Side effects

[Guest guest]

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 SharonS.

I'm sorry you are having so many side effects.

I was dx in Jan of 2004 and started Gleevec in Feb 2004.

I had a lot of side effects, and I just hung in there and fought.

I even had boils that hurt a lot.

With every side effect, I knew I had to hang tough.

I had swollen eyes, eye bleed, red face, weight gain, boils, back ache; you

name it and I had it.

I never reached remission.

Then last year, my counts started rising especially my platelets and then my

WBC; I started looking real white( was wishing I had my red face back) and

about 3 weeks ago,they found blast in my blood.

It wasn't looking good, and I was feeling awful.

So, they stopped Gleevec and put me on Tasigna.

I have been on Tasigna for about 16 days, all my counts have dropped, but

not to bad, and as I said, I'm fighting this CML, along with God on my side.

What I'm trying to say, is hang in there CML WARRIOR.

Take each side effect and deal with as best you can.

If you're tired, rest.

I use to fight being tired, but I quit that.

Take some time for yourself and pamper yourself.

Watch you diet; eat the best foods from all the food groups.

Keep a diary; this helps me a lot.

The side effects will get better with time and you will learn how to manage

them.

This group will help you through this. Tell us about your side effects and

there are some good people on this list that can give you some good advice.

Blessings,

Jeanie<3

In a message dated 10/7/2008 9:24:26 P.M. Pacific Daylight Time,

serenitywon@... writes:

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.gain of 14.5 pounds in

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,symptoms,o

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..

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[Guest guest]

HI SHARON, IT'S HARD AT FIRST, BUT MOST OF THE SIDE EFFECTS SUBSIDE AFTER A

WHILE.  IF THEY DO NOT, I WOULD SUGGEST YOU ASK YOUR DR. TO

TRY ONE OF THE OTHER DRUGS,LIKE SPRYCEL OR TASIGNA.  NONE OF THEM ARE FREE FROM

SOME KIND OF SIDE EFFECTS, IT'S JUST THAT SOME ARE WORSE.

I WAS ON A LOW DOSE OF SPRYCEL , 70 MG A DAY, WITH HARDLY ANY SIDE EFFECTS AT

ALL, BUT AFTER 1 1/2 YEARS I DEVELOPED PLEURAL EFFUSION.

GIVE YOURSELF SOME MORE TIME WITH GLEEVEC, IT TOOK ME TWO MONTHS TO FEEL HUMAN

AGAIN WHEN I WAS ON IT. I AM NOW IN THE XL228 TRIAL, NOT MANY SIDE EFFECTS, BUT

I HAVE TO DRIVE 175 MILES TO ANN ARBOR EVERY WEEK, NOW THAT GETS TO BE A BIG

PAIN, BUT IT'S WORKING SO I CAN'T COMPLAIN.

GOOD LUCK, BOBBY

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

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

#840  -   Zavie's Zero Club

09/2006 -  out of CCR

04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

 

From: serenitywon <serenitywon@...>

Subject: [ ] Side effects

Date: Wednesday, October 8, 2008, 12:24 AM

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]

Sharon,

 

I am so sorry you are in so much pain.  It is my understanding that the higher

the dose the more the side effects.  As our wise Zavie said...there are more

options now and quality of life should also be considered.  I think we all

struggle with the weight gain and the as someone called them " tadpole eyes " .  I

have made peace with the fact that I hardly recognize myself when I look in the

mirror. Twice my neck looked like I had been flayed with angry red stripes . On

my last trip back to Pa my sister commented on the fact that I am several shades

lighter than when she last saw me.  Gleevec made me sick for many months- since

I took it with dinner I would only go out to dinner if I was within one mile of

my house.  I spent many nights on the bathroom floor feeling like I had the

flu.  I never had headaches but the bone pain was constant and the weird

cramping in my legs , fingers and toes created some great stories to tell my

friends.  My fingers

on one hand would cramp and twist and I was afraid someone would think I was

throwing up " gang signs " as I struggled to straighten them.  Who knew your toes

could bend backwards!!!!  I was diagnosed March 07.  I'm still taking 400 mg of

the gold. I work full time and co-parent my 14 year old daughter with my ex. 

I've even jumped back into the dating pool( that is a whole other story thank

God there are still brave men out there.).  I am thankful for every day that my

eyes open on this beautiful, crazy world.  98% of the time I feel great.  But

every so often just to  remind me that CML is my constant companion , I'll find

myself sick again because I didn't eat enough or not enough protein or not

enough water or I'll get some weird cramp.  I know right now the treatment feels

worse than the disease but no my friend, from my understanding the disease can

be so much worse.  There are other choices for drugs... but no treatment- well

that

doesn't seem like a choice to me.

 

Hang in there - our lives may never be the same but they can be good. Lean on

your brother and sister warriors. You are not in this alone.

 

Chi

From: serenitywon <serenitywon@...>

Subject: [ ] Side effects

Date: Tuesday, October 7, 2008, 9:24 PM

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,

Another thing that can cause candidiasis to pop up is out of control

blood sugars! Sharon, have you had a blood sugar measurement

lately? You could be diabetic or prediabetic, or your sugars could

be just high enough that they provide a welcoming atmosphere for

these yeasts to grow! I know because it is one way I can tell when

my sugars are too high, I am sure to get an itchy rash someplace I'd

rather not!

Vicki

>

> Dear Sharon S,

> In reply to your post, yes, I do have side effects in my

current trial. The pain is not all related to the drug for CML. I

have arthritis and fibromyalgia. You will work out a majority of

your problems as your treatment continues. I see specialists for

everything, as I don't think an oncologist or general practioner has

all the information needed at their fingertips to treat all of our

problems that develop. If I had diabetes, I would see an

endocrinologist. I see a rheumatologist for the fibromyalgia and he

gives me Kenalog injections every 3 months. http://www.health-

reports.com/fibromyalgia.html

> There are a hundred different kinds of rheumatic diseases; one

is arthritis and the another is gout. I have seen people with gout

and their joints in their fingers and toes are so swollen and

twisted. It's possible you were misdiagnosed if you don't have the

classic signs. With treatment and diet, it can get better.

> The yeast infection may need a combination of drugs. If it

keeps coming back, the meds are not getting rid of it. Cutaneous

candidiasis involves infection of the skin with candida. It may

involve almost any skin surface on the body, but usually occurs in

warm, moist, creased areas such as armpits and groins. Cutaneous

candidiasis is fairly common.

> http://www.nlm.nih.gov/medlineplus/ency/article/000880.htm.

> Here is a website dedicated solely to yeast infections.

http://www.yeastinfectionresource.com

> Symptoms of yeast infections.

http://www.monistat.com/SignsSymptoms/ There are also yeast

infections on the skin, around the groin and armpits.

> I hope all of your problems get ironed out and we all look forward

to getting your results once you have started Gleevec.

> Best of luck to you, Sharon, all of this will take time to sink

in. You are not devoid of hope, there are good doctors and many good

drugs out there.

> Blessings and peace,

> Lottie

>

>

[Guest guest]

It is different with everyone! Some get it right away and some don't.

It is an individual thing.

Sharon

_____

From: [mailto: ] On Behalf Of

longing4sunnsand

Sent: Sunday, March 01, 2009 9:09 AM

Subject: [ ] Side Effects

I was wondering if side effects start right away or are they

something that shows up the longer you take Gleevec?