Re: Burning sensation from stomach and Poor appetite

[Guest guest]

Hello Jams, I am sorry your father has these side effects, but they are a part

of being on Gleevec.  I am no longer on Gleevec, but when I was my doctor

prescribed something for the stomach, like Prevacid, or Nexium.  Not to take

within 2 hrs. of Gleevec.

Also, for some reason, it has been noticed that people with darker skin may get

lighter in spots, and just the opposite with fair skin, I got dark spots.  Very

strange.

I am afraid until a cure is found you father will be on medication for the rest

of his life.  But that is not so bad, if he cannot stand the side effects of

Gleevec maybe his doctor can change his drug, there are several out there. 

When I was dx, 16 yrs. ago, we only had about 5 years to live.  today with the

new drugs, they no longer put a year on it, we can live normally for years. 

Sometimes it takes a while to get used to any of the drugs, but the good part

is, we are alive to complain about it.....I don't know where you live and what

is available, but in the U.S, we can get Tasigna, and Sprycel , perhaps you can

look into that.  Good luck , Bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: Jamshid <jamshid98@...>

Subject: [ ] Burning sensation from stomach and Poor appetite

Date: Wednesday, March 16, 2011, 4:45 AM

 

Dear Friends,

My Father(73 yrs) has been Dx CML 1.5 years back since then he is on Gleevec.

Initially Dr prescribed 400Mg but his blood count was getting decreased after 4

months Dr. changed to 300mg. He is doing well since the change apart from some

issues. Most of the days he used to tell about burning sensation from stomach

and Poor appetite. Skin become very pale since the treatment. Everyone in my

family feel sad when he was talking about stomach probelm , he dont show no

interest in what ever food. ( He was a great food lover before this disease

).. When the probelm with stomach getting high dr used to prescribe some other

drug and gets little relief..

Is it a common probelm with gleevec?

And a person have CML has to take medicine (gleevec or any other medicines like

this) life long?

Waiting all your friends reply.

Thx,

Jams

[Guest guest]

Dear Jams,

I was taking Gleevec 7 years ago for 2 years. I remember working full time at

the beginning. After work I would be so tired and also a very sore stomach that

all I wanted to do was lay down. I would get up only to get ready for bed.

Eventually I had to cut back on my work hours to parttime, but then I switched

drugs and felt better. So please know that your dad does have more choices

today, as Bobby said.  I took Prevacid for MANY years. I still do if I need to.

 

Hope this helps.

Jackie S.

From: Jamshid <jamshid98@...>

Subject: [ ] Burning sensation from stomach and Poor appetite

Date: Wednesday, March 16, 2011, 3:45 AM

 

Dear Friends,

My Father(73 yrs) has been Dx CML 1.5 years back since then he is on Gleevec.

Initially Dr prescribed 400Mg but his blood count was getting decreased after 4

months Dr. changed to 300mg. He is doing well since the change apart from some

issues. Most of the days he used to tell about burning sensation from stomach

and Poor appetite. Skin become very pale since the treatment. Everyone in my

family feel sad when he was talking about stomach probelm , he dont show no

interest in what ever food. ( He was a great food lover before this disease

).. When the probelm with stomach getting high dr used to prescribe some other

drug and gets little relief..

Is it a common probelm with gleevec?

And a person have CML has to take medicine (gleevec or any other medicines like

this) life long?

Waiting all your friends reply.

Thx,

Jams

[Guest guest]

Jams,

It must be sad for all of you to watch him go from a man who loved a good

meal to one who has no appetite. All drugs have some side effects, but the

ones you describe sound pretty serious.

I'd forgotten how Gleevec can make your skin so pale! I appreciate Gleevec

for keeping me alive, but I have felt much better and more energetic since

switching to another drug. I would suggest your father ask his doctor about

switching to one of the newer drugs too. Maybe Sprycel? Of course, some

people seem to get over the side effects with Gleevec -- although usually it

seems like if that is going to happen, it is within just a few months.

Very best of luck to your father. He is blessed to have such a caring

family.

Best,

in San Francisco

Please let us know how it goes!

On Wed, Mar 16, 2011 at 1:45 AM, Jamshid <jamshid98@...> wrote:

>

>

> Dear Friends,

>

> My Father(73 yrs) has been Dx CML 1.5 years back since then he is on

> Gleevec.

> Initially Dr prescribed 400Mg but his blood count was getting decreased

> after 4

> months Dr. changed to 300mg. He is doing well since the change apart from

> some

> issues. Most of the days he used to tell about burning sensation from

> stomach

> and Poor appetite. Skin become very pale since the treatment. Everyone in

> my

> family feel sad when he was talking about stomach probelm , he dont show no

>

> interest in what ever food. ( He was a great food lover before this disease

>

> ).. When the probelm with stomach getting high dr used to prescribe some

> other

> drug and gets little relief..

> Is it a common probelm with gleevec?

> And a person have CML has to take medicine (gleevec or any other medicines

> like

> this) life long?

>

> Waiting all your friends reply.

>

> Thx,

> Jams

>

>

[Guest guest]

Dear Jams,

What the others have said is all true. Gleevec does have some unpleasant

side-effects for some people. Many can just deal with these issues one at a

time. For some, like me, most will go away with time. Others have to change

medications, usually because of the effects on the blood.

I am concerned to hear the the doctor reduced your father's dose to 300mg.

This is too low!!! 400mg is the lowest it should ever go. It sounds like the

doctor is not very knowledgeable about Gleevec. Low blood counts are normal,

especially in the early stages of treatment. There are guidelines for

doctors to know just how low is acceptable. Before Gleevec, with old

chemo-therapy these counts would indicate that the patient is in danger...

but not with Gleevec, they are a normal part of the process. You may need to

find a specialist who has experience with this medication.

Troxel

dx 2/2003

On Wed, Mar 16, 2011 at 1:45 AM, Jamshid <jamshid98@...> wrote:

>

>

> Dear Friends,

>

> My Father(73 yrs) has been Dx CML 1.5 years back since then he is on

> Gleevec.

> Initially Dr prescribed 400Mg but his blood count was getting decreased

> after 4

> months Dr. changed to 300mg. He is doing well since the change apart from

> some

> issues. Most of the days he used to tell about burning sensation from

> stomach

> and Poor appetite. Skin become very pale since the treatment. Everyone in

> my

> family feel sad when he was talking about stomach probelm , he dont show no

>

> interest in what ever food. ( He was a great food lover before this disease

>

> ).. When the probelm with stomach getting high dr used to prescribe some

> other

> drug and gets little relief..

> Is it a common probelm with gleevec?

> And a person have CML has to take medicine (gleevec or any other medicines

> like

> this) life long?

>

> Waiting all your friends reply.

>

> Thx,

> Jams

>

>

[Guest guest]

Dear friends,

Thanks for all your reply. I am a member of this group since when my father has

dx CML and you people helped me a lot to find the answers which even normal dr's

can't.

Lottie, am living in India and the Doctor is a well known oncologist in my area

(trained from MDAAC). I will have a talk with Doctor (next we are gonna meet up)

about other drugs. Yes the company which I am working provides a good medical

insurance coverage (we have choice of drugs which doctors prescribes) for me and

my family.

the problem is he took only fried egg with a small glass of water along with

Gleevec in the night. When we compelled also he won’t. He is telling

he doesn't feel eating and don’t have any taste on whatever food.

He felt very depressed after dx and once he told me , " You know am telling you

only 10% of stress and pain which am going through " , that made me cry. you know

,he was such a bold and enthusiastic man I have ever seen my life, but after Dx

he always in sad and sometimes back asked me " Can god give this much disease to

a man? " .(He has undergone angioplasty long time back and taking drugs for that

too.. ).

, what you told is absolutely correct. Its minimum is 400mg. But he had a

lot of issues when he was on 400mg. So Dr suggested 300mg and I heard many times

while Doctor talking with his other fellow colleagues 400 was not taking effect

to my dad becuase of age and some other factors. Now he is doing well with

300mg.

“but the good part is, we are alive to complain about it " Bobby I read this

like many times the word was so touching and made me happy.

Thanks and Jackie for your reply. Thanks a lot all dear members Love you

a lot.

Will keep posted once I meet up the doctor next week.

Jams

________________________________

From: ROBERTA DOYLE <rcd1929@...>

Sent: Wed, March 16, 2011 4:48:52 PM

Subject: Re: [ ] Burning sensation from stomach and Poor appetite

Hello Jams, I am sorry your father has these side effects, but they are a part

of being on Gleevec. I am no longer on Gleevec, but when I was my doctor

prescribed something for the stomach, like Prevacid, or Nexium. Not to take

within 2 hrs. of Gleevec.

Also, for some reason, it has been noticed that people with darker skin may get

lighter in spots, and just the opposite with fair skin, I got dark spots. Very

strange.

I am afraid until a cure is found you father will be on medication for the rest

of his life. But that is not so bad, if he cannot stand the side effects of

Gleevec maybe his doctor can change his drug, there are several out there. When

I was dx, 16 yrs. ago, we only had about 5 years to live. today with the new

drugs, they no longer put a year on it, we can live normally for years.

Sometimes it takes a while to get used to any of the drugs, but the good part

is, we are alive to complain about it.....I don't know where you live and what

is available, but in the U.S, we can get Tasigna, and Sprycel , perhaps you can

look into that. Good luck , Bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: Jamshid <jamshid98@...>

Subject: [ ] Burning sensation from stomach and Poor appetite

Date: Wednesday, March 16, 2011, 4:45 AM

Dear Friends,

My Father(73 yrs) has been Dx CML 1.5 years back since then he is on Gleevec.

Initially Dr prescribed 400Mg but his blood count was getting decreased after 4

months Dr. changed to 300mg. He is doing well since the change apart from some

issues. Most of the days he used to tell about burning sensation from stomach

and Poor appetite. Skin become very pale since the treatment. Everyone in my

family feel sad when he was talking about stomach probelm , he dont show no

interest in what ever food. ( He was a great food lover before this disease

).. When the probelm with stomach getting high dr used to prescribe some other

drug and gets little relief..

Is it a common probelm with gleevec?

And a person have CML has to take medicine (gleevec or any other medicines like

this) life long?

Waiting all your friends reply.

Thx,

Jams

[Guest guest]

Hi Jams, I am not on Gleevec anymore, but when I was, at one point, I was

on 800 mg a day. Each pill was 100 mg. I would eat a little, take a

pill. Eat some more, and take a pill. We called it a " Gleevec Sandwich " ,

and it worked for me, and several others, to help keep nausea away. Perhaps

your dad could try that, and if he ate more he would feel better.

Having any kind of cancer can be depressing, especially for us older people,

I am 81, but there is no need to be depressed with CML today, as it is not

necessary to have surgery, or extensive chemotherapy or radiation. If

eating properly and taking Gleevec does not work, I am sure he will do

better on another drug. Good luck, Bobby

On Sat, Mar 19, 2011 at 8:17 AM, Jamshid <jamshid98@...> wrote:

>

>

>

>

> Dear friends,

>

> Thanks for all your reply. I am a member of this group since when my father

> has

> dx CML and you people helped me a lot to find the answers which even normal

> dr's

> can't.

>

> Lottie, am living in India and the Doctor is a well known oncologist in my

> area

> (trained from MDAAC). I will have a talk with Doctor (next we are gonna

> meet up)

> about other drugs. Yes the company which I am working provides a good

> medical

> insurance coverage (we have choice of drugs which doctors prescribes) for

> me and

> my family.

>

> the problem is he took only fried egg with a small glass of water along

> with

> Gleevec in the night. When we compelled also he won’t. He is telling

> he doesn't feel eating and don’t have any taste on whatever food.

>

> He felt very depressed after dx and once he told me , " You know am telling

> you

> only 10% of stress and pain which am going through " , that made me cry. you

> know

> ,he was such a bold and enthusiastic man I have ever seen my life, but

> after Dx

> he always in sad and sometimes back asked me " Can god give this much

> disease to

> a man? " .(He has undergone angioplasty long time back and taking drugs for

> that

> too.. ).

>

> , what you told is absolutely correct. Its minimum is 400mg. But he

> had a

> lot of issues when he was on 400mg. So Dr suggested 300mg and I heard many

> times

> while Doctor talking with his other fellow colleagues 400 was not taking

> effect

> to my dad becuase of age and some other factors. Now he is doing well with

> 300mg.

>

> “but the good part is, we are alive to complain about it " Bobby I read this

>

> like many times the word was so touching and made me happy.

>

> Thanks and Jackie for your reply. Thanks a lot all dear members

> Love you

> a lot.

>

> Will keep posted once I meet up the doctor next week.

>

> Jams

>

>

>

>

>

>

> ________________________________

> From: ROBERTA DOYLE <rcd1929@...>

>

> Sent: Wed, March 16, 2011 4:48:52 PM

> Subject: Re: [ ] Burning sensation from stomach and Poor appetite

>

> Hello Jams, I am sorry your father has these side effects, but they are a

> part

> of being on Gleevec. I am no longer on Gleevec, but when I was my doctor

> prescribed something for the stomach, like Prevacid, or Nexium. Not to take

>

> within 2 hrs. of Gleevec.

> Also, for some reason, it has been noticed that people with darker skin may

> get

> lighter in spots, and just the opposite with fair skin, I got dark spots.

> Very

> strange.

> I am afraid until a cure is found you father will be on medication for the

> rest

> of his life. But that is not so bad, if he cannot stand the side effects of

>

> Gleevec maybe his doctor can change his drug, there are several out there.

> When

> I was dx, 16 yrs. ago, we only had about 5 years to live. today with the

> new

> drugs, they no longer put a year on it, we can live normally for years.

> Sometimes it takes a while to get used to any of the drugs, but the good

> part

> is, we are alive to complain about it.....I don't know where you live and

> what

> is available, but in the U.S, we can get Tasigna, and Sprycel , perhaps you

> can

> look into that. Good luck , Bobby

>

> a ( Bobby ) Doyle, dob 12/17/29

> DX 5/1995

> Interferon 9 weeks/Hydroxyurea 5 years

> 02/2000 to 06/2002 Gleevec trial, OHSU

> 06/2002 Gleevec/Trisenox Trial, OHSU

> 06/2003 Gleevec/Zarnestra Trial, OHSU

> 04/2004 Sprycel Trial, MDACC, CCR in 10 months

> 04/2008 XL228 Trial, U of Mich.

> 01/2009 PCR 5.69

> 04/2009 Ariad Trial AP24534

> 09/2009 PCR 0.01

> 11/2009 PCR 0.034

> 02/2010 PCRU

> #840 Zavie's Zero Club

>

>

>

> From: Jamshid <jamshid98@...>

> Subject: [ ] Burning sensation from stomach and Poor appetite

>

> Date: Wednesday, March 16, 2011, 4:45 AM

>

> Dear Friends,

>

> My Father(73 yrs) has been Dx CML 1.5 years back since then he is on

> Gleevec.

>

> Initially Dr prescribed 400Mg but his blood count was getting decreased

> after 4

>

> months Dr. changed to 300mg. He is doing well since the change apart from

> some

>

> issues. Most of the days he used to tell about burning sensation from

> stomach

>

> and Poor appetite. Skin become very pale since the treatment. Everyone in

> my

>

> family feel sad when he was talking about stomach probelm , he dont show no

>

>

> interest in what ever food. ( He was a great food lover before this disease

>

>

> ).. When the probelm with stomach getting high dr used to prescribe some

> other

>

> drug and gets little relief..

>

> Is it a common probelm with gleevec?

>

> And a person have CML has to take medicine (gleevec or any other medicines

> like

>

> this) life long?

>

> Waiting all your friends reply.

>

> Thx,

>

> Jams

>

>

[Guest guest]

Warm thoughts and prayers for your Dad. Just one step and one day at a time!

Eva

From: Jamshid

Sent: Saturday, March 19, 2011 8:17 AM

Subject: Re: [ ] Burning sensation from stomach and Poor appetite

Dear friends,

Thanks for all your reply. I am a member of this group since when my father has

dx CML and you people helped me a lot to find the answers which even normal dr's

can't.

Lottie, am living in India and the Doctor is a well known oncologist in my area

(trained from MDAAC). I will have a talk with Doctor (next we are gonna meet up)

about other drugs. Yes the company which I am working provides a good medical

insurance coverage (we have choice of drugs which doctors prescribes) for me and

my family.

the problem is he took only fried egg with a small glass of water along with

Gleevec in the night. When we compelled also he won’t. He is telling

he doesn't feel eating and don’t have any taste on whatever food.

He felt very depressed after dx and once he told me , " You know am telling you

only 10% of stress and pain which am going through " , that made me cry. you know

,he was such a bold and enthusiastic man I have ever seen my life, but after Dx

he always in sad and sometimes back asked me " Can god give this much disease to

a man? " .(He has undergone angioplasty long time back and taking drugs for that

too.. ).

, what you told is absolutely correct. Its minimum is 400mg. But he had a

lot of issues when he was on 400mg. So Dr suggested 300mg and I heard many times

while Doctor talking with his other fellow colleagues 400 was not taking effect

to my dad becuase of age and some other factors. Now he is doing well with

300mg.

“but the good part is, we are alive to complain about it " Bobby I read this

like many times the word was so touching and made me happy.

Thanks and Jackie for your reply. Thanks a lot all dear members Love you

a lot.

Will keep posted once I meet up the doctor next week.

Jams

________________________________

From: ROBERTA DOYLE <rcd1929@...>

Sent: Wed, March 16, 2011 4:48:52 PM

Subject: Re: [ ] Burning sensation from stomach and Poor appetite

Hello Jams, I am sorry your father has these side effects, but they are a part

of being on Gleevec. I am no longer on Gleevec, but when I was my doctor

prescribed something for the stomach, like Prevacid, or Nexium. Not to take

within 2 hrs. of Gleevec.

Also, for some reason, it has been noticed that people with darker skin may get

lighter in spots, and just the opposite with fair skin, I got dark spots. Very

strange.

I am afraid until a cure is found you father will be on medication for the rest

of his life. But that is not so bad, if he cannot stand the side effects of

Gleevec maybe his doctor can change his drug, there are several out there. When

I was dx, 16 yrs. ago, we only had about 5 years to live. today with the new

drugs, they no longer put a year on it, we can live normally for years.

Sometimes it takes a while to get used to any of the drugs, but the good part

is, we are alive to complain about it.....I don't know where you live and what

is available, but in the U.S, we can get Tasigna, and Sprycel , perhaps you can

look into that. Good luck , Bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: Jamshid <jamshid98@...>

Subject: [ ] Burning sensation from stomach and Poor appetite

Date: Wednesday, March 16, 2011, 4:45 AM

Dear Friends,

My Father(73 yrs) has been Dx CML 1.5 years back since then he is on Gleevec.

Initially Dr prescribed 400Mg but his blood count was getting decreased after 4

months Dr. changed to 300mg. He is doing well since the change apart from some

issues. Most of the days he used to tell about burning sensation from stomach

and Poor appetite. Skin become very pale since the treatment. Everyone in my

family feel sad when he was talking about stomach probelm , he dont show no

interest in what ever food. ( He was a great food lover before this disease

).. When the probelm with stomach getting high dr used to prescribe some other

drug and gets little relief..

Is it a common probelm with gleevec?

And a person have CML has to take medicine (gleevec or any other medicines like

this) life long?

Waiting all your friends reply.

Thx,

Jams

[Guest guest]

Dear Jams: I am jumping in here a little late, as I have not been on much

lately. First let me say that your Dad has a great son to be taking care of

him, and trying to make all this easier on him.

There are so many different opinions on the stomach problems from Gleevec, and

what to eat. You have to get him to have something that puts a little bulk into

his stomach before he takes the Gleevec. I still have problems after 10 years

of taking Gleevec if I do not eat.

You said your Dad is depressed. That could be a large portion of why he does

not want to eat. You just cannot eat when you feel depressed in some cases.

Try to talk to him, and let him know that CML is not like other cancers. If you

make him feel better mentally, he will start to feel better physically. I am

talking from experience with all of this. Someone else mentioned that if the

Gleevec is too strong, then the doctor can put him on one of the other drugs.

My thoughts and prayers are with you and your family. Just keep doing what your

doing to keep his spirits up. I am very pale, due to being anemic now from the

Gleevec. You had mentioned that also.

>

> Dear Friends,

>

> My Father(73 yrs) has been Dx CML 1.5 years back since then he is on Gleevec.

> Initially Dr prescribed 400Mg but his blood count was getting decreased after

4

> months Dr. changed to 300mg. He is doing well since the change apart from some

> issues. Most of the days he used to tell about burning sensation from stomach

> and Poor appetite. Skin become very pale since the treatment. Everyone in my

> family feel sad when he was talking about stomach probelm , he dont show no

> interest in what ever food. ( He was a great food lover before this disease

> ).. When the probelm with stomach getting high dr used to prescribe some

other

> drug and gets little relief..

> Is it a common probelm with gleevec?

> And a person have CML has to take medicine (gleevec or any other medicines

like

> this) life long?

>

> Waiting all your friends reply.

>

>

> Thx,

> Jams

>

>

>

>

>

[Guest guest]

I have two un-opened sleeves of Tasigna for anyone who would like them.  Just

email me with your address and they will go to the first to respond.

hughes.jessica@...

 

________________________________

From: Eva <evaob365@...>

Sent: Sunday, March 20, 2011 10:03:07

Subject: Re: [ ] Burning sensation from stomach and Poor appetite

 

Warm thoughts and prayers for your Dad. Just one step and one day at a time!

Eva

From: Jamshid

Sent: Saturday, March 19, 2011 8:17 AM

Subject: Re: [ ] Burning sensation from stomach and Poor appetite

Dear friends,

Thanks for all your reply. I am a member of this group since when my father has

dx CML and you people helped me a lot to find the answers which even normal dr's

can't.

Lottie, am living in India and the Doctor is a well known oncologist in my area

(trained from MDAAC). I will have a talk with Doctor (next we are gonna meet up)

about other drugs. Yes the company which I am working provides a good medical

insurance coverage (we have choice of drugs which doctors prescribes) for me and

my family.

the problem is he took only fried egg with a small glass of water along with

Gleevec in the night. When we compelled also he won’t. He is telling

he doesn't feel eating and don’t have any taste on whatever food.

He felt very depressed after dx and once he told me , " You know am telling you

only 10% of stress and pain which am going through " , that made me cry. you know

,he was such a bold and enthusiastic man I have ever seen my life, but after Dx

he always in sad and sometimes back asked me " Can god give this much disease to

a man? " .(He has undergone angioplasty long time back and taking drugs for that

too.. ).

, what you told is absolutely correct. Its minimum is 400mg. But he had a

lot of issues when he was on 400mg. So Dr suggested 300mg and I heard many times

while Doctor talking with his other fellow colleagues 400 was not taking effect

to my dad becuase of age and some other factors. Now he is doing well with

300mg.

“but the good part is, we are alive to complain about it " Bobby I read this

like many times the word was so touching and made me happy.

Thanks and Jackie for your reply. Thanks a lot all dear members Love you

a lot.

Will keep posted once I meet up the doctor next week.

Jams

________________________________

From: ROBERTA DOYLE <rcd1929@...>

Sent: Wed, March 16, 2011 4:48:52 PM

Subject: Re: [ ] Burning sensation from stomach and Poor appetite

Hello Jams, I am sorry your father has these side effects, but they are a part

of being on Gleevec. I am no longer on Gleevec, but when I was my doctor

prescribed something for the stomach, like Prevacid, or Nexium. Not to take

within 2 hrs. of Gleevec.

Also, for some reason, it has been noticed that people with darker skin may get

lighter in spots, and just the opposite with fair skin, I got dark spots. Very

strange.

I am afraid until a cure is found you father will be on medication for the rest

of his life. But that is not so bad, if he cannot stand the side effects of

Gleevec maybe his doctor can change his drug, there are several out there. When

I was dx, 16 yrs. ago, we only had about 5 years to live. today with the new

drugs, they no longer put a year on it, we can live normally for years.

Sometimes it takes a while to get used to any of the drugs, but the good part

is, we are alive to complain about it.....I don't know where you live and what

is available, but in the U.S, we can get Tasigna, and Sprycel , perhaps you can

look into that. Good luck , Bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: Jamshid <jamshid98@...>

Subject: [ ] Burning sensation from stomach and Poor appetite

Date: Wednesday, March 16, 2011, 4:45 AM

Dear Friends,

My Father(73 yrs) has been Dx CML 1.5 years back since then he is on Gleevec.

Initially Dr prescribed 400Mg but his blood count was getting decreased after 4

months Dr. changed to 300mg. He is doing well since the change apart from some

issues. Most of the days he used to tell about burning sensation from stomach

and Poor appetite. Skin become very pale since the treatment. Everyone in my

family feel sad when he was talking about stomach probelm , he dont show no

interest in what ever food. ( He was a great food lover before this disease

).. When the probelm with stomach getting high dr used to prescribe some other

drug and gets little relief..

Is it a common probelm with gleevec?

And a person have CML has to take medicine (gleevec or any other medicines like

this) life long?

Waiting all your friends reply.

Thx,

Jams