Re: Been on Gleevec for 7.5 years

[Guest guest]

Hi:  I have been on 400mg. Gleevec for 9 years last month.  I have had side

effects all these years, but nothing I have not been able to deal with.  I

still suffer with the fatigue, and occasional foot and hand cramps, anemia,

weight gain, a few eyebleeds.

I still feel blessed to be on the Gleevec.  I was diagnosed in 1998, and I

started out on the traditional Interferon Shots and Ara-C Shots combination.

    Its so good when we hear about others who have been doing so good for so

long.

A

From: dsgold1 <davidgolden@...>

Subject: [ ] Been on Gleevec for 7.5 years

Date: Tuesday, November 10, 2009, 3:50 PM

 

Hi,I joined this group over 7 years ago,this is the first time I've posted.I

have been on Gleevec for over 7 years now with very few side effects.who in this

group has been on Gleevec this long or longer,and are you having any long term

side effects.Just wondering.

[Guest guest]

,

I did have those painful and annoying eye bleeds, nausea, bone pain, hair loss

and ear drainage. However, I don't like taking more medication to rid me of

these side effects, so I made numerous visits to an Acupuncturist and got rid of

all the annoying symptoms, by have Acupuncture, taking Chinese herbs, and having

other modalities, and massages!

Now I live a perfect life, and still on Gleevec 400 mgs. I have been on Gleevec

for 8 years, however, I was diagnose, back in Nov. 2000. Gleevec was not

available until 2001. So I got stuck on Interferon. That was a Cmler's night-

mare!

Dory Doggie

________________________________

From: dsgold1 <davidgolden@...>

Sent: Tue, November 10, 2009 2:50:13 PM

Subject: [ ] Been on Gleevec for 7.5 years

Hi,I joined this group over 7 years ago,this is the first time I've posted.I

have been on Gleevec for over 7 years now with very few side effects.who in this

group has been on Gleevec this long or longer,and are you having any long term

side effects.Just wondering.

[Guest guest]

Keep getting regular checks. After 9 years on gleevec it lost its effectiveness.

I switched to sprycel and am responding.

Sent from my iPhone

On Nov 10, 2009, at 3:50 PM, " dsgold1 " <davidgolden@...> wrote:

Hi,I joined this group over 7 years ago,this is the first time I've posted.I

have been on Gleevec for over 7 years now with very few side effects.who in this

group has been on Gleevec this long or longer,and are you having any long term

side effects.Just wondering.

[Guest guest]

Hi all,

I have been on 300mg. of Gleevec for most of 8 and 1/2 years. I maintain a

physically active lifestyle, allowing for some periods of fatigue, occasional

foot, leg, trunk and hand cramps and minor nausea and diarrhea. I have had

digestive problems since my early days of weekly Pegylated Interferon and daily

Ara C. My appetite and difficulties with nausea and diarhea are better on the

lower Gleevec dose, but it took months for it to subside after stopping

interferon and Ara C and after reducing my gleevec dose. My gleevec dosage was

increased to 600mg, then reduced to 400mg for about a year period in 2006 after

one elevated PCR (now I know I would never agree to a change until there are at

least two tests confirming the increase). I had much more fatigue, weakness, a

sub dural bleed and digestive side effects on the higher dose. I feel lucky to

be doing so well now. I ski, bicycle and hike. We have been so lucky to have

access to gleevec and this knowledgeable group these last 10 years (especially

since at dx we were only expected to live an ave. of 5 yrs with a maximum of

10). Although I don't write often, you're all my heroes and I'm honored to

still be part of this wonderful group.

Fran from Alaska

>

>

> From: dsgold1 <davidgolden@...>

> Subject: [ ] Been on Gleevec for 7.5 years

>

> Date: Tuesday, November 10, 2009, 3:50 PM

>

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>  

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> Hi,I joined this group over 7 years ago,this is the first time I've posted.I

have been on Gleevec for over 7 years now with very few side effects.who in this

group has been on Gleevec this long or longer,and are you having any long term

side effects.Just wondering.

>

>

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>

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[Guest guest]

I've been on gleevec since June of 2001. The only side effects I have

are puffy eyes, weight gain, and some edema of the legs.

On Nov 10, 2009, at 3:50 PM, dsgold1 wrote:

> Hi,I joined this group over 7 years ago,this is the first time I've

> posted.I have been on Gleevec for over 7 years now with very few

> side effects.who in this group has been on Gleevec this long or

> longer,and are you having any long term side effects.Just wondering.

>

>

[Guest guest]

It will be 6 years for me on the 25th of this month. They only side effects I

have is puffy eyes, I still get tired, and sometimes a little nausea after

taking the meds.

>

> > Hi,I joined this group over 7 years ago,this is the

> first time I've 

> > posted.I have been on Gleevec for over 7 years now

> with very few 

> > side effects.who in this group has been on Gleevec

> this long or 

> > longer,and are you having any long term side

> effects.Just wondering.

> >

> >

>

>

>

>

[Guest guest]

Hi dsgold1 ,

I'm on gleevec since almost 7 years and I always have the common side effects :

fatigue, foot and hand cramps, anemia, eyebleeds and

diarrhea .

I still have a very good quality of life and very happy to be here .

Emile

#527 Zavie's Club

[ ] Been on Gleevec for 7.5 years

Hi,I joined this group over 7 years ago,this is the first time I've posted.I

have been on Gleevec for over 7 years now with very few side effects.who in this

group has been on Gleevec this long or longer,and are you having any long term

side effects.Just wondering.

[Guest guest]

My mum almost 7 years on gleevec, with the same side effects all of you have

mentioned, but now she is suffering with her stomach, nausea very often and

sometimes vomiting, too.

but she is PCRU

From: Beverly Blair

Sent: Wednesday, November 11, 2009 1:17 PM

Subject: Re: [ ] Been on Gleevec for 7.5 years

Keep getting regular checks. After 9 years on gleevec it lost its effectiveness.

I switched to sprycel and am responding.

Sent from my iPhone

On Nov 10, 2009, at 3:50 PM, " dsgold1 " <davidgolden@...> wrote:

Hi,I joined this group over 7 years ago,this is the first time I've posted.I

have been on Gleevec for over 7 years now with very few side effects.who in this

group has been on Gleevec this long or longer,and are you having any long term

side effects.Just wondering.

[Guest guest]

Emile & All

 

6.5 years @ 51 years old.   Some edema in the eyes - foot cramps after sports

and some chest discomfort - kind of like a bone pain.    Also - I take my

gleevec with dinner and if I eat late I do get some digestive distress at night.

But I live a normal life and enjoy it every day!

 

Emile - glad to know you are happy to be " t " here!  Must be nice place!!

 

All the best

From: Émile Fichault <ficho@...>

Subject: Re: [ ] Been on Gleevec for 7.5 years

Date: Wednesday, November 11, 2009, 6:53 PM

 

Hi dsgold1 ,

I'm on gleevec since almost 7 years and I always have the common side effects :

fatigue, foot and hand cramps, anemia, eyebleeds and

diarrhea .

I still have a very good quality of life and very happy to be here .

Emile

#527 Zavie's Club

[ ] Been on Gleevec for 7.5 years

Hi,I joined this group over 7 years ago,this is the first time I've posted.I

have been on Gleevec for over 7 years now with very few side effects.who in this

group has been on Gleevec this long or longer,and are you having any long term

side effects.Just wondering.