new member

[Guest guest]

Thanks Phyliss-

Sue

[Guest guest]

Sorry - meant Pam

Thank You

I think I must have glivec brain this morning - even called my dog

by my husbands name

Sue

[Guest guest]

Whew! Not sure what would get you in more trouble: that or calling your husband

by your dog's name. : - )

From: hollie@...

Date: Mon, 30 Mar 2009 05:58:28 +0800

Subject: [ ] Re:NEW MEMBER

Sorry - meant Pam

Thank You

I think I must have glivec brain this morning - even called my dog

by my husbands name

Sue

[Guest guest]

lol!! no problem!!

>

> Sorry - meant Pam

>

> Thank You

>

> I think I must have glivec brain this morning - even called my dog

> by my husbands name

>

> Sue

>

>

[Guest guest]

Google Dr. in Texas. You will find all the information on

him there. Then, if you wish, you can contact him. I know someone who used

him and literally saved their life. I am dealing with a mold issue as we

speak and am in the process of moving from our apartment. I have been sick

and unable to function for almost a year and we found several types of mold

She should probably have blood tests done again, maybe they didn't do the

proper testing. The symptoms do seem to be mold related in my opinion.

Just check Dr. out. Hope this helps. Sherry

-- [] New member

Hi All!

I have joined this group hoping to find some help for my sister.

She has been a librarian in an elementary school which was closed and

currently remains closed, due to the finding of mold about this time last

year. There have been complaints from some at that school about symtoms

being experienced for years. Although my sister has worked there for many,

many years, she only began experiencing symptoms in 2008. After much testing

guessing, etc, she was diagnosed with Lupus last summer. Unfortunately,

dispite continued treatment with typical Lupus meds, her symptoms remain.

She also recently had an ER visit and hospital stay due to an extreme

reaction causing swellng in her mouth and throat, inability to swollow due

to this swelling, a horrible burning sensation and pain in her throat

dispite the lack of redness or infection, and extreme swelling of her

extremities. They were unable to figure out why this happened. Allergy

testing was negative for all things tested. Her more typical " daily "

symptoms involve pain and swelling in her hands, feet, and pain in her arms

and legs. Also she, who is normally a bundle of energy, is also so very

tired. Typical blood work looking for infection, anemia, etc is all negative

The Rheumatologist is seemingly stumped and unsure of how to procede in a

way to best help her. My sister was previously otherwise extremely healthy..

always on the go...always upbeat and energetic.

Here is the thing...boxes and boxes of books from her library at the

curently closed school are being stored in her basement. Also, now another

school library in the district, where she is currently functioning as a

librarian, has been found to have mold and has now closed. In other words,

she has never gotten away from the molds. Molds found include Stachybotrus

and others.

I don't want to make this any longer of a post, but was wondering if any of

you could advise if any of the symptoms I have described have happened to

you? Could they be mold related? If so, do you have any advice on what " type

of physician to see for this? She lives in NE PA.

Many thanks in advance for any information you might be able to share.

Kathy

[Guest guest]

If I were her I would call Dr. Shoemaker 410-957-1550. Let her discuss her

situation with him and he will give her the advice from a toxic mold specialist

point of view.

________________________________

From: Sherry Carwile <secarwile@...>

Sent: Thursday, April 23, 2009 7:50:15 PM

Subject: Re: [] New member

Google Dr. in Texas. You will find all the information on

him there. Then, if you wish, you can contact him. I know someone who used

him and literally saved their life. I am dealing with a mold issue as we

speak and am in the process of moving from our apartment. I have been sick

and unable to function for almost a year and we found several types of mold

She should probably have blood tests done again, maybe they didn't do the

proper testing. The symptoms do seem to be mold related in my opinion.

Just check Dr. out. Hope this helps. Sherry

-- [] New member

Hi All!

I have joined this group hoping to find some help for my sister.

She has been a librarian in an elementary school which was closed and

currently remains closed, due to the finding of mold about this time last

year. There have been complaints from some at that school about symtoms

being experienced for years. Although my sister has worked there for many,

many years, she only began experiencing symptoms in 2008. After much testing

guessing, etc, she was diagnosed with Lupus last summer. Unfortunately,

dispite continued treatment with typical Lupus meds, her symptoms remain.

She also recently had an ER visit and hospital stay due to an extreme

reaction causing swellng in her mouth and throat, inability to swollow due

to this swelling, a horrible burning sensation and pain in her throat

dispite the lack of redness or infection, and extreme swelling of her

extremities. They were unable to figure out why this happened. Allergy

testing was negative for all things tested. Her more typical " daily "

symptoms involve pain and swelling in her hands, feet, and pain in her arms

and legs. Also she, who is normally a bundle of energy, is also so very

tired. Typical blood work looking for infection, anemia, etc is all negative

The Rheumatologist is seemingly stumped and unsure of how to procede in a

way to best help her. My sister was previously otherwise extremely healthy..

always on the go...always upbeat and energetic.

Here is the thing...boxes and boxes of books from her library at the

curently closed school are being stored in her basement. Also, now another

school library in the district, where she is currently functioning as a

librarian, has been found to have mold and has now closed. In other words,

she has never gotten away from the molds. Molds found include Stachybotrus

and others.

I don't want to make this any longer of a post, but was wondering if any of

you could advise if any of the symptoms I have described have happened to

you? Could they be mold related? If so, do you have any advice on what " type

of physician to see for this? She lives in NE PA.

Many thanks in advance for any information you might be able to share.

Kathy

[Guest guest]

I was also diagnosed with Lupus and had tests done by rheumatologists. After

trying many different treatments, the only thing that worked for me was Lamisil

(an anti-fungal). I know a lot of people have had success with Dr. Shoemaker,

but he doesn't use antifungals. She shouldn't be storing those books in her

basement since they came from a contaminated school.

________________________________

From: xr1000_01 <xr1000@...>

Sent: Thursday, April 23, 2009 6:24:24 AM

Subject: [] New member

Hi All!

I have joined this group hoping to find some help for my sister.

She has been a librarian in an elementary school which was closed and currently

remains closed, due to the finding of mold about this time last year. There have

been complaints from some at that school about symtoms being experienced for

years. Although my sister has worked there for many, many years, she only began

experiencing symptoms in 2008. After much testing, guessing, etc, she was

diagnosed with Lupus last summer. Unfortunately, dispite continued treatment

with typical Lupus meds, her symptoms remain. She also recently had an ER visit

and hospital stay due to an extreme reaction causing swellng in her mouth and

throat, inability to swollow due to this swelling, a horrible burning sensation

and pain in her throat dispite the lack of redness or infection, and extreme

swelling of her extremities. They were unable to figure out why this happened.

Allergy testing was negative for all things tested. Her more typical " daily "

symptoms involve pain and

swelling in her hands, feet, and pain in her arms and legs. Also she, who is

normally a bundle of energy, is also so very tired. Typical blood work looking

for infection, anemia, etc is all negative. The Rheumatologist is seemingly

stumped and unsure of how to procede in a way to best help her. My sister was

previously otherwise extremely healthy...always on the go...always upbeat and

energetic.

Here is the thing...boxes and boxes of books from her library at the curently

closed school are being stored in her basement. Also, now another school library

in the district, where she is currently functioning as a librarian, has been

found to have mold and has now closed. In other words, she has never gotten away

from the molds. Molds found include Stachybotrus and others.

I don't want to make this any longer of a post, but was wondering if any of you

could advise if any of the symptoms I have described have happened to you? Could

they be mold related? If so, do you have any advice on what " type " of physician

to see for this? She lives in NE PA.

Many thanks in advance for any information you might be able to share.

Kathy

[Guest guest]

Sherry and Chante,

Thank you SO much! I will check into these names and pass this info on to my

sister,

Thanks!

Kathy

>

> If I were her I would call Dr. Shoemaker 410-957-1550. Let her discuss her

situation with him and he will give her the advice from a toxic mold specialist

point of view.

>

>

>

>

>

[Guest guest]

Hi Kathy,

I went to a Doctor in ton SC and his name is Dr Lieberman, he is

really wonderful and has a bio-detox center where he literally detoxes your

body of all the toxins. I also had the swelling in my throat and difficulty

swallowing and it was due to my chemical sensitivities after being exposed

to mold-I was also full of life and energy before I got sick in 06, the

problem with mold illness is that it affects people in different ways and

can affect all the systems of the body due to the Neurotoxic effects of the

toxins that mold produces in an indoor environment. Has she been having any

heart issues? palpitations or irregular heart beat, severe

headaches,sensitivity to light. All of these things and more can be caused

by mold exposure and sometimes the effects from your exposure don't turn up

for quite a while. If you look up www.AAEM.com it will give you a list of

all the Environmental Medicine Doctors in the States, maybe there is one

closer to you?

Good Luck and Thank you for reaching out for your sister.

.

On Thu, Apr 23, 2009 at 9:24 AM, xr1000_01 <xr1000@...> wrote:

>

>

> Hi All!

>

> I have joined this group hoping to find some help for my sister.

>

> She has been a librarian in an elementary school which was closed and

>

[Guest guest]

I am also a former teacher exposed to mold over the years. By the fall of

2003 I thought I was dying. Please go to _www.biotoxin.info_

(http://www.biotoxin.info) for some excellent infomation. Your sister can take

the VCS

test that is 98% accurate, easy to use and inexpensive. If you have a toxic

illness it will show up in the optic nerve.

I had many of the same symptoms including a heart cath for what they

thought was a heart attack. All the Drs. I saw were stumped as well. Dr.

Shoemaker in southern saved my life. I followed his treatment protocol to the

letter and still see him about every 6 months. Excellent physician and wonderful

man. PA is not that far away from Salisbury, MD. There are people that

have traveled across the country to see him. Just my opinion but that's were I

would go without delay!!

Any questions feel free to contact me ANYTIME!!!!

Sue

Hi All!

I have joined this group hoping to find some help for my sister.

She has been a librarian in an elementary school which was closed and

currently remains closed, due to the finding of mold about this time last year.

There have been complaints from some at that school about symtoms being

experienced for years. Although my sister has worked there for many, many

years, she only began experiencing symptoms in 2008. After much testing,

guessing, etc, she was diagnosed with Lupus last summer. Unfortunately, dispite

continued treatment with typical Lupus meds, her symptoms remain. She also

recently had an ER visit and hospital stay due to an extreme reaction

causing swellng in her mouth and throat, inability to swollow due to this

swelling, a horrible burning sensation and pain in her throat dispite the lack

of

redness or infection, and extreme swelling of her extremities. They were

unable to figure out why this happened. Allergy testing was negative for all

things tested. Her more typical " daily " symptoms involve pain and swelling

in her hands, feet, and pain in her arms and legs. Also she, who is

normally a bundle of energy, is also so very tired. Typical blood work looking

for infection, anemia, etc is all negative. The Rheumatologist is seemingly

stumped and unsure of how to procede in a way to best help her. My sister

was previously otherwise extremely healthy...always on the go...always upbeat

and energetic.

Here is the thing...boxes and boxes of books from her library at the

curently closed school are being stored in her basement. Also, now another

school library in the district, where she is currently functioning as a

librarian, has been found to have mold and has now closed. In other words, she

has

never gotten away from the molds. Molds found include Stachybotrus and

others.

I don't want to make this any longer of a post, but was wondering if any

of you could advise if any of the symptoms I have described have happened to

you? Could they be mold related? If so, do you have any advice on what

" type " of physician to see for this? She lives in NE PA.

Many thanks in advance for any information you might be able to share.

Kathy

**************The Average US Credit Score is 692. See Yours in Just 2 Easy

Steps!(http://pr.atwola.com/promoclk/100126575x1221421330x1201417418/aol?redi

r=http://www.freecreditreport.com/pm/default.aspx?sc=668072 & hmpgID=62 & bcd=Ap

rilAvgfooter424NO62)

[Guest guest]

research ozone therapy. It does a great job with killing fungus in the body as

well as other pathogens. " The story of ozone " by Dr Saul Pressman is available

on the internet to read. Check that too. You can join his group the ozone

group. He is a wealth of info. and does great job on educating us

concerning the different health issues that we might have. Diet is important

too. Keep you house as mold free as possible and wear a mask when you think you

are going to be exposed. Hope you can overcome this one. Fungus is persistent so

we just have to learn to be more persistent. Dr Richie Shoemaker in land I

think is also quite helpful to many people with mold problems. He is quite

known. He wrote " the mold warriors " very good book

Just be persistent and patient and you will overcome this one and be a lot wiser

for it.

cathy

[Guest guest]

>

> research ozone therapy. It does a great job with killing fungus in the body as

well as other pathogens. " The story of ozone " by Dr Saul Pressman is available

on the internet to read. Check that too. You can join his group the ozone

group. He is a wealth of info. and does great job on educating us

>Thanks for your reply. I have read about Dr Shoemaker and am considering

contacting him ,but he is about 5 hours from where I live. I have also read

about Dr Johanning, who also has been treating patients, have you heard of Dr.

Johanning? He has his office in Albany, NY. Mike.

[Guest guest]

sorry to hear this, you have just described much of what I deal with.

the only advice i can gine you is if your not washing your sinuses daily it may

help you alot to do so. are your reactions always delayed cause sine of mine

are immediate. seems mostly the delayed reactions come from something eaten, but

also exposure to mild or very weal smells, (some i cant even smell) can also

cause delayed reactions. just smelling something starting to ferment can affect

me

instantly. is aspergillus the only mold you react to?

have you had a lung biopsy dor aspergillus ? I think if it's in your lungs you

may be more reactive to it than just by eating it but not sure. there is a

aspergillus web site that might help.

I cant recall it off hand. aspergillus uk.org or something like that. sorry. as

far as doctors for aspergillus, i dont know.

>

> I lived in a house for 12+ years with toxic mold in the walls, aspergillus and

stachybotyrs. We remediated the house and moved to a new house. Now I am very

sensitive to aspergillus and have horrible headaches when exposed to aspergillus

even on high mold count days and in certain foods. I can not seem to avoid

aspergillus. The headaches and extreme nausea are getting worse. I've had

various surgeries and seen many neurologists, allergiests and other doctors the

past 3 years since leaving our former house. The allergist said it is not a true

allergy, but a type 2 reaction, and all I could do is avoid the mold, but that

is impossible to do.

>

> Most doctors do not believe mold is causing my illness or that I am this

sensitive to mold and if they do believe it, they do not know what to do for me.

Is there anything a person can do once sensitized to mold? It is also in more

foods and even many supplements, than most people realize. Anything fermented

probably contains a fair amount of aspergillus so I have stopped taking most

pills because of this condition. Most people have no idea how devastating this

illness is. I basically can not leave my house and am afraid to eat most

prepared foods and I feel sick most of the time. Are there any doctors in the US

anywhere who are knowledgable about mold and how to help people who are sick

from mold.

>

[Guest guest]

Where are you located, there are Docs out there.  It just helps to know west

coast, east coast, midwest..

Your not crazy, your sick from mold and yes mold can make you sick.

kristina

From: who <jeaninem660@...>

Subject: [] Re: New Member

Date: Tuesday, August 11, 2009, 6:09 PM

 

sorry to hear this, you have just described much of what I

deal with.

the only advice i can gine you is if your not washing your sinuses daily it may

help you alot to do so. are your reactions always delayed cause sine of mine

are immediate. seems mostly the delayed reactions come from something eaten, but

also exposure to mild or very weal smells, (some i cant even smell) can also

cause delayed reactions. just smelling something starting to ferment can affect

me

instantly. is aspergillus the only mold you react to?

have you had a lung biopsy dor aspergillus ? I think if it's in your lungs you

may be more reactive to it than just by eating it but not sure. there is a

aspergillus web site that might help.

I cant recall it off hand. aspergillus uk.org or something like that. sorry. as

far as doctors for aspergillus, i dont know.

>

> I lived in a house for 12+ years with toxic mold in the walls, aspergillus and

stachybotyrs. We remediated the house and moved to a new house. Now I am very

sensitive to aspergillus and have horrible headaches when exposed to aspergillus

even on high mold count days and in certain foods. I can not seem to avoid

aspergillus. The headaches and extreme nausea are getting worse. I've had

various surgeries and seen many neurologists, allergiests and other doctors the

past 3 years since leaving our former house. The allergist said it is not a true

allergy, but a type 2 reaction, and all I could do is avoid the mold, but that

is impossible to do.

>

> Most doctors do not believe mold is causing my illness or that I am this

sensitive to mold and if they do believe it, they do not know what to do for me.

Is there anything a person can do once sensitized to mold? It is also in more

foods and even many supplements, than most people realize. Anything fermented

probably contains a fair amount of aspergillus so I have stopped taking most

pills because of this condition. Most people have no idea how devastating this

illness is. I basically can not leave my house and am afraid to eat most

prepared foods and I feel sick most of the time. Are there any doctors in the US

anywhere who are knowledgable about mold and how to help people who are sick

from mold.

>

[Guest guest]

-

I'm in the mid Missouri area. Do you know of any good doctors for toxic mold

exposure? Thanks

-- In , a Townsend <kmtown2003@...> wrote:

>

> Where are you located, there are Docs out there.  It just helps to know west

coast, east coast, midwest..

>

> Your not crazy, your sick from mold and yes mold can make you sick.

> kristina

[Guest guest]

I'm a former teacher as well. Go to _www.biotoxin.info_

(http://www.biotoxin.info) and take the VCS test. It is inexpensive, 98%

accurate and a first

screening of a toxic exposure. I can totally understand the weight gain as

I suffered from that too and NOTHING I did would help.

Lots of good people here to help but I recommend you read the info on Dr.

Shoemaker's website and feel free to contact me ANYTIME!!

I'll try to help anyway I can.

Sue

Hello,

I am Silver. I'm a retired teacher. I live in SC, with chronic asthma that

I believe was caused by mold in the classroom where I taught my last 3

y

[Guest guest]

Welcome 

Sorry you had to find us under these circumstances. 

I was given steroids for an injury many years ago.  My weight skyrocketed as

well.  From 110 to 190.  I could not lose the weight.  I did not have MCS or

anything else then.  Those steroids stay in your system for years. From the last

dose at least 5 years, then maybe can begin to lose weight.  I will never allow

anyone to give those to me again. That is me. I have since lost that weight.

After MCS I was given inhaler.  The steroids in inhaler I knew physically

something was wrong. I stopped them. I initially did not know steroids in

inhaler, new to MCS and I did not have asthma which is what they thought.  I had

RAD (reactive airway disease).  Some PFT's for respiratory problems will make

MCS worst.

I have Albuterol, not a steroid now and reject the ones with steroids. They have

also removed the propellants from these TG !! I was initially given one with

propellant, bad for MCS.

There is a great Doc I have heard in SC some others can fill you in on him.  He

wil be your best bet on getting back on track.

Good Luck !! Wish you well !!!!

 

 Dragonfly ... Breaks illusions, Brings visions of power, No need to prove it,

Now is the hour! Know it, believe it, Great Spirit intercedes, Feeding you,

blessing you, Filling all your needs. By DCarson JSams

God Bless !!

dragonflymcs

Mayleen

________________________________

From: Anita Tarlton <silver82956@...>

Sent: Thursday, September 17, 2009 1:58:15 PM

Subject: [] New Member

 

Hello,

I am Silver. I'm a retired teacher. I live in SC, with chronic asthma that I

believe was caused by mold in the classroom where I taught my last 3 years.

[Guest guest]

Not a Dr but after a mold exposure its common to get reactive airways.  There is

a list of Dr's on the AAEM web site so you can find a Dr closest to you.  Agian

not a DR but after reviewing MANY research articles steriods and mold don't

mix.  If you have any comercial cleaning chemicals in your house get them out.  

Get as much clean fresh air as you can, open a window.   Eliminate all fragrance

products, including laundry soaps shampoos.  ANYTHING that is not natural and

that includes essiantal oils.

Since you worked in a moldy building for so long you may have brought the mold

home with you.  Sorry for that bad news but the more you know the sooner you can

start feeling better.

They are using anti-fungals with great success for severe asthma.

Hope that Helps and God Bless

a

From: Anita Tarlton <silver82956@...>

Subject: [] New Member

Date: Thursday, September 17, 2009, 9:58 AM

I am Silver. I'm a retired teacher. I live in SC, with chronic asthma that I

believe was caused by mold in the classroom where I taught my last 3 years.

While it is

[Guest guest]

Mayleen,

Hope you are doing better w/o the steroids.

The doc in SC; are you talking about Dr. Liebermann?

thanks.

Sam

MCS.

There is a great Doc I have heard in SC some others can fill you in on him.  He

wil be your best bet on getting back on track.

[Guest guest]

Thanks for this info -- the good news is that if I brought the mold home with me

-- I have moved since I stopped working there!  Wish I'd found this group

earlier...

Check out my blog at www.anitatarlton.blogspot.com  

Nothing makes the earth seem so spacious as to have friends at a distance; they

make the latitudes and longitudes.

Henry Thoreau

From: a Townsend <kmtown2003@...>

Subject: Re: [] New Member

Not a Dr but after a mold exposure its common to get reactive

airways.  There is a list of Dr's on the AAEM web site so you can find a Dr

closest to you.

[Guest guest]

Hi Sam,

The steroids were back in the 90's and i will not take them again. Lost the

weight which took years and I never want the  stuff again.  Pulmo has

mentioned steroids, no way !!    I do not remenber the name of the Dr it was

mentioned on the group.  I must have saved it somewhere, when I find it I will

let you know.

 

Where are you right now?

God Bless !!

dragonflymcs

Mayleen

[Guest guest]

> Currently I`m on 500mg Bosutinib (SKI) treatment (start: 18th June). This is

> trial program in St.sburg organised by Wyeth pharmaceutical company.

> So far all is good, medicines work well (crosse my fingers) but is still

> very early to be sure. Anybody here whom on similar treatment?

>

> Wish a good health to everybody.

> Serj.

______________________

Hi Serj,

The one person that I know on Bosutinib is Jerry Mayfield, who has another cml

website.....www.newcmldrug.com

I know he is very pleased with this drug....he had previously been on other

drugs that did not work well for him (he has a mutation).

Also, just to let you know, there is also an Asian CML group and there are some

people from Singapore in that group.....this is not to say that we don't totally

welcome you here. Some people belong to several cml groups. You can find a link

to the Asian group from Jerry's site as listed above.

My best wishes to you for good success.......I know there are people waiting for

Bosutinib to be approved.

C.

[Guest guest]

Privet Serj,

Welcome to the club that no one wants to be a member of.

I know of several patients on Bosutinib and they are doing very well. The

patients I know have tried and failed on the other TKI medications (Gleevec,

Sprycel, etc) and are doing very well on Bosutinib. I hope that it works

well for you.

Spasibou for participating in the trial.

Zavie

Zavie (age 71)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of Serj

Vasetskiy

Sent: October 3, 2009 9:40 PM

Subject: [ ] new member

Hello to All!

Unfortunately I became the new member of this group.

But there is also good news, I became a part of group who always will help

me if I will need it, as well as I will be always glad to help to anyone who

will need it too.

Let me introduce myself:

My name is Serj. I am Russian but living in Asia for a long time. (Vietnam

since 1990, then Singapore during one year aprox.)

I`m 30 year of age. I was dx with CML chronic phese on 29 May 2009 during my

medical test in Singapore.

Currently I`m on 500mg Bosutinib (SKI) treatment (start: 18th June). This is

trial program in St.sburg organised by Wyeth pharmaceutical company.

So far all is good, medicines work well (crosse my fingers) but is still

very early to be sure. Anybody here whom on similar treatment?

Wish a good health to everybody.

Serj.

4th October 2009.

--

Thanks and Best Regards

Serj Vasetskiy

Skype: Sp-Radio

ICQ: 46765657

: SaipitVt

[Guest guest]

Hi : Glad you took Zavie's advice, and joined our group.

I think you will be glad you did. You can talk to us about anything and

everything. You can see how people have progressed with the treatments that are

available now.

I was diagnosed in 1998, so that gives you an idea of how good treatment for

CML is now compared to years ago.

Hope to see some more postings from you, and that we all get to know you

better.

Welcome

A

>

> Hi all.

>

> Zavie mentioned this group to me and suggested I join and introduce

myself. After an initial period trying not to find out too much about CML nor

talk to other patients, I've become braver.

>

> I'm 42 and live in London, UK, with my wife and two boys (7 and 10). I was Dx

in May 09 following a routine blood screen. No symptoms - but the screen showed

high platelets (> 1100) but only very slightly raised WBC (just 15). I was

referred to my local hospital which initially didn't think it was leukemia but

on doing cytogenics discovered 80% Ph+ve cells, which was a shock. My " break "

was also described as unusual and because of that, they referred me to the

Hammersmith hospital in London, under whose excellent care I've been since.

>

> Fortunately, they said they saw no reason why imatinib wouldn't work. Being

" odd " I was worried but so far they have been proven right as my blood counts

were normal in just over 3 weeks, and settled down quickly. I've not had new

cytogenics done or FISH results yet, and the last time I went to the Hammersmith

they hadn't been able to do PCR. However, I'm also visiting my local hopsital

and they have just received PCR results from the Hammersmith. I'm a bit

cautious about them but they look good - 83% at diagnosis was 0.063% in

September - a little over 3 months. I was quite surprised and want to see that

confirmed by more tests, but it was good to see.

>

> I now feel lucky to have been Dx'd in the imatinib era and more confident

about the future - especially seeing so many here who've been on Gleevec for so

long. I know it can stop working but 6 months ago I would have taken where I am

now, and side effects are few. To show some gratitude to my medics and esp the

Hammersmith, I've also begun to help out with fundraising for their research.

Every little bit helps and I've learned how easy (and fun) it can be to put

something back.

>

> Looking forward to chatting to you, and good luck to you all.

>

> Regards

>

>

>

[Guest guest]

O!!! YIPPEEE!!!

Number 1283 in the Zero Club

Zavie

Welcome to the group .

Zavie

_____

From: [mailto: ] On Behalf Of

willoughbyr@...

Sent: November 16, 2009 4:56 AM

Subject: [ ] New member

Hi all.

Zavie mentioned this group to me and suggested I join and introduce

myself. After an initial period trying not to find out too much about CML

nor talk to other patients, I've become braver.

I'm 42 and live in London, UK, with my wife and two boys (7 and 10). I was

Dx in May 09 following a routine blood screen. No symptoms - but the screen

showed high platelets (> 1100) but only very slightly raised WBC (just 15).

I was referred to my local hospital which initially didn't think it was

leukemia but on doing cytogenics discovered 80% Ph+ve cells, which was a

shock. My " break " was also described as unusual and because of that, they

referred me to the Hammersmith hospital in London, under whose excellent

care I've been since.

Fortunately, they said they saw no reason why imatinib wouldn't work. Being

" odd " I was worried but so far they have been proven right as my blood

counts were normal in just over 3 weeks, and settled down quickly. I've not

had new cytogenics done or FISH results yet, and the last time I went to the

Hammersmith they hadn't been able to do PCR. However, I'm also visiting my

local hopsital and they have just received PCR results from the Hammersmith.

I'm a bit cautious about them but they look good - 83% at diagnosis was

0.063% in September - a little over 3 months. I was quite surprised and want

to see that confirmed by more tests, but it was good to see.

I now feel lucky to have been Dx'd in the imatinib era and more confident

about the future - especially seeing so many here who've been on Gleevec for

so long. I know it can stop working but 6 months ago I would have taken

where I am now, and side effects are few. To show some gratitude to my

medics and esp the Hammersmith, I've also begun to help out with fundraising

for their research. Every little bit helps and I've learned how easy (and

fun) it can be to put something back.

Looking forward to chatting to you, and good luck to you all.

Regards