Catching Up

[Guest guest]

Hello dear CML Buddies!

I so apologize for not posting more. And more so, I apologize for not

jumping on the chat group on Tuesday nights. I can't believe how busy

life got. I sometimes feel guilty at not posting because these groups

were my life line at initial diagnosis and early on. I know how

important it is to interact, educate, share and support. Mea culpa!

I have gone back to work - having had the summer off. I had

bunionectomies - one on the right foot May 29 and the left foot July 14.

So I have been SLOW getting around.I was able to go into the mountains

for a week of rest, and wrote 8 of the 10 chapters of my book " The Grace

of Cancer " . I have two more chapters to go. I don't know if I will

ever do anything with it or not, but I just need to write the memoir

for some reason. And I love to write. I can also say that CML has

changed me for the better.

We teachers had to go back Aug. 4 and it has been putting the 'pedal to

the metal' since. My time has not been my own. It feels good to be back

in the classroom again, although I am extremely tired. My feet are not

completely healed so they hurt most nights and I am finding myself in

bed by 7 pm and asleep 15 minutes later. So Zavie, Lottie and all, I

promise to be better!!

I have been on tasigna since Dec. 2007. I remain PCRU and am grateful

for the lessened side effects. I have tackeled the vertigo and it is

virtually gone. Those exercises Bobby gave me worked!!! My latest tests

in August were all normal. This is the second time my counts have all

fallen in the normal range. So I think I can't blame the fatigue on

anything but age - Shucks!!

I am headed to Seattle this morning for a family wedding to return on

Monday. So I am sure I won't be posting much until next week.

I hope you all are well, coping and knowing that together we are strong!

Love, Barb

[Guest guest]

Dear Barb,

I am sure I speak for everyone when I say that there is no

pressure to post all the time. I, myself, have been pressured to

post regularly on other support groups but I don't feel that way

here. I think everyone here is pretty non-judgmental and, basically,

you post when you can. I am so glad that you continue to be PCRU. I

am having two side effects from Gleevec besides the usual cramping of

muscles from time to time. I have edema in my feet and I get pock

marks and blood blisters in my armpits and upper arms. It is not

anything I can't deal with, for now. It is nice to know that we have

other treatment options in case things get too overbearing. I don't

go back to the classroom until August 28th. I am getting sad at the

prospect of going back to work and not being home with my boys. I

have enjoyed being with them full time all summer. Oh well, raising

kids is expensive, so... I hope you continue to heal well from your

surgery. I hope to talk to you again soon.

Love,

--- In , " Barb Stanley " <barbarastanley@...>

wrote:

>

>

> Hello dear CML Buddies!

>

> I so apologize for not posting more. And more so, I apologize for

not

> jumping on the chat group on Tuesday nights. I can't believe how

busy

> life got. I sometimes feel guilty at not posting because these

groups

> were my life line at initial diagnosis and early on. I know how

> important it is to interact, educate, share and support. Mea culpa!

> I have gone back to work - having had the summer off. I had

> bunionectomies - one on the right foot May 29 and the left foot

July 14.

> So I have been SLOW getting around.I was able to go into the

mountains

> for a week of rest, and wrote 8 of the 10 chapters of my book " The

Grace

> of Cancer " . I have two more chapters to go. I don't know if I will

> ever do anything with it or not, but I just need to write the

memoir

> for some reason. And I love to write. I can also say that CML has

> changed me for the better.

>

> We teachers had to go back Aug. 4 and it has been putting

the 'pedal to

> the metal' since. My time has not been my own. It feels good to be

back

> in the classroom again, although I am extremely tired. My feet are

not

> completely healed so they hurt most nights and I am finding myself

in

> bed by 7 pm and asleep 15 minutes later. So Zavie, Lottie and all,

I

> promise to be better!!

>

> I have been on tasigna since Dec. 2007. I remain PCRU and am

grateful

> for the lessened side effects. I have tackeled the vertigo and it

is

> virtually gone. Those exercises Bobby gave me worked!!! My latest

tests

> in August were all normal. This is the second time my counts have

all

> fallen in the normal range. So I think I can't blame the fatigue on

> anything but age - Shucks!!

>

> I am headed to Seattle this morning for a family wedding to return

on

> Monday. So I am sure I won't be posting much until next week.

>

> I hope you all are well, coping and knowing that together we are

strong!

>

> Love, Barb

>

[Guest guest]

>

> hey group...i don't post often but read all your posts. i am now a patient at

the cleveland clinic. they truly care and have the rescources to do whatever is

necessary. they manage my gleevec bone pain with a duragesic patch as well as a

few tabs of vicodin a day. it has made such a difference in my quality of life.

i can now truly appreciate and play with my grandkids. they are also replacing

my teeth with permanant dental implants. my teeth were devastated by the

stomach acid regurged with the n & v of gleevec. dr. coplan seems so attentive

and the staff has customer service down to a T. if anyone from the area needs a

doc....i highly suggest the cleveland clinic.

_________________________

That is a great personal recommendation and I am glad to hear that you have

found a way to treat your bone pain that improves your quality of life (maybe

this will suggest an option to others). When people do have even acid reflux

from these drugs, and this was common with Gleevec, it can really do a number on

your teeth, as well as having a dry mouth. These problems can be identified by a

dentist and some suggestions made....to reduce the acid reflux and also to deal

with dry mouth (like Biotene mouth wash or gum).

Best wishes to you and glad you shared this information.

C.