Re: newly diagnosed with CML

[Guest guest]

You may want to be sure your Onc has looked at your eyes. I had lots of

hemorrhages in my eyes at time of my Dx. My eyes were full of leukemic cells.

M

y Onc had a surgical optomologist (spelling) see me in the hospital and

afterwards. His words were pretty startling. Had I not seen a Dr, I would

have

lost my eye site. Thank goodness for Gleevec, my eye site has returned to

20/25. Just like before I started going downhill. Do speak with your Onc.

You are probably seeing him/her often right now. I know I did almost everyday

for the first two weeks as my case was so severe.

Remember, you are the boss of your body. Sometimes you have to tell the Dr

what is going on. Don't assume since they did not ask or bring it up that it

is all ok. Just how I have handled my own treatments and am happy to say I

am now doing very well. Not great, yet, but very good!

Chris

************************************** See what's new at http://www.aol.com

[Guest guest]

Hell Claudemir:

Yes, I experienced them when I was on 800 mg of Gleevec

each day. However it is still something you want to discuss

with your medical team. Over time, the side effects of

Gleevec will dissipate and you will feel better, but in the

beginning, it is important to take charge and discuss

any items out of the ordinary with your doctor.

With warm regards,

Matt

ville, FL

Father of 3

************************************** See what's new at http://www.aol.com

[Guest guest]

Hi , I was actually to be in with a retinal specialist the morning I

ended up in the ER thinking I was having a heart attack. I was in A-fib for

about 12 hours, but kept passing out from lack of blood. I finally came to and

got myself to the ER only to learn the term CML. My eye Dr was not sure

what he was looking at. But, for months I thought my eyes were just going

downhill. I could close my right eye and most everything in my left would just

turn gray. It was really weird. I started using reading glasses and all. My

WBC was 544 when I finally went in. In my case, I was never thinking

anything major was going on as I had seen 4 Dr's for 3 different things over a

4

month period. No one ever suggest a CBC. Wow, was I disappointed when I found

out what really was wrong. It would not have changed the Dx, but could have

started treatment much sooner.

Chris

************************************** See what's new at http://www.aol.com

[Guest guest]

Hi

That's very interesting. When I was taking Gleevec 800mg/day I often had

hemmhoraging in my eyes but no doctor ever said it could be an overload of CML

cells. Now that I'm on Sprycel I've only had one minor hemmhorage in one eye

that disappeared very quickly. Also interesting in the comparison of the drugs

(maybe).

L

Re: [ ] newly diagnosed with CML

You may want to be sure your Onc has looked at your eyes. I had lots of

hemorrhages in my eyes at time of my Dx. My eyes were full of leukemic cells.

M

y Onc had a surgical optomologist (spelling) see me in the hospital and

afterwards. His words were pretty startling. Had I not seen a Dr, I would have

lost my eye site. Thank goodness for Gleevec, my eye site has returned to

20/25. Just like before I started going downhill. Do speak with your Onc.

You are probably seeing him/her often right now. I know I did almost everyday

for the first two weeks as my case was so severe.

Remember, you are the boss of your body. Sometimes you have to tell the Dr

what is going on. Don't assume since they did not ask or bring it up that it

is all ok. Just how I have handled my own treatments and am happy to say I

am now doing very well. Not great, yet, but very good!

Chris

************************************** See what's new at http://www.aol.com

[Guest guest]

, I am please to report that my eyesight is back to normal. Even the

eye specialist called in on my case was stunned at the turn around. I do not

want to alarm you with this next statement, I clearly remember him telling

me while I was in the hospital, had I not sought help, I would have been

permanently blind within two weeks. Everyone's case is different. Mine was so

accelerated, I am just glad to be alive. I had lots of scary statements like

that over the days I spent in the Hospital. I had to have 3 transfusions the

first day. I was told if I did not get blood immediately, my time was

limited. Talk about scared. I went in to get bypass surgery as I thought it

was a

heart attack. They were even more stunned when I told them I drove myself.

I had to walk about a 1/4 mile that morning to tell my customer I could not

work his big spring sale that weekend, I thought I was having a heart attack.

It was a crazy, very surreal few days for me.

It does get better. It was not that many months ago I was on here asking

members about getting on with life and getting your old life back. What I

learned here, really helped me get back on track and to where I am now.

Thanks everyone!!!

Chris

************************************** See what's new at http://www.aol.com

[Guest guest]

, yes, it was classic: enlarged spleen, horrible night sweats, always

tired and a fatigued. Then we found the WBC of 544 and the eroding eyesight.

I thought the night sweats was some weird flu, this was in Feb. The

spleen, I noticed it in the shower, soap - water and rinsing off. I was like,

I

never noticed that extra rib there! haha I was thinking that was odd. I did

not have a clue what was going on. I felt pretty dumb once I was Dx'd.

But, not like any of us knew what we had, or were sitting around thinking, gee,

it might be CML.

Best news is I am feeling so much better and more myself without faking it

than I have since before the problems started showing up, exactly one year

ago. It was last October that the signs started showing up. My Dx was 1

March,

2007 at 0:805. The ER Dr comes in, slides the glass door shut, pulls the

curtain. Tabitha and I are sitting there with our saucer sized eyeballs as he

tells me: " Mr. Flocken, your visit here today will be life changing. " I

asked, so what am I getting a quadruple, instead of a double by-pass? He

smiled

and said he wished it were that simple. Then the words, CML. Tab must have

said, " what " at least 10 times. I just said what dumb thing that came to

mind, ok, I am not nuts, there is something wrong and it was good that I came

in?

This is all the way it went down. Crazy, but true. I seriously do try to

see my CML as a blessing, like eye color or freckles, just some small part of

who I am, and not what I am. I did not think I would find that, I actually

feared I would not find that. But, I am here today to say, CML is like one

of the house guest that just will not leave, but is family, so you cannot just

kick him out! I know it may seem I am being lighthearted about it. Not

really, but my way of handling the CML and being its boss, rather than it

handling and defining me.

Hope this somehow helps you or others,

Chris

************************************** See what's new at http://www.aol.com

[Guest guest]

Hi Claudemir - welcome also.

I haven't had any red spots, but suffer from the wonderful puffy eyelids and

very sensitive sore eyes (especially to light) and have constant headaches.

Regards,

From: [mailto: ] On Behalf Of

Claudemir

Sent: Sunday, 21 October 2007 10:13 PM

Subject: [ ] newly diagnosed with CML

My name is Claudemir, and I was diagnosed with CML October 16 2007.

I've been on gleevec for the past two days, and I saw some red spots

in the white of my eyes. Has anyone experienced the same thing?

Thank you for having this group.

[Guest guest]

Chris!

Am stunned to hear about your eyesight. I have had trouble for soooo long--but

because I'm

diabetic, that was always blamed. As I'm an artist (not great) this even led to

depression

because I just couldn't use eyes. I have same experience with closing one eye.

Did that clear

uP? How is your vision now? I never even read or heard any possiblility that

the CML was

causing the problem.

Thanks again!

>

>

>

> ************************************** See what's new at http://www.aol.com

>

>

>

[Guest guest]

WOW – that is amazing! With that level of CML, did you have an

enlarged spleen and not know?

Regards,

_____

From: [mailto: ] On Behalf Of

letitbe@...

Sent: Monday, 22 October 2007 11:52 AM

Subject: Re: [ ] Re: newly diagnosed with CML

, I am please to report that my eyesight is back to normal. Even the

eye specialist called in on my case was stunned at the turn around. I do not

want to alarm you with this next statement, I clearly remember him telling

me while I was in the hospital, had I not sought help, I would have been

permanently blind within two weeks. Everyone's case is different. Mine was

so

accelerated, I am just glad to be alive. I had lots of scary statements like

that over the days I spent in the Hospital. I had to have 3 transfusions the

first day. I was told if I did not get blood immediately, my time was

limited. Talk about scared. I went in to get bypass surgery as I thought it

was a

heart attack. They were even more stunned when I told them I drove myself.

I had to walk about a 1/4 mile that morning to tell my customer I could not

work his big spring sale that weekend, I thought I was having a heart

attack.

It was a crazy, very surreal few days for me.

It does get better. It was not that many months ago I was on here asking

members about getting on with life and getting your old life back. What I

learned here, really helped me get back on track and to where I am now.

Thanks everyone!!!

Chris

************************************** See what's new at http://www.aol.

<http://www.aol.com> com

[Guest guest]

Gee that is unreal and am so glad it has worked out for you so well.

That would have been so awful and scary for you both! I take it after all

that, you didn't need the heart bypass?

I thank my GP (who I had changed to not long before) everyday that he

decided to do a general blood test checkup....cholesterol and all that

before a scheduled colonoscopy that showed a change in my bloods and then

led to me being diagnosed very early with no spleen enlargement. While I

would prefer not to have than CML, I can certainly think of a dozen other

illnesses that would be a heck of a lot worse!

Regards,

_____

From: [mailto: ] On Behalf Of

letitbe@...

Sent: Monday, 22 October 2007 12:20 PM

Subject: Re: [ ] Re: newly diagnosed with CML

, yes, it was classic: enlarged spleen, horrible night sweats, always

tired and a fatigued. Then we found the WBC of 544 and the eroding eyesight.

I thought the night sweats was some weird flu, this was in Feb. The

spleen, I noticed it in the shower, soap - water and rinsing off. I was

like, I

never noticed that extra rib there! haha I was thinking that was odd. I did

not have a clue what was going on. I felt pretty dumb once I was Dx'd.

But, not like any of us knew what we had, or were sitting around thinking,

gee,

it might be CML.

Best news is I am feeling so much better and more myself without faking it

than I have since before the problems started showing up, exactly one year

ago. It was last October that the signs started showing up. My Dx was 1

March,

2007 at 0:805. The ER Dr comes in, slides the glass door shut, pulls the

curtain. Tabitha and I are sitting there with our saucer sized eyeballs as

he

tells me: " Mr. Flocken, your visit here today will be life changing. " I

asked, so what am I getting a quadruple, instead of a double by-pass? He

smiled

and said he wished it were that simple. Then the words, CML. Tab must have

said, " what " at least 10 times. I just said what dumb thing that came to

mind, ok, I am not nuts, there is something wrong and it was good that I

came

in?

This is all the way it went down. Crazy, but true. I seriously do try to

see my CML as a blessing, like eye color or freckles, just some small part

of

who I am, and not what I am. I did not think I would find that, I actually

feared I would not find that. But, I am here today to say, CML is like one

of the house guest that just will not leave, but is family, so you cannot

just

kick him out! I know it may seem I am being lighthearted about it. Not

really, but my way of handling the CML and being its boss, rather than it

handling and defining me.

Hope this somehow helps you or others,

Chris

************************************** See what's new at http://www.aol.

<http://www.aol.com> com

[Guest guest]

, no, no by-pass, that was just me assuming. I knew what a PVC heart

rate was like, this was a PAC and I knew it. I could tell. I told the ER Dr

to get me a good cardiologist for this. In the end, I had to have one to get

me back in rhythm. Oh yea, they did that shock the heart back into rhythm

thing. That was a little scary, but so was a nearly 200 heart rate as well.

Chris

************************************** See what's new at http://www.aol.com

[Guest guest]

I bet it was – far better to be zapped than have to go through a bypass!

Regards,

_____

From: [mailto: ] On Behalf Of

letitbe@...

Sent: Monday, 22 October 2007 9:31 PM

Subject: Re: [ ] Re: newly diagnosed with CML

, no, no by-pass, that was just me assuming. I knew what a PVC heart

rate was like, this was a PAC and I knew it. I could tell. I told the ER Dr

to get me a good cardiologist for this. In the end, I had to have one to get

me back in rhythm. Oh yea, they did that shock the heart back into rhythm

thing. That was a little scary, but so was a nearly 200 heart rate as well.

Chris

************************************** See what's new at http://www.aol.

<http://www.aol.com> com