Re: Newly diagnosed in Atlanta

[Guest guest]

Hi Tracey,

I am sorry about your dx. I was dxed in April of 04 and have been on 400mg's

of Gleevec since. I am now in remission and as of my last Doctor's visit on

Nov 3rd my blood counts are great. So he teased my mom and told her she was

going to be stuck with me for a very long time. I am 39, and have since had

to move back home with my parents. CML is now a very treatable disease so on

the one hand your not lucky, but on the other hand you are..hehe.

With Gleevec most of us can expect to live a fairly normal live span. There

maybe side effects, but until you start treatment there is not way for me to

tell you the ones(if any) you may have. Some people are very lucky and

suffer little to no side effects, and then there are those like me. (I won't

go into mine right now, maybe later after you have gotten used to things)

If you ever need to chat my is terrydailey1@... and my MSN

is terrydailey@... This goes for anyone else in the group as well,

since I have allot of time on my hands I am on allot more. Take care and

hang in there Tracey your gonna be fine,

Terry

On 11/7/06, Tracey Holden <holdenmt@...> wrote:

>

> Hi everyone --

> My name is Tracey, I am 42 and just dxd within the last 2 weeks. Of

> course hind sight is 20/20 and when I reflect back on things I have

> probably been working on this for quite some time now. I have often

> complained to my PCP about being exhausted and achey and as others

> have commented he checked my thyroid and commented that I wasn't

> anemic. Makes you a little nervous when you have to wonder at what

> point they think a simple CBC would be in order.

> Being so new to this whole thing I haven't quite got all the

> terminology down but here are the basics -- aproximately 40lbs lost

> over the last 6-8 months (never have been that successful before -

> shocking what a little dose of CML can accomplish!!!), constant

> exhaustion, and then 2 weeks ago a pain in my left side (you got it -

> - an enlarged spleen). Dr ordered ultrasound to confirm

> spleenomegaly then a CBC. When the blood work came back PCP called

> at 9:30 AM on FRIDAY and told me it looked like AML -- I have since

> told him he has LOUSY timing and really knows how to screw up

> someone's weekend. He did refer me to Georgia Cancer Specialists to

> see Dr. Melvin . Dr assured us we were dealing with CML

> not AML,and it was pretty much a text book case -- just waiting on

> the cytogenic tests to confirm PH+ and rule out any other

> extenuating circumstances. He immediatley started me on Gleevec

> 400mg and Allpurinol 300mg daily.

> I have been impressed with Dr so far but was curious if anyone

> out there has any info on him. He seems to be on the cutting edge as

> far as SCT and BMT if need be down the road. He is a fauclty member

> at Emory University and seems to be involved with giving or

> participating in seminars quite often. So far he has been very

> giving of his time and doesn't hesitate to answer our questions no

> matter how many or how insignificant they may be.

> My precious brother found this group and pointed me in your

> direction. I look forward to learning from each and every one of

> you. I will be thankful for " ya'll " and pray for all.

> Thank you -- Tracey

>

>

>

>

>

>

>

[Guest guest]

Tracey:

Sorry to hear your news. It takes me back to my first days after diagnosis.

It was a difficult time because I was so uncertain of what I was going to

face. This is a great site to get knowledge, so you have found some support

that I did not have back then. If I had, my early days would have been

different.

Okay, pay attention and remember that knowledge is power. While you feel

that you have a good oncologist, you are still going to have to be the most

knowledgeable person you can be. This site is good to ask questions of, but

there are a number of great sites that will give you a basics and a base line

of

understanding.

Once you are armed with that, you will then be able to participate in your

treatment and you will find that things will go easier for you. If you are

not sure of something or disagree with your doctor, make sure you voice your

concern and explain why. Sometimes local Doctors will not have the latest

information as most of this comes out of the clinics dedicated to Leukemia, at

least in my opinion. Yours may be an exception, both because he is at a

university and the other because he attends seminars and possibly lectures. I

hope

that works in your favor. He certainly sounds like someone we would all

like to have.

My first oncologist said that I should not take Gleevec, and instead go get

a Bone Marrow Transplant (BMT). I spent two weeks reading the horrible

things you go through in a BMT and getting scared to death. My second

oncologist

did not put me on the right dose of Gleevec and it was not until the Leukemia

Society intervened that I got the care I needed and found an Oncologist that

I liked and trusted. He recommended that I go to a specialty clinic and he

would follow what they recommended. If I was not actively seeking answers, I

would not have gotten the care that I needed and would have had a very hard

road ahead.

You already appear to be on a good path, but stay informed and participate

in your own care. Ask questions wherever you go and look for the long term

survivors that can coach you when you need it the most.

Good luck and know that many of us are rooting for you. The first few

months are the hardest, both mentally and physically. But know that things get

better as you adjust to your new life. Things are going to be just fine, just

give it time.

With regards,

Matt

ville

DX January 2005

Gleevec since March 2005

Last PCR 0.05

In a message dated 11/7/2006 3:27:04 P.M. Eastern Standard Time,

holdenmt@... writes:

Hi everyone --

My name is Tracey, I am 42 and just dxd within the last 2 weeks. Of

course hind sight is 20/20 and when I reflect back on things I have

probably been working on this for quite some time now. I have often

complained to my PCP about being exhausted and achey and as others

have commented he checked my thyroid and commented that I wasn't

anemic. Makes you a little nervous when you have to wonder at what

point they think a simple CBC would be in order.

Being so new to this whole thing I haven't quite got all the

terminology down but here are the basics -- aproximately 40lbs lost

over the last 6-8 months (never have been that successful before -

shocking what a little dose of CML can accomplish!!shocking what

exhaustion, and then 2 weeks ago a pain in my left side (you got it -

- an enlarged spleen). Dr ordered ultrasound to confirm

spleenomegaly then a CBC. When the blood work came back PCP called

at 9:30 AM on FRIDAY and told me it looked like AML -- I have since

told him he has LOUSY timing and really knows how to screw up

someone's weekend. He did refer me to Georgia Cancer Specialists to

see Dr. Melvin . Dr assured us we were dealing with CML

not AML,and it was pretty much a text book case -- just waiting on

the cytogenic tests to confirm PH+ and rule out any other

extenuating circumstances. He immediatley started me on Gleevec

400mg and Allpurinol 300mg daily.

I have been impressed with Dr so far but was curious if anyone

out there has any info on him. He seems to be on the cutting edge as

far as SCT and BMT if need be down the road. He is a fauclty member

at Emory University and seems to be involved with giving or

participating in seminars quite often. So far he has been very

giving of his time and doesn't hesitate to answer our questions no

matter how many or how insignificant they may be.

My precious brother found this group and pointed me in your

direction. I look forward to learning from each and every one of

you. I will be thankful for " ya'll " and pray for all.

Thank you -- Tracey

[Guest guest]

Hi Tracey, I am also in the Atlanta area in Fayetteville. I was diagnosed

in July 06. I had no symptoms, just went for blood work to see why I was

" gaining " weight. Thought it might be my thyroid, but the CBC showed I had

Leukemia, which was confirmed to be CML when I had a bone marrow test. It

is not the most common type of Leukemia. After 3 weeks of being on Gleevec,

my counts reduced to the normal range and I have only mild side effects

since they have come back to normal. I eat a large breakfast in the morning

and take my pill half way through the meal with a large glass of water. I

still get tired if I try to do too much during the day and you just have to

learn to stop and rest. I have some bone pain in the evenings, but nothing

that Aleeve or Advil can't fix. Stay away from the Tylenol products and

grapefruit products. Although the pill is not a cure, it sure beats the

side effects the other type of chemo medicines have.

What part of Atlanta are you in? This is a very informative group and you

will find a lot of website information out there on CML. Don't hesitate to

ask questions.

Barbara from Atlanta

_____

From: [mailto: ] On Behalf Of Tracey

Holden

Sent: Tuesday, November 07, 2006 2:42 PM

Subject: [ ] Newly diagnosed in Atlanta

Hi everyone --

My name is Tracey, I am 42 and just dxd within the last 2 weeks. Of

course hind sight is 20/20 and when I reflect back on things I have

probably been working on this for quite some time now. I have often

complained to my PCP about being exhausted and achey and as others

have commented he checked my thyroid and commented that I wasn't

anemic. Makes you a little nervous when you have to wonder at what

point they think a simple CBC would be in order.

Being so new to this whole thing I haven't quite got all the

terminology down but here are the basics -- aproximately 40lbs lost

over the last 6-8 months (never have been that successful before -

shocking what a little dose of CML can accomplish!!!), constant

exhaustion, and then 2 weeks ago a pain in my left side (you got it -

- an enlarged spleen). Dr ordered ultrasound to confirm

spleenomegaly then a CBC. When the blood work came back PCP called

at 9:30 AM on FRIDAY and told me it looked like AML -- I have since

told him he has LOUSY timing and really knows how to screw up

someone's weekend. He did refer me to Georgia Cancer Specialists to

see Dr. Melvin . Dr assured us we were dealing with CML

not AML,and it was pretty much a text book case -- just waiting on

the cytogenic tests to confirm PH+ and rule out any other

extenuating circumstances. He immediatley started me on Gleevec

400mg and Allpurinol 300mg daily.

I have been impressed with Dr so far but was curious if anyone

out there has any info on him. He seems to be on the cutting edge as

far as SCT and BMT if need be down the road. He is a fauclty member

at Emory University and seems to be involved with giving or

participating in seminars quite often. So far he has been very

giving of his time and doesn't hesitate to answer our questions no

matter how many or how insignificant they may be.

My precious brother found this group and pointed me in your

direction. I look forward to learning from each and every one of

you. I will be thankful for " ya'll " and pray for all.

Thank you -- Tracey

[Guest guest]

I've met a lot of people, including myself, that were told initially

that it was AML. It provides a hearty shock to the system to think

you will be spending the next 4 months in the hospital for it. The

doctor told me to go home and pack my bags. I freaked!

Turned out it was CML which was like winning the lottery. AML

patients don't have the blessing that we do in terms of drugs and

treatment. I was dx'ed in July '06 and today it's business as usual.

I'm back to doing the things I love, working out, riding my dirtbike,

working too much at work, etc. Luckily I've had very very minimal

side effects. Lately I've been itchy, which is weird.

You sound very calm, which is great. You are already on the road to

wellness. Stay on top of this mentally (don't dwell) and eat healthy

and you'll be fine.

>

> Hi everyone --

> My name is Tracey, I am 42 and just dxd within the last 2 weeks. Of

> course hind sight is 20/20 and when I reflect back on things I have

> probably been working on this for quite some time now. I have often

> complained to my PCP about being exhausted and achey and as others

> have commented he checked my thyroid and commented that I wasn't

> anemic. Makes you a little nervous when you have to wonder at what

> point they think a simple CBC would be in order.

> Being so new to this whole thing I haven't quite got all the

> terminology down but here are the basics -- aproximately 40lbs lost

> over the last 6-8 months (never have been that successful before -

> shocking what a little dose of CML can accomplish!!!), constant

> exhaustion, and then 2 weeks ago a pain in my left side (you got

it -

> - an enlarged spleen). Dr ordered ultrasound to confirm

> spleenomegaly then a CBC. When the blood work came back PCP called

> at 9:30 AM on FRIDAY and told me it looked like AML -- I have since

> told him he has LOUSY timing and really knows how to screw up

> someone's weekend. He did refer me to Georgia Cancer Specialists to

> see Dr. Melvin . Dr assured us we were dealing with CML

> not AML,and it was pretty much a text book case -- just waiting on

> the cytogenic tests to confirm PH+ and rule out any other

> extenuating circumstances. He immediatley started me on Gleevec

> 400mg and Allpurinol 300mg daily.

> I have been impressed with Dr so far but was curious if

anyone

> out there has any info on him. He seems to be on the cutting edge

as

> far as SCT and BMT if need be down the road. He is a fauclty member

> at Emory University and seems to be involved with giving or

> participating in seminars quite often. So far he has been very

> giving of his time and doesn't hesitate to answer our questions no

> matter how many or how insignificant they may be.

> My precious brother found this group and pointed me in your

> direction. I look forward to learning from each and every one of

> you. I will be thankful for " ya'll " and pray for all.

> Thank you -- Tracey

>

[Guest guest]

Welcome, Tracey. I'm sorry you have the need to find us, but glad

you did. You've already gotten some very good advice from others,

to which I can add very little. I'm also 42, dx May 2005, reached

PCRU (zero phillies detected via PCR test) this past summer. You

already sound a lot more together than I was when I was where you

are. Stick around -- you'll learn a lot from some very smart and

lovely people. You're in my prayers. Warmest regards. (Dov)

>

> Hi everyone --

> My name is Tracey, I am 42 and just dxd within the last 2 weeks.

Of

> course hind sight is 20/20 and when I reflect back on things I

have

> probably been working on this for quite some time now. I have

often

> complained to my PCP about being exhausted and achey and as others

> have commented he checked my thyroid and commented that I wasn't

> anemic. Makes you a little nervous when you have to wonder at what

> point they think a simple CBC would be in order.

> Being so new to this whole thing I haven't quite got all the

> terminology down but here are the basics -- aproximately 40lbs

lost

> over the last 6-8 months (never have been that successful before -

> shocking what a little dose of CML can accomplish!!!), constant

> exhaustion, and then 2 weeks ago a pain in my left side (you got

it -

> - an enlarged spleen). Dr ordered ultrasound to confirm

> spleenomegaly then a CBC. When the blood work came back PCP

called

> at 9:30 AM on FRIDAY and told me it looked like AML -- I have

since

> told him he has LOUSY timing and really knows how to screw up

> someone's weekend. He did refer me to Georgia Cancer Specialists

to

> see Dr. Melvin . Dr assured us we were dealing with CML

> not AML,and it was pretty much a text book case -- just waiting on

> the cytogenic tests to confirm PH+ and rule out any other

> extenuating circumstances. He immediatley started me on Gleevec

> 400mg and Allpurinol 300mg daily.

> I have been impressed with Dr so far but was curious if

anyone

> out there has any info on him. He seems to be on the cutting edge

as

> far as SCT and BMT if need be down the road. He is a fauclty

member

> at Emory University and seems to be involved with giving or

> participating in seminars quite often. So far he has been very

> giving of his time and doesn't hesitate to answer our questions no

> matter how many or how insignificant they may be.

> My precious brother found this group and pointed me in your

> direction. I look forward to learning from each and every one of

> you. I will be thankful for " ya'll " and pray for all.

> Thank you -- Tracey

>

[Guest guest]

Tracey,

Sorry you had to join our group but if you had to have some cancer, CML is no

longer one of the worst ones to have. I was in the same boat as you having lived

with a worsening disease for some time before diagnosis. Gleevec has worked very

well for me and I'm sure it will for you. Please work with you Doctor to

increase your dosage to 600 or 800 mg/day as soon as you can take it. It has

been well established at MD and other places that a higher dose =

better expected results. Also, know that there are second generation drugs like

Sprycel out there in case Gleevec does not do enough for you + they are working

on third gen drugs at a furoius pace. With so many powerful drugs out there I

don't think there is any reason for you to consider a BMT. I always recommend

the group at www.newcmldrug.com also. Nice people and very knowledgeable.

Good luck

Rick

Tracey Holden <holdenmt@...> wrote:

Hi everyone --

My name is Tracey, I am 42 and just dxd within the last 2 weeks. Of

course hind sight is 20/20 and when I reflect back on things I have

probably been working on this for quite some time now. I have often

complained to my PCP about being exhausted and achey and as others

have commented he checked my thyroid and commented that I wasn't

anemic. Makes you a little nervous when you have to wonder at what

point they think a simple CBC would be in order.

Being so new to this whole thing I haven't quite got all the

terminology down but here are the basics -- aproximately 40lbs lost

over the last 6-8 months (never have been that successful before -

shocking what a little dose of CML can accomplish!!!), constant

exhaustion, and then 2 weeks ago a pain in my left side (you got it -

- an enlarged spleen). Dr ordered ultrasound to confirm

spleenomegaly then a CBC. When the blood work came back PCP called

at 9:30 AM on FRIDAY and told me it looked like AML -- I have since

told him he has LOUSY timing and really knows how to screw up

someone's weekend. He did refer me to Georgia Cancer Specialists to

see Dr. Melvin . Dr assured us we were dealing with CML

not AML,and it was pretty much a text book case -- just waiting on

the cytogenic tests to confirm PH+ and rule out any other

extenuating circumstances. He immediatley started me on Gleevec

400mg and Allpurinol 300mg daily.

I have been impressed with Dr so far but was curious if anyone

out there has any info on him. He seems to be on the cutting edge as

far as SCT and BMT if need be down the road. He is a fauclty member

at Emory University and seems to be involved with giving or

participating in seminars quite often. So far he has been very

giving of his time and doesn't hesitate to answer our questions no

matter how many or how insignificant they may be.

My precious brother found this group and pointed me in your

direction. I look forward to learning from each and every one of

you. I will be thankful for " ya'll " and pray for all.

Thank you -- Tracey

---------------------------------

Everyone is raving about the all-new .