Re: Re: Gleevec side effects and other leukemia news

November 1, 2008

Hi Demetria,

Welcome to the group.

Sorry to hear that you have all these side effects on Gleevec. Has your

doctor suggested trying one of the other drugs?

Where are you located and do you see one of the CML experts?

I'm always looking for new Zero Club members. Can you tell us at what level

of remission you're at? You just need to be at CCR to get a number.

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

3.6 log reduction Sep/08

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

Hi,

I have been on 400 mg. of Gleevec since March 1, 2006 for CML. When

my leukemia was discovered during my yearly physical my white blood

count was 65,000 and now it is staying under 10,000 and I weighed 100

lbs. I've gained 30 pounds and am 5 " tall and have really had to

change sizes in all my clothes. I stay very tired, sleepy, cold and

have alot of bone pain. I am still experiencing all the side effects

even though I've been on it for along time. I never know when it will

make me sick, but I've discovered its best to take at night and not to

take with a meal that has any meat in it (if I do I get sick and start

throwing up). I look like I've aged about 10 yrs. since I started the

Gleevec. My hair came back very coarse and frizzy and I keep it

colored to make it look thicker. My skin is so dry it scales off like

a fish (no matter how much lotion I use); its worse on my shoulders,

back, legs and feet. I've discovered Cetaphil soap helps with the dry

skin some. I take 20 mg. Lasix for fluid retention which doesn't

really help that much but I did loose 6 lbs. overnight when I first

started taking it.

> For the muscle cramps I drink tonic water with quinine. I've always

been chronic anemic all my life and now get Aranesp shots every 4

weeks to help build up my red blood count which helps. I always wear

a mask in public but still catch everything that everyone has. I want

anyone who has CML to feel free to contact me about anything. I feel

like I could write a book but don't have time since I spend alot of

time with my 87 yr. old father-in-law and my 76 yr. old daddy. My

husband just had his 2nd cornea transplant due to loosing his eyesight

in his left eye due to shingles in 1998. We are both just mentally

and physcially drained due to our health problems but thank GOD each

day that he has given these doctors the knowledge to do what they can do.

Oh, my name is Demetria, I'm 53 and a nana of 7. GOD BLESS EVERYONE!

..

<http://geo./serv?s=97359714/grpId=14762801/grpspId=1705061628/msgI

d=12609/stime=1225502987/nc1=5191951/nc2=5191945/nc3=4507179>

November 1, 2008

Hi All,

One thing that I have taken even before CML (April of 2006) is Omega 3, 6 and 9

tablets (Nordic Naturals 800-662-2544). I don't have problems with dry skin,

although I live in Boise, ID which is very dry. My hairdresser has commented on

how health my hair is and what was I doing differently (been going to her for 6

to 7 years). I am wondering if anyone else takes Omega oils and if they find

them helpful for the dry skin problems people are having with their medication.

Omega oils are suppose to support healthy skin, flexible joints and strong

immune functions. Just a thought!

Bernadette

________________________________

From: Zavie <zmiller@...>

Sent: Friday, October 31, 2008 9:07:10 PM

Subject: RE: [ ] Re: Gleevec side effects and other leukemia news