Side effects

[Guest guest]

Hi Shalyn,

I couldn't agree with you more. I have been on many therapies and they all

come with side effects, unless you are on a sub-optimal dose. I haven't had a

transplant and that would literally scare me to death if I had to deal with it,

but I have seen some people come through it and they are my heroes. I'm in a

trial and I asked for Tasigna, but the doctor said the trial was closed. I

agree about the side effects, but some are really lucky and have none,

especially on Tasigna. I am grateful to everyone who came before me and trialed

all the drugs. When I was on HHT, I thought I had heard the last of it, but it

has come back to attack T315i and strangle it. I was on another trial that I

thought had gone to the moon and it is now being used to treat AML. We never

know where life will take us, but I want to squeeze all I can out of it. This

group and all of its subscribers energize me and give me hope.

________________________________

Hi Deb,

I'm sorry to hear you have elevated liver enzymes and have found it is

enlarged. Unfortunately Gleevec does cause this side effect for some people.

The friends I know who had the same problem took a hiatus from Gleevec until the

liver recovered. I would do some research and show it to my doctor. Some in the

group have experienced this also. I hope someone who has experienced it will

respond.

Blessings

Lottie

[Guest guest]

Hi Sharon,

Dr. Druker, one of the foremost CML experts on the planet believes that a

patient's QOL is more important than a deeper response to treatment. It may

be time to find a doctor that is more concerned about your quality of life

than a deeper response to Gleevec.

There are two other approved CML drugs that work just as well as Gleevec.

For many patients the switch to these drugs worked without the nasty side

effects. It would seem they are worth a try.

A CML patient's life span without medication is 3-5 years. Not an option

these days with all the new CML drugs.

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

serenitywon

Sent: October 8, 2008 12:24 AM

Subject: [ ] Side effects

Hello,

I was DX May 08.I am not to remission yet.I take 600 mg Gleevec

daily.I was taking 400 mg I have been on 600 for about 6 weeks now.I

am having swelling around eyes.My skin especially my face is red.It

looks like I wore goggles and went snow sking and got snow burned.I

have a few small blister type dry skin patches mostly on my face.

For the past 6 weeks or so I have had this " pulled muscle " feeling

in my right thigh front side.My Dr. feels it is from taking gleevec

with Zocor which is on the list of " don't Take " while on gleevec.He

feels I am over dosing on the zocor(due to gleevec somehow) and that

is causing the problem.I was advised to DC the zocor.I have major

increase in muscle and joint/bone pain.I already was taking M.S.

Contin twic daily and Norco 3 times daily.I am still in alot of

pain.Increased pain since DX.

My next issue seems to be weight gain while dieting.I have in the

last 7 days or so gained an average of 1-2 pounds a day for a total

gain of 14.5 pounds in less than 2 weeks.Again..I am dieting.I track

all food and calorie intake.I have an obvious distended abdomen.I

look 6 months prego and I am NOT.

My Dr.wanted to increase my dosage of gleevec to 800 mg but is

holding off due to my issues of weight gain,pain,rash like

symptoms,occasion diharea while I usually have constipation,headaches

etc.I am frustrated and tired of hurting already and I haven't even

been DX for very long.

Quality of life sucks currently.I wonder what is the point of getting

to remission if i am going to feel like this daily and be bed ridden

and all.Guess I just need to vent some nt that it will change a darn

thing..lol

Anyone know how long a person can live with CML WITHOUT any

treatment? Seems like the treatment is worse than the illness..UGH

Thanks

SharonS Sorry this wasn't such a positive post..

[Guest guest]

Hi Sharon,

I totally agree with Zavie. There are options out there for you to

try if you find that you are intolerant to Gleevec and for the

majority of people, they find the second generation drugs much easier

to tolerate than Gleevec.

I would wait and see how you feel now that you've stopped the Zocor

though. Lets hope that this small change will be all you need to

start feeling more human again but if not, know that you do have

options.

Take care,

Tracey

>

> Hi Sharon,

>

> Dr. Druker, one of the foremost CML experts on the planet believes

that a

> patient's QOL is more important than a deeper response to

treatment. It may

> be time to find a doctor that is more concerned about your quality

of life

> than a deeper response to Gleevec.

>

> There are two other approved CML drugs that work just as well as

Gleevec.

> For many patients the switch to these drugs worked without the

nasty side

> effects. It would seem they are worth a try.

>

> A CML patient's life span without medication is 3-5 years. Not an

option

> these days with all the new CML drugs.

>

> Zavie

>

> Zavie (age 70)

> 67 Shoreham Avenue

> Ottawa, Canada, K2G 3X3

> dxd AUG/99

> INF OCT/99 to FEB/00, CHF

> No meds FEB/00 to JAN/01

> Gleevec since MAR/27/01 (400 mg)

> CCR SEP/01. #102 in Zero Club

> 2.8 log reduction Sep/05

> 3.0 log reduction Jan/06

> 2.9 log reduction Feb/07

> 3.6 log reduction Apr/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-282-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

> _____

>

> From: [mailto: ] On Behalf

Of

> serenitywon

> Sent: October 8, 2008 12:24 AM

>

> Subject: [ ] Side effects

>

> Hello,

> I was DX May 08.I am not to remission yet.I take 600 mg Gleevec

> daily.I was taking 400 mg I have been on 600 for about 6 weeks

now.I

> am having swelling around eyes.My skin especially my face is red.It

> looks like I wore goggles and went snow sking and got snow burned.I

> have a few small blister type dry skin patches mostly on my face.

> For the past 6 weeks or so I have had this " pulled muscle " feeling

> in my right thigh front side.My Dr. feels it is from taking gleevec

> with Zocor which is on the list of " don't Take " while on gleevec.He

> feels I am over dosing on the zocor(due to gleevec somehow) and

that

> is causing the problem.I was advised to DC the zocor.I have major

> increase in muscle and joint/bone pain.I already was taking M.S.

> Contin twic daily and Norco 3 times daily.I am still in alot of

> pain.Increased pain since DX.

> My next issue seems to be weight gain while dieting.I have in the

> last 7 days or so gained an average of 1-2 pounds a day for a total

> gain of 14.5 pounds in less than 2 weeks.Again..I am dieting.I

track

> all food and calorie intake.I have an obvious distended abdomen.I

> look 6 months prego and I am NOT.

>

> My Dr.wanted to increase my dosage of gleevec to 800 mg but is

> holding off due to my issues of weight gain,pain,rash like

> symptoms,occasion diharea while I usually have

constipation,headaches

> etc.I am frustrated and tired of hurting already and I haven't even

> been DX for very long.

>

> Quality of life sucks currently.I wonder what is the point of

getting

> to remission if i am going to feel like this daily and be bed

ridden

> and all.Guess I just need to vent some nt that it will change a

darn

> thing..lol

>

> Anyone know how long a person can live with CML WITHOUT any

> treatment? Seems like the treatment is worse than the illness..UGH

> Thanks

> SharonS Sorry this wasn't such a positive post..

>

>

>

>