Re: what condition my condition is in. (giggle)

[Guest guest]

Hi ,

It's nice to get back to what these lists were designed for, thanks

so much for posting! Let me take a stab at the issues you've been

having.

The blood in the urine doesn't seem to be a common complaint that

I've heard from people on Gleevec. I remember reading one time that

many times when people have blood in their urine, no cause is ever

found. Just the same, I would ask these questions: Are you getting

kidney function tests done routinely? Have you had a PSA and

prostate exam lately? Has anyone ever explored the possibility of a

bladder infection and tried you on anti-biotics? I wouldn't stop

exploring different possibilities until you're satisfied with some

kind of answer.

Your tummy issues are relatively common on Gleevec. Let me ask you

this, are you getting liver tests done regularly? Has anyone

checked you for possible gall bladder problems?

Your memory issues are also quite common with Gleevec users. I

thought my memory was also shot when I started Gleevec (3 years ago)

but then it occured to me that it wasn't actually my memory that was

suffering but my concentration. I couldn't keep a thought process

going or I couldn't do two things at the same time. It can be

difficult to sort through what might be " memory " and what might

be " concentration " but either way, you certainly aren't alone with

this. I'm not aware of anything that helps with it either, sorry.

Your eye issues are very common on Gleevec. My eyes are also

puffy. Some people have found that it helps to sleep with their

head elevated on a higher pillow but I personally haven't found

that. Others have taken a diuretic that has helped but with your

bladder/kidney issues, that might not be a smart thing to do right

now. I find for me, it gets much better as the day goes on but when

I first wake up, I look like I've been in a boxing match. I guess

there's no place for vanity when you have CML The watery eyes is

also common. I find if I wipe them with a warm cloth, it helps and

the leaking stops.

How long have you had the rash? Some people develop what they call

a " Gleevec rash " . For some it's been serious enough to go on

Prednisone but for others it's just a slight nuisance that they live

with.

The hypopigmentation is VERY common with Gleevec. The reason is

because Gleevec also inhibits an enzyme called c-kit which is used

in the production of melanine. Melanine is what gives us our skin

colour. Unfortunately there isn't anything you can do about this but

you MUST be careful in the sun. Because your skin is lighter, it

can burn easily and you must wear sun screen to protect yourself.

I know exactly what you're talking about with the fatigue issues.

I'm also wiped out most of the time and often take naps. How is

your Hgb? Some people are very anemic on Gleevec and find that

taking Procrit helps. I just found out that I " m low in B-12 so this

might be contributing to the problem. Have you ever had your iron

checked? Some people (like me) can actually have a normal Hgb count

but be low in iron and B-12.

The depression is also common. Dealing with CML is a stressful

thing. I don't know if any direct links have been made with Gleevec

and depression but certainly anyone living with cancer, is bound to

feel depressed sometimes. If you find the Welbutrin isn't doing as

much as it could, ask your doctor to try a different anti-

depressant. There's a myriad of drugs out there that treat

depression and some will work better for some people than others.

It's basically a trial and error thing.

Bottom line is you're not alone!

Take care and thanks for taking the time to post,

Tracey

dx Jan 2002

[Guest guest]

Hi ,

Some time ago we talked on chat and talked of getting

together. I live in Bellevue, but hopefully we will be moving to

Moses Lake this year. I'm sorry things aren't going better for you,

but stay after your doctors to find out what is going on. How are

your blood counts and what were your last pcr results? It is good to

hear from you again and keep us posted on how you are doing.

Take care,

>

> First off wanted to say to " K " , I love you Sis. I hope you an

> are doing well.

>

> Ok now on to the posting ~ I was DX'd june 2000 started gleevec

june

> 2001 @ 400 mg, but I was reduced to 300 mg in Oct 2004.

>

> What condition my condition is in

>

> I don't seem to be able to tell how I feel when I'm seeing the

> doctor, and I'm trying to explain my condition this way.

>

> 1) Starting with going to the bathroom, I have been having a

> problem with this for a long time now,, it started with blood in

my

> urine I'd say Jan. of 2002, I went to a doctor in Bellingham and

he

> did a cyctoscopy, he found no reason for the bleeding from his

> test. I stopped working at the end of February 2002 and a month

> later or so, the bleeding had gone away enough to where I could no

> longer see it in my urine, I did have a test for blood again,

later

> in 2002 and a small amount of blood was found,, (we have never

found

> the cause of the bleeding and have moved on past looking for it ,,

> there are still times however that I do think that I am seeing

blood

> once again in my urine, it is usually preceded by pain in my sides

> just under my rib cage, but it dose not seem to last long. (Now)

> this urine problem has also been causing me to loose control with

> holding my urine at times, I sometimes feel the need to pee but

can

> not,, then moments later I will need to hurry to the rest room to

> pee., Also,, it often happens now that just out of the blue, I

> realize that I need to go pee, and I need to hurry, (I don't

always

> make it anymore). This is something that I had been thinking is

> caused by the meds I take for the leukemia, however it needs to be

> known that my grandfather died from blather cancer, and my father

> just had his prostrate removed because of cancer in his prostrate.

>

> 2) Bad tummy, this seems to be a constant problem for me. The

meds

> I take for my tummy are Protonix and Hyoscyamin and from the

> Hyoscyamin, I seem to get relief from pain for short times,, but I

> am taking the pill three to four times a day. The pain moves and

is

> not always in the same place.. some times it lower left side, or

> right/left side just under my ribs. But I only take the pill when

> the pain is in the middle of my gut. I hate the pain in my tummy

> and it is almost always there. I feel sick to my tummy a lot, and

> get sick enough to vomit, not as much as I used to, but its still

> happening about three times a week.

>

> 3) Memory, or lack of, this is better some days then others , but

it

> is a problem sometimes,, I have been trying to think more, to use

my

> mind, but I still seen to always forget things,, Short term things

> mostly. I really am tired of always looking for what I just had

in

> my hand, I often finds that I cant say a complete thought without

> forgetting what is was I wanted to say when I started the sentence.

>

> 4) My eyes are almost always puffy and reddish around the eye. In

> the morning I am having to continually wipe my eyes, until they

stop

> seeping fluid.

>

> 5) Rash and bumps on body,, I have seen these on my chest but it

> seems to be worse on my feet.

>

> 6) Hypopigmentation –(a fifty cent word )- loss of skin coloring.

I

> see this mostly on my face, although its not painful , it makes

me

> not want to be seen in public, and it is a constant reminder to me

> of my condition.

>

> 7) Energy, I try to do things, (ie. House work and some yard work)

> and some days are better then others. I get tired easy and I can

> only do a little at a time. I have to rest a lot during the day,

and

> try to have a nap in the afternoon.

>

> 8) Depression, I feel down some days but I take welbutrin to help

> me, and I think it helps. I have been very depressed in the past

and

> know what its like to be depressed. I do not think that at this

> time , I suffer from depression much more then a otherwise healthy

> person would.

>

>

> Well Im sure there's more that I am forgetting even though I have

> been working on this letter for weeks now I still feel like Im

> forgetting stuff.

>

> If anyone has sugestions for me, i would be happy to see them.

>

> Hang tough, ttfn,

[Guest guest]

--- > Hey Bro . .

First of all, you didn't tell me all of this. . .and 2nd. . .

everything you are experiencing I have a problem with also. , I

thought all of these are side effects of the 'gold'. For those in

the group who don't know me: my 'bug' is CML, and my 'gold' is

Gleevec. Now you are making me think. I did the same thing with the

chest pain, and now I have 2 stents. I guess I better complain to my

dr. The only side effect I don't have is the depression. I am, as

you know, just 'too UP' for that.

Well Bro, I will try to resend that to you. Enjoy the rest of the

weekend with Ora and I'm gonna get back to cleaning my office. Still

on my break(ha-ha). I saw you go offline, & 's not complaining

about the tooth today, thanx God.

Chat later, Love Ya

" K "

" IAIN'TFINISHEDYET " !!!

> First off wanted to say to " K " , I love you Sis. I hope you an

> are doing well.

>

> Ok now on to the posting ~ I was DX'd june 2000 started gleevec

june

> 2001 @ 400 mg, but I was reduced to 300 mg in Oct 2004.

>

> What condition my condition is in

>

> I don't seem to be able to tell how I feel when I'm seeing the

> doctor, and I'm trying to explain my condition this way.

>

> 1) Starting with going to the bathroom, I have been having a

> problem with this for a long time now,, it started with blood in

my

> urine I'd say Jan. of 2002, I went to a doctor in Bellingham and

he

> did a cyctoscopy, he found no reason for the bleeding from his

> test. I stopped working at the end of February 2002 and a month

> later or so, the bleeding had gone away enough to where I could no

> longer see it in my urine, I did have a test for blood again,

later

> in 2002 and a small amount of blood was found,, (we have never

found

> the cause of the bleeding and have moved on past looking for it ,,

> there are still times however that I do think that I am seeing

blood

> once again in my urine, it is usually preceded by pain in my sides

> just under my rib cage, but it dose not seem to last long. (Now)

> this urine problem has also been causing me to loose control with

> holding my urine at times, I sometimes feel the need to pee but

can

> not,, then moments later I will need to hurry to the rest room to

> pee., Also,, it often happens now that just out of the blue, I

> realize that I need to go pee, and I need to hurry, (I don't

always

> make it anymore). This is something that I had been thinking is

> caused by the meds I take for the leukemia, however it needs to be

> known that my grandfather died from blather cancer, and my father

> just had his prostrate removed because of cancer in his prostrate.

>

> 2) Bad tummy, this seems to be a constant problem for me. The

meds

> I take for my tummy are Protonix and Hyoscyamin and from the

> Hyoscyamin, I seem to get relief from pain for short times,, but I

> am taking the pill three to four times a day. The pain moves and

is

> not always in the same place.. some times it lower left side, or

> right/left side just under my ribs. But I only take the pill when

> the pain is in the middle of my gut. I hate the pain in my tummy

> and it is almost always there. I feel sick to my tummy a lot, and

> get sick enough to vomit, not as much as I used to, but its still

> happening about three times a week.

>

> 3) Memory, or lack of, this is better some days then others , but

it

> is a problem sometimes,, I have been trying to think more, to use

my

> mind, but I still seen to always forget things,, Short term things

> mostly. I really am tired of always looking for what I just had

in

> my hand, I often finds that I cant say a complete thought without

> forgetting what is was I wanted to say when I started the sentence.

>

> 4) My eyes are almost always puffy and reddish around the eye. In

> the morning I am having to continually wipe my eyes, until they

stop

> seeping fluid.

>

> 5) Rash and bumps on body,, I have seen these on my chest but it

> seems to be worse on my feet.

>

> 6) Hypopigmentation –(a fifty cent word )- loss of skin coloring.

I

> see this mostly on my face, although its not painful , it makes

me

> not want to be seen in public, and it is a constant reminder to me

> of my condition.

>

> 7) Energy, I try to do things, (ie. House work and some yard work)

> and some days are better then others. I get tired easy and I can

> only do a little at a time. I have to rest a lot during the day,

and

> try to have a nap in the afternoon.

>

> 8) Depression, I feel down some days but I take welbutrin to help

> me, and I think it helps. I have been very depressed in the past

and

> know what its like to be depressed. I do not think that at this

> time , I suffer from depression much more then a otherwise healthy

> person would.

>

>

> Well Im sure there's more that I am forgetting even though I have

> been working on this letter for weeks now I still feel like Im

> forgetting stuff.

>

> If anyone has sugestions for me, i would be happy to see them.

>

> Hang tough, ttfn,