edema issues

[Guest guest]

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