Re: edema issues

[Guest guest]

Hi Lora,

Thank you so much for writing back about this issue. My heart goes

out to Terry for having to put up with this as well. Isn't it enough

that we have CML and that we are trying to keep ourselves alive and

happy? Now, all this extra weight on top of it?

I too am very concerned about long term. I am 43 and have two young

children, age 6 and 10. I did the career thing in my 20's and early

30's and have been a stay at home Mom for 10 years. Now, I couldn't

get disability if I tried because I've been raising my own kids!

At this point, there is no way I could hold down a job. I feel like

I'm riding a rollercoaster, going up and down with side effects, and

never knowing how the next day will be. On the good days, I tend

to " overdo " because I'm playing " catchup " .. Then, the next day, I'm

nearly horizontal, because I pushed too hard. It's hard to find the

balance.

I was once a long distance cyclist, working full time and training

300 miles a week. Now, I don't even recognize that person. It's

like I've done a 180!

It's so hard some days. I want to run around with my girls and I

can't. Thank God I have a great husband who takes over when I

can't. I feel so burned out and blimped out. It's obvious it's

water weight, but it's not coming off.

I had a consult with Dr. Druker to make sure I was doing everything

possible for my CML and to discuss my side effects. Unfortunately, I

didn't get a good response from him regarding my side effects. He

didn't even want me to pull up my sleeve so I could show him my

blimped out arms that look like a sausage casing! He just kept

saying not to blame everything on Gleevec, so I was highly put off,

because I was never like this beforehand! He gave me no remedies or

advice. I'm even worried about long term Lasix usage. (I don't want

to be on it forever if I don't have to!) So, where do you go from

that?

My own Hem/Onc is very compassionate and aware of the edema, but also

offers no advice other than to continue with the Lasix.

I honestly don't know what to do. I even wrapped my legs in ace

bandages and elevated them one night, but it's effect is only

temporary. The next day, I was back to puffy.

Sincerely,

Lynn (Snickersunny)

>

> Lynn, my dh, Terry, has gained over 80 pounds since getting

diagnosed with

> CML. He has now dropped 15 pounds since going up to the 40mg of

Lasix. To

> be honest, he can't seem to make any further progress....and yep,

you can tell

> it is water weight, just looking at his face & how puffy it

is......even

> though he is now on Dasatinib, he still has Gleevec eyes as we

call it.

> However, they do look better than when he was on Gleevec.

>

> Terry definitely eats probably half of what he did previous to all

this

> happening. He is a big guy to begin with, 6 foot 1, and usually

hovering at 275

> pounds. When he started really putting on the pounds at

Christmas time, I

> kept trying to get our oncologist attention about the water

weight, but he

> just sees Terry as an overweight, lazy guy. By the time it was

February, and

> Terry was admitted to the hospital, Terry was up to 350

pounds...and

> apparently, the other docs on Terry's case must have said

something harsh to the

> oncologist because when he finally came in to see Terry on rounds,

he just paced &

> paced and was " stressing " about Terry's weight. Well, too

little, too

> late!!! Terry was what I called the Stay-Puff Marshmellow Man

from the

> Ghostbuster movie. He could barely function, barely walked, he

was so " puffed " out,

> I thought if somebody stuck a toothpick in him, he would burst

open & water

> would pop out.

>

> We were at a local Leukemia Society meeting about two weeks before

this

> happened, and several folks pulled me aside to say how bad Terry

looked. I

> certainly agreed...but we were seeing the oncologist about every

two weeks, and if

> he was ignoring it, even if I was waving my arms,

screaming, " danger, Will

> " .....not much else I could do.

>

> Terry has been on Dasatinib for over 3 months now....the leg cramps

are

> back, but his weight is holding steady. He is having much more

issues of trying

> to walk at all.....so, if in Walmart, he uses a wheelchair, just

so he can

> be more comfortable. He would like to exercise more..but with

the 100 degree

> plus heat each day, now he is working fulltime!!!....he just comes

home &

> collapses and goes to sleep. He is a big water drinker...but if

you ask me, I

> think he drinks less than he used to, also.

>

> the concerns I have long term with the edema is not only the

excessive

> weight, but the weight impacting his legs, muscles, and joints,

feet, trying to

> support that weight. Also, I am highly concerned about the toll

on his heart

> trying to support the heavier body.

>

> I kind of thought that Terry would drop some water weight with the

summer

> heat..but it doesn't seem to be happening to me. So, I know I will

put edema

> on my list on his next oncology viist.

>

> Lynn, I can only urge you to ask for more extensive help from your

> oncologist, since the edema is such a concern to you.

>

> Lora

>

>

>

[Guest guest]

Hi Lora,

My goodness, this sounds extremely frustrating and painful!

I'm surprised that three months after stopping Gleevec the edema has not

improved. Have the docs done tests to rule out other causes of the

edema, rather than simply trying to blame Gleevec and leaving it at

that?

There are other possible causes of edema, as you probably know,

including congestive heart failure, circulatory problems, cirrhosis,

kidney disease, etc.

Also, some people develop resistance to diuretics, which means they stop

working. Some people also develop tolerance of diuretics, which can

develop with long-term use (the body isn't affected anymore by them).

These may be suspected if people have persistent edema despite diuretic

use, low sodium diet and physical activity.

I sure hope you continue to work with the docs to get to the true bottom

of this, as an underlying cause may be going untreated.

G.

www.cmlsupport.com

www.upstairswindow.org

[ ] edema issues

Lynn, my dh, Terry, has gained over 80 pounds since getting diagnosed

with

CML. He has now dropped 15 pounds since going up to the 40mg of Lasix.

To

be honest, he can't seem to make any further progress....and yep, you

can tell

it is water weight, just looking at his face & how puffy it is......even

though he is now on Dasatinib, he still has Gleevec eyes as we call it.

However, they do look better than when he was on Gleevec.

Terry definitely eats probably half of what he did previous to all this

happening. He is a big guy to begin with, 6 foot 1, and usually hovering

at 275

pounds. When he started really putting on the pounds at Christmas time,

I

kept trying to get our oncologist attention about the water weight, but

he

just sees Terry as an overweight, lazy guy. By the time it was February,

and

Terry was admitted to the hospital, Terry was up to 350 pounds...and

apparently, the other docs on Terry's case must have said something

harsh to the

oncologist because when he finally came in to see Terry on rounds, he

just paced &

paced and was " stressing " about Terry's weight. Well, too little, too

late!!! Terry was what I called the Stay-Puff Marshmellow Man from the

Ghostbuster movie. He could barely function, barely walked, he was so

" puffed " out,

I thought if somebody stuck a toothpick in him, he would burst open &

water

would pop out.

We were at a local Leukemia Society meeting about two weeks before this

happened, and several folks pulled me aside to say how bad Terry looked.

I

certainly agreed...but we were seeing the oncologist about every two

weeks, and if

he was ignoring it, even if I was waving my arms, screaming, " danger,

Will

" .....not much else I could do.

Terry has been on Dasatinib for over 3 months now....the leg cramps are

back, but his weight is holding steady. He is having much more issues of

trying

to walk at all.....so, if in Walmart, he uses a wheelchair, just so he

can

be more comfortable. He would like to exercise more..but with the 100

degree

plus heat each day, now he is working fulltime!!!....he just comes home

&

collapses and goes to sleep. He is a big water drinker...but if you ask

me, I

think he drinks less than he used to, also.

the concerns I have long term with the edema is not only the excessive

weight, but the weight impacting his legs, muscles, and joints, feet,

trying to

support that weight. Also, I am highly concerned about the toll on his

heart

trying to support the heavier body.

I kind of thought that Terry would drop some water weight with the

summer

heat..but it doesn't seem to be happening to me. So, I know I will put

edema

on my list on his next oncology viist.

Lynn, I can only urge you to ask for more extensive help from your

oncologist, since the edema is such a concern to you.

Lora

[Guest guest]

I don't have swelling that you can see but I have put on weight since being

diagnosed. I was diagnosed in 10/05 and was down to 200 lbs...I'm around 230

now and so depressed about it. I feel horrible especially since I haven't done

anything different and have gone back up in my weight. I am more depressed

obviously but that's about it. I do feel that my upper legs are puffy but no

one could tell because I'm fat to begin with. Anyway, I was responding to your

question about the swelling and I only have had it sporadically and usually

taking it easy helped. I hope you're able to find a solution.

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[Guest guest]

In a message dated 7/18/2006 4:27:29 P.M. Eastern Daylight Time,

lunaemica@... writes:

diagnosed in 10/05 and was down to 200 lbs...I'm around 230 now and so

depressed about it. I feel horrible especially since I haven't done anything

different and have gone back up in my weight. I am more depressed obviously but

that's about it. I do feel that my upper legs are puffy but no one could tell

because I'm fat to begin with. Anyway, I was responding to your question about

the swelling and I only have had it sporadically and

I too have suffered tremendous weight gain, and when I talked to the doctor

I had at UMass in February about edema, he threw his head back and laughed.

Said, " There is no clinical evidence that Gleevec causes edema. " I wanted to

smack him. Of COURSE there is clinical evidence.......well, that's what this

doctor was like, and he is long gone. He is thankfully not at my hospital

anymore, but it was just one example of how he treated my fears, concerns, and

complaints about Gleevec side effects.

Also, women in menopause will have a tougher time, the pituitary gland goes

whacky, hormones and metabolism are affected by treatment, as well. Plus the

fact that when one is fatigued, has pain, and does not exercise as one did

pre-CML, it is only natural that our bodies will change.

Currently I am having a heck of a time with " water on the knee " , edema

surrounding my knee that has to be drained. It started just after they raised my

dose from 400 to 600mgs. and has been a real downer since. I cannot walk

without grimacing, and I have to keep it iced, etc.

I was JUST starting an exercise program, walking, swimming, horseback riding

when it hit me, and now I am having to sit most of the day with the weight

off the leg! This stinks!

Also, with the incredible heat and humidity we are having, I cannot take my

Lasix because I get severe cramping, always keeping a bottle of tonic water

with quinine beside me.

I hope the BMS drug proves to be the better CML treatment, and I am pursuing

that this fall.

For those who have gained weight and feel awful, don't feel alone. There are

many of us out there in the same place. Love and hugs, Lynne A.

[Guest guest]

Lynne you are right, a lot of CML'ers are suffering from weight gain. I have

the same problem. Since I was dxd in 1/03 I put more than 35 lbs and I can't

loose it. I am 55 years old and due to the fatigue with a full time job,

normally I don't have time and energy to exercise. I cut my calories to offset

exercises but still not working. I still counting my blessing of being around my

kids and I am trying to enjoy life and forget my figure. It is hard though but

hey life is good.

Love and peace to you all

T

dxd 1/03

CCR 7/03

Zero # 764

Re: [ ] edema issues

In a message dated 7/18/2006 4:27:29 P.M. Eastern Daylight Time,

lunaemica@... writes:

diagnosed in 10/05 and was down to 200 lbs...I'm around 230 now and so

depressed about it. I feel horrible especially since I haven't done anything

different and have gone back up in my weight. I am more depressed obviously

but

that's about it. I do feel that my upper legs are puffy but no one could tell

because I'm fat to begin with. Anyway, I was responding to your question about

the swelling and I only have had it sporadically and

I too have suffered tremendous weight gain, and when I talked to the doctor

I had at UMass in February about edema, he threw his head back and laughed.

Said, " There is no clinical evidence that Gleevec causes edema. " I wanted to

smack him. Of COURSE there is clinical evidence.......well, that's what this

doctor was like, and he is long gone. He is thankfully not at my hospital

anymore, but it was just one example of how he treated my fears, concerns, and

complaints about Gleevec side effects.

Also, women in menopause will have a tougher time, the pituitary gland goes

whacky, hormones and metabolism are affected by treatment, as well. Plus the

fact that when one is fatigued, has pain, and does not exercise as one did

pre-CML, it is only natural that our bodies will change.

Currently I am having a heck of a time with " water on the knee " , edema

surrounding my knee that has to be drained. It started just after they raised

my

dose from 400 to 600mgs. and has been a real downer since. I cannot walk

without grimacing, and I have to keep it iced, etc.

I was JUST starting an exercise program, walking, swimming, horseback riding

when it hit me, and now I am having to sit most of the day with the weight

off the leg! This stinks!

Also, with the incredible heat and humidity we are having, I cannot take my

Lasix because I get severe cramping, always keeping a bottle of tonic water

with quinine beside me.

I hope the BMS drug proves to be the better CML treatment, and I am pursuing

that this fall.

For those who have gained weight and feel awful, don't feel alone. There are

many of us out there in the same place. Love and hugs, Lynne A.