Re: Re: Anyone with big edema issues?

[Guest guest]

I feel your pain sister. I was recently increased from 400 mg to 600 mg gleevec.

I work as a dietitian at 3 different dialysis units. The swelling around my

eyes-legs-breasts is just unbelieveable. Talk about wanting to pee. I eat bing

or Rainer cherries (natural dieuritic, drink caffeine-ditto, fiber-mini-wheats

twice a day. lasix 40 mg but only 2 or 3 days a week.) I walk, karate twice

weekly, yoga every morning and every night. I love salt but I broke with him

after our short happy hour affair of chips, salsa and that one ( okay one and

half) margarita's on the 4th. Yummy-but it's over I mean it! I gained like 10

pounds of fluid-no lie. I could push the fluid on my ankles and leave dents.

and I thought pitting edema was for my patients. My kidney function came back

beautifully as well (thank you Lord). I am still suffering on a daily basis

with this fluid around my eyes. When I move my eyeballs I can feel the fluid and

almost " hear " it. It is painful and give me

headaches that can literally make me want to vomit. In the mornings I but cool

packs on my eyes and use prescription drops. I try to sleep with my head

elevated. Recently I have also felt short of breath. I am going to see my

practioner next Tuesday and I am not leaving without suggestions for a quick

type of dehydration process. Have you ever tried massage therapy? I am

investigating this next.

<Educatorsusan@...> wrote:

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]

At 11:57 AM 7/19/06 -0700, you wrote:

> Have you ever tried massage therapy? I am investigating this next.

There is a type of massage called lymphatic massage that might be helpful

to get rid of body fluid. I know a physical therapy who works with

cancer/chemotherapy patients and I will see if he has some information that

might help. He does work on lymphedema.

C.

[Guest guest]

In a message dated 7/19/2006 5:20:53 P.M. Eastern Daylight Time,

crazee4daisy@... writes:

fluid around my eyes. When I move my eyeballs I can feel the fluid and

almost " hear " it. It is painful and give me

headaches that can literally make me want to vomit. In the mornings I but

cool packs on my eyes and use prescription drops. I try to sleep with my head

elevated. Recently I have also felt short of breath. I am going to see my

practioner next Tuesday and I am not leaving without suggestions for a quick

type

of dehydration process. Have you ever tried massage therapy? I am

investigating this next.

Say, maybe this is what is causing me to be nauseous every afternoon. I get

headaches about mid afternoon and all of a sudden I start wretching. We have

very high humidity here and I was taking Lasix every day, losing about 5 lbs.

a day, but now with the heat I stopped taking it because of severe cramping.

I also feel my left ear crackling a lot and I too, sleep with my head

elevated. I have Nasonex which helps with the ear thing, and I did try and use

an

ear cleaner, but that did not work.

I eat tons of fruit too, bananas, blueberries by the pound, and drink lots

of water all day long, but I had not heard of cherries as a diuretic. I shall

try anything! I take Potassium pill every morning along with breakfast, and

take Magnesium Calcium as well.

Thanks for sharing your problem with me, as I can always use some extra

suggestions. - Lynne A.

[Guest guest]

Hi I read your e-mail for the massage therapy? Does it work? I have the

same problem of water retention and weight gain. I take 20 mg of lasix only. I

may increases to 40 mg and see if it help.

Thank you

T

dxd 1/03

400 mg

PCRU pending

Re: [ ] Re: Anyone with big edema issues?

At 11:57 AM 7/19/06 -0700, you wrote:

> Have you ever tried massage therapy? I am investigating this next.

There is a type of massage called lymphatic massage that might be helpful

to get rid of body fluid. I know a physical therapy who works with

cancer/chemotherapy patients and I will see if he has some information that

might help. He does work on lymphedema.

C.

[Guest guest]

At 08:42 AM 7/22/06 -0400, you wrote:

>Hi I read your e-mail for the massage therapy? Does it work? I have

>the same problem of water retention and weight gain. I take 20 mg of lasix

>only. I may increases to 40 mg and see if it help.

>Thank you

>

> T

Hi ,

I am now on BMS.....when I was on Gleevec, 800mg, I only had a minor

problem with edema (puffy eyes, vocal cords, some inner knee

area)..............

I actually tried the lymphatic massage for something else (I was doing a

vaccine trial at the time and wanted to move the vaccine throughout my body

with the massage)...........

it is a very subtle massage but I really felt different after it. The LMT

working on me said that my lymphatic system was very sluggish and I think

this was related to Gleevec, and it was especially sluggish where I noticed

the edema, like my inner knee area.........so my thinking was that the

Gleevec edema which is often superficial (and you can see it) is in the

lymphatic system????

I think it is worth a try if you have edema. You need to find an LMT who

does lymphatic massage....I think they all learn it but I would want to

find one who is doing it regularly. If the edema is in the legs, I think

ideally you would have the massage and then use some support stockings to

keep the swelling down (which won't appeal to some people, because they

make you warm). The other factor is the cost, but maybe if you 'kick' your

lymph system into gear it will keep operating better. Also, you can learn a

simple version to have a partner do to you....there is a pattern that the

lymph system drains.

I have e-mailed a physical therapist friend of mine with CML......he works

with cancer patients and has a lymphedema program and I hope you has some

information to share and I will post it.

C. (retired PT)

[Guest guest]

At 12:45 AM 7/23/06 +0000, you wrote:

>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?

>

Hi ,

Where are you being treated? and what was your white count are diagnosis?

and what is your white cell count right now? The reason I am asking is

because if it was above 20,000 white cells, most of the cml specialists

also put you on a drug to prevent gout, which is caused by the uric acid

from all the dying cells from treatment. This drug is allopurinol (I think,

if I remember right).

When Dr. Druker (a leading specialist) does a blood chemistry he always

checks uric acid and LDH, which shows how much cell death is going on.

Why were you started at 600mg? and why were you reduced to 300mg?

Maybe you can provide us with a little more information and then others

will have some more ideas for you to take to your oncologist.

C.

[Guest guest]

Thank you for your reply. I will do more research on this message

therapy. You are right the edema is superficial and you can see it. I was

referred to a specialist to check my lymph node. My appointment is next month,

where I am planning to discuss the message therapy treatment. Thanks again and

God Bless

T

Re: [ ] Re: Anyone with big edema issues?

At 08:42 AM 7/22/06 -0400, you wrote:

>Hi I read your e-mail for the massage therapy? Does it work? I have

>the same problem of water retention and weight gain. I take 20 mg of lasix

>only. I may increases to 40 mg and see if it help.

>Thank you

>

> T

Hi ,

I am now on BMS.....when I was on Gleevec, 800mg, I only had a minor

problem with edema (puffy eyes, vocal cords, some inner knee

area)..............

I actually tried the lymphatic massage for something else (I was doing a

vaccine trial at the time and wanted to move the vaccine throughout my body

with the massage)...........

it is a very subtle massage but I really felt different after it. The LMT

working on me said that my lymphatic system was very sluggish and I think

this was related to Gleevec, and it was especially sluggish where I noticed

the edema, like my inner knee area.........so my thinking was that the

Gleevec edema which is often superficial (and you can see it) is in the

lymphatic system????

I think it is worth a try if you have edema. You need to find an LMT who

does lymphatic massage....I think they all learn it but I would want to

find one who is doing it regularly. If the edema is in the legs, I think

ideally you would have the massage and then use some support stockings to

keep the swelling down (which won't appeal to some people, because they

make you warm). The other factor is the cost, but maybe if you 'kick' your

lymph system into gear it will keep operating better. Also, you can learn a

simple version to have a partner do to you....there is a pattern that the

lymph system drains.

I have e-mailed a physical therapist friend of mine with CML......he works

with cancer patients and has a lymphedema program and I hope you has some

information to share and I will post it.

C. (retired PT)