new member

Posted October 22, 2007 · October 22, 2007

Hi

Thanks for your response. It was extremely comforting. I'm so glad to hear you

are doing

better. My weakness and fatigue has been absolutely alarming--but you've

helped. I've even

needed help pulling the blankets down on my bed because of weakness. I am so

grate ful

that I have so many wonderful people around to help with those things. I am

scheduled to

return to work in a few weeks, and have been very concerned. Thanks so much

>

> ************************************** See what's new at http://www.aol.com

>

Posted October 22, 2007 · October 22, 2007

Thank you Matt,

I am almost in tears now. Everyone around me has been so helpful and loving,

but they

just don't know as much as they try. I am having a lot of symptons that the

Gleevec

pamphlet didn't seem to cover. So I will share now--but I've only been on

Gleevec less

than a week, so please don't think I'm a complainer. It just feels better to

know that this is

the way it is.

Weakness EXTREME

Fatigue EXTREME

Pains everwhere and at time severe joint pain

nausea

I am grateful that there is a treatment. I just need to come to grips with the

diagnosis and

get down to taking care of it. It;s still surreal.

Take Care,

> Your short term goal will be hematological

> remission (your white counts returning to

> normal) and a longer term goal is to join

> Zavie's Zero Club. You will even get a

> Yipee when you reach it.

>

> My best regards,

>

> Matt

> Florida

> Father of 3

>

> ************************************** See what's new at http://www.aol.com

>

Posted October 22, 2007 · October 22, 2007

I'm only 4 weeks into the Gleevec pill - and I don't know if this will help,

but it can't hurt... concerning the nausea - I kept a journal of what I ate

and how I felt that evening. By process of elimination, I figured out that I

need to eat a bready meal. I take it with dinner - after I eat. But, it

helped to keep track of what made me feel sick. I don't have sickness unless

I don't eat well enough. Too much grease - that is REALLY bad.

Tammy

_____

From: [mailto: ] On Behalf Of

Sent: Sunday, October 21, 2007 8:14 PM

Subject: Re: [ ] NEW MEMBER

Thank you Matt,

I am almost in tears now. Everyone around me has been so helpful and loving,

but they

just don't know as much as they try. I am having a lot of symptons that the

Gleevec

pamphlet didn't seem to cover. So I will share now--but I've only been on

Gleevec less

than a week, so please don't think I'm a complainer. It just feels better to

know that this is

the way it is.

Weakness EXTREME

Fatigue EXTREME

Pains everwhere and at time severe joint pain

nausea

I am grateful that there is a treatment. I just need to come to grips with

the diagnosis and

get down to taking care of it. It;s still surreal.

Take Care,

> Your short term goal will be hematological

> remission (your white counts returning to

> normal) and a longer term goal is to join

> Zavie's Zero Club. You will even get a

> Yipee when you reach it.

>

> My best regards,

>

> Matt

> Florida

> Father of 3

>

> ************************************** See what's new at http://www.aol.

<http://www.aol.com> com

>

Posted October 22, 2007 · October 22, 2007

Hi welcome from California!!!

I was diagnosed March 2007- I thought I was tired from

working 3 jobs and being a single mom-smile. You are

among friends- welcome to our tribe. I have learned

more from the posts than from my hem/onc. He should

join- smile.

--- Malseed <rodorbal@...> wrote:

> Hi - welcome from Australia. I was diagnosed

> in July on my 50th

> birthday <wry smile>, after routine blood tests

> showed leukaemic cells, so I

> am only quite new and in my 4th week of Glivec

> (Gleevec). This is a great

> list and I have learnt heaps already, plus great

> support.

>

> Good luck in your Glivec journey.

>

> Regards,

>

> From:

> [mailto: ] On Behalf Of

> Sent: Saturday, 20 October 2007 8:50 AM

>

> Subject: [ ] NEW MEMBER

>

> Hello Everyone,

>

> My name is H. from Cleveland Ohio, USA. I was

> just diagnosed with CML

> and have

> started Gleevec. I'm 42, and they found the high

> white count during an exam

> for something

> else. In the last year, I have become progressivly

> more fatigued, but blamed

> it on another

> health condition.

>

> I just wanted to introduce myself. It's stil sinking

> in.

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

Posted November 19, 2007 · November 19, 2007

I have several friends with Aspergers , one of the disorders of the autistic spectrum,I am interested in the possibility of MMS helping with this disorder since Jim Humble has said MMS oxidizes mercury and lead and other heavy metals that are said to be related to autism.I have hesitated to approach them with the MMS possibility, But It is another potential tool in improving their conditions.The Aspergers folks I know have vastly improved as they reach maturity due to their parents dilligence in natural foods diets and also in behaviorial teaching . The parents spent lots of time explaining personal space and personal interactions to them. They appear normal in most aspects as adults except for a few social issues.Prehaps the MMS would help.Jim Humble claims a Mexican family used MMS with a Asperger -Autistic child in Mexico and that the child was much improved. Im also interested in MMS as a aid in treating ADD and ADHD. I

have 2 grown children who have ADD .One son is in College and I dont see him much. I plan to take him some MMS at thanksgiving. My Daughter tried MMS for a cold and overdosed and became nauseated s now she is hesiitant to try it anymore. Please explain the significance of the high titres for those viruses.Does it mean they had a bad case of the disease at some point , or that the immunizations they recieved may have caused some dammage? MMS kills viruses ,bacteria ,fungus and assorted microbes. so it would cause a increase in health and wellbeing fom lack of these disease causing germs . Without those stresses , perhaps the body would be able to heal itself of other problems. IN NC Rosemarie Dubrowsky

<roeathome@...> wrote: Hello,Just signed onto this group yesterday. I have had MMS for about 3 weeks now and have begun to use it.I went back and read every post trying to get my arms around what MMS can do.I started using MMS myself two weeks ago, and thinking that I was feeling fine, went up quickly to 5 drops 2xs per day and had very loose stool and some discomfort. I waited a few days and then resumed with only 2 drops. I took another break for 3 days because of a trip that I made.I am

finding that I am having "twinges" in places where I know I have had issues before (ie: gall bladder), but i am also feeling clearer headed, almost euphoric shortly after taking the AMMS. I have a friend with an adult that has a diagnosis of autism that this past spring he tested positive for high strep titres. She just started this weekend with him and she is only doing one drop 2xs per day. Additionally, his titres for measles were a couple of thousand times higher than "normal". She is hopeful that MMS will be helpful for him.I am looking forward to learning more I will let you know what I see.Roe Wilkins

http//:www.juiceplus.com/+lw55887

The Children's Research Foundation Children 6-15 FREE for 3 years

Be a better sports nut! Let your teams follow you with Mobile. Try it now.

Posted November 19, 2007 · November 19, 2007

Has anyone tried DMSO for Autism, Aspergers and other specturms of

the disorder?

From what I've read the DMSO will reset the genetic pattern in the

cells, sounds like it could really help.

In Christ,

Ava

> Hello,

>

> Just signed onto this group yesterday. I have had MMS for about 3

> weeks now and have begun to use it.

>

> I went back and read every post trying to get my arms around what

> MMS can do.

>

> I started using MMS myself two weeks ago, and thinking that I was

> feeling fine, went up quickly to 5 drops 2xs per day and had very

> loose stool and some discomfort. I waited a few days and then

resumed

> with only 2 drops. I took another break for 3 days because of a

trip

> that I made.

>

> I am finding that I am having " twinges " in places where I know I

> have had issues before (ie: gall bladder), but i am also feeling

> clearer headed, almost euphoric shortly after taking the AMMS.

>

> I have a friend with an adult that has a diagnosis of autism that

> this past spring he tested positive for high strep titres. She just

> started this weekend with him and she is only doing one drop 2xs

per

> day. Additionally, his titres for measles were a couple of thousand

> times higher than " normal " . She is hopeful that MMS will be helpful

> for him.

>

> I am looking forward to learning more I will let you know what I

see.

>

> Roe

>

> Wilkins

> http//:www.juiceplus.com/+lw55887

> The Children's Research Foundation Children 6-15 FREE for 3 years

>

> ---------------------------------

> Be a better sports nut! Let your teams follow you with

Mobile. Try it now.

>

Posted November 19, 2007 · November 19, 2007

,

you asked:

>

> Please explain the significance of the high titres for those

viruses.Does it mean they had a bad case of the disease at some point ,

or that the immunizations they recieved may have caused some dammage?

In this man's case, it is both of what you are saying. The titres from

the strep most likely came from a case of strep being untreated because

of inability to communicate pain and a very high tolerence for it.

Therefore, the strep went systemic. A blood test was taken and the mas

titres should be 180, but this man's titres came back 980.

Regarding the measles titres, the only known exposure is the MMR

vaccine. There has been studies done on individuals with autism that

show that they have the vaccine strain of measles in their cerebral

spinal fluid. This person has not had the test done, but one thing is

for sure... his body is harboring measles.

I hope this is helpful.

Roe

>

> MMS kills viruses ,bacteria ,fungus and assorted microbes. so it

would cause a increase in health and wellbeing fom lack of these

disease causing germs . Without those stresses , perhaps the body would

be able to heal itself of other problems.

>

> IN NC

Posted November 19, 2007 · November 19, 2007

Roe, Hopefully the strep bacteria and measles viruses will be wiped out with the help of the MMS.It sure is scarey to think of the government forcing parents to give their children, even those who have had adverse reactions to the shots or who already have a family history of autism or ADD , those Vaccinations.Let us know if the MMS improves the situation for him.It will be interesting to see if the titres improve after a round of MMS. IN NCRosemarie Dubrowsky <roeathome@...> wrote: ,you asked: > > Please explain the significance of the high titres for those viruses.Does it mean they had a bad case of the disease at some point , or that the immunizations they recieved may have caused some dammage?In this man's case, it is both of what you are saying. The titres from the strep most likely came from a case of strep being untreated because of inability to communicate pain and a very high tolerence for it. Therefore, the strep went systemic. A blood test was taken and the mas titres should be 180, but this man's titres came back 980.Regarding the measles titres, the only known exposure is the MMR vaccine. There has been studies done on individuals with autism that show that they have the vaccine strain of measles in their cerebral spinal fluid. This person has not had the test done, but one

thing is for sure... his body is harboring measles.I hope this is helpful.Roe> > MMS kills viruses ,bacteria ,fungus and assorted microbes. so it would cause a increase in health and wellbeing fom lack of these disease causing germs . Without those stresses , perhaps the body would be able to heal itself of other problems.> > IN NC Wilkins

http//:www.juiceplus.com/+lw55887

The Children's Research Foundation Children 6-15 FREE for 3 years

Be a better sports nut! Let your teams follow you with Mobile. Try it now.

Posted November 19, 2007 · November 19, 2007

Shalamee,

This is related to the Autism and MMS issue brought up here.As long

as the issue doest over power the MMS discussions, I do allow this

kind of information to be passed from member to member.

I will warn the members if I see the side discussions becoming too

copious.I use an open forum style administering of my groups. I think

people can govern themselves once they understand the groups intent.

IN NC

>

> Hi Eva-

>

> At the risk of appearing unfriendly or unkind...

> maybe it would be good for you to join a DMSO group for this

information?

>

> I really appreciate that this list is focused primarily on MMS.

Trimming y/our posts is greatly appreciated, as well. If I am the

only one who feels this way, I am open to hearing from you.

>

> Also, I am wishing you god(ess)-speed in discovering the answers to

your questions about DMSO.

> Reseting our cellular pattern and releasing genetic burdening is a

admirable endeavor, which I am personally deeply interested in... so

I support your interest. Please share with us your

discoveries...especially regarding your experiences using AMMS. Off-

list is great too. my e-mail is my name

>

> Thanks & Bright Blessings-

> Shalamee

>

> [ ] Re: New Member

>

> Has anyone tried DMSO for Autism, Aspergers and other specturms

of

> the disorder?

>

> From what I've read the DMSO will reset the genetic pattern in

the

> cells, sounds like it could really help.

> In Christ,

> Ava

>

> Recent Activity

> a.. 25New Members

> b.. 7New Polls

> c.. 1New Files

> Visit Your Group

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>

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>

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>

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Posted November 19, 2007 · November 19, 2007

On Nov 18, 2007, at 5:54 PM, Wilkins wrote:Please explain the significance of the high titres for those viruses.Does it mean they had a bad case of the disease at some point , or that the immunizations they recieved may have caused some dammage?********************************************************************** My 7-year old daughter is severely autistic and she also has high measles and other viral titers, which were definitely from live virus vaccines. She also has high mercury and aluminum, also from vaccines. As far as the strep titers, there is a condition called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep) that contributes greatly to many cases of autism, OCD, ADHD and others.

Posted June 1, 2008 · June 1, 2008

Carolyn,

What a positive attitude..Glad to hear you are doing so well.I

have heard the cost of treatment is extremely high but one can not

put a price tag on life.Sure hope my insurance covers my meds.Will

find out on Monday hopefully.Thanks for sharing your experience with

me..

SharonS

In , carolyn kuptz <carolyn_kuptz2000@...> wrote:

>

> Welcome Sharon,

> You will find that this group is a wealth of information. Even if

you are just feeling low, they will boost you up. I am taking

Sprycel, (dx 11-05) in a deep remission for over a year. Sprycel is

a very tiny pill easy to swallow and easy to drop and lose. I

learned never take over a sink as I dropped one down the drain and at

the extreme cost you don't want to do that. CML is not a death

sentence. There are so many things on the horizon and we now have

Gleevec and Sprycel that are miracle drugs. Thats now to say there

are not side effects but you adjust and keep on living. I give all

the praise to God. He walks with me daily.

> Carolyn

> dx 11-05

>

Posted June 2, 2008 · June 2, 2008

Your insurance should cover it if not I know the manufacturers will usually

help with the cost. CML as was mentioned is not a death sentence but you

will have some adjusting to do..Some are lucky and have little to no side

effects. Then some like me still have side effects, but they are controled

by other meds to make things bareable.

Terry

On Sun, Jun 1, 2008 at 1:08 PM, serenitywon <serenitywon@...> wrote:

> Carolyn,

> What a positive attitude..Glad to hear you are doing so well.I

> have heard the cost of treatment is extremely high but one can not

> put a price tag on life.Sure hope my insurance covers my meds.Will

> find out on Monday hopefully.Thanks for sharing your experience with

> me..

> SharonS

>

> In <%40>, carolyn kuptz

> <carolyn_kuptz2000@...> wrote:

> >

> > Welcome Sharon,

> > You will find that this group is a wealth of information. Even if

> you are just feeling low, they will boost you up. I am taking

> Sprycel, (dx 11-05) in a deep remission for over a year. Sprycel is

> a very tiny pill easy to swallow and easy to drop and lose. I

> learned never take over a sink as I dropped one down the drain and at

> the extreme cost you don't want to do that. CML is not a death

> sentence. There are so many things on the horizon and we now have

> Gleevec and Sprycel that are miracle drugs. Thats now to say there

> are not side effects but you adjust and keep on living. I give all

> the praise to God. He walks with me daily.

> > Carolyn

> > dx 11-05

> >

Posted June 28, 2008 · June 28, 2008

Carolyn,

Thanks for the kind and hopeful words, I'm beginning to realize that

this isn't a death sentence. Thanks,

Kathy

--- In , carolyn kuptz <carolyn_kuptz2000@...>

wrote:

>

> Dear Kathy,

> Welcome to our group. You will find this group of cml warriors a

wealth of information. What one has not experienced someone else has

and can be of encouragement to you. I was diagnosed in 05. How well

I remember the terrior of hearing the C word. My onocologist at that

time said I was so lucky to have cml as it is one of the controllable

cancers. We are on the cutting edge of new discoveries. With

Gleevec and Sprycel on the market now we can experience a long and

productive life. There will be ups and downs until the doctors get

the right meds and dosages for you There will be some side effects

but nothing like traditional chemo. Nothing that we can't live with

though at times it may get you down. Wait a day and the sun will be

shining and you will be smiling. God is so Good,

> Carolyn

> dx 11-05

> sprycel 20 mg bid

>

Posted June 28, 2008 · June 28, 2008

Kathy,

Welcome..I am also newly Dx.I am also realizing this isn't a death

sentence.Have no useful info to offer you as I am still learning how to

cope and the correct questions to ask my Dr.

Good luck

SharonS

In , " kathykormos " <kathykormos@...> wrote:

>

> Carolyn,

> Thanks for the kind and hopeful words, I'm beginning to realize that

> this isn't a death sentence. Thanks,

> Kathy

>

Posted July 12, 2008 · July 12, 2008

Oh God! I just read " Baldy's Blog " and you weren't kidding. I'm so glad you

posted, Barbara.

in San Francisco

From: Barbsm@...

Date: Sat, 12 Jul 2008 09:01:23 +0000

Subject: [ ] New member

Hello all, Ive finally made up my mind to post after a lot of

hesitation. I'd promised myself never to post again on CML support

groups after all the in fighting that went on in a couple of other groups.

Zavie has assured me that this group is above all that & is really

here for helping & supporting patients.

Let me introduce myself : Barbara meunier, 42 years old, mother of 3

children, aged 15, 11 & 8.

I found out that I had CML when I went to give blood 4 years ago.

Initial tests at a local laboratory said that I had 29% blasts & I was

told to prepare myself for a BMT, subsequent tests at hospital showed

me to be firmly in chronic phase.

July 1st was 4 years since I took my first Glivec pill. I am part of

the Spirit trial here in France, I was on the Glivec & Ara c arm, but

after 3 disastrous attempts with the Ara-c injections, my Dr said that

I was allergic to it & told me to stop taking it.

I got to CCR after 6 months & am number 805 in Zavie's Zero Club.

I have been PCR-U more or less continously since July 2006, just 2

minor positives in my PCRs, my Glivec concentration level is spot on

at 1000.

Just one little cloud on the horizon : some of my ph neg cells have

trisomy 8 - around 60% of them a couple of years ago, but this was

down to just 10% at my last BMT in Nov. 2007.

I can honestly say that having CML doesn't affect me in the slightest

- I'm one of the lucky ones with just minor side effects (nausea &

diarrhea from time to time); I have however put on 13kg since taking

glivec; I lead a very busy life with my 3 children, keeping the

papers for my husband's carpentry business, the parents teacher

association at my kids' school & am also a local councillor here in my

little french village since March of this year.

I am treated for my CML by Dr Franck Nicolini, a lovely & caring man,

he spoke at last years UK CML meeting & is one of the leading european

experts on CML, he's always available for advice & help, even to

patients from other countries.

Well I'll close for now, I think that about sums things up. I am fully

aware of how lucky I am to be one of those who tolerate & responds

well to Glivec,

best wishes to everyone,

Barbara

PS I have been following a lot of CML blogs for a long time now, but

the one that touches me the most is the one kept by a british man

called Sudbury - type " Baldy's Blog " into your search motor &

you'll see what I mean.

_________________________________________________________________

It’s a talkathon – but it’s not just talk.

http://www.imtalkathon.com/?source=EML_WLH_Talkathon_JustTalk

Posted July 12, 2008 · July 12, 2008

Hi Barbara, I remember you from " another " site, it is so good to hear from you

again. Zavie is so right, this is not a petty, bickring, fault finding site.

Everyone welcomed me and Lottie with open arms, and we both love it here.

Welcome, and best wishes, Bobby Doyle

Barbara Meunier <Barbsm@...> wrote: Hello all, Ive finally made

up my mind to post after a lot of

hesitation. I'd promised myself never to post again on CML support

groups after all the in fighting that went on in a couple of other groups.

Zavie has assured me that this group is above all that & is really

here for helping & supporting patients.

Let me introduce myself : Barbara meunier, 42 years old, mother of 3

children, aged 15, 11 & 8.

I found out that I had CML when I went to give blood 4 years ago.

Initial tests at a local laboratory said that I had 29% blasts & I was

told to prepare myself for a BMT, subsequent tests at hospital showed

me to be firmly in chronic phase.

July 1st was 4 years since I took my first Glivec pill. I am part of

the Spirit trial here in France, I was on the Glivec & Ara c arm, but

after 3 disastrous attempts with the Ara-c injections, my Dr said that

I was allergic to it & told me to stop taking it.

I got to CCR after 6 months & am number 805 in Zavie's Zero Club.

I have been PCR-U more or less continously since July 2006, just 2

minor positives in my PCRs, my Glivec concentration level is spot on

at 1000.

Just one little cloud on the horizon : some of my ph neg cells have

trisomy 8 - around 60% of them a couple of years ago, but this was

down to just 10% at my last BMT in Nov. 2007.

I can honestly say that having CML doesn't affect me in the slightest

- I'm one of the lucky ones with just minor side effects (nausea &

diarrhea from time to time); I have however put on 13kg since taking

glivec; I lead a very busy life with my 3 children, keeping the

papers for my husband's carpentry business, the parents teacher

association at my kids' school & am also a local councillor here in my

little french village since March of this year.

I am treated for my CML by Dr Franck Nicolini, a lovely & caring man,

he spoke at last years UK CML meeting & is one of the leading european

experts on CML, he's always available for advice & help, even to

patients from other countries.

Well I'll close for now, I think that about sums things up. I am fully

aware of how lucky I am to be one of those who tolerate & responds

well to Glivec,

best wishes to everyone,

Barbara

PS I have been following a lot of CML blogs for a long time now, but

the one that touches me the most is the one kept by a british man

called Sudbury - type " Baldy's Blog " into your search motor &

you'll see what I mean.

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

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

#840 - Zavie's Zero Club

09/2006 - out of CCR

04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

Posted July 12, 2008 · July 12, 2008

Hi Barbara,

Welcome to the group and thanks so much for sharing your story.

It's so important for newbies to hear sucess stories like yours. I

think it's somewhat natural for people who are doing well, to post

less but unfortunately this tends to create a bit of a lop sided

appearance for newbies who see more posts about people having

problems than people who are living fantastic, productive lives.

Your post helped tip the balance so thank you for that.

Tracey

dx Jan 2002

>

> Hello all, Ive finally made up my mind to post after a lot of

> hesitation. I'd promised myself never to post again on CML support

> groups after all the in fighting that went on in a couple of other

groups.

> Zavie has assured me that this group is above all that & is really

> here for helping & supporting patients.

> Let me introduce myself : Barbara meunier, 42 years old, mother of

3

> children, aged 15, 11 & 8.

> I found out that I had CML when I went to give blood 4 years ago.

> Initial tests at a local laboratory said that I had 29% blasts & I

was

> told to prepare myself for a BMT, subsequent tests at hospital

showed

> me to be firmly in chronic phase.

> July 1st was 4 years since I took my first Glivec pill. I am part

of

> the Spirit trial here in France, I was on the Glivec & Ara c arm,

but

> after 3 disastrous attempts with the Ara-c injections, my Dr said

that

> I was allergic to it & told me to stop taking it.

> I got to CCR after 6 months & am number 805 in Zavie's Zero Club.

> I have been PCR-U more or less continously since July 2006, just 2

> minor positives in my PCRs, my Glivec concentration level is spot

on

> at 1000.

> Just one little cloud on the horizon : some of my ph neg cells have

> trisomy 8 - around 60% of them a couple of years ago, but this was

> down to just 10% at my last BMT in Nov. 2007.

> I can honestly say that having CML doesn't affect me in the

slightest

> - I'm one of the lucky ones with just minor side effects (nausea &

> diarrhea from time to time); I have however put on 13kg since

taking

> glivec; I lead a very busy life with my 3 children, keeping the

> papers for my husband's carpentry business, the parents teacher

> association at my kids' school & am also a local councillor here

in my

> little french village since March of this year.

> I am treated for my CML by Dr Franck Nicolini, a lovely & caring

man,

> he spoke at last years UK CML meeting & is one of the leading

european

> experts on CML, he's always available for advice & help, even to

> patients from other countries.

> Well I'll close for now, I think that about sums things up. I am

fully

> aware of how lucky I am to be one of those who tolerate & responds

> well to Glivec,

> best wishes to everyone,

> Barbara

> PS I have been following a lot of CML blogs for a long time now,

but

> the one that touches me the most is the one kept by a british man

> called Sudbury - type " Baldy's Blog " into your search motor

&

> you'll see what I mean.

>

Posted July 12, 2008 · July 12, 2008

Hi Barbara,

I too remember you from the other site. Welcome.

I was Dx inJuly of 2004 also and I am number 878 in Zavies club.

You are very fortunate to be doing so well. I too am doing well but I have

been through gleevec, sprycell and now on Tasigna. I have no symptoms on

Tasigna but lost complete PCRU and had to increase my dosage. We will see

how I am doing in another month.

Welcome..this is a wonderful site.

How do you get to that blog. I am not that up on computer stuff and would

love to read it.

Alohn

Sharon T

_____

From: [mailto: ] On Behalf Of

Barbara Meunier

Sent: Saturday, July 12, 2008 2:01 AM

Subject: [ ] New member

Hello all, Ive finally made up my mind to post after a lot of

hesitation. I'd promised myself never to post again on CML support

groups after all the in fighting that went on in a couple of other groups.

Zavie has assured me that this group is above all that & is really

here for helping & supporting patients.

Let me introduce myself : Barbara meunier, 42 years old, mother of 3

children, aged 15, 11 & 8.

I found out that I had CML when I went to give blood 4 years ago.

Initial tests at a local laboratory said that I had 29% blasts & I was

told to prepare myself for a BMT, subsequent tests at hospital showed

me to be firmly in chronic phase.

July 1st was 4 years since I took my first Glivec pill. I am part of

the Spirit trial here in France, I was on the Glivec & Ara c arm, but

after 3 disastrous attempts with the Ara-c injections, my Dr said that

I was allergic to it & told me to stop taking it.

I got to CCR after 6 months & am number 805 in Zavie's Zero Club.

I have been PCR-U more or less continously since July 2006, just 2

minor positives in my PCRs, my Glivec concentration level is spot on

at 1000.

Just one little cloud on the horizon : some of my ph neg cells have

trisomy 8 - around 60% of them a couple of years ago, but this was

down to just 10% at my last BMT in Nov. 2007.

I can honestly say that having CML doesn't affect me in the slightest

- I'm one of the lucky ones with just minor side effects (nausea &

diarrhea from time to time); I have however put on 13kg since taking

glivec; I lead a very busy life with my 3 children, keeping the

papers for my husband's carpentry business, the parents teacher

association at my kids' school & am also a local councillor here in my

little french village since March of this year.

I am treated for my CML by Dr Franck Nicolini, a lovely & caring man,

he spoke at last years UK CML meeting & is one of the leading european

experts on CML, he's always available for advice & help, even to

patients from other countries.

Well I'll close for now, I think that about sums things up. I am fully

aware of how lucky I am to be one of those who tolerate & responds

well to Glivec,

best wishes to everyone,

Barbara

PS I have been following a lot of CML blogs for a long time now, but

the one that touches me the most is the one kept by a british man

called Sudbury - type " Baldy's Blog " into your search motor &

you'll see what I mean.

Posted July 13, 2008 · July 13, 2008

Good Morning Barbara

you maybe a new member of the group but not a new member of CML

Four years - and going well

you can teach us all a thing or three of having a great life while on CML and

glivec

13kgs on glivec - sounds about most of us have put on -

10 kilos which is just over 22 Lbs I think (9 stone 12 lbs)

Lost alot from my emergency operation (and now weight increased to 8 1/2 stone)

trying to keep it off

Barbara join the CML Weight Loss group - we are good support to each other -

while eating yummies

and chatting about family and friends and not necessarily CML .

Would you explain what trisomy 8 is in your ph neg cells

Yes I have on other chat groups too!! and the simplest statements from people

caused big hoo haa s

This is a more relaxed group of people so welcome

Sue

Posted July 13, 2008 · July 13, 2008

Oh I forgot I am Number 1095 on Zavies Club or was it 1097

Doesn't matter - Zavie gave me such a YIPPEE and a number

as I was waiting for someone to come home to share my news that it was really

like having a kiss and hug from one of my family.

I will always remember that event for Zavie making my 0.001% such a memorable

day - so you see Barbara this group is full of good intent

Sue

Posted July 15, 2008 · July 15, 2008

Thanks to all of you who took the time to reply to my message.

I didn't know that their was a CML weight loss group - is it a

one? I really do need to be a member - I tipped 70kg this weekend on

my scales - it's not that long since I got worked up about passing the

65Kg mark!!!

I mentioned that I had trisomy 8 in some of my negatives cells - this

is when the caryotype shows up an extra copy of chromosome 8 in some

of the cells they test. These cells do not show the philadelphia

translocation so they are called ph neg cells, Drs don't really know

whether T8 means a worse prognosis, they just monitor patients with

this anomaly more closely. Often these abnormalities disappear with

time - mine were at 62% & last time they were just 10%, with a bit of

luck they'll be gone next time. I hope that this is clear.

The address of 's blog is " baldyblog.freshblogs.co.uk/ "

he certainly need support right now & it's his birthday tomorrow,

best wishes to all,

Barbara-- In , " Sue " <hollie@...> wrote:

>

> Good Morning Barbara

>

> you maybe a new member of the group but not a new member of CML

>

> Four years - and going well

>

> you can teach us all a thing or three of having a great life while

on CML and glivec

>

> 13kgs on glivec - sounds about most of us have put on -

>

> 10 kilos which is just over 22 Lbs I think (9 stone 12 lbs)

>

> Lost alot from my emergency operation (and now weight increased to 8

1/2 stone) trying to keep it off

>

> Barbara join the CML Weight Loss group - we are good support to each

other - while eating yummies

> and chatting about family and friends and not necessarily CML .

>

> Would you explain what trisomy 8 is in your ph neg cells

>

> Yes I have on other chat groups too!! and the simplest statements

from people caused big hoo haa s

>

> This is a more relaxed group of people so welcome

>

> Sue

>

Posted July 31, 2008 · July 31, 2008

Hi Sue,

It's 1197.

Enjoy,

Zavie

>

> Oh I forgot I am Number 1095 on Zavies Club or was it 1097

>

> Doesn't matter - Zavie gave me such a YIPPEE and a number

> as I was waiting for someone to come home to share my news that it

was really

> like having a kiss and hug from one of my family.

>

> I will always remember that event for Zavie making my 0.001% such

a memorable day - so you see Barbara this group is full of good

intent

>

> Sue

>

Posted July 31, 2008 · July 31, 2008

Bonjour Barbara,

Welcome to the group. Another French here, although I am in the US.

Pretty much the same than you, 41, dx 3 1/2 years ago, doing good. I

see drs here in California and in Paris at hospital Saint-Louis. My

weight problem would be the other way, I got most of my weight back (I

had lost about 20kg), but 5 more kilos would be nice to look good for

the ladies :-)

Cheers,

Marcos.

On Sat, Jul 12, 2008 at 2:01 AM, Barbara Meunier <Barbsm@...> wrote:

> Hello all, Ive finally made up my mind to post after a lot of

> hesitation. I'd promised myself never to post again on CML support

> groups after all the in fighting that went on in a couple of other groups.

> Zavie has assured me that this group is above all that & is really

> here for helping & supporting patients.

> Let me introduce myself : Barbara meunier, 42 years old, mother of 3

> children, aged 15, 11 & 8.

> I found out that I had CML when I went to give blood 4 years ago.

> Initial tests at a local laboratory said that I had 29% blasts & I was

> told to prepare myself for a BMT, subsequent tests at hospital showed

> me to be firmly in chronic phase.

> July 1st was 4 years since I took my first Glivec pill. I am part of

> the Spirit trial here in France, I was on the Glivec & Ara c arm, but

> after 3 disastrous attempts with the Ara-c injections, my Dr said that

> I was allergic to it & told me to stop taking it.

> I got to CCR after 6 months & am number 805 in Zavie's Zero Club.

> I have been PCR-U more or less continously since July 2006, just 2

> minor positives in my PCRs, my Glivec concentration level is spot on

> at 1000.

> Just one little cloud on the horizon : some of my ph neg cells have

> trisomy 8 - around 60% of them a couple of years ago, but this was

> down to just 10% at my last BMT in Nov. 2007.

> I can honestly say that having CML doesn't affect me in the slightest

> - I'm one of the lucky ones with just minor side effects (nausea &

> diarrhea from time to time); I have however put on 13kg since taking

> glivec; I lead a very busy life with my 3 children, keeping the

> papers for my husband's carpentry business, the parents teacher

> association at my kids' school & am also a local councillor here in my

> little french village since March of this year.

> I am treated for my CML by Dr Franck Nicolini, a lovely & caring man,

> he spoke at last years UK CML meeting & is one of the leading european

> experts on CML, he's always available for advice & help, even to

> patients from other countries.

> Well I'll close for now, I think that about sums things up. I am fully

> aware of how lucky I am to be one of those who tolerate & responds

> well to Glivec,

> best wishes to everyone,

> Barbara

> PS I have been following a lot of CML blogs for a long time now, but

> the one that touches me the most is the one kept by a british man

> called Sudbury - type " Baldy's Blog " into your search motor &

> you'll see what I mean.

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 630 5015 (cell)

marcospg@...

montereyunderwater@...

www.stanford.edu/~marcospg/

Posted August 1, 2008 · August 1, 2008

Hi Barbara,

I'm catching up on old emails and what a wonderful surprise to see your

post.

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