Re: Dilemma

[Guest guest]

I think she just needs to educate herself, but you can't force her to.

My MIL kept saying, " well, I just don't see what the big deal is " .

She went on and on about how my doc was overreacting...yada yada.

Well, my BIL is an oral surgeon and he is on a board that deals

specifically with this issue because of TMJ and other jaw problems.

When she was blabbering/gossiping that we were overreacting, he jumped

in and asked what she was talking about. When she said, " sorca wants

to get a special band because he has a flat spot behind his

ear " he told her the whole slew of medical issues that can arise from

not correcting this problem. He also told her the window of

opportunity to do it was small. She immediately changed her opinion

and now she keeps asking us... " When are you going to get this band. I

wouldn't wait too long if I were you " . Only YOU know what is best for

your little boy and obviously you care about him the most!!!

> I know this will only be the beginning of dealing with this issue but

> wanted to see what others did to educate people and deal with

> unsolicited advise/comments.

>

> This past weekend the neighbors got together with all the kids. I am

> a first time Mom and like all first timers, we want our children to

> be perfect and probably over-react to the littlest things. Well all f

> the neighbors have commented that they don't see what is wrong with

> his head -- which looks fine when you look at the two halfs

> separately, put together you can see the plagio and asymmetry.

>

> Well one of the ladies basically said to me, and another agreed, you

> can't tell. Doctors say they only need 30 minutes of tummy time a

> day. The head would round out. And the hair will cover it. If it were

> me, I wouldn't do it. Well, that is not exactly what I wanted to

> hear. As you all know, we struggle with making this decision -- the

> guilt that we did something wrong, to band or not to band, etc. I am

> having a dilemma as to whehter or not to bother to tell her that the

> things she said hurt my feelings or just let it pass. And if I do,

> what do I say. We are pretty good friends and I am the type of person

> that if I don't agree with how you are raising your child, and you

> don't ask my opinion, I am not going to give it. She was trying to

> sound like she was educated on the topic, whereas I have spent hours

> pouring over everything I can find out bands, plagio, and

> repositioning.

>

> It just really hurt and it has been bothering me for so many reasons.

> Obviously, I would not expect a friend to basically tell me I was

> doing the wrong thing and that I was just being vain about his head

> (18mm of asymmetry). Second, that I haven't even gotten the helmet

> yet and I am already having to deal with this. How bad is it going to

> be when he has it?

>

> Penny

> mom to Jack -- 16 weeks

[Guest guest]

Hi Penny,

Sounds to me like she's simply uneducated on the subject. My

suggestion would be to make her educated on it and be confident with

your decision. Your son's measurements make him a severe case of

plagio and even the AAP recommends banding in that case ASAP. Tell

her about the possible side effects of untreated plagio (TMJ,

migraines, ear infections are ones that many doctors suspect) as

well as the comsmetic effects. With that type of asymmetry he'd

probably have difficulty wearing sunglasses and sports helmets. A

case that severe will not round out--if he's got that much flatness

it will be near impossible for him to rest his head any way but on

that spot (think of trying to place a bowl on its rounded side

insted of on it's flat bottom), therefore potentially making it

worse. Has he been evaluated for tort? Maybe she actually doesn't

see the asymmetry, and if you really want her to be able to see it

so she understands better, try showing her pictures instead. Not

everyone has " the eye " for it and putting him in front of a mirror

or looking at a picture of the top of his head will make it easier

to see. My daughter has lots of pictures of her head on her website

that you can show her if you don't have any (she was banded at 20mm,

so pretty similar number). When my Hannah was banded I created some

informational sheets for parents who asked me about it and wanted

more information. I found these to be very helpful. You can see

hers on her website below.

, mom to Hannah, DOCgrad

Cape Cod, Ma

http://hannahsnoggin.typepad.com

--- In Plagiocephaly , " pennylac " <pennylac@y...>

wrote:

> I know this will only be the beginning of dealing with this issue

but

> wanted to see what others did to educate people and deal with

> unsolicited advise/comments.

>

> This past weekend the neighbors got together with all the kids. I

am

> a first time Mom and like all first timers, we want our children

to

> be perfect and probably over-react to the littlest things. Well

all f

> the neighbors have commented that they don't see what is wrong

with

> his head -- which looks fine when you look at the two halfs

> separately, put together you can see the plagio and asymmetry.

>

> Well one of the ladies basically said to me, and another agreed,

you

> can't tell. Doctors say they only need 30 minutes of tummy time a

> day. The head would round out. And the hair will cover it. If it

were

> me, I wouldn't do it. Well, that is not exactly what I wanted to

> hear. As you all know, we struggle with making this decision --

the

> guilt that we did something wrong, to band or not to band, etc. I

am

> having a dilemma as to whehter or not to bother to tell her that

the

> things she said hurt my feelings or just let it pass. And if I do,

> what do I say. We are pretty good friends and I am the type of

person

> that if I don't agree with how you are raising your child, and you

> don't ask my opinion, I am not going to give it. She was trying to

> sound like she was educated on the topic, whereas I have spent

hours

> pouring over everything I can find out bands, plagio, and

> repositioning.

>

> It just really hurt and it has been bothering me for so many

reasons.

> Obviously, I would not expect a friend to basically tell me I was

> doing the wrong thing and that I was just being vain about his

head

> (18mm of asymmetry). Second, that I haven't even gotten the helmet

> yet and I am already having to deal with this. How bad is it going

to

> be when he has it?

>

> Penny

> mom to Jack -- 16 weeks

[Guest guest]

Hi there

I also worried enormously what the 'mommy mafia' would say about my

little one in the helmet, and I found beforehand that plenty of mums

did try to reassure me that you could hardly notice and that it was

no big deal. After I got the helmet for my daughter, the same people

said they really thought that it was a good idea and they would have

done exactly the same. I suspect your friend is trying to reassure

you that your little one is wonderful and perfect and no-one will

notice and perhaps to her it is no big deal. But if it is your child

you feel quite differently and I suspect she doesn't actually know

how she would react if it was- it's all very well to say I wouldn't

bother when it is not your child but I suspect the reality might be

quite different.

Go right ahead and don't worry about what your friend or other mum's

think. It won't be the first time you do things differently as

parents and I suspect she was only trying to make you feel better

(she could hardly gasp and go 'on my goodness I'd get a helmet

tomorrow' could she?). People who are a bit reluctant at the sound

of a helmet usually come around when they see the drastic difference

it makes for your child- so have the courage of your convictions,

your child is lucky to have you for a mum.

Hannah (mum to Lucia, London, UK)

Cranio grad

--- In Plagiocephaly , " pennylac " <pennylac@y...>

wrote:

> I know this will only be the beginning of dealing with this issue

but

> wanted to see what others did to educate people and deal with

> unsolicited advise/comments.

>

> This past weekend the neighbors got together with all the kids. I

am

> a first time Mom and like all first timers, we want our children

to

> be perfect and probably over-react to the littlest things. Well

all f

> the neighbors have commented that they don't see what is wrong

with

> his head -- which looks fine when you look at the two halfs

> separately, put together you can see the plagio and asymmetry.

>

> Well one of the ladies basically said to me, and another agreed,

you

> can't tell. Doctors say they only need 30 minutes of tummy time a

> day. The head would round out. And the hair will cover it. If it

were

> me, I wouldn't do it. Well, that is not exactly what I wanted to

> hear. As you all know, we struggle with making this decision --

the

> guilt that we did something wrong, to band or not to band, etc. I

am

> having a dilemma as to whehter or not to bother to tell her that

the

> things she said hurt my feelings or just let it pass. And if I do,

> what do I say. We are pretty good friends and I am the type of

person

> that if I don't agree with how you are raising your child, and you

> don't ask my opinion, I am not going to give it. She was trying to

> sound like she was educated on the topic, whereas I have spent

hours

> pouring over everything I can find out bands, plagio, and

> repositioning.

>

> It just really hurt and it has been bothering me for so many

reasons.

> Obviously, I would not expect a friend to basically tell me I was

> doing the wrong thing and that I was just being vain about his

head

> (18mm of asymmetry). Second, that I haven't even gotten the helmet

> yet and I am already having to deal with this. How bad is it going

to

> be when he has it?

>

> Penny

> mom to Jack -- 16 weeks

[Guest guest]

I think the others gave you excellent advice! I support you 100%. I

hope you feel better about things and have decided whether or not to

mention it to her or not. Take care.

Sue

Colin F., 19 mos.

STARband grad for brachy

Buffalo, NY

--- In Plagiocephaly , " pennylac " <pennylac@y...>

wrote:

> I know this will only be the beginning of dealing with this issue

but

> wanted to see what others did to educate people and deal with

> unsolicited advise/comments.

>

> This past weekend the neighbors got together with all the kids. I

am

> a first time Mom and like all first timers, we want our children to

> be perfect and probably over-react to the littlest things. Well all

f

> the neighbors have commented that they don't see what is wrong with

> his head -- which looks fine when you look at the two halfs

> separately, put together you can see the plagio and asymmetry.

>

> Well one of the ladies basically said to me, and another agreed,

you

> can't tell. Doctors say they only need 30 minutes of tummy time a

> day. The head would round out. And the hair will cover it. If it

were

> me, I wouldn't do it. Well, that is not exactly what I wanted to

> hear. As you all know, we struggle with making this decision -- the

> guilt that we did something wrong, to band or not to band, etc. I

am

> having a dilemma as to whehter or not to bother to tell her that

the

> things she said hurt my feelings or just let it pass. And if I do,

> what do I say. We are pretty good friends and I am the type of

person

> that if I don't agree with how you are raising your child, and you

> don't ask my opinion, I am not going to give it. She was trying to

> sound like she was educated on the topic, whereas I have spent

hours

> pouring over everything I can find out bands, plagio, and

> repositioning.

>

> It just really hurt and it has been bothering me for so many

reasons.

> Obviously, I would not expect a friend to basically tell me I was

> doing the wrong thing and that I was just being vain about his head

> (18mm of asymmetry). Second, that I haven't even gotten the helmet

> yet and I am already having to deal with this. How bad is it going

to

> be when he has it?

>

> Penny

> mom to Jack -- 16 weeks

[Guest guest]

Penny,

You might just send her a polite e-mail, saying I think you should

read some of the research I have done in making this decision, and

explain that it will probably not round on it's own if it hasn't

started to already.Tell her how hard it was to make this decision and

how uneducated the public is on it, and the consequences from

untreated plagio that were not known until recently. Explain that you

and your doctors made a medical decision that this was a case to

treat with a band. Explain in a calm friendly manner that what she

did hurt you as you regard her as a good friend and were really

hoping for her support. This should make her understand that what she

did was wrong while preserving the friendship. Also take a look at

her kids heads, sometimes you get that kind of response from a mom

that didn't know about it and they have a child whose head is still

misshaped. In that case you just have to understand that's what she

has to do to make herself feel better. Hope this helps,

CAROLG

--- In Plagiocephaly , " pennylac " <pennylac@y...>

wrote:

> I know this will only be the beginning of dealing with this issue

but

> wanted to see what others did to educate people and deal with

> unsolicited advise/comments.

>

> This past weekend the neighbors got together with all the kids. I

am

> a first time Mom and like all first timers, we want our children to

> be perfect and probably over-react to the littlest things. Well all

f

> the neighbors have commented that they don't see what is wrong with

> his head -- which looks fine when you look at the two halfs

> separately, put together you can see the plagio and asymmetry.

>

> Well one of the ladies basically said to me, and another agreed,

you

> can't tell. Doctors say they only need 30 minutes of tummy time a

> day. The head would round out. And the hair will cover it. If it

were

> me, I wouldn't do it. Well, that is not exactly what I wanted to

> hear. As you all know, we struggle with making this decision -- the

> guilt that we did something wrong, to band or not to band, etc. I

am

> having a dilemma as to whehter or not to bother to tell her that

the

> things she said hurt my feelings or just let it pass. And if I do,

> what do I say. We are pretty good friends and I am the type of

person

> that if I don't agree with how you are raising your child, and you

> don't ask my opinion, I am not going to give it. She was trying to

> sound like she was educated on the topic, whereas I have spent

hours

> pouring over everything I can find out bands, plagio, and

> repositioning.

>

> It just really hurt and it has been bothering me for so many

reasons.

> Obviously, I would not expect a friend to basically tell me I was

> doing the wrong thing and that I was just being vain about his head

> (18mm of asymmetry). Second, that I haven't even gotten the helmet

> yet and I am already having to deal with this. How bad is it going

to

> be when he has it?

>

> Penny

> mom to Jack -- 16 weeks

[Guest guest]

Isn't is great to have one more thing to deal with? There are some

people, even some in my family, that don't think my daughter's plagio

is that bad. Well, in taking her to the neuro, she is severe. I

don't have any doubts about getting her banded. (we are waiting for

an appt.) I am still worried about other's reactions to my baby is a

helmet, but I feel that I am doing the right thing. Good Luck!

Jill

[Guest guest]

Isn't is great to have one more thing to deal with? There are some

people, even some in my family, that don't think my daughter's plagio

is that bad. Well, in taking her to the neuro, she is severe. I

don't have any doubts about getting her banded. (we are waiting for

an appt.) I am still worried about other's reactions to my baby is a

helmet, but I feel that I am doing the right thing. Good Luck!

Jill

[Guest guest]

You are doing the right thing. If you don't helmet, 4 years from now you will be getting comments from those same family members questioning why your daughter's head is so flat... That's what I am dealing with now. (We didn't know about helmets as an option.) I expect some of them think I was a bad mom to not have done anything... grrrr - dealing with that regardless of their comments! But we can only do the best we can with the info we are given at the time...

Mom to athan 3yo unresolved plagio

Mom to 5mo - round head )

Charalet

Re: Dilemma

Isn't is great to have one more thing to deal with? There are some people, even some in my family, that don't think my daughter's plagio is that bad. Well, in taking her to the neuro, she is severe. I don't have any doubts about getting her banded. (we are waiting for an appt.) I am still worried about other's reactions to my baby is a helmet, but I feel that I am doing the right thing. Good Luck!JillFor more plagio info

[Guest guest]

You are doing the right thing. If you don't helmet, 4 years from now you will be getting comments from those same family members questioning why your daughter's head is so flat... That's what I am dealing with now. (We didn't know about helmets as an option.) I expect some of them think I was a bad mom to not have done anything... grrrr - dealing with that regardless of their comments! But we can only do the best we can with the info we are given at the time...

Mom to athan 3yo unresolved plagio

Mom to 5mo - round head )

Charalet

Re: Dilemma

Isn't is great to have one more thing to deal with? There are some people, even some in my family, that don't think my daughter's plagio is that bad. Well, in taking her to the neuro, she is severe. I don't have any doubts about getting her banded. (we are waiting for an appt.) I am still worried about other's reactions to my baby is a helmet, but I feel that I am doing the right thing. Good Luck!JillFor more plagio info

[Guest guest]

My main piece of advice would be to have her visit the " Untreated

Positional Plagiocephaly " board on . That was what finally

pushed me to get the band. It is a site for mothers whose chidlren

have plagiocephaly but were never treated and now they are too old

for many things to work. There she will see pictures of children

who are all the way up to about 10 years old with very misshapen

heads. These mothers were all given the same advice of " it will

round out on its own as they get older " and unfortunately they

trusted them and there is not much that can be done now.

I dont' think that any mother WANTS her child to have a helmet and I

know from personal experience that it is very easy to be in " denial "

about whether it will get better on its own. It's very easy to

listen to the doctors when they tell you it will get better because

you DON'T WANT them to have to get a helmet, and you WANT it to get

better on its own.

Sara

mom to Austin, 9 months, STARband 10-03-06

Michigan

>

> I know this will only be the beginning of dealing with this issue

but

> wanted to see what others did to educate people and deal with

> unsolicited advise/comments.

>

> This past weekend the neighbors got together with all the kids. I

am

> a first time Mom and like all first timers, we want our children

to

> be perfect and probably over-react to the littlest things. Well

all f

> the neighbors have commented that they don't see what is wrong

with

> his head -- which looks fine when you look at the two halfs

> separately, put together you can see the plagio and asymmetry.

>

> Well one of the ladies basically said to me, and another agreed,

you

> can't tell. Doctors say they only need 30 minutes of tummy time a

> day. The head would round out. And the hair will cover it. If it

were

> me, I wouldn't do it. Well, that is not exactly what I wanted to

> hear. As you all know, we struggle with making this decision --

the

> guilt that we did something wrong, to band or not to band, etc. I

am

> having a dilemma as to whehter or not to bother to tell her that

the

> things she said hurt my feelings or just let it pass. And if I do,

> what do I say. We are pretty good friends and I am the type of

person

> that if I don't agree with how you are raising your child, and you

> don't ask my opinion, I am not going to give it. She was trying to

> sound like she was educated on the topic, whereas I have spent

hours

> pouring over everything I can find out bands, plagio, and

> repositioning.

>

> It just really hurt and it has been bothering me for so many

reasons.

> Obviously, I would not expect a friend to basically tell me I was

> doing the wrong thing and that I was just being vain about his

head

> (18mm of asymmetry). Second, that I haven't even gotten the helmet

> yet and I am already having to deal with this. How bad is it going

to

> be when he has it?

>

> Penny

> mom to Jack -- 16 weeks

>

[Guest guest]

I say If it ain't broke don't fix it. I'm on 600 G but would not change unless I

had to .It has taken me 4 years to get used to the golden,I now sorta live with

it.

________________________________

From: Barbara Meunier <Barbsm@...>

Sent: Tuesday, June 16, 2009 7:05:40 AM

Subject: [ ] Dilemma

Hi all,

I received a mail from my dr yesterday telling me about how good Nilotinib is &

saying that it should replace Glivec as firstline therapy within a couple of

years.

He'll soon be starting up a trial for patients like me who are CCR or MMR which

involves 2 random arms - Glivec 400mg Vs Nilotinib 400 mg X 2 / day.

He said that I could take part if I wanted to.

I really don't know what to think - I've been PCR-U for the past 3 years on

Glivec with just the odd slight PCR positive.

I don't have too many side effects from Glivec apart from severe diarrhea at

times & my extra 13kgs.

Nilotinib could get rid of my extra kilos & diarrhea, but it could cause other

health problems eg; hear, pancreas & low counts.

I think believe that it has to be taken take it away from food aswell.

Glivec has got me to a very good remisssion, but who know whether this will

last.

Half of me's tempted to go with the trial, the other says leave things as they

are & keep my options open (I could always take my Nilotinib if I started

showing signs of relpase on Glivec.

would be grateful for you views on this - thanks,

Barbara

[Guest guest]

Hi Barbara, this is my humble opinion:  " If it ain't broke, don't fix it! "

I don't believe I have heard anything is better than Gleevec, especially if it

working for you with minimal side effects.

I would not switch unless I had proof Gleevec was NOT working. I don't think

anything's better than PCRU for 3 years!  I haven't reached it in 14 years and

I've been on almost all of the drugs. 

If I were you, I would give my doctor a hug and a kiss and say, no thanks, I

think I'll stay where I know I'm safe, and keep the other drugs tucked away ,

hopefully not to ever be needed.  Blessings, Bobby

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)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

 

From: Barbara Meunier <Barbsm@...>

Subject: [ ] Dilemma

Date: Tuesday, June 16, 2009, 8:05 AM

Hi all,

I received a mail from my dr yesterday telling me about how good Nilotinib is &

saying that it should replace Glivec as firstline therapy within a couple of

years.

He'll soon be starting up a trial for patients like me who are CCR or MMR which

involves 2 random arms - Glivec 400mg Vs Nilotinib 400 mg X 2 / day.

He said that I could take part if I wanted to.

I really don't know what to think - I've been PCR-U for the past 3 years on

Glivec with just the odd slight PCR positive.

I don't have too many side effects from Glivec apart from severe diarrhea at

times & my extra 13kgs.

Nilotinib could get rid of my extra kilos & diarrhea, but it could cause other

health problems eg; hear, pancreas & low counts.

I think believe that it has to be taken take it away from food aswell.

Glivec has got me to a very good remisssion, but who know whether this will

last.

Half of me's tempted to go with the trial, the other says leave things as they

are & keep my options open (I could always take my Nilotinib if I started

showing signs of relpase on Glivec.

would be grateful for you views on this - thanks,

Barbara

[Guest guest]

Can't eat for an hour before or two hours after eating, and must be taken twice

a day. Get an EKG at the get-go and regularly (not defined) from then on ...

It's both scary and very tempting at the same time! I'm hearing people say they

are no longer plagued with fatigue/exhaustion, which was the bane of my

existence on Gleevec. I start Sprycel this week, and who knows? May be onto

Tasigna soon after all depending on how this one works out ...

From: Barbsm@...

Date: Tue, 16 Jun 2009 12:05:40 +0000

Subject: [ ] Dilemma

Hi all,

I received a mail from my dr yesterday telling me about how good Nilotinib is &

saying that it should replace Glivec as firstline therapy within a couple of

years.

He'll soon be starting up a trial for patients like me who are CCR or MMR which

involves 2 random arms - Glivec 400mg Vs Nilotinib 400 mg X 2 / day.

He said that I could take part if I wanted to.

I really don't know what to think - I've been PCR-U for the past 3 years on

Glivec with just the odd slight PCR positive.

I don't have too many side effects from Glivec apart from severe diarrhea at

times & my extra 13kgs.

Nilotinib could get rid of my extra kilos & diarrhea, but it could cause other

health problems eg; hear, pancreas & low counts.

I think believe that it has to be taken take it away from food aswell.

Glivec has got me to a very good remisssion, but who know whether this will

last.

Half of me's tempted to go with the trial, the other says leave things as they

are & keep my options open (I could always take my Nilotinib if I started

showing signs of relpase on Glivec.

would be grateful for you views on this - thanks,

Barbara

_________________________________________________________________

Insert movie times and more without leaving Hotmail®.

http://windowslive.com/Tutorial/Hotmail/QuickAdd?ocid=TXT_TAGLM_WL_HM_Tutorial_Q\

uickAdd_062009

[Guest guest]

I would have to agree that if Gleevec isn't causing untenable side effects and

you haven't developed an immunity to it, why switch?

From: rcd1929@...

Date: Tue, 16 Jun 2009 05:51:44 -0700

Subject: Re: [ ] Dilemma

Hi Barbara, this is my humble opinion: " If it ain't broke, don't fix it! "

I don't believe I have heard anything is better than Gleevec, especially if it

working for you with minimal side effects.

I would not switch unless I had proof Gleevec was NOT working. I don't think

anything's better than PCRU for 3 years! I haven't reached it in 14 years and

I've been on almost all of the drugs.

If I were you, I would give my doctor a hug and a kiss and say, no thanks, I

think I'll stay where I know I'm safe, and keep the other drugs tucked away ,

hopefully not to ever be needed. Blessings, Bobby

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)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

From: Barbara Meunier <Barbsm@...>

Subject: [ ] Dilemma

Date: Tuesday, June 16, 2009, 8:05 AM

Hi all,

I received a mail from my dr yesterday telling me about how good Nilotinib is &

saying that it should replace Glivec as firstline therapy within a couple of

years.

He'll soon be starting up a trial for patients like me who are CCR or MMR which

involves 2 random arms - Glivec 400mg Vs Nilotinib 400 mg X 2 / day.

He said that I could take part if I wanted to.

I really don't know what to think - I've been PCR-U for the past 3 years on

Glivec with just the odd slight PCR positive.

I don't have too many side effects from Glivec apart from severe diarrhea at

times & my extra 13kgs.

Nilotinib could get rid of my extra kilos & diarrhea, but it could cause other

health problems eg; hear, pancreas & low counts.

I think believe that it has to be taken take it away from food aswell.

Glivec has got me to a very good remisssion, but who know whether this will

last.

Half of me's tempted to go with the trial, the other says leave things as they

are & keep my options open (I could always take my Nilotinib if I started

showing signs of relpase on Glivec.

would be grateful for you views on this - thanks,

Barbara

[Guest guest]

Hi Barbara - yes Tasigna is great if you have to change due to severe side

effects, but it comes with it's own set of baggage and doesn't have the

wealth of statistical data that Glivec has after 10 years. It is also a pain

to take in the evening due to the fasting rule, especially when you have

visitors and can't eat anything before 7pm. It was much easier to take

Glivec once a day.

I have heard there are trials being conducted where newly diagnosed patients

are being commenced on Tasigna.

Sprycel was never for me as I am an asthmatic and yes Tasigna is great at

helping to reduce weight gain, as I put on 12 kgs and I don't have the

severe fatigue anymore, which means I exercise more. For me Glivec stopped a

lot of the side effects of my inflammatory bowel disease, while on Tasigna

it has began to flare up again.

I am lucky my counts have always been perfect whether on Glivec or Tasigna,

but know of a few who have had a rough time with anaemia and others who had

transient pancreatitis at first and also problems with high liver enzymes

which caused them to stop taking Tasigna. Tasigna can also cause high

cholesterol (Glivec reduces it) and high blood sugar readings and of course

you must be screened to make sure you don't have any heart disease.

If I had to stop taking Tasigna, I have no where to go other than back to

Glivec or find a trial, that is the problem and the dilemma.

Regards,

From: [mailto: ] On Behalf Of

Barbara Meunier

Sent: Tuesday, 16 June 2009 10:06 PM

Subject: [ ] Dilemma

Hi all,

I received a mail from my dr yesterday telling me about how good Nilotinib

is & saying that it should replace Glivec as firstline therapy within a

couple of years.

He'll soon be starting up a trial for patients like me who are CCR or MMR

which involves 2 random arms - Glivec 400mg Vs Nilotinib 400 mg X 2 / day.

He said that I could take part if I wanted to.

I really don't know what to think - I've been PCR-U for the past 3 years on

Glivec with just the odd slight PCR positive.

I don't have too many side effects from Glivec apart from severe diarrhea at

times & my extra 13kgs.

Nilotinib could get rid of my extra kilos & diarrhea, but it could cause

other health problems eg; hear, pancreas & low counts.

I think believe that it has to be taken take it away from food aswell.

Glivec has got me to a very good remisssion, but who know whether this will

last.

Half of me's tempted to go with the trial, the other says leave things as

they are & keep my options open (I could always take my Nilotinib if I

started showing signs of relpase on Glivec.

would be grateful for you views on this - thanks,

Barbara

[Guest guest]

Hi Barbara: Your doctor is talking about using you for a trial to see how

medications compare. I personally think, they should use a patient who is not

doing well that might need to swtich.

I totally agree with If It Ain't Broke Don't Fix It!!!!!!!!!!

You could be opening a can of worms and mess up where you are now with a 3 year

PCRU. Everything has its side effects, therefore, I would stay with what I am

on. In the event you need to switch at some point that would be an entirely

different story. You could continue to do well on the Gleevec for many years.

Whatever your decision is, I pray its the right one.

[Guest guest]

Hi Barbara,

I think I'm missing something here. What would be the point of switching drugs

if you've already achieved the best possible response and your side effects are

manageable?

Does your doctor think that Tasigna can cure you because if he does, he hasn't

read the literature. Tasigna is no more of a cure for CML than Gleevec is.

For people who can't tolerate Gleevec or who haven't achieved a stable response

on Gleevec, Tasigna is a no brainer and a wonderful option to have but in your

case, I can't for the life of me see why anyone would even suggest changing to

it.

Tracey

>

> Hi all,

> I received a mail from my dr yesterday telling me about how good Nilotinib is

& saying that it should replace Glivec as firstline therapy within a couple of

years.

> He'll soon be starting up a trial for patients like me who are CCR or MMR

which involves 2 random arms - Glivec 400mg Vs Nilotinib 400 mg X 2 / day.

> He said that I could take part if I wanted to.

> I really don't know what to think - I've been PCR-U for the past 3 years on

Glivec with just the odd slight PCR positive.

> I don't have too many side effects from Glivec apart from severe diarrhea at

times & my extra 13kgs.

> Nilotinib could get rid of my extra kilos & diarrhea, but it could cause other

health problems eg; hear, pancreas & low counts.

> I think believe that it has to be taken take it away from food aswell.

> Glivec has got me to a very good remisssion, but who know whether this will

last.

> Half of me's tempted to go with the trial, the other says leave things as they

are & keep my options open (I could always take my Nilotinib if I started

showing signs of relpase on Glivec.

> would be grateful for you views on this - thanks,

> Barbara

>

[Guest guest]

Hi Barbara,

 

I agree with the rest - " if it's not broken, don't fix it. " You are doing well

on Nilotinib. Trials also require more frequent visits and more demand from the

research team.  If you aren't having any problems and are living life to your

fullest, keep it going. 

 

God Bless,

Jackie S.

From: Barbara Meunier <Barbsm@...>

Subject: [ ] Dilemma

Date: Tuesday, June 16, 2009, 7:05 AM

Hi all,

I received a mail from my dr yesterday telling me about how good Nilotinib is &

saying that it should replace Glivec as firstline therapy within a couple of

years.

He'll soon be starting up a trial for patients like me who are CCR or MMR which

involves 2 random arms - Glivec 400mg Vs Nilotinib 400 mg X 2 / day.

He said that I could take part if I wanted to.

I really don't know what to think - I've been PCR-U for the past 3 years on

Glivec with just the odd slight PCR positive.

I don't have too many side effects from Glivec apart from severe diarrhea at

times & my extra 13kgs.

Nilotinib could get rid of my extra kilos & diarrhea, but it could cause other

health problems eg; hear, pancreas & low counts.

I think believe that it has to be taken take it away from food aswell.

Glivec has got me to a very good remisssion, but who know whether this will

last.

Half of me's tempted to go with the trial, the other says leave things as they

are & keep my options open (I could always take my Nilotinib if I started

showing signs of relpase on Glivec.

would be grateful for you views on this - thanks,

Barbara

[Guest guest]

Hi Barbara,

I don't know of any CML specialist that will make a change to any CML

treatment if one is doing well on it. In your case, you are doing

spectacularly well on Gleevec. I cannot think of any argument that would

entice one to switch to Tasigna.

Also, what is the point of this new trial? I realize that Novartis is doing

trials to compare Gleevec to Tasigna for newly diagnosed patients. This

trial is a no brainer. It will show that those patients starting on Tasigna

do better than those on Gleevec. I believe that real point of this trial is

to get newly diagnosed patients to start on Tasigna once the patent for

Gleevec ends.

Once one has achieved CCR or MMR and maintained it for several years, the

odds of their CML relapsing is the same as those patients who have achieved

PCRU.

When you get a chance, ask Dr. Nicolini to explain the point of the trial.

ZAvie

Zavie (age 70)

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

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

Barbara Meunier

Sent: June 16, 2009 8:06 AM

Subject: [ ] Dilemma

Hi all,

I received a mail from my dr yesterday telling me about how good Nilotinib

is & saying that it should replace Glivec as firstline therapy within a

couple of years.

He'll soon be starting up a trial for patients like me who are CCR or MMR

which involves 2 random arms - Glivec 400mg Vs Nilotinib 400 mg X 2 / day.

He said that I could take part if I wanted to.

I really don't know what to think - I've been PCR-U for the past 3 years on

Glivec with just the odd slight PCR positive.

I don't have too many side effects from Glivec apart from severe diarrhea at

times & my extra 13kgs.

Nilotinib could get rid of my extra kilos & diarrhea, but it could cause

other health problems eg; hear, pancreas & low counts.

I think believe that it has to be taken take it away from food aswell.

Glivec has got me to a very good remisssion, but who know whether this will

last.

Half of me's tempted to go with the trial, the other says leave things as

they are & keep my options open (I could always take my Nilotinib if I

started showing signs of relpase on Glivec.

would be grateful for you views on this - thanks,

Barbara

[Guest guest]

Hi Barb

Goodness - I think that is the right word Dilemmaaaaaaaa !!

What to do !!

I am in the " if you are doing OK - PCRU - limited side effects - then there has

to be a better reason then changing drugs "

Maybe it is that I am not the courageous type

However if I personally was having terrible side effects and glivec not working

then I would consider ?

I would of thought that to compare drugs - the medical guys would start two

groups who were newly diagnosed or even at the

end of the first year after diagnosis and then there would be a true comparable.

Perhaps this is not how these trials work?

What to do !! Don't think about it - be an emu (as we say in OZ) - just a

saying -

Go and have a cuppa and cake - there is no hurry I am assuming to make a

decision.

Have you a Leuk Foundation Counsellor at the end of a phone - they maybe able to

assist.

Sue (Aussie)

(United in Health)

__________ Information from ESET NOD32 Antivirus, version of virus signature

database 4160 (20090616) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com

[Guest guest]

wow, beautiful :)Margie M. RodarteFrom: Randy <jqpublic_59@...>Subject: [] Dilemma , united_by_hearts , "Randy" <jqpublic_59@...>Date: Tuesday, July 21, 2009, 10:06 AM

Dilemma

The bedside candle dripping it's waxy tears,

as I relate somewhere in this moment's dilemma;

To watch you sleeping, soft all over, dancing in dreams.

Butterflies envisioned as I absorbe your breath.

One little nudge, a soft caress, to brush your cheek.

Any of these snowflake textured gestures

would wake you into flaming pasion, mutually savored.

The morning sun would rise. Neither of us knowing or caring.

Oh how I wish to steal you away from slumber's arms.

Your foggy eyes focusing into mine, then into love.

Yet part of me continues to resist, to refrain.

Because now, the universe gets to feel you as I already do.

So I remain silent, basking in your lithesome beauty.

Your head nestled in the pillow, yet in the clouds.

Who am I to deny heaven of such a grandeur exchanged?

The clock hand frozen as I await your morning kiss.

Randy

[Guest guest]

One thing my physical therapist told me we all have opinions on whether or not a

baby should be in a band but we are not the experts in that field. You and your

tech at cranial technologies really need to talk. Make sure they can jusify and

that the pictures and measurments show a need for a second band.

Mom of a beautiful banded baby girl

>

> I have a dilemma this week that is really bothering me.  I had a picture study

of my daughter's head on Tuesday.  The results were amazing.  She has made

tremendous progress.  A few things I still notice are 1) the ear asymmetry 2)

the torticullis and 3) a little bulging on the upper left side of her head. 

Overall, I am so pleased with the results, however, CT wants to put her in a

second band.  Initially I was for it, as it can't hurt and I don't want to

regret not banding later. 

>  

> Thursday she had her monthly Physical Therapy appointment.  I brought in the

photo study pictures/results from Tuesday to show the PT.  He was really

impressed as well.  Then I told him that CT wants a second band.  He was

shocked.  He said if it was his daughter, he would not do it.  The current look

of the torticullis in the pictures is a result of an ear infection this week. 

He said her neck muscle isn't even tight and the torticullis is almost gone.  

Also, this  why the ear asymmetry in the pictures is so significant.  He is

having us take pictures of her every day for 2 weeks to make sure there is only

a slight tilt and not extreme like the pictures indicated.  The bulging area on

the top of her head is an area that isn't even covered by the band.  Therefore,

he suggested that it would be silly to get another band and to spend all that

money.  Now I am second guessing everything again.

>  

> Paige is 8 months old. She has been in the band for 3 months.  I will try and

figure out how to post pictures.

>  

> Thanks for all of your responses (ahead of time).

>  

>

> Woodbridge, VA

>