Re: New to CML

[Guest guest]

>

> My husband was diagnosed with CML earlier this year.He has been taking

> Gleevec ever since but lost 10 pounds after starting his medication

> and also has severe knee pain./he is currently taking Advil for the

> pain. Would anyone know if this is common and whether the pains

> eventually subside.As both of us are under 30 this has been fairly

> traumatic for us and any response is really appreciated. Thank you.

>

Hi: Sorry to hear your husband is fighting CML. The knee pain

could be arthritis in his knee, or just joint pain. I have both, and

my knees are so bad sometimes, but I think I need knee replacement. As

for losing weight, I have the opposite problem. Is he losing weight

due to nausea or anything like that. If that is the case, then he

needs to be sure to eat a good meal before taking his Gleevec. I eat a

good breakfast, then take my medication. If I am in a rush, and I do

not eat right, then I get the nausea. If you read some of the posts,

you will see how people have adjusted there times etc. for taking the

Gleevec and what they eat.

This is traumatic to deal with when your newly diagnosed and so

you young too, but there is always someone here to help answer all your

questions. It might give you both some relief to check into the group,

and see what everyone is going through. Both of You Take Care.

Suzzie

[Guest guest]

Hi Suzzie ,Is your husband  WC down, I took 500 Mg Hydroxyurea in the beginning

for gout which is a gas after killing off the bad WC. My count started at 164000

when down to 20,000 I stopped

Hydroxyurea,never had joint pain paul

________________________________

From: suzzienovember <suzzienovember@...>

Sent: Wednesday, December 10, 2008 8:43:01 AM

Subject: [ ] Re: New to CML

>

> My husband was diagnosed with CML earlier this year.He has been taking

> Gleevec ever since but lost 10 pounds after starting his medication

> and also has severe knee pain./he is currently taking Advil for the

> pain. Would anyone know if this is common and whether the pains

> eventually subside.As both of us are under 30 this has been fairly

> traumatic for us and any response is really appreciated. Thank you.

>

Hi: Sorry to hear your husband is fighting CML. The knee pain

could be arthritis in his knee, or just joint pain. I have both, and

my knees are so bad sometimes, but I think I need knee replacement. As

for losing weight, I have the opposite problem. Is he losing weight

due to nausea or anything like that. If that is the case, then he

needs to be sure to eat a good meal before taking his Gleevec. I eat a

good breakfast, then take my medication. If I am in a rush, and I do

not eat right, then I get the nausea. If you read some of the posts,

you will see how people have adjusted there times etc. for taking the

Gleevec and what they eat.

This is traumatic to deal with when your newly diagnosed and so

you young too, but there is always someone here to help answer all your

questions. It might give you both some relief to check into the group,

and see what everyone is going through. Both of You Take Care.

Suzzie

[Guest guest]

>

> >

> > My husband was diagnosed with CML earlier this year.He has been

taking

> > Gleevec ever since but lost 10 pounds after starting his

medication

> > and also has severe knee pain./he is currently taking Advil for

the

> > pain. Would anyone know if this is common and whether the pains

> > eventually subside.As both of us are under 30 this has been

fairly

> > traumatic for us and any response is really appreciated. Thank

you.

> >

> Hi: Sorry to hear your husband is fighting CML. The knee pain

> could be arthritis in his knee, or just joint pain. I have both,

and

> my knees are so bad sometimes, but I think I need knee

replacement. As

> for losing weight, I have the opposite problem. Is he losing

weight

> due to nausea or anything like that. If that is the case, then he

> needs to be sure to eat a good meal before taking his Gleevec. I

eat a

> good breakfast, then take my medication. If I am in a rush, and I

do

> not eat right, then I get the nausea. If you read some of the

posts,

> you will see how people have adjusted there times etc. for taking

the

> Gleevec and what they eat.

> This is traumatic to deal with when your newly diagnosed and so

> you young too, but there is always someone here to help answer all

your

> questions. It might give you both some relief to check into the

group,

> and see what everyone is going through. Both of You Take Care.

> Suzzie

>

>

>

> Hi this is chris I am 37 and diagnosed 3/13/08. Lot of joint pain

early. In remission since oct , still on gleevec forver and ever

amen. Main side effect is fatigue over time make adjustments. I

can relate being fairly young it was a shock , took time to accept

and deal with. A wife and 2 young children supportive but life is

diffrent. have faith chris

>

>

>

[Guest guest]

> >

> > My husband was diagnosed with CML earlier this year.He has been

taking

> > Gleevec ever since but lost 10 pounds after starting his

medication

> > and also has severe knee pain./he is currently taking Advil for

the

> > pain. Would anyone know if this is common and whether the pains

> > eventually subside.As both of us are under 30 this has been fairly

> > traumatic for us and any response is really appreciated. Thank

you.

> >

> Hi: Sorry to hear your husband is fighting CML. The knee pain

> could be arthritis in his knee, or just joint pain. I have both,

and

> my knees are so bad sometimes, but I think I need knee replacement.

As

> for losing weight, I have the opposite problem. Is he losing weight

> due to nausea or anything like that. If that is the case, then he

> needs to be sure to eat a good meal before taking his Gleevec. I

eat a

> good breakfast, then take my medication. If I am in a rush, and I

do

> not eat right, then I get the nausea. If you read some of the

posts,

> you will see how people have adjusted there times etc. for taking

the

> Gleevec and what they eat.

> This is traumatic to deal with when your newly diagnosed and so

> you young too, but there is always someone here to help answer all

your

> questions. It might give you both some relief to check into the

group,

> and see what everyone is going through. Both of You Take Care.

> Suzzie

>

>

>

>

>

>

>

[Guest guest]

Hey there and I'm kinda sorry to say, welcome to the group.

First off give your hubby a hug from me. This is some scary stuff the

two of you are dealing with.

I have the same question and the same advice for the weight loss

question. If he not eatting because the Gleevec is making him sick?

If so then I have the same advice, try taking the drug at different

times. I, for example, CANNOT take it in the morning. With or without

food. I will projectile vomit about 30 mins after I swollow the pills.

lol It's horrable... my eyes burst vessels and everything. BUT if I

take it at night just before bedtime I'm fine. I might as well have

popped some M & Ms for all the reaction I get out of my stomach. With or

without food.

As for the knee pain, I'm sorry. He should talk to the doctor about it

I guess. I hear alot of folks get aches and pains... cramps. I get

cramps in the bottom of my feet, my hands and under my shoulder blades

on my ribs. I never had them before the gleevec and they come and go.

Right now it's my hands.

Gleevce works with liver enzimes that your liver puts out to help

digest (among other things) grapefruit and the spice cardamom. Rather

than getting sick like I do when I eat these things your hubbys body

might be reacting by making his joints ache.

Get your Doctor to get you a list of the things that make his body

produce more of the enzime that breaks down Gleevce and try taking

those things out of his diet. It can't hurt. After all.. when he eats

them and his body makes more of the enzime it's effectively overdoseing

him on his gleevec by absorbing too much of the gleevec.

I hope I helpped at least alittle. I'll look for a list of the bad

foods and post it up for you.

G

date of total life change thanks to CML Sept 3rd 2001. What a sucky

week all around.

>

> My husband was diagnosed with CML earlier this year.He has been taking

> Gleevec ever since but lost 10 pounds after starting his medication

> and also has severe knee pain./he is currently taking Advil for the

> pain. Would anyone know if this is common and whether the pains

> eventually subside.As both of us are under 30 this has been fairly

> traumatic for us and any response is really appreciated. Thank you.

>

[Guest guest]

>

> My husband was diagnosed with CML earlier this year.He has been

taking

> Gleevec ever since but lost 10 pounds after starting his medication

> and also has severe knee pain./he is currently taking Advil for the

> pain. Would anyone know if this is common and whether the pains

> eventually subside.As both of us are under 30 this has been fairly

> traumatic for us and any response is really appreciated. Thank you.

>

I had terrible joint pains when I started Gleevec, particularly in the

hips and knees. I couldn't do stairs for a while. They did subside

after about a month. I didn't lose any weight, however, gained about

25 pounds. I hope he feels better soon.

[Guest guest]

Hi ,

I just wanted to point out that while it's true that there are a

couple of foods that can affect the way Gleevec is metabolized, there

are many other factors that influence metabolization and play a much

bigger role than diet alone.

Age, sex, ethnic background, enterohepatic circulation, and general

genetic variation such as the patient's rate of acetylation, all play

large roles in drug metabolization.

Obviously if a person takes other drugs, that will also have an

impact as the liver competes to metabolize all the compounds.

If someone is having very severe, debilitating, side effects, a serum

level test would be a good idea to see how much drug is in their

system. If they are slow at acetylating, they might be able to

maintain adequate drug levels with suboptimal dosing (less than

400mg) but a serum level test would need to be done to show this.

Take care,

Tracey

> >

> > My husband was diagnosed with CML earlier this year.He has been

taking

> > Gleevec ever since but lost 10 pounds after starting his

medication

> > and also has severe knee pain./he is currently taking Advil for

the

> > pain. Would anyone know if this is common and whether the pains

> > eventually subside.As both of us are under 30 this has been fairly

> > traumatic for us and any response is really appreciated. Thank

you.

> >

>

[Guest guest]

Hey , My Granny has had CML for a little over 2 years now and she has

finally figured out how to take her Gleevec. She cannot take it in the mornings

either. She waits till later in the day. It does get better. If you ever have

any questions about anything, email the group. They are Great!

--

Kristie Skipper

skipper3@...

-------------- Original message --------------

From: " " <anninflux@...>

Hey there and I'm kinda sorry to say, welcome to the group.

First off give your hubby a hug from me. This is some scary stuff the

two of you are dealing with.

I have the same question and the same advice for the weight loss

question. If he not eatting because the Gleevec is making him sick?

If so then I have the same advice, try taking the drug at different

times. I, for example, CANNOT take it in the morning. With or without

food. I will projectile vomit about 30 mins after I swollow the pills.

lol It's horrable... my eyes burst vessels and everything. BUT if I

take it at night just before bedtime I'm fine. I might as well have

popped some M & Ms for all the reaction I get out of my stomach. With or

without food.

As for the knee pain, I'm sorry. He should talk to the doctor about it

I guess. I hear alot of folks get aches and pains... cramps. I get

cramps in the bottom of my feet, my hands and under my shoulder blades

on my ribs. I never had them before the gleevec and they come and go.

Right now it's my hands.

Gleevce works with liver enzimes that your liver puts out to help

digest (among other things) grapefruit and the spice cardamom. Rather

than getting sick like I do when I eat these things your hubbys body

might be reacting by making his joints ache.

Get your Doctor to get you a list of the things that make his body

produce more of the enzime that breaks down Gleevce and try taking

those things out of his diet. It can't hurt. After all.. when he eats

them and his body makes more of the enzime it's effectively overdoseing

him on his gleevec by absorbing too much of the gleevec.

I hope I helpped at least alittle. I'll look for a list of the bad

foods and post it up for you.

G

date of total life change thanks to CML Sept 3rd 2001. What a sucky

week all around.

>

> My husband was diagnosed with CML earlier this year.He has been taking

> Gleevec ever since but lost 10 pounds after starting his medication

> and also has severe knee pain./he is currently taking Advil for the

> pain. Would anyone know if this is common and whether the pains

> eventually subside.As both of us are under 30 this has been fairly

> traumatic for us and any response is really appreciated. Thank you.

>

[Guest guest]

Each experience is different but I would be concerned about the weight loss. Men

and women my be different but I think most of us gained weight with gleevec.  I

even wonder f it has changed my metabolism.  I eat much less exercise more and

yet still can't budge the scales. The bone pain is a common side effect that

while it still hasn't gone away- it has gotten better in time.

 

I'm sending you and hubby a big hug.  I'm glad you found this group- they are a

lifesaver!!!

 

Chi

From: rbaran0508 <rbaran0508@...>

Subject: [ ] New to CML

Date: Tuesday, December 9, 2008, 10:52 PM

My husband was diagnosed with CML earlier this year.He has been taking

Gleevec ever since but lost 10 pounds after starting his medication

and also has severe knee pain./he is currently taking Advil for the

pain. Would anyone know if this is common and whether the pains

eventually subside.As both of us are under 30 this has been fairly

traumatic for us and any response is really appreciated. Thank you.

[Guest guest]

Thank you all for your messages.  We really appreciate the time taken to give

us advice. 

From: suzzienovember <suzzienovember@...>

Subject: [ ] Re: New to CML

Date: Wednesday, 10 December, 2008, 2:43 PM

>

> My husband was diagnosed with CML earlier this year.He has been taking

> Gleevec ever since but lost 10 pounds after starting his medication

> and also has severe knee pain./he is currently taking Advil for the

> pain. Would anyone know if this is common and whether the pains

> eventually subside.As both of us are under 30 this has been fairly

> traumatic for us and any response is really appreciated. Thank you.

>

Hi: Sorry to hear your husband is fighting CML. The knee pain

could be arthritis in his knee, or just joint pain. I have both, and

my knees are so bad sometimes, but I think I need knee replacement. As

for losing weight, I have the opposite problem. Is he losing weight

due to nausea or anything like that. If that is the case, then he

needs to be sure to eat a good meal before taking his Gleevec. I eat a

good breakfast, then take my medication. If I am in a rush, and I do

not eat right, then I get the nausea. If you read some of the posts,

you will see how people have adjusted there times etc. for taking the

Gleevec and what they eat.

This is traumatic to deal with when your newly diagnosed and so

you young too, but there is always someone here to help answer all your

questions. It might give you both some relief to check into the group,

and see what everyone is going through. Both of You Take Care.

Suzzie

[Guest guest]

Dear Fahad,

I'm sorry to hear that your mother has been diagnosed with CML at 57. I was

only one year older when I was diagnosed. Your concern about the side

effects is understandable. Please keep in mind that, for the most part,

these side effects are minor trade off for the gift of life which Gleevec

(Glivek) provides.

I am not sure about the sore throat and cough. I'm not familiar with this as

a side effect of Gleevec. Your mother needs a good general medicine doctor

to evaluate this, it may be due to some other problem she is having.

The edema is the most serious, I think, side effect you have listed. Where

is the edema? If it is in the legs and ankles the doctor may prescribe a

diuretic medication. I would also suggest taking a vigorous walk for 30 to

45 minutes a day to improve circulation. Edema in her eyes or heart is a

much more serious problem. She should have regular exams with

an ophthalmologist and a cardiologist to be certain all is well.

Pain management is always a tricky issue. Much depends upon how much pain

your mother can live with. Aspirin and other non steroidal pain medications

should be avoided by people on Gleevec. Also people need to be very careful

to avoid taking too much acetaminophen (tylenol), as this can be deadly. My

doctor lets me take Vicodin, which I have taken for years,

but extreme caution must be exercised because you can become addicted to the

medication... it is not for everyone. I never take more than two pills every

24 hours and I have taken a few 4 to 6 month vacations from this medicine to

avoid the addiction. Again, have a good talk with her doctors about this...

there are other options.

Keep in touch, the people in this group have had many different experiences

and have many good suggestions.

Troxel

dob 05/07/44

cml 02/10/03

On Wed, Mar 31, 2010 at 4:19 AM, Fahad Mukhtar <fahadm77@...> wrote:

>

>

> Dears,

>

> Its very nice to see all of you (or your relatives)

> fighting with a disease like CML with such a quality spirit and courage.

>

> My mother(57 years old) was diagnosed with CML (in chronic phase) in Jan

> 2010. She started GLIVEC (400 mg/day with split dose) from Mid of Feb

> 2010 and during 1 month her WBC count has fallen from 60K per

> micro-liter to 7.5K per micro-liter. Which is great improvement.

>

> But she is facing too much side effects after taking GLIVEC. She is already

> a heart patient and had undergone by-pass surgery in Oct 2006.

>

> I have searched internet for minimizing these side effects of this

> wonderful medicine (GLIVEC). But still couldnt find how to minimize

> following side effects:

>

> * Cough/Sore throat

> * Edema: (It comes and goes. Doc has told to increase water in-take. But

> that didnt work perfectly)

> * Pain in bones and musclesKindly tell me how to minimize/prevent from

> these side effects.

>

> Hoping for a reply.

>

> Best Regards,

>

> Fahad

> Mukhtar

>

>

[Guest guest]

Hello Fahad,

I'm very sorry to hear about your mothers diagnosis, but glad to hear that

Gleevec has provided a great reduction in her wbc count. You are in the right

place for information - there are quite a few of us here who have been taking

gleevec (Glivec) for some time.

I was diagnosed just after my 40th birthday, in 2000, and have been on Gleevec,

400mg's for about 9 years. For me, the bone pain was the worst in the

beginning, along with a bad rash on my left forearm and the left side of my

neck.

Over about 2 months, the rash lessened and disappeared, then after about 3-4

months, the bone pain lessened.

Give your mom a bit of time to get used to this medicine... it may take a few

months.

Best Wishes,

Gale

>

> Dears,

>

> Its very nice to see all of you (or your relatives)

> fighting with a disease like CML with such a quality spirit and courage.

>

> My mother(57 years old) was diagnosed with CML (in chronic phase) in Jan

> 2010. She started GLIVEC (400 mg/day with split dose) from Mid of Feb

> 2010 and during 1 month her WBC count has fallen from 60K per

> micro-liter to 7.5K per micro-liter. Which is great improvement.

>

> But she is facing too much side effects after taking GLIVEC. She is already a

heart patient and had undergone by-pass surgery in Oct 2006.

>

> I have searched internet for minimizing these side effects of this

> wonderful medicine (GLIVEC). But still couldnt find how to minimize

> following side effects:

>

>

> * Cough/Sore throat

> * Edema: (It comes and goes. Doc has told to increase water in-take. But that

didnt work perfectly)

> * Pain in bones and musclesKindly tell me how to minimize/prevent from these

side effects.

>

> Hoping for a reply.

>

> Best Regards,

>

> Fahad

> Mukhtar

>

>

>

>

>

[Guest guest]

Fahad, I don't know of course, but it just might be that things will improve

with your mom as time goes by. At first I had a bunch of side effects with

Gleevec, but they passed or eased after the first few months. I have since

changed meds, but I had a few good years there.

Soon after I started taking Gleevec, my doctor prescribed a diuretic for the

edema and also a medication to control nausea. The pains came and went, it

seemed for weeks at a time. Sometimes they'd be terrible, they would wake me

up at night. Then -- no problem! When things got bad I would know that it

would at least be temporary! I took Ibuprofen for the pain, and when that

didn't work I would take Percocet.

I must say I have never heard of a cough or sore throat resulting from

Gleevec. I always get a flu shot and this year also got I swine flu shot

too.

Your mom is blessed to have such a caring, involved (adult) child!

Kind regards,

On Wed, Mar 31, 2010 at 7:28 PM, divergale <no_reply > wrote:

>

>

> Hello Fahad,

>

> I'm very sorry to hear about your mothers diagnosis, but glad to hear that

> Gleevec has provided a great reduction in her wbc count. You are in the

> right place for information - there are quite a few of us here who have been

> taking gleevec (Glivec) for some time.

>

> I was diagnosed just after my 40th birthday, in 2000, and have been on

> Gleevec, 400mg's for about 9 years. For me, the bone pain was the worst in

> the beginning, along with a bad rash on my left forearm and the left side of

> my neck.

> Over about 2 months, the rash lessened and disappeared, then after about

> 3-4 months, the bone pain lessened.

> Give your mom a bit of time to get used to this medicine... it may take a

> few months.

>

> Best Wishes,

> Gale

>

>

> >

> > Dears,

> >

> > Its very nice to see all of you (or your relatives)

> > fighting with a disease like CML with such a quality spirit and courage.

> >

> > My mother(57 years old) was diagnosed with CML (in chronic phase) in Jan

> > 2010. She started GLIVEC (400 mg/day with split dose) from Mid of Feb

> > 2010 and during 1 month her WBC count has fallen from 60K per

> > micro-liter to 7.5K per micro-liter. Which is great improvement.

> >

> > But she is facing too much side effects after taking GLIVEC. She is

> already a heart patient and had undergone by-pass surgery in Oct 2006.

> >

> > I have searched internet for minimizing these side effects of this

> > wonderful medicine (GLIVEC). But still couldnt find how to minimize

> > following side effects:

> >

> >

> > * Cough/Sore throat

> > * Edema: (It comes and goes. Doc has told to increase water in-take. But

> that didnt work perfectly)

> > * Pain in bones and musclesKindly tell me how to minimize/prevent from

> these side effects.

> >

> > Hoping for a reply.

> >

> > Best Regards,

> >

> > Fahad

> > Mukhtar

> >

> >

> >

> >

> >