update on me

August 14, 2004

Don't worry, dreamer. Just come here when you can and want to.

Sorry that your friend is so ill, there are so many other things going

on, and that you forgot to take care of yourself. No more missed MTX!

Hope things settle down soon and that you'll be feeling better very

soon.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] update on me

> I keep coming here and I keep thinking I will make new friends, bond

with people and all, and then I come and go and have these long spaces

before I make it back again. Why is it it is not so easy to remember to

take care of ones self?

>

> I have been sidetracked yet again, with everyone and everything else-

and not taking care of me. (my best friend is battling stage 4 melanoma

along with her MS, and a few other equally awful things are going on, so

I have been at melanoma groups lately)

>

> Well, dummy me, I had been doing SO great after my vacation. I was

maybe too excited about it? I got caught up in my friends illness and

well, I wish I could say I neglected myself, but abuse would be a better

word.

> I forgot to take my darned mtx (I cannot believe I did this, and not

once but twice in a row) and I have not been sleeping etc. so I am not

doing well at all, now.

> I am gonna try to come here more often and read more, and pay better

attention to all the wonderful things everyone posts for helping all of

us to better take care of ourself.

> I want to thank you guys for all your hard work- finding all the

information you find, and for all the peole who come here and share.

You do all that to help all of us, and I just keep sidetracking myself.

> A wise friend said " in order to take care of others, you must first

take care of yourself "

> Gosh I hope to follow that advise and I hope to come here and become a

familiar face.

> Know I am thinking of you guys even if I am not here -----and thanks

for being here.

August 14, 2004

Don't beat yourself up Dreamer. We all space out now and then - I have done it

myself and wondered how but it happens. Just get back on track and keep

thinking about that great vacation. Be kind and good to yourself - you deserve

it.

God Bless,

dreamer_plus <dreamer_plus@...> wrote:

I keep coming here and I keep thinking I will make new friends, bond with people

and all, and then I come and go and have these long spaces before I make it back

again. Why is it it is not so easy to remember to take care of ones self?

I have been sidetracked yet again, with everyone and everything else- and not

taking care of me. (my best friend is battling stage 4 melanoma along with her

MS, and a few other equally awful things are going on, so I have been at

melanoma groups lately)

Well, dummy me, I had been doing SO great after my vacation. I was maybe too

excited about it? I got caught up in my friends illness and well, I wish I

could say I neglected myself, but abuse would be a better word.

I forgot to take my darned mtx (I cannot believe I did this, and not once but

twice in a row) and I have not been sleeping etc. so I am not doing well at

all, now.

I am gonna try to come here more often and read more, and pay better attention

to all the wonderful things everyone posts for helping all of us to better take

care of ourself.

I want to thank you guys for all your hard work- finding all the information you

find, and for all the peole who come here and share. You do all that to help

all of us, and I just keep sidetracking myself.

A wise friend said " in order to take care of others, you must first take care of

yourself "

Gosh I hope to follow that advise and I hope to come here and become a familiar

face.

Know I am thinking of you guys even if I am not here -----and thanks for being

here.

August 14, 2004

OK, Dreamer, so stick around now and take care of you for a change!

Believe me, I know how it is, you get carried away taking care of

everyone else and first thing you know you are down, and no one knows

how to take care of you, including you!

Small steps, friend, small steps--take your MTX, and do those other

things that need doing to get yourself built up, and stay in touch

with us!

Judi

November 7, 2005

Thanks Jill for sharing a heart warming story, God Bless.

Hugs

June

----- Original Message -----

From: Jill Watkins

Ok - Halloween was one full year since I heard the words Rheumatoid

arthritis. Its been since Valentines day since I've been seeing the

rheumatologist- but its been a wild ride this year.

I have gone the whole route from not knowing what it was, to knowing too

much about RA!

Not being able to finding a doc to treat me, to finding the best specialist

in the world!

Getting a wheelchair-and getting out of it.

And finally feeling human again-Praise God and drugs!

I gained 20 pounds from the prednisone and finally just lost them.

I am learning to deal with my flares.

I love my Remicade. And my specialist.

I found a job where I dont have to type!

I have a lot to be greatful for. RA has taught me that. And when I am

feeling sorry for myself- I have to remember that.

Thanks for giving me a place I can come to - to learn and cry and vent and

be greatful.

Jill

November 7, 2005

Thanks Jill for sharing a heart warming story, God Bless.

Hugs

June

----- Original Message -----

From: Jill Watkins

Ok - Halloween was one full year since I heard the words Rheumatoid

arthritis. Its been since Valentines day since I've been seeing the

rheumatologist- but its been a wild ride this year.

I have gone the whole route from not knowing what it was, to knowing too

much about RA!

Not being able to finding a doc to treat me, to finding the best specialist

in the world!

Getting a wheelchair-and getting out of it.

And finally feeling human again-Praise God and drugs!

I gained 20 pounds from the prednisone and finally just lost them.

I am learning to deal with my flares.

I love my Remicade. And my specialist.

I found a job where I dont have to type!

I have a lot to be greatful for. RA has taught me that. And when I am

feeling sorry for myself- I have to remember that.

Thanks for giving me a place I can come to - to learn and cry and vent and

be greatful.

Jill

November 7, 2005

Jill,

Congrats on losing the prednisone pounds. Any advice?

I can't seem to lose mine. When I was on 50 mg per

day of pred I actually lost a whole lot of weight

because I could move again. I felt so good and I

didn't waste a minute eating--I was cleaning and

organizing my life for the inevitable crash I knew was

coming. When I began tapering down and hit about 20

mg I started slowing down and the pounds started

pouring in. It's so depressing.

laura

--- Jill Watkins <jill.watkins@...> wrote:

> Ok - Halloween was one full year since I heard the

> words Rheumatoid

> arthritis. Its been since Valentines day since I've

> been seeing the

> rheumatologist- but its been a wild ride this year.

> I have gone the whole route from not knowing what

> it was, to knowing too

> much about RA!

> Not being able to finding a doc to treat me, to

> finding the best specialist

> in the world!

> Getting a wheelchair-and getting out of it.

> And finally feeling human again-Praise God and

> drugs!

> I gained 20 pounds from the prednisone and finally

> just lost them.

> I am learning to deal with my flares.

> I love my Remicade. And my specialist.

> I found a job where I dont have to type!

> I have a lot to be greatful for. RA has taught me

> that. And when I am

> feeling sorry for myself- I have to remember that.

> Thanks for giving me a place I can come to - to

> learn and cry and vent and

> be greatful.

> Jill

>

> [Non-text portions of this message have been

> removed]

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

November 7, 2005

Jill,

Congrats on losing the prednisone pounds. Any advice?

I can't seem to lose mine. When I was on 50 mg per

day of pred I actually lost a whole lot of weight

because I could move again. I felt so good and I

didn't waste a minute eating--I was cleaning and

organizing my life for the inevitable crash I knew was

coming. When I began tapering down and hit about 20

mg I started slowing down and the pounds started

pouring in. It's so depressing.

laura

--- Jill Watkins <jill.watkins@...> wrote:

> Ok - Halloween was one full year since I heard the

> words Rheumatoid

> arthritis. Its been since Valentines day since I've

> been seeing the

> rheumatologist- but its been a wild ride this year.

> I have gone the whole route from not knowing what

> it was, to knowing too

> much about RA!

> Not being able to finding a doc to treat me, to

> finding the best specialist

> in the world!

> Getting a wheelchair-and getting out of it.

> And finally feeling human again-Praise God and

> drugs!

> I gained 20 pounds from the prednisone and finally

> just lost them.

> I am learning to deal with my flares.

> I love my Remicade. And my specialist.

> I found a job where I dont have to type!

> I have a lot to be greatful for. RA has taught me

> that. And when I am

> feeling sorry for myself- I have to remember that.

> Thanks for giving me a place I can come to - to

> learn and cry and vent and

> be greatful.

> Jill

>

> [Non-text portions of this message have been

> removed]

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

November 8, 2005

I went back to work - and I am working so many hours that I forget to eat!

But I love my job so its ok!

I was that way too-When I was on 40 mg per day, I was speeding and and wasnt

hungry. As I tapered down, I started eating everything in sight. But when I

went back to work- I started working 40-60 hours per week. I am so tired

when I get home, I dont eat.

Jill

On 11/7/05, Bauman <ilovecats83160@...> wrote:

>

> Jill,

> Congrats on losing the prednisone pounds. Any advice?

> I can't seem to lose mine. When I was on 50 mg per

> day of pred I actually lost a whole lot of weight

> because I could move again. I felt so good and I

> didn't waste a minute eating--I was cleaning and

> organizing my life for the inevitable crash I knew was

> coming. When I began tapering down and hit about 20

> mg I started slowing down and the pounds started

> pouring in. It's so depressing.

>

> laura

>

> --- Jill Watkins <jill.watkins@...> wrote:

>

> > Ok - Halloween was one full year since I heard the

> > words Rheumatoid

> > arthritis. Its been since Valentines day since I've

> > been seeing the

> > rheumatologist- but its been a wild ride this year.

> > I have gone the whole route from not knowing what

> > it was, to knowing too

> > much about RA!

> > Not being able to finding a doc to treat me, to

> > finding the best specialist

> > in the world!

> > Getting a wheelchair-and getting out of it.

> > And finally feeling human again-Praise God and

> > drugs!

> > I gained 20 pounds from the prednisone and finally

> > just lost them.

> > I am learning to deal with my flares.

> > I love my Remicade. And my specialist.

> > I found a job where I dont have to type!

> > I have a lot to be greatful for. RA has taught me

> > that. And when I am

> > feeling sorry for myself- I have to remember that.

> > Thanks for giving me a place I can come to - to

> > learn and cry and vent and

> > be greatful.

> > Jill

> >

> > [Non-text portions of this message have been

> > removed]

> >

>

> __________________________________

> - PC Magazine Editors' Choice 2005

> http://mail.

>

November 8, 2005

I went back to work - and I am working so many hours that I forget to eat!

But I love my job so its ok!

I was that way too-When I was on 40 mg per day, I was speeding and and wasnt

hungry. As I tapered down, I started eating everything in sight. But when I

went back to work- I started working 40-60 hours per week. I am so tired

when I get home, I dont eat.

Jill

On 11/7/05, Bauman <ilovecats83160@...> wrote:

>

> Jill,

> Congrats on losing the prednisone pounds. Any advice?

> I can't seem to lose mine. When I was on 50 mg per

> day of pred I actually lost a whole lot of weight

> because I could move again. I felt so good and I

> didn't waste a minute eating--I was cleaning and

> organizing my life for the inevitable crash I knew was

> coming. When I began tapering down and hit about 20

> mg I started slowing down and the pounds started

> pouring in. It's so depressing.

>

> laura

>

> --- Jill Watkins <jill.watkins@...> wrote:

>

> > Ok - Halloween was one full year since I heard the

> > words Rheumatoid

> > arthritis. Its been since Valentines day since I've

> > been seeing the

> > rheumatologist- but its been a wild ride this year.

> > I have gone the whole route from not knowing what

> > it was, to knowing too

> > much about RA!

> > Not being able to finding a doc to treat me, to

> > finding the best specialist

> > in the world!

> > Getting a wheelchair-and getting out of it.

> > And finally feeling human again-Praise God and

> > drugs!

> > I gained 20 pounds from the prednisone and finally

> > just lost them.

> > I am learning to deal with my flares.

> > I love my Remicade. And my specialist.

> > I found a job where I dont have to type!

> > I have a lot to be greatful for. RA has taught me

> > that. And when I am

> > feeling sorry for myself- I have to remember that.

> > Thanks for giving me a place I can come to - to

> > learn and cry and vent and

> > be greatful.

> > Jill

> >

> > [Non-text portions of this message have been

> > removed]

> >

>

> __________________________________

> - PC Magazine Editors' Choice 2005

> http://mail.

>

November 10, 2005

I'm thrilled to hear that you are now doing so well, Jill! Thanks for

sharing your good news with us.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Update on me

> Ok - Halloween was one full year since I heard the words Rheumatoid

> arthritis. Its been since Valentines day since I've been seeing the

> rheumatologist- but its been a wild ride this year.

> I have gone the whole route from not knowing what it was, to knowing too

> much about RA!

> Not being able to finding a doc to treat me, to finding the best

> specialist

> in the world!

> Getting a wheelchair-and getting out of it.

> And finally feeling human again-Praise God and drugs!

> I gained 20 pounds from the prednisone and finally just lost them.

> I am learning to deal with my flares.

> I love my Remicade. And my specialist.

> I found a job where I dont have to type!

> I have a lot to be greatful for. RA has taught me that. And when I am

> feeling sorry for myself- I have to remember that.

> Thanks for giving me a place I can come to - to learn and cry and vent and

> be greatful.

> Jill

November 10, 2005

I'm thrilled to hear that you are now doing so well, Jill! Thanks for

sharing your good news with us.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Update on me

> Ok - Halloween was one full year since I heard the words Rheumatoid

> arthritis. Its been since Valentines day since I've been seeing the

> rheumatologist- but its been a wild ride this year.

> I have gone the whole route from not knowing what it was, to knowing too

> much about RA!

> Not being able to finding a doc to treat me, to finding the best

> specialist

> in the world!

> Getting a wheelchair-and getting out of it.

> And finally feeling human again-Praise God and drugs!

> I gained 20 pounds from the prednisone and finally just lost them.

> I am learning to deal with my flares.

> I love my Remicade. And my specialist.

> I found a job where I dont have to type!

> I have a lot to be greatful for. RA has taught me that. And when I am

> feeling sorry for myself- I have to remember that.

> Thanks for giving me a place I can come to - to learn and cry and vent and

> be greatful.

> Jill

June 22, 2006

--- In , " dreamer_plus " <dreamer_plus@...>

wrote:

>

> Well, I took my 2nd Humira shot today. I am now on Humira, mtx and

prednisone. I am not sure if doc is gonna let me keep taking the

pred, but man I am doing INCREDIBLE!

> The pred at first made me SO hungry and a little bit manicy, but

that has settled down and I am feeling like I am 10 yrs younger. I

guess thats why I have not been here, I am VERY busy making up for

lost time, trying to catch up in my yard and house and everything.

No more scooter, no more walker, no more pain pills or creams, no

more handicapped parking, no more splints... For the first time

since 2000 nothing has hurt!

>

> Sadly I did not quit smoking.....and yes the doc is in my face

pretty bad....really bad.....but I did hold my smoking down to like

half or so of what I used to smoke. I am afraid the doc is gonna

quit being my doc over it....

>

> My kids are SO excited, and I am ecstatic.

>

> There is hope, altho I do worry sometimes if this can keep working

this nicely for me and I worry about possible future payback - like

maybe some ugly med side effects?

>

> But for now I am busy catching up and enjoying life. :-)

>

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

dreamer,

I'm so excited for you....and enjoying your life!!! You deserve

happiness!! My prayers will be you, every day!

Sharon

June 22, 2006

I was the worst smoker ever...2-2 1/2 packs a day for

over 20 years. I got the Commit Lozenges...they are

expensive, but no more so that cigarettes!! They TRULY

work!! You are no longer a slave to cigarettes and you

don't smell bad!I used to think that was crap..when

people said smokers hair and clothes smelled bad....

until I quit and then the following fall I pulled a

wool jacket out of the closet that I hadn't worn all

summer...it reeked!! It was an awful smell. I was

appalled that maybe I had really smelled like that for

20 years!!! ech!!!I was so embarassed!! its really

gross the first time you experience it. Anyway the

lozenges really work..and besides smelling good, you

will really help your bones because no matter how much

milk and dairy you eat it will not make up for smoking

and caffine products (thats both coffee and coke or

pepsi folks!) leaching all the calcium out of your

bones!!I learned it the hard way. I hope you will give

it a 2 week try!...I alternated non-sugared candy

between the lozenges when I thought I needed a

smoke...gave my mouth something to do!!good luck!! Jenna

__________________________________________________

June 22, 2006

I was smoking 4 packs a day for 35 years....sadly, and no, I cannot explain

it..I really do not feel like I want to quit. My brain knows I SHOULD

quit.....I know it is healthy to quit.....

I know we would be so much better off financially (hubby and I are both on soc

sec disability and we have 3 kids still home)

I know how badly it smells....

I also know all about lung cancer etc and emphysema etc (my mom and mil both

died of lung cancer as well as my godmother, my best friend died last year at

age 35 from cancer, my dh has lung cancer and emphysema) I was a Hospice Nurse

and had countless patients die from lung cancer.....

My rheumy had told me he would not keep me as a patient if I did not quit.....

but, I am having a hard time quitting, and I am sure it is cuz I really do not

feel like I want to quit. I know I should....I know why I should.....I have

been hypnotized, tried all kinds of interventiosns, wellbutrin, etc.....

BUT I have cut way down..way way down.at least way down for me. :-) (altho my

rheumy is not impressed with me at less than one pack a day)

- In , G McCarrick <siofra520@...> wrote:

>

> I was the worst smoker ever...2-2 1/2 packs a day for

> over 20 years. I got the Commit Lozenges...they are

> expensive, but no more so that cigarettes!! They TRULY

> work!! You are no longer a slave to cigarettes and you

> don't smell bad!I used to think that was crap..when

> people said smokers hair and clothes smelled bad....

> until I quit and then the following fall I pulled a

> wool jacket out of the closet that I hadn't worn all

> summer...it reeked!! It was an awful smell. I was

> appalled that maybe I had really smelled like that for

> 20 years!!! ech!!!I was so embarassed!! its really

> gross the first time you experience it. Anyway the

> lozenges really work..and besides smelling good, you

> will really help your bones because no matter how much

> milk and dairy you eat it will not make up for smoking

> and caffine products (thats both coffee and coke or

> pepsi folks!) leaching all the calcium out of your

> bones!!I learned it the hard way. I hope you will give

> it a 2 week try!...I alternated non-sugared candy

> between the lozenges when I thought I needed a

> smoke...gave my mouth something to do!!good luck!! Jenna

>

> __________________________________________________

>

June 22, 2006

Glad to hear that you are feeling so good, dreamer! You deserve it.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] update on me

> Well, I took my 2nd Humira shot today. I am now on Humira, mtx and

> prednisone. I am not sure if doc is gonna let me keep taking the pred,

> but man I am doing INCREDIBLE!

> The pred at first made me SO hungry and a little bit manicy, but that has

> settled down and I am feeling like I am 10 yrs younger. I guess thats why

> I have not been here, I am VERY busy making up for lost time, trying to

> catch up in my yard and house and everything. No more scooter, no more

> walker, no more pain pills or creams, no more handicapped parking, no more

> splints... For the first time since 2000 nothing has hurt!

>

> Sadly I did not quit smoking.....and yes the doc is in my face pretty

> bad....really bad.....but I did hold my smoking down to like half or so of

> what I used to smoke. I am afraid the doc is gonna quit being my doc over

> it....

>

> My kids are SO excited, and I am ecstatic.

>

> There is hope, altho I do worry sometimes if this can keep working this

> nicely for me and I worry about possible future payback - like maybe some

> ugly med side effects?

>

> But for now I am busy catching up and enjoying life. :-)

June 23, 2006

Dreamer.

Why don't you do something for your kids? Stop buying the cigarettes! I did

it for the kids. I smoked for 50 years and when we started caring for

special needs foster kids I stopped buying them. I did not quit smoking but

when I did not have them I was not smoking. It's been 10 years now. I took

the pack out of my pocket and threw it out the car window and never bought

another cigarette. I had tried to quit every night for 20 years but it never

worked. I would sit on the edge of the bed and smoke the day's last

cigarette and vow no more. Next morning, guess what? So if you can't do it

for yourself, try doing it for your kids. Think how it will help them! No

more second hand smoke. Say : I will not buy another pack of cigarettes!

" Never, never, never, never give up! "

Winston Churchill

[ ] Re: update on me

>I was smoking 4 packs a day for 35 years....sadly, and no, I cannot explain

>it..I really do not feel like I want to quit. My brain knows I SHOULD

>quit.....I know it is healthy to quit.....

> I know we would be so much better off financially (hubby and I are both on

> soc sec disability and we have 3 kids still home)

> I know how badly it smells....

> I also know all about lung cancer etc and emphysema etc (my mom and mil

> both died of lung cancer as well as my godmother, my best friend died last

> year at age 35 from cancer, my dh has lung cancer and emphysema) I was a

> Hospice Nurse and had countless patients die from lung cancer.....

>

> My rheumy had told me he would not keep me as a patient if I did not

> quit.....

> but, I am having a hard time quitting, and I am sure it is cuz I really do

> not feel like I want to quit. I know I should....I know why I

> should.....I have been hypnotized, tried all kinds of interventiosns,

> wellbutrin, etc.....

> BUT I have cut way down..way way down.at least way down for me. :-)

> (altho my rheumy is not impressed with me at less than one pack a day)

>

September 6, 2008

Dodge, I use gmail. Have you thought about using something like gmail

or mail instead of the email from your ISP?

South Pasadena, CA / Lilydale, MN

You can see my galleries at http://www.pbase.com/arenared986

M. Schulz - " All you need is love. But a little chocolate now

and then doesn't hurt. "

On Fri, Sep 5, 2008 at 8:02 PM, Dodge <medicdodge@...> wrote:

> Hi all:

>

> I have not meant to ignore anyone lately.

>

> A combination of not feeling well, and mainly not being able to access my

> email has kept me off the computer. I finally did get someone, two people

> actually, at cable tech support to take me seriously, and supposedly, one

> guy had his supervisor working on the problem. Things are a little faster

> tonight, but not where they should be for 16 meg internet service. I'm now

> accessing email every five minutes, instead of every ten.

>

> There's nothing I can do about this until someone gets up the nerve to fix

> it, so I will probably be scarce untill that happens. I miss you all, and

> will participate as I am able.

>

> I am still able to blog though, as the only thing effected by this slowdown,

> " latency issue " is my email.

>

> I love you all.

>

> --

> Dodge

>

> Resolve to be tender with the young, compassionate with the aged,

> sympathetic with the striving, and tolerant of the weak and wrong, because

> sometime

> in your life you will have been all of these.

>

> Read my blog at:

> http://jumpthis.wordpress.com

>

September 6, 2008

Dodge and group;

Awe Dodge, I knew you wasnt ignoring us. I figured you was

recouperating. Feel better

gentle hugs

Clora

December 3, 2008

Hello all once again,

just an update on my ongoing battle with my CML and the drugs to combat it.

After my last hospital stay, I was told not to use dasatinib any more.

They had to tap me and remove all the pleural infusion build up caused by

dasatinib.

They removed 8.5 500ML bottles of liquid,over a threee week period. After

another 3 weeks my doc told me we would go back to Nilotinib, at a reduced rate

(400MG once day). In six days to the hour, my liver enzymes shot through the

roof. Once again I am off any of the nibs, Imatinib, Nilotinib and Dasatinib.

I am still a bit sick and pain in the back but it is less that yesterday, so I

imagine I will wait until my doc comes back from ASH to find out where we go

from here. I am beginning to wonder if there is any of these drugs I can

tolerate. I guess I am paying the piper for living so long with CML.

Have a great day all

SkipD

dx'ed 30++++ years ago.

December 3, 2008

Hi Skip,

I wonder if you would do better with one of the infusion drugs such

as HHT? Or at this point, I even wonder if Interferon would help.

You are a unique case so maybe you could be one of the few who could

tolerate and benefit from it?

In any case, you're a real trooper and continue to be in our

thoughts. Thanks for updating us and best of luck with whatever drug

you go on.

Tracey

>

> Hello all once again,

> just an update on my ongoing battle with my CML and the drugs to

combat it.

> After my last hospital stay, I was told not to use dasatinib any

more.

> They had to tap me and remove all the pleural infusion build up

caused by dasatinib.

> They removed 8.5 500ML bottles of liquid,over a threee week

period. After another 3 weeks my doc told me we would go back to

Nilotinib, at a reduced rate (400MG once day). In six days to the

hour, my liver enzymes shot through the roof. Once again I am off

any of the nibs, Imatinib, Nilotinib and Dasatinib. I am still a bit

sick and pain in the back but it is less that yesterday, so I imagine

I will wait until my doc comes back from ASH to find out where we go

from here. I am beginning to wonder if there is any of these drugs I

can tolerate. I guess I am paying the piper for living so long with

CML.

> Have a great day all

>

> SkipD

> dx'ed 30++++ years ago.

>

December 3, 2008

Dear 'Nib less Skip,

You are amazing! 8.5 bottles? Wow. In time without all that fluid you will

feel tons lighter.

It's sad news that the Nibs aren't working for you, but something is working for

you to be here 30+ years! One of the new drugs, or an old drug will keep the

CML dragon at bay.

You remain an inspiration and all prayers are for you to find the golden drug

that will bring relief and keep you in remission with healthy liver and

lungs.... Etc.

Thanks for keeping in touch! Hope to hear good news soon.

Peace,

Rhonda

Sent from my Verizon Wireless BlackBerry