

> back up and is now higher than it has ever been. It is 104,000. I

> have also been having some problems with my vision in my left eye

> but the Dr doesn't seem to think it has anything to do with the CML

> or Gleevec. I know that Gleevec can cause some vision problems but

> since it is only when I first wake up and only last for about 30

> minutes, he isn't concerned. When I first wake up I can only see

> straight in front of me. It's like tunnel vision. Has anyone else

> had this problem taking Gleevec or is it just my vision and not

> related to the CML. I am not sure I trust this Dr, he just seems

> that he is really not concerned.

> Blessings,

>

>

>

>

[Guest guest]

Hi : So sorry your having such problems. It just seems like its something

everyday for you. I have had vision problems, but I cannot say its from

Gleevec. I have had problems with my right eye getting blurry, dizzy spells,

and eyebleeds in the right eye. The blurred vision and dizzy spells have been

going on way before my Gleevec.

I think I would like another doctor too. Hope something gets better.

[Guest guest]

Yeah, I know what you mean...I feel like a train wreck. I told my husband to

just take me out to the pasture and shoot me, lol. Of course I was joking but I

do feel like it is something different every day. Thank God I have a wonderful

husband. He is so good to me and he seems to never be aggravated because I stay

so tired and sick all the time. I am just sick and tired of being sick and

tired. If I get up feeling good then I usually overdo things and by the end of

the day, I am really hurting and exhausted. I hate to complain all the time and

I feel like that is what I am doing but I just want to know if what is going on

with me is the same that everyone else has been through.

Blessings,

From: suzzienovember <suzzienovember@...>

Subject: [ ] RE: Vision Problems

Date: Monday, July 27, 2009, 11:03 PM

 

Hi : So sorry your having such problems. It just seems like its something

everyday for you. I have had vision problems, but I cannot say its from Gleevec.

I have had problems with my right eye getting blurry, dizzy spells, and

eyebleeds in the right eye. The blurred vision and dizzy spells have been going

on way before my Gleevec.

I think I would like another doctor too. Hope something gets better.

[Guest guest]

I just made 3 months on Gleevec and my wbc has been up and down like a yo yo.

This is the highest it has ever been and now I am just scared because it's not

working. I keep thinking, what if nothing works for me! I know I should be

positive but sometimes it's just hard to be. I feel so bad all the time and I

don't think that is fair to my husband so that bothers me. Of course, he tells

me that he is here to take care of me no matter how sick I get and for me not to

worry about that or about him cause he can take care of himself but that's not

how it's supposed to be. I have not called the leukemia society but then I

didn't know there was such a thing. I really liked the Dr that saw me in the

hospital and he is partners with the Dr I am seeing now but Dr was soooo

much better than this one is. He acted more concerned and seemed to care more

about my health. He also acted like he knew more about CML. He is a little

further away than the Dr I

am seeing now but it's ok, I don't mind a 30 minute drive to feel more

comfortable about the Dr knowing what he is talking about.

Blessings,

 

> I went to the Dr again today for my check up and my wbc has gone

> back up and is now higher than it has ever been. It is 104,000. I

> have also been having some problems with my vision in my left eye

> but the Dr doesn't seem to think it has anything to do with the CML

> or Gleevec. I know that Gleevec can cause some vision problems but

> since it is only when I first wake up and only last for about 30

> minutes, he isn't concerned. When I first wake up I can only see

> straight in front of me. It's like tunnel vision. Has anyone else

> had this problem taking Gleevec or is it just my vision and not

> related to the CML. I am not sure I trust this Dr, he just seems

> that he is really not concerned.

> Blessings,

>

>

>

>

[Guest guest]

Dear ,

First you have to get that darn CML cells under control and then you will

feel better. I cant keep track of everyone and everything. Were you on

Tasigna??? Then on to Sprycel?

Take care

Sharon T

_____

From: [mailto: ] On Behalf Of

Sent: Monday, July 27, 2009 6:25 PM

Subject: Re: [ ] RE: Vision Problems

Yeah, I know what you mean...I feel like a train wreck. I told my husband to

just take me out to the pasture and shoot me, lol. Of course I was joking

but I do feel like it is something different every day. Thank God I have a

wonderful husband. He is so good to me and he seems to never be aggravated

because I stay so tired and sick all the time. I am just sick and tired of

being sick and tired. If I get up feeling good then I usually overdo things

and by the end of the day, I am really hurting and exhausted. I hate to

complain all the time and I feel like that is what I am doing but I just

want to know if what is going on with me is the same that everyone else has

been through.

Blessings,

From: suzzienovember <suzzienovember@ <mailto:suzzienovember%40>

>

Subject: [ ] RE: Vision Problems

groups (DOT) <mailto:%40> com

Date: Monday, July 27, 2009, 11:03 PM

Hi : So sorry your having such problems. It just seems like its

something everyday for you. I have had vision problems, but I cannot say its

from Gleevec. I have had problems with my right eye getting blurry, dizzy

spells, and eyebleeds in the right eye. The blurred vision and dizzy spells

have been going on way before my Gleevec.

I think I would like another doctor too. Hope something gets better.

[Guest guest]

Hi ,

I had this problem when I was diagnosed...and my counts at diagnosis were

107,000. It can happen. In my case, when I would turn on the lights, I would see

what looked like a fuzzy TV screen for a few seconds and then my vision

improved. I did follow up with an opthamologist and he did see some gunk in my

eye from the high white blood cell count.

Hopefully you can get your counts down soon and when you do, the vision

challenge should clear up.

Has your doctor ordered a mutation test yet? It sounds to me like you are

resistant to Gleevec...

Hugs,

Beth

[ ] Vision Problems

 

I went to the Dr again today for my check up and my wbc has gone back up and is

now higher than it has ever been. It is 104,000. I have also been having some

problems with my vision in my left eye but the Dr doesn't seem to think it has

anything to do with the CML or Gleevec. I know that Gleevec can cause some

vision problems but since it is only when I first wake up and only last for

about 30 minutes, he isn't concerned. When I first wake up I can only see

straight in front of me. It's like tunnel vision. Has anyone else had this

problem taking Gleevec or is it just my vision and not related to the CML. I am

not sure I trust this Dr, he just seems that he is really not concerned.

Blessings,

[Guest guest]

Hi ,

All I can say is good luck...there are lots of options out there and if the

drugs on the market don't work for you, there are trials that are showing a lot

of promise..there are options. I know how tough it is when you don't have faith

in your doctor and I remember how tough it was for you to find him, so good

luck!

Beth

Re: [ ] Vision Problems

 

I just made 3 months on Gleevec and my wbc has been up and down like a yo yo.

This is the highest it has ever been and now I am just scared because it's not

working. I keep thinking, what if nothing works for me! I know I should be

positive but sometimes it's just hard to be. I feel so bad all the time and I

don't think that is fair to my husband so that bothers me. Of course, he tells

me that he is here to take care of me no matter how sick I get and for me not

to worry about that or about him cause he can take care of himself but that's

not how it's supposed to be. I have not called the leukemia society but then I

didn't know there was such a thing. I really liked the Dr that saw me in the

hospital and he is partners with the Dr I am seeing now but Dr was soooo

much better than this one is. He acted more concerned and seemed to care more

about my health. He also acted like he knew more about CML. He is a little

further away than the Dr I

am seeing now but it's ok, I don't mind a 30 minute drive to feel more

comfortable about the Dr knowing what he is talking about.

Blessings,

 

> I went to the Dr again today for my check up and my wbc has gone

> back up and is now higher than it has ever been. It is 104,000. I

> have also been having some problems with my vision in my left eye

> but the Dr doesn't seem to think it has anything to do with the CML

> or Gleevec. I know that Gleevec can cause some vision problems but

> since it is only when I first wake up and only last for about 30

> minutes, he isn't concerned. When I first wake up I can only see

> straight in front of me. It's like tunnel vision. Has anyone else

> had this problem taking Gleevec or is it just my vision and not

> related to the CML. I am not sure I trust this Dr, he just seems

> that he is really not concerned.

> Blessings,

>

>

>

>

[Guest guest]

Yep, thinking seriously about it too!

From: Rosen Lum <rrosenlum@...>

Subject: RE: [ ] Vision Problems

Date: Monday, July 27, 2009, 10:38 PM

This guy sounds like a cold fish. Any chance you can swap him for a better (more

empathetic!) model?

From: wendyphillips54@...

Date: Mon, 27 Jul 2009 22:34:29 +0000

Subject: [ ] Vision Problems

   

                  I went to the Dr again today for my check up and my

wbc has gone back up and is now higher than it has ever been. It is 104,000. I

have also been having some problems with my vision in my left eye but the Dr

doesn't seem to think it has anything to do with the CML or Gleevec. I know that

Gleevec can cause some vision problems but since it is only when I first wake up

and only last for about 30 minutes, he isn't concerned. When I first wake up I

can only see straight in front of me. It's like tunnel vision. Has anyone else

had this problem taking Gleevec or is it just my vision and not related to the

CML. I am not sure I trust this Dr, he just seems that he is really not

concerned.

Blessings,

     

   

   

   

   

   

   

   

   

   

_________________________________________________________________

Windows Liveâ„¢ SkyDriveâ„¢: Store, access, and share your photos. See how.

http://windowslive.com/Online/SkyDrive?ocid=TXT_TAGLM_WL_CS_SD_photos_072009

[Guest guest]

when I was first diagnosed I had a white spot in the back of my eye. Due to the

leukemia. In about two weeks time it finally went away. I never saw it but the

Dr's were all fascinated about it because they had never seen it but knew it was

associated with CML. Both my children also looked with the Dr light thingy and

saw it as well.

________________________________

From: <wendyphillips54@...>

Sent: Monday, July 27, 2009 9:26:45 PM

Subject: RE: [ ] Vision Problems

Yep, thinking seriously about it too!

From: Rosen Lum <rrosenlumhotmail (DOT) com>

Subject: RE: [ ] Vision Problems

groups (DOT) com

Date: Monday, July 27, 2009, 10:38 PM

This guy sounds like a cold fish. Any chance you can swap him for a better (more

empathetic!) model?

groups (DOT) com

From: wendyphillips54

Date: Mon, 27 Jul 2009 22:34:29 +0000

Subject: [ ] Vision Problems

I went to the Dr again today for my check up and my wbc has

gone back up and is now higher than it has ever been. It is 104,000. I have also

been having some problems with my vision in my left eye but the Dr doesn't seem

to think it has anything to do with the CML or Gleevec. I know that Gleevec can

cause some vision problems but since it is only when I first wake up and only

last for about 30 minutes, he isn't concerned. When I first wake up I can only

see straight in front of me. It's like tunnel vision. Has anyone else had this

problem taking Gleevec or is it just my vision and not related to the CML. I am

not sure I trust this Dr, he just seems that he is really not concerned.

Blessings,

____________ _________ _________ _________ _________ _________ _

Windows Liveâ„¢ SkyDriveâ„¢: Store, access, and share your photos. See how.

http://windowslive. com/Online/ SkyDrive? ocid=TXT_ TAGLM_WL_ CS_SD_photos_

072009

[Guest guest]

,

I feel the exact same way..Hate to complain but feel like I always am..

SharonS

In , <wendyphillips54@...> wrote:

>

> Yeah, I know what you mean...I feel like a train wreck. I told my husband to

just take me out to the pasture and shoot me, lol. Of course I was joking but I

do feel like it is something different every day. Thank God I have a wonderful

husband. He is so good to me and he seems to never be aggravated because I stay

so tired and sick all the time. I am just sick and tired of being sick and

tired. If I get up feeling good then I usually overdo things and by the end of

the day, I am really hurting and exhausted. I hate to complain all the time and

I feel like that is what I am doing but I just want to know if what is going on

with me is the same that everyone else has been through.

> Blessings,

>

>

>

>

>

> From: suzzienovember <suzzienovember@...>

> Subject: [ ] RE: Vision Problems

>

> Date: Monday, July 27, 2009, 11:03 PM

>

>

>  

>

>

>

> Hi : So sorry your having such problems. It just seems like its something

everyday for you. I have had vision problems, but I cannot say its from Gleevec.

I have had problems with my right eye getting blurry, dizzy spells, and

eyebleeds in the right eye. The blurred vision and dizzy spells have been going

on way before my Gleevec.

> I think I would like another doctor too. Hope something gets better.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I still feel somewhat fatigued but I get up around 7:30 a.m. and I'm up all day

a good five days out of the week. I conk out around 10 p.m.

With Gleevec I would wake up around 9:30 a.m. and crash out around 11 a.m. or

so, sleeping a good three or four hours mid-day. I also struggled with a

terrible depression that would lift in the evenings.

I will be very interested to learn whether you have a better time of it on

Sprycel! Hang in there!

From: evaob365@...

Date: Tue, 28 Jul 2009 15:29:53 -0400

Subject: Re: [ ] Re: Vision Problems

I am starting 100 mg Sprycel on Monday , I hope I have an

easy time with it

.. I am so tired. Fingers crossed and prayers for everyone!!!

Eva

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

From: " Rosen Lum " <rrosenlum@...>

Sent: Tuesday, July 28, 2009 1:27 PM

< >

Subject: RE: [ ] Re: Vision Problems

>

> FWIW, I have far fewer side effects on Sprycel than I did on Gleevec.

>

>

> From: serenitywon@...

> Date: Tue, 28 Jul 2009 00:47:25 +0000

> Subject: [ ] Re: Vision Problems

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> ,

>

> I have had vision prolems since starting Gleevec..It gets worse if I

> miss a few days in a row of my Lasix..I now wear glasses and never had

> issues before Gleevec..I start Sprycel tonight and am hoping I don't have

> as many health issues/side effects with this drug as I have had with

> Gleevec..I am scared to start this new med as I dread nausea and have a

> lapband which vomiting can cause severe problems for me and my band

> health.I guess I just worry to much..I am afraid of the unknown with

> Gleevec I already know how crappy I will feel..lol

>

> Hope you feel better soon..

>

> SharonS Did you see that free Medical Link I sent Yesterday..If I

> remember correctly you have no insurance so this may help you..

>

>

>

> - In , " wendyphillips54 " <wendyphillips54@...> wrote:

>

>>

>

>> I went to the Dr again today for my check up and my wbc has gone back up

>> and is now higher than it has ever been. It is 104,000. I have also been

>> having some problems with my vision in my left eye but the Dr doesn't

>> seem to think it has anything to do with the CML or Gleevec. I know that

>> Gleevec can cause some vision problems but since it is only when I first

>> wake up and only last for about 30 minutes, he isn't concerned. When I

>> first wake up I can only see straight in front of me. It's like tunnel

>> vision. Has anyone else had this problem taking Gleevec or is it just my

>> vision and not related to the CML. I am not sure I trust this Dr, he just

>> seems that he is really not concerned.

>

>> Blessings,

>

>>

>

>>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> __________________________________________________________

> Windows LiveT Hotmail®: Search, add, and share the web's latest sports

> videos. Check it out.

>

http://www.windowslive.com/Online/Hotmail/Campaign/QuickAdd?ocid=TXT_TAGLM_WL_QA\

_HM_sports_videos_072009 & cat=sports

>

>

[Guest guest]

Eva

Have been on Spryicel  70 mg for a few months with some  body rash.  Sure you

will do well on your 100 mg dose.

Halff

>

>>

>

>> I went to the Dr again today for my check up and my wbc has gone back up

>> and is now higher than it has ever been. It is 104,000. I have also been

>> having some problems with my vision in my left eye but the Dr doesn't

>> seem to think it has anything to do with the CML or Gleevec. I know that

>> Gleevec can cause some vision problems but since it is only when I first

>> wake up and only last for about 30 minutes, he isn't concerned. When I

>> first wake up I can only see straight in front of me. It's like tunnel

>> vision. Has anyone else had this problem taking Gleevec or is it just my

>> vision and not related to the CML. I am not sure I trust this Dr, he just

>> seems that he is really not concerned.

>

>> Blessings,

>

>>

>

>>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> ____________ _________ _________ _________ _________ _________ _

> Windows LiveT Hotmail®: Search, add, and share the web's latest sports

> videos. Check it out.

> http://www.windowsl ive.com/Online/ Hotmail/Campaign /QuickAdd? ocid=TXT_

TAGLM_WL_ QA_HM_sports_ videos_072009 & cat=sports

>

>

[Guest guest]

,

Thanks for sharing that..I'm hoping for the same..

SharonS

In , Rosen Lum <rrosenlum@...> wrote:

>

>

> FWIW, I have far fewer side effects on Sprycel than I did on Gleevec.

[Guest guest]

Eva,

I started 100mg of Sprycel Last night after taking Gleevec for over 1 year.I

will keep my fingers crossed that we both have fewer side effects with Sprycel

than Gleevec..Good luck to you..

SharonS

In , " Eva " <evaob365@...> wrote:

>

> I am starting 100 mg Sprycel on Monday , I hope I have an easy time with it

> . I am so tired. Fingers crossed and prayers for everyone!!!

> Eva

>

[Guest guest]

I have been on Sprycel for 2 years 90 mg daily. The most of the side effects do

go away. I still get bumps in my scalp that are size of a pin head and rather

tender to touch but only a day or two and only couple at a time. But it does

cause acne. which is not pleasant. If you can not mes with it it will go away

eventually. I also have noticed that when i get a scratch or cut it takes almost

a month for it to heal.

Skin dryness was real bad for over a year whole body flaking. I have found that

Vaseline intensive rescue is the best. And I have tried almost everything

available. And of course the nasty weight gain.

Good luck to you all, and God Bless you

Anita

________________________________

From: Halff Phast <halfphast@...>

Sent: Tuesday, July 28, 2009 8:28:13 PM

Subject: Re: [ ] Re: Vision Problems

Eva

Have been on Spryicel 70 mg for a few months with some body rash. Sure you

will do well on your 100 mg dose.

Halff

>

>>

>

>> I went to the Dr again today for my check up and my wbc has gone back up

>> and is now higher than it has ever been. It is 104,000. I have also been

>> having some problems with my vision in my left eye but the Dr doesn't

>> seem to think it has anything to do with the CML or Gleevec. I know that

>> Gleevec can cause some vision problems but since it is only when I first

>> wake up and only last for about 30 minutes, he isn't concerned. When I

>> first wake up I can only see straight in front of me. It's like tunnel

>> vision. Has anyone else had this problem taking Gleevec or is it just my

>> vision and not related to the CML. I am not sure I trust this Dr, he just

>> seems that he is really not concerned.

>

>> Blessings,

>

>>

>

>>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> ____________ _________ _________ _________ _________ _________ _

> Windows LiveT Hotmail®: Search, add, and share the web's latest sports

> videos. Check it out.

> http://www.windowsl ive.com/Online/ Hotmail/Campaign /QuickAdd? ocid=TXT_

TAGLM_WL_ QA_HM_sports_ videos_072009 & cat=sports

>

>

[Guest guest]

Yes, I take it every night along with all my other meds so I DON'T forget to

take it. I don't know why it's not working for me but I know it is not because I

am not taking it. My PA called me today and said they got the Gleevec level back

and it looks like I am not even taking the med. Wouldn't that be like writing my

own death sentence if I didn't take it. I am not ready to die, I have

grandchildren that I would like to see grow up!  I guess they are gonna do

another Gleevec level on me one day. She was supposed to call me back today but

I haven't heard from her yet!

>

> > I went to the Dr again today for my check up and my wbc has gone

> > back up and is now higher than it has ever been. It is 104,000. I

> > have also been having some problems with my vision in my left eye

> > but the Dr doesn't seem to think it has anything to do with the CML

> > or Gleevec. I know that Gleevec can cause some vision problems but

> > since it is only when I first wake up and only last for about 30

> > minutes, he isn't concerned. When I first wake up I can only see

> > straight in front of me. It's like tunnel vision. Has anyone else

> > had this problem taking Gleevec or is it just my vision and not

> > related to the CML. I am not sure I trust this Dr, he just seems

> > that he is really not concerned.

> > Blessings,

> >

> >

> >

> >

>

>

[Guest guest]

,

Maybe you should not take Gleevec with your other meds, should there be a case

of drug interaction. Do you take your Gleevec with plenty of water too!

Dory Doggie

________________________________

From: <wendyphillips54@...>

Sent: Tuesday, July 28, 2009 11:42:03 PM

Subject: Re: [ ] Vision Problems

Yes, I take it every night along with all my other meds so I DON'T forget to

take it. I don't know why it's not working for me but I know it is not because I

am not taking it. My PA called me today and said they got the Gleevec level back

and it looks like I am not even taking the med. Wouldn't that be like writing my

own death sentence if I didn't take it. I am not ready to die, I have

grandchildren that I would like to see grow up! I guess they are gonna do

another Gleevec level on me one day. She was supposed to call me back today but

I haven't heard from her yet!

>

> > I went to the Dr again today for my check up and my wbc has gone

> > back up and is now higher than it has ever been. It is 104,000. I

> > have also been having some problems with my vision in my left eye

> > but the Dr doesn't seem to think it has anything to do with the CML

> > or Gleevec. I know that Gleevec can cause some vision problems but

> > since it is only when I first wake up and only last for about 30

> > minutes, he isn't concerned. When I first wake up I can only see

> > straight in front of me. It's like tunnel vision. Has anyone else

> > had this problem taking Gleevec or is it just my vision and not

> > related to the CML. I am not sure I trust this Dr, he just seems

> > that he is really not concerned.

> > Blessings,

> >

> >

> >

> >

>

>

[Guest guest]

,

Have you been checked for an malabsorption problems? I have Celiac

Sprue, and was not able to maintain my iron levels and a few

others. Just a thought. Check with your doctor to see if there may

be another underlying problem besides CML.

On Jul 29, 2009, at 12:42 AM, wrote:

> Yes, I take it every night along with all my other meds so I DON'T

> forget to take it. I don't know why it's not working for me but I

> know it is not because I am not taking it. My PA called me today and

> said they got the Gleevec level back and it looks like I am not even

> taking the med. Wouldn't that be like writing my own death sentence

> if I didn't take it. I am not ready to die, I have grandchildren

> that I would like to see grow up! I guess they are gonna do another

> Gleevec level on me one day. She was supposed to call me back today

> but I haven't heard from her yet!

>

>

>

> >

> > > I went to the Dr again today for my check up and my wbc has gone

> > > back up and is now higher than it has ever been. It is 104,000. I

> > > have also been having some problems with my vision in my left eye

> > > but the Dr doesn't seem to think it has anything to do with the

> CML

> > > or Gleevec. I know that Gleevec can cause some vision problems but

> > > since it is only when I first wake up and only last for about 30

> > > minutes, he isn't concerned. When I first wake up I can only see

> > > straight in front of me. It's like tunnel vision. Has anyone else

> > > had this problem taking Gleevec or is it just my vision and not

> > > related to the CML. I am not sure I trust this Dr, he just seems

> > > that he is really not concerned.

> > > Blessings,

> > >

> > >

> > >

> > >

> >

> >

[Guest guest]

I agree with Dory-I would not take my gleevec at the same time as the other

meds. I would have thought the Dr. would have told you that.

Sharon T

_____

From: [mailto: ] On Behalf Of Dory

Doggie

Sent: Tuesday, July 28, 2009 10:49 PM

Subject: Re: [ ] Vision Problems

,

Maybe you should not take Gleevec with your other meds, should there be a

case

of drug interaction. Do you take your Gleevec with plenty of water too!

Dory Doggie

________________________________

From: <wendyphillips54@ <mailto:wendyphillips54%40>

>

groups (DOT) <mailto:%40> com

Sent: Tuesday, July 28, 2009 11:42:03 PM

Subject: Re: [ ] Vision Problems

Yes, I take it every night along with all my other meds so I DON'T forget to

take it. I don't know why it's not working for me but I know it is not

because I am not taking it. My PA called me today and said they got the

Gleevec level back and it looks like I am not even taking the med. Wouldn't

that be like writing my own death sentence if I didn't take it. I am not

ready to die, I have grandchildren that I would like to see grow up! I guess

they are gonna do another Gleevec level on me one day. She was supposed to

call me back today but I haven't heard from her yet!

>

> > I went to the Dr again today for my check up and my wbc has gone

> > back up and is now higher than it has ever been. It is 104,000. I

> > have also been having some problems with my vision in my left eye

> > but the Dr doesn't seem to think it has anything to do with the CML

> > or Gleevec. I know that Gleevec can cause some vision problems but

> > since it is only when I first wake up and only last for about 30

> > minutes, he isn't concerned. When I first wake up I can only see

> > straight in front of me. It's like tunnel vision. Has anyone else

> > had this problem taking Gleevec or is it just my vision and not

> > related to the CML. I am not sure I trust this Dr, he just seems

> > that he is really not concerned.

> > Blessings,

> >

> >

> >

> >

>

>