Re: Anyone with big edema issues?

[Guest guest]

At 04:07 PM 7/18/06 +0000, you wrote:

>This has been my only side effect from Gleevec that is very hard to

>tolerate. I am PCRU but am wondering if I should try out BMS when it

>comes to market? I didn't want to try it until I needed it, because

>GLeevec is working... but this edema is getting very old.

Hi Lynn,

Have you communicated with Carolyn at OHSU about this....because you

consulted there, I think they could give you some info (and/or your

doctor). I have not had much of an edema problem but I am sure they have

experience with others who have.

But, as far as switching drugs..............it might be worth

considering???? Again, I would ask their opinion. I was on 800mg IM.......I

had the eye bleeds, puffy AM eyelids, some vocal cord edema, some ear

congestion.............and all these things are gone...........

BUT a new drug will have it's own side effects, which vary for people.

I think I would get OHSU's opinion about what else to try for the edema

first. Yours sounds pretty significant.

C.

[Guest guest]

Lynn:

I do not remember how much Gleevec you are on.

I was on Lasix for 2 and a half years...40 mg. I had a lot of issues

with Gleevec and edema was a big factor. Most people (including

doctors)do not realize how awful it can truly be when you are on your

feet all day. I took it once in the morning and went to the bathroom

two-three times right after. By 11:00 am (since I took the dose with

breakfast around 6:45 am), I was through with rushing to the

bathroom. When you are on this dosage though, potassium needs to be

watched VERY carefully. I had gone to Oregon and within one week

after 1 year on Lasix), I was in BIG trouble! Luckily, they had my

counts from the week prior and I was in ther perfect range...but that

one test in Oregon proved that my potassium was dangerously low and

they would not let me go home without a prescription being filled and

watching me take one tablet there in their office!

Talk to your doctor first!

I am off the Lasix now.

Word of advice, I would not automatically switch to another drug

because of this problem. The BMS drug can cause pleural infusion

which if you thought edema was an issue...think again!

Hugs,

Rosenthal

Miami, Florida

PCRU since October 2004!!!

>

> Hi everyone,

>

> I have been having a heck of a time with edema in my extremities.

> I'm on 20 mg Lasix twice a day, but it really doesn't take care of

> the edema. I've been following a low salt/low processed food diet,

> but still no avail. My weight has ballooned. :-(

>

> I am so frustrated and it makes me very sad. I honestly don't know

> what more to do. I have big legs to begin with, and this side

effect

> has really changed my life. It's really getting hard to get around.

>

> This has been my only side effect from Gleevec that is very hard to

> tolerate. I am PCRU but am wondering if I should try out BMS when

it

> comes to market? I didn't want to try it until I needed it,

because

> GLeevec is working... but this edema is getting very old.

>

> Does anyone take a higher dose of Lasix? It's just weird.. If I

> don't take Lasix, I hardly go-even if I drink a ton of water. My

> kidney function tests all come out normal though. What is going

on?

>

> Is anyone else having this problem?

>

> Any and all advice is welcomed. Many Thanks!

>

> Lynn

> Dx'd 12/03

> PCRU 400 mg Gleevec

>

[Guest guest]

Hi ,

Thanks for writing back about this subject. I hope you are doing

well! Are you still on Gleevec (reduced dose) or on BMS? Are you

getting to have a nice summer break from teaching? You deserve a

good rest after everything you have been through.

Yes, I have been taking a potassium pill once a day since starting

Lasix. I also make sure I eat potassium rich food regularly. My

levels are also monitored regularly and are great. No problems,

luckily.

I have had many tests done to make sure it's not an underlying

condition... like diabetes, thyroid, cardiac, GYN, etc.. and

everything has come back normal.

I am also aware of the strength of BMS and AMN and it's side

effects. Gleevec is working great for me.. except for the edema..

So, I am just going to work with my reg Hem/Onc to figure this one

out. Nobody said having CML was easy right? Just have to keep on

keeping on..

Thanks again for your input. I really appreciate it.

Sincerely,

Lynn

> >

> > Hi everyone,

> >

> > I have been having a heck of a time with edema in my

extremities.

> > I'm on 20 mg Lasix twice a day, but it really doesn't take care

of

> > the edema. I've been following a low salt/low processed food

diet,

> > but still no avail. My weight has ballooned. :-(

> >

> > I am so frustrated and it makes me very sad. I honestly don't

know

> > what more to do. I have big legs to begin with, and this side

> effect

> > has really changed my life. It's really getting hard to get

around.

> >

> > This has been my only side effect from Gleevec that is very hard

to

> > tolerate. I am PCRU but am wondering if I should try out BMS

when

> it

> > comes to market? I didn't want to try it until I needed it,

> because

> > GLeevec is working... but this edema is getting very old.

> >

> > Does anyone take a higher dose of Lasix? It's just weird.. If I

> > don't take Lasix, I hardly go-even if I drink a ton of water.

My

> > kidney function tests all come out normal though. What is going

> on?

> >

> > Is anyone else having this problem?

> >

> > Any and all advice is welcomed. Many Thanks!

> >

> > Lynn

> > Dx'd 12/03

> > PCRU 400 mg Gleevec

> >

>

[Guest guest]

I can agree. I have been on 400 mg Gleevec since 2/03 and no

serious weight gain until this year. When I saw the ONC the end of

May I showed him my leg, knees, and ankles were swollen and that I

had gained 9 lbs in the week before I saw him. I started at 10mg

lasics and am now at 60mg, and have only removed 9 lbs. If I skip a

day taking the lasics then I will jump 4-5 lbs in 24 hours. I am

taking potassium supplements and monitering for side effects. I

take the lasics just before I walk out the door for work (45 minute

drive) and just barely make it before the first run, and it takes

about 4 1/2 hrs before the rush is over. I do believe that this

inconvience is better that the alternative so will keep on trucking

to see what lies ahead and hope this will go away like many of the

other side effects that go along with this. At least the high

humidity and heat wave has reduced the cramps for a while. The ONC

said they will probably be back come winter, AAAAAArg.

H.

dxd 2/03

PCRU 6/03

QPcr .001 since 8/05

[Guest guest]

>

I was diagnosed with CML the first of May 2006.

I started on Gleevec 600mg. I am now on 300 mgs.

I have had several problems. My upper arms have

itched and little nausea. My biggest problem is

gout. I understand it is caused by uric acid.

My left foot is really swollen and a time hurt

when touched by anything including bedding.

I have been able to keep my weight under

control, but with this gout thing I am

unable to exercise. Has anyone else suffered

from gout and the swelling that goes with it?