Newbie

[Guest guest]

Welcome!!!

You have come to the right place.  Congratulations on the best bad news you

could have gotten!!  I was diagnosed January 8, 2008 and have had no leukemia

in my blood since October 2009.

There are so many amazing people in this group and I learn something new every

time someone posts.

If you have a question, ASK!!!!  There is nothing you are thinking, feeling or

worrying about that one of us hasn't already had.  My brother  has a quote

" ... been there, done that, bought the T-Shirt!! "

Good Luck and Blessings,

Jo-Dee in beautiful, Tippecanoe, Ohio!!!!!

From: melodyhahn <Melodyhahn@...>

Subject: [ ] Newbie

Date: Thursday, July 1, 2010, 11:49 PM

 

Hi: I just joined this group. I just found out a week ago that I have

CML. I am trying to read and understand as much as possible. I'm 51, married,

no children. I have fibromyalgia so I'm not sure if the pain I'm in is from

that or the CML. I'll start on Tasigna as soon as the pharmacy gets it, I've

had my ekg.

[Guest guest]

Hi Melody!

You’re not alone in this fight! I am a 28 year old male who was DX on

10.22.09. I have been taking Gleevec since then with a2.0 log reduction. I am

hopeful that I will be PCRU by November!

Keep your head up!

Chemo-Sabi

Romero

28 year old male in Santa , California

DX-10.22.09

Hydroxeuya-10.22.09-10.29.09

Gleevec 400MG-10.29.09-11.06.09

Gleevec Reduction 200MG-11.06.09-01.04.10

Gleevec increase 300MG-01.05.10-01.13.10

BCR-ABL-126% or 0.2637

0.6 Log Reduction 02.05.10

Gleevec increase 400MG 01.14.10-Present

1.8 Log Reduction 06.12.10

From: [mailto: ] On Behalf Of Jo-Dee

McKibben

Sent: Friday, July 02, 2010 5:15 AM

Subject: Re: [ ] Newbie

Welcome!!!

You have come to the right place. Congratulations on the best bad news you

could have gotten!! I was diagnosed January 8, 2008 and have had no leukemia in

my blood since October 2009.

There are so many amazing people in this group and I learn something new every

time someone posts.

If you have a question, ASK!!!! There is nothing you are thinking, feeling or

worrying about that one of us hasn't already had. My brother has a quote " ...

been there, done that, bought the T-Shirt!! "

Good Luck and Blessings,

Jo-Dee in beautiful, Tippecanoe, Ohio!!!!!

From: melodyhahn <Melodyhahn@... <mailto:Melodyhahn%40> >

Subject: [ ] Newbie

<mailto:%40>

Date: Thursday, July 1, 2010, 11:49 PM

Hi: I just joined this group. I just found out a week ago that I have CML. I am

trying to read and understand as much as possible. I'm 51, married, no children.

I have fibromyalgia so I'm not sure if the pain I'm in is from that or the CML.

I'll start on Tasigna as soon as the pharmacy gets it, I've had my ekg.

[Guest guest]

Melody:

We all started in that same way

unsure of what lay ahead and

how CML was going to affect

our lives. There are people

on this site with 10, 20 and

at least one with over 30

years. So hopefully you will

find support and information

here.

Sent from my iPhone

On Jul 1, 2010, at 11:49 PM, " melodyhahn " <Melodyhahn@...> wrote:

> Hi: I just joined this group. I just found out a week ago that I

> have CML. I am trying to read and understand as much as possible.

> I'm 51, married, no children. I have fibromyalgia so I'm not sure if

> the pain I'm in is from that or the CML. I'll start on Tasigna as

> soon as the pharmacy gets it, I've had my ekg.

>

>

[Guest guest]

Hi Melody, love your name, it's my grand daughter's too.  I've had cml for over

15 years, and am in a trial for a new drug, Ariad, love it, and it's working

real well for me.  Today we live with cml, like others live with diabetes, or

high blood pressure.  When you are adjusted to your drug, you will live like

you don't even have it!  Good luck, Bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

> Hi: I just joined this group. I just found out a week ago that I

> have CML. I am trying to read and understand as much as possible.

> I'm 51, married, no children. I have fibromyalgia so I'm not sure if

> the pain I'm in is from that or the CML. I'll start on Tasigna as

> soon as the pharmacy gets it, I've had my ekg.

>

>

[Guest guest]

G'day Melody from Australia.

Welcome to our exclusive group. I am coming up for my 3rd year anniversary

with CML and it truly is a chronic disease that you can live with. We are

very fortunate to have our wonderful drugs for treatment. I was on Glivec

for a year and then swapped to Tasigna and have been PCRU since (no

leukaemic cells detectable).

I love Tasigna, but you must be very pedantic with following the 2 hour

fasting rule prior to taking Tasigna then 1 hour afterwards. The only thing

you can take in this time is water. I generally take my tablets 7- 8am in

the morning and 6pm in the evening.

With the fibromyalgia, I was having lots of joint and muscle pain prior to

dx and after 2 months on Glivec, I woke up one morning and didn't ache

anymore, however in your case, it is probably extenuating the problem, as

CML develops over years and it seems that we often can have a gradual onset

of 1-2 years before the disease is picked up.

Good luck and as said before, don't be afraid to ask as we have all been

through it.

Regards,

From: [mailto: ] On Behalf Of

melodyhahn

Sent: Friday, 2 July 2010 1:49 PM

Subject: [ ] Newbie

Hi: I just joined this group. I just found out a week ago that I have CML. I

am trying to read and understand as much as possible. I'm 51, married, no

children. I have fibromyalgia so I'm not sure if the pain I'm in is from

that or the CML. I'll start on Tasigna as soon as the pharmacy gets it, I've

had my ekg.

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[Guest guest]

Hi Melody: Welcome to our group. You will find a bunch of great people who are

going through the same thing, and always someone here to help. This December

coming will be 12 years since my diagnosis. There are a lot of old timers with

this, and a lot of new people just like you who are trying to figure out what is

ahead.

Hope we hear from you often. I have been on Gleevec since Oct. of 2000, but was

diagnosed in 1998.

A.

>

> Hi: I just joined this group. I just found out a week ago that I have CML. I

am trying to read and understand as much as possible. I'm 51, married, no

children. I have fibromyalgia so I'm not sure if the pain I'm in is from that

or the CML. I'll start on Tasigna as soon as the pharmacy gets it, I've had my

ekg.

>

[Guest guest]

Hi --

I was diagnosed about the same time as you--2006. I felt so sick and out of it

after diagnosis (and before), that I took about 10 months off work to just be

home and be sick. I was totally exhausted, my bones hurt, I had diarrhea from

Gleevec (still do, but more used to it now and have some good coping

strategies--Thank you Lord for imodium), and mentally/emotionally, I was just

scared and worried and stressed and depressed! The fatigue was something I

found particularly debilitating. However,the need to have health insurance, and

my two boys (11 and 15) all motivated me to get back to work, get back into

life, and that really helped take my mind off my troubles.

Yes, I have had some down days since then, but generally I come right back. I do

notice my immune system is perhaps a little less robust, and that I tend to get

really sick in the spring for some reason--who knows why--I have had C difficile

two years in a row--am battling it now as a matter of fact.

It is just a roller coaster ride, but so far, nothing so bad that my husband and

I haven't been able to weather it together. My family definitely helps--support

network of their prayers and love really keeps me going! As does this group! I

frequently lurk in the background and just absorb--Lottie is a wonderful friend

as are many others like who steered me to Dr Druker when I was in a state

of panic at the beginning because I wasn't responding very quickly or very

robustly to Gleevec. Dr Druker was a wonderful man to meet, and he put me on 600

mg of Gleevec instead of 400 mg, and changed how I take it (on an empty stomach

as opposed to with a big meal so it is aparently being absorbed better in my

system). My church is also very important to me.

So, now I am on Gleevec 600 mg per day, and so far maintaining a pretty good

solid remission for perhaps 2 years now, with a few glitches here and there

(like when I was in the hospital for a week and they didn't give me my Gleevec

even though I told them I had to have it!).

So, in spite of my doctors, and because of them, and God's loving care, I am

doing well and hope to continue to do so for a long time. I am 55 now, and plan

to live to be 100, so just 45 more years to go!

Best wishes, and welcome to our little group.

Vicki in Seattle area

>

> Hello everyone.

> My name is and I am a newly diagnosed CML patient. I was

> diagnosed on December 13 2006, and after confirmation that I indeed

> had the bcr/abl chromosone I started gleevec on December 21 2006.

>

> I am a breast cancer survivor, (diagnosed March 2004, 2

> lumpectomies, chemo, and radiation all completed by January 2005),

> so I am no stranger to the world of oncology and all the stresses

> that go with it. This time however, I have been feeling

> more " alone " as I have been unable to find a support group in my

> area. I was quite pleased to have stumbled on this group, and

> although the circumstances really suck for all of us, I am glad to

> have the opportunity to meet you all. I have read many of the

> postings and am thankful that they are there for me.

>

> A question I have for everyone right away is " how awful did you feel

> at the beginning of all this? " . Everything I have read leads me to

> believe I should feel a lot better than I do. I don't know my

> numbers yet...so I can't tell you what they are, but I was diagnosed

> in the chronic phase. I feel really crappy all around though.

> Severe fatigue, pain under my left ribs (that seems to be abating

> though), dizziness, just plain old wonky. Those are the symptoms I

> had before diagnosis and still have....of course since gleevec I

> have added some side-effects to go along with the symptoms. I am

> having difficulty discerning which is which though. How long does

> it take for the symptoms of the disease to abate?

> Thanks a lot

>

>

[Guest guest]

Hi,

 

I am new, still in the shock and need to accept I'm likely to be diagnosed with

RA. But pain I cannot ignore anymore is something I need to learn to manage,

dropping inflammatory causing foods out of my diet, etc...I know there is going

to be a learning curve. I'm pretty young, 38, not sure what the average age on

onset of this type of thing is. I haven't begun to study any statistics. I can

say, I've had long standing shoulder/neck injuries that just wouldn't heal

right-muscularly. And after a multitude of other autoimmune like symptoms, I've

finally looked up and realized I may end up starting the long process of filing

for disability if everything is as serious as I suspect. At 38 this is just hard

to accept. I do have friends who have had chronic pain issues and so I don't

feel completely alone, but it's still about getting used to accepting where I

am.

Light

(Portland, OR)

 

[Guest guest]

Hi and welcome. Although finding out you have RA will be hard, if that is

what's going on, you might be surprised that with good care you start feeling a

lot better. I could barely get around but after starting Enbrel I was soon back

to my old self. I'm having a flare now, but it's my first in nearly 5 yrs. I

work full time, exercise, chase my 7 and 2 yr old boys. Everyone here has been

sick so I'm fired up on prednisone and cleaning house like a mad woman.

Wheeeeee! Kate F

Sent from my iPhone

On Feb 26, 2011, at 11:48 AM, Light <lauralight1972@...> wrote:

> Hi,

>

> I am new, still in the shock and need to accept I'm likely to be diagnosed

with RA. But pain I cannot ignore anymore is something I need to learn to

manage, dropping inflammatory causing foods out of my diet, etc...I know there

is going to be a learning curve. I'm pretty young, 38, not sure what the average

age on onset of this type of thing is. I haven't begun to study any statistics.

I can say, I've had long standing shoulder/neck injuries that just wouldn't heal

right-muscularly. And after a multitude of other autoimmune like symptoms, I've

finally looked up and realized I may end up starting the long process of filing

for disability if everything is as serious as I suspect. At 38 this is just hard

to accept. I do have friends who have had chronic pain issues and so I don't

feel completely alone, but it's still about getting used to accepting where I

am.

>

> Light

> (Portland, OR)

>

>

>

[Guest guest]

Hi, I'm pretty young, at 38 and have been suffering various symptoms of of

fibro and RA for over 8 years now. I'm likely going to get affirming blood tests

soon. I'm just here for more info. an how to manage things better/foods to

avoid, etc...

[Guest guest]

Hi ,

I'm 38 also and was tentatively diagnosed last year. My symptoms haven't

gotten worse and only an elevated RF shows up in my blood work so I'm

still unsure if I have RA. I'm not taking any drugs for it.

soni

On 2/27/2011 7:12 AM, light wrote:

>

> Hi, I'm pretty young, at 38 and have been suffering various symptoms

> of of fibro and RA for over 8 years now. I'm likely going to get

> affirming blood tests soon. I'm just here for more info. an how to

> manage things better/foods to avoid, etc...

>

>

>

>

[Guest guest]

dont automatically think the worst. RA meds can make all the difference. I too

have had injuries from 2 car accidents and was diagnosed last year with RA.

After some rough months, mostly because of fatigue my doc has found a pretty

good RA cocktail. I am 52 and still working as a server. Some days are pretty

rough but I find getting out and not thinking about my aches and pains a god

send. I know I cant do this kind of work forever but for now I have to. Anyway

just keep your head up and think positive, If you have a physical job try to get

training for a non physical one. Just dont give up.

Carol

[Guest guest]

Thanks,I'm hoping to stay off of actual drugs as long as I can and focus on

natural management for now. I'm 100% unable to take anti-inflammatories

medically.

[Guest guest]

The work thing is definetly a real issue for me. I'm not sure which way to go to

look for work these days again. Lifting jobs are not an option after injuries

and I'm planning on ending up in an office most likely.

Light