Re: Getting on the Defensive

[Guest guest]

Hi Everyone: Our weekends are usually pretty quiet, but I think this subject

got everyone's blood pumping or boiling or whatever. As usual Lottie you

brought up some very good things, especially mothers who smoke well

breastfeeding. I knew a lot of them back in the 70's, as I guess I am one of

the OLDER people referred to.

I do not think we will be getting a response anymore from her, but my feelings

right now are that this was just not a breastfeeding issue. I think there are

some underlying problems that she may have and we know nothing about.If we have

any new mothers reading all these posts, I hope it helps them to see why they

should not be breastfeeding well on treatment. If you had a baby during your

diagnosis or treatment of CML, then consider it a blessing that you have a

healthy baby, and that your here to take care of them. Give them their bottle,

and you do not have to worry about if they got anything from your breastmilk.

Even those of us who are past childbearing years, we have no idea what

long term results we could have from any of the treatments we are doing. I just

Thank God everyday for all the years that he has given me without the BMT, and

praying that a lot of us get to see a cure at some point. We have made friends

and have given each other support in every way, and thats what its all about. I

am just going to pray for and her baby along with all my other prayers that

go out for everyone.

>

> My dear ,

> You created a firestorm when you stated that women who didn't breastfeed their

infants were poor excuses for mothers. I hope you understand why people were

offended by such a statement. You became defensive in your position and

proceeded to become even vitriolic and offended even more people and distanced

them from your cause. No one said you were not welcome here and if you have

that feeling, it is your way of fending off the mistake that was made by trying

to shame the very women who have upheld you in your right to free speech. This

is not the I envisioned you to be.

>

> It is not enough to say you have the right, with it comes responsibility and

allowing them to have their say, that's the way freedom works. You do not gain

friends by name calling and I think that the women in this group have used great

restraint in replying to your accusations. What about adopted children, are

they different because they were bottle fed? What you have done is condemned

all women who did not breastfeed their babies and painted them all with a broad

brush, not even knowing the reasons they did not. For many it was not an

option. In some countries you might be labled a zealot. Your statements appear

to be saying that it's your way or the highway. When I had my first child, there

was a woman breastfeeding her baby while smoking a cigarette, with ashes falling

on the baby and blowing smoke so close to that baby's face. Now would you call

that a good mother, just because she was breastfeeding her baby?

>

> Please be fair and admit that you have offended some and others who have

remained silent, offer an apology and mend the fences that have been broken.

You will be thought of as a much better person than you have come off to be by

your censure of other's rights t speak out. This is not a religious or even a

political issue, it is personal and because it is so personal, it has roused the

many who are tolerant. When you cross the line, the natives get restless, they

want to shield the very liberty you attack. I never perceived you to be that

sort of person.

>

> China is correct, if you were in the US, your doctor would probably have

reported you for child endangerment based on all of the warnings documented by

Novartis. That was all included in my first post to you. I think she also made a

very good argument in your defense that we are all united because of CML and no

one is forcing you off, it is of your own volition. Play fair, don't pick up

all of your marbles and go home just because you lost the first game.

> Carpe Diem,

> Lottie Duthu

>

>

[Guest guest]

Hi everyone,

I may not speak often but I can't believe all that is going on. We have to

remember why we are here, and that to must of us this has been a support system

and extended family.

I am 47 years and did not breat feed my children when they were babies, and I

consider myself to be a very good mother. I'm hoping you weren't thinking

before writing that about mothers who don't breast feed their babies. We've all

at one time or another didn't phraise something exactly right, that is what I'm

sorry means.

I have looked up to this group and you have all helped me since diagnosis, and

please let's remember the majority of us are here to help each other and not

don't make such harsh statements because of ur views on breast feeding and bad

mothers. I too found that statement untrue and uncalled for. And if you can't

apoligize to the group like an adult maybe this isn't the group for you. We are

adult enough to forgive with an apology. The majority of you keep me going!

Thank you.

Peggy Becker

Connected by MOTOBLURâ„¢ on T-Mobile

[ ] Getting on the Defensive

My dear ,

You created a firestorm when you stated that women who didn't breastfeed their

infants were poor excuses for mothers. I hope you understand why people were

offended by such a statement. You became defensive in your position and

proceeded to become even vitriolic and offended even more people and distanced

them from your cause. No one said you were not welcome here and if you have

that feeling, it is your way of fending off the mistake that was made by trying

to shame the very women who have upheld you in your right to free speech. This

is not the I envisioned you to be.

It is not enough to say you have the right, with it comes responsibility and

allowing them to have their say, that's the way freedom works. You do not gain

friends by name calling and I think that the women in this group have used great

restraint in replying to your accusations. What about adopted children, are

they different because they were bottle fed? What you have done is condemned

all women who did not breastfeed their babies and painted them all with a broad

brush, not even knowing the reasons they did not. For many it was not an

option. In some countries you might be labled a zealot. Your statements appear

to be saying that it's your way or the highway. When I had my first child, there

was a woman breastfeeding her baby while smoking a cigarette, with ashes falling

on the baby and blowing smoke so close to that baby's face. Now would you call

that a good mother, just because she was breastfeeding her bab

[Guest guest]

Well said. I missed the first of the conversation but it really saddens

me that anyone would consider breastfeeding while taking chemotherapy. You

don't have to be that knowledgeable or intelligent to think or read about

the possibilities of what is happening in our bodies and what would be in

our breast milk. Their own warnings in the pamphlets warn you against

it?.......

To each their own, I guess. Not really an educated thing to do.

RN

Wife and mother of 3 (14,11,9)

CML 5/13/05

Gleevec 800mg until 8/07

Sprycel 100mg since

In a message dated 10/3/2010 6:48:15 P.M. Central Daylight Time,

suzzienovember@... writes:

Hi Everyone: Our weekends are usually pretty quiet, but I think this

subject got everyone's blood pumping or boiling or whatever. As usual Lottie

you

brought up some very good things, especially mothers who smoke well

breastfeeding. I knew a lot of them back in the 70's, as I guess I am one of

the

OLDER people referred to.

I do not think we will be getting a response anymore from her, but my

feelings right now are that this was just not a breastfeeding issue. I think

there are some underlying problems that she may have and we know nothing

about.If we have any new mothers reading all these posts, I hope it helps them

to see why they should not be breastfeeding well on treatment. If you had a

baby during your diagnosis or treatment of CML, then consider it a

blessing that you have a healthy baby, and that your here to take care of them.

Give them their bottle, and you do not have to worry about if they got

anything from your breastmilk.

Even those of us who are past childbearing years, we have no idea what

long term results we could have from any of the treatments we are doing. I

just Thank God everyday for all the years that he has given me without the

BMT, and praying that a lot of us get to see a cure at some point. We have

made friends and have given each other support in every way, and thats what

its all about. I am just going to pray for and her baby along with all

my other prayers that go out for everyone.

>

> My dear ,

> You created a firestorm when you stated that women who didn't breastfeed

their infants were poor excuses for mothers. I hope you understand why

people were offended by such a statement. You became defensive in your

position and proceeded to become even vitriolic and offended even more people

and

distanced them from your cause. No one said you were not welcome here and

if you have that feeling, it is your way of fending off the mistake that was

made by trying to shame the very women who have upheld you in your right

to free speech. This is not the I envisioned you to be.

>

> It is not enough to say you have the right, with it comes responsibility

and allowing them to have their say, that's the way freedom works. You do

not gain friends by name calling and I think that the women in this group

have used great restraint in replying to your accusations. What about

adopted children, are they different because they were bottle fed? What you

have

done is condemned all women who did not breastfeed their babies and painted

them all with a broad brush, not even knowing the reasons they did not.

For many it was not an option. In some countries you might be labled a

zealot. Your statements appear to be saying that it's your way or the highway.

When I had my first child, there was a woman breastfeeding her baby while

smoking a cigarette, with ashes falling on the baby and blowing smoke so close

to that baby's face. Now would you call that a good mother, just because

she was breastfeeding her baby?

>

> Please be fair and admit that you have offended some and others who have

remained silent, offer an apology and mend the fences that have been

broken. You will be thought of as a much better person than you have come off

to

be by your censure of other's rights t speak out. This is not a religious

or even a political issue, it is personal and because it is so personal, it

has roused the many who are tolerant. When you cross the line, the natives

get restless, they want to shield the very liberty you attack. I never

perceived you to be that sort of person.

>

> China is correct, if you were in the US, your doctor would probably have

reported you for child endangerment based on all of the warnings

documented by Novartis. That was all included in my first post to you. I think

she

also made a very good argument in your defense that we are all united

because of CML and no one is forcing you off, it is of your own volition. Play

fair, don't pick up all of your marbles and go home just because you lost the

first game.

> Carpe Diem,

> Lottie Duthu

>

> [Non-text portions of this message have been removed]

>

RN

Wife and mother of 3 (14,11,9)

CML 5/13/05

Gleevec 800mg until 8/07

Sprycel 100mg since

[Guest guest]

Dear All

I don't contribute much from across the Pond here but feel a compulsion to say

something. Whether it's responsibly exercising my free speech right or not I

don't know. I hope so. The current debate has prompted me to say something I

wanted to say before but have left it, until now.

First, I'd like to say how much support I have found hearing the stories from

this group and others that I participate in. I was 42 when diagnosed, so not an

elder statesman, but I get great encouragement hearing the stories of those old

young and in the middle, especially the Glivec - and other TKI - pioneers. At

the time I was diagnosed I had all the usual fears, primarily directed towards

my young children whom I thought might be without their father all too young

because of this condition. Hearing your stories helped me realise that the

progress made through the fantastic efforts of CML champions like Druker,

Sawyers, Nick Lydon and Jurg Zimmerman just might give me my life back.

I now appreciate just what they - and others like Goldman and all the

others around the world who pursued the development and clinical trials of TKIs,

got them approved and even funded - achieved. They are all heroic, as are those

also pursuing improvements in transplants. I'm hugely grateful to them, and all

the doctors who have looked after me so well - we need to keep supporting them

all in the battle to achieve the best possible outcomes for all CMLers, and then

cancers generally we hope.

I don't want to enter the breastfeeding debate - who am I to comment anyway -

but I firmly believe in live and let live. I don't judge. So long as the

children are loved and looked after, that's what matters.

There's one other thing though that I feel compelled to comment on, and I don't

want to appear to be having a go at for I am not. I respect her decision

to choose the course she did for herself and her daughter. That is absolutely

her right, and we have no evidence either way about the possible harmful effects

of glivec on children through breastfeeding. There are clear warnings, which

personally I would heed without hesitation, but to my knowledge no actual

evidence. So, you make a choice to take a risk, at your risk.

However, I am concerned at the further suggestion that green tea somehow

magically kept CML at bay from diagnosis until recently. I do not believe this,

and I hope any expectant mothers diagnosed with CML would listen first and

foremost to their doctors (and go to a CML specialist centre if in ANY doubt

about the advice given or care received). describes her story and gives it

as " evidence " that green tea works. Unfortunately, we cannot say definitively

for sure whether green tea had any effect or not but I don't believe it did

(there are no published studies showing an effect in CML at all and plenty of

annecdotal evidence to the contrary). On the other hand, had leukapheresis

three times at diagnosis I believe, and began to drink green tea at about the

same time. Which of these is clinically proven to reduce WBC (because that's

what it does)? Not green tea. Yes, leukaphereis has adverse effects but it's a

fairly major intervention and is only used to get WBC down from what may be

dangerously high levels (anything above around 100), which it does.

Also, crucially green tea had no effect on the levels of bcr/abl oncogene in her

blood (which I think told us was 124% - pretty high - at diagnosis - and

126% more recently). So unexpectedly before Glivec the WBC came right back up

again. I am sure there are many of us who can give account of how Glivec (and

other TKIs) on the other hand dramatically reduce the cancer gene levels as well

as WBC (as opposed to WBC alone), meaning WBC stays down. In my case, I was

around 80% bcr/able at diagnosis - a little above the assumed baseline over here

- and down to zero in less than 6 months, on Glivec. I am glad Glivec is now

working for and hope it continues to do so, and do so excellently.

I congratulate on the birth of her daughter, and her courage in taking the

decisions she has. They were very brave. But that doesn't mean they are at all

the right decisions for others and I can understand the upset at some of the

things she has said about other mothers, and how she said them. From what I

have seen I don't think that she was given anything other than good, sensible

advice by her doctors which I am quite sure was given with what they thought

were her and her baby's best interests in mind.

Our CML specialists have worked hard to give us hope for a future that we didn't

once have - and I for one am grateful, and will support them.

Those are my thoughts - not wishing to be judgmental about anyone, but concerned

to ensure patients act on advice from specialists.

>

> Hi everyone,

> I may not speak often but I can't believe all that is going on. We have to

remember why we are here, and that to must of us this has been a support system

and extended family.

> I am 47 years and did not breat feed my children when they were babies, and I

consider myself to be a very good mother. I'm hoping you weren't thinking

before writing that about mothers who don't breast feed their babies. We've all

at one time or another didn't phraise something exactly right, that is what I'm

sorry means.

> I have looked up to this group and you have all helped me since diagnosis, and

please let's remember the majority of us are here to help each other and not

don't make such harsh statements because of ur views on breast feeding and bad

mothers. I too found that statement untrue and uncalled for. And if you can't

apoligize to the group like an adult maybe this isn't the group for you. We are

adult enough to forgive with an apology. The majority of you keep me going!

Thank you.

> Peggy Becker

>

> Connected by MOTOBLURâ„¢ on T-Mobile

>

> [ ] Getting on the Defensive

>

> My dear ,

> You created a firestorm when you stated that women who didn't breastfeed their

infants were poor excuses for mothers. I hope you understand why people were

offended by such a statement. You became defensive in your position and

proceeded to become even vitriolic and offended even more people and distanced

them from your cause. No one said you were not welcome here and if you have

that feeling, it is your way of fending off the mistake that was made by trying

to shame the very women who have upheld you in your right to free speech. This

is not the I envisioned you to be.

>

> It is not enough to say you have the right, with it comes responsibility and

allowing them to have their say, that's the way freedom works. You do not gain

friends by name calling and I think that the women in this group have used great

restraint in replying to your accusations. What about adopted children, are

they different because they were bottle fed? What you have done is condemned

all women who did not breastfeed their babies and painted them all with a broad

brush, not even knowing the reasons they did not. For many it was not an

option. In some countries you might be labled a zealot. Your statements appear

to be saying that it's your way or the highway. When I had my first child, there

was a woman breastfeeding her baby while smoking a cigarette, with ashes falling

on the baby and blowing smoke so close to that baby's face. Now would you call

that a good mother, just because she was breastfeeding her bab

>

>

>

[Guest guest]

,

That is exactly what I said about Gleevec being a Chemotherapy drug, and she

replied back that it wasn't????????????? I guess if she has only been dx a year

she still has much to learn. Too bad she turned us off because this is the best

place to learn about CML

Regards Donna

PS Did your Husband re-enter the military in the end???

> >

> > My dear ,

> > You created a firestorm when you stated that women who didn't breastfeed

> their infants were poor excuses for mothers. I hope you understand why

> people were offended by such a statement. You became defensive in your

> position and proceeded to become even vitriolic and offended even more people

and

> distanced them from your cause. No one said you were not welcome here and

> if you have that feeling, it is your way of fending off the mistake that was

> made by trying to shame the very women who have upheld you in your right

> to free speech. This is not the I envisioned you to be.

> >

> > It is not enough to say you have the right, with it comes responsibility

> and allowing them to have their say, that's the way freedom works. You do

> not gain friends by name calling and I think that the women in this group

> have used great restraint in replying to your accusations. What about

> adopted children, are they different because they were bottle fed? What you

have

> done is condemned all women who did not breastfeed their babies and painted

> them all with a broad brush, not even knowing the reasons they did not.

> For many it was not an option. In some countries you might be labled a

> zealot. Your statements appear to be saying that it's your way or the

highway.

> When I had my first child, there was a woman breastfeeding her baby while

> smoking a cigarette, with ashes falling on the baby and blowing smoke so

close

> to that baby's face. Now would you call that a good mother, just because

> she was breastfeeding her baby?

> >

> > Please be fair and admit that you have offended some and others who have

> remained silent, offer an apology and mend the fences that have been

> broken. You will be thought of as a much better person than you have come off

to

> be by your censure of other's rights t speak out. This is not a religious

> or even a political issue, it is personal and because it is so personal, it

> has roused the many who are tolerant. When you cross the line, the natives

> get restless, they want to shield the very liberty you attack. I never

> perceived you to be that sort of person.

> >

> > China is correct, if you were in the US, your doctor would probably have

> reported you for child endangerment based on all of the warnings

> documented by Novartis. That was all included in my first post to you. I

think she

> also made a very good argument in your defense that we are all united

> because of CML and no one is forcing you off, it is of your own volition.

Play

> fair, don't pick up all of your marbles and go home just because you lost the

> first game.

> > Carpe Diem,

> > Lottie Duthu

> >

> > [Non-text portions of this message have been removed]

> >

>

>

>

>

> RN

> Wife and mother of 3 (14,11,9)

> CML 5/13/05

> Gleevec 800mg until 8/07

> Sprycel 100mg since

>

>

>

[Guest guest]

Sometimes my Sprycel comes in a hazardous materials bag, stating " Caution,

Chemotherapy Drug "

My wife and I joke about the funny things we can do with the bags.

[ ] Re: Getting on the Defensive

,

That is exactly what I said about Gleevec being a Chemotherapy drug, and she

replied back that it wasn't????????????? I guess if she has only been dx a

year she still has much to learn. Too bad she turned us off because this is

the best place to learn about CML

Regards Donna

PS Did your Husband re-enter the military in the end???

> >

> > My dear ,

> > You created a firestorm when you stated that women who didn't breastfeed

> their infants were poor excuses for mothers. I hope you understand why

> people were offended by such a statement. You became defensive in your

> position and proceeded to become even vitriolic and offended even more

people and

> distanced them from your cause. No one said you were not welcome here and

> if you have that feeling, it is your way of fending off the mistake that

was

> made by trying to shame the very women who have upheld you in your right

> to free speech. This is not the I envisioned you to be.

> >

> > It is not enough to say you have the right, with it comes responsibility

> and allowing them to have their say, that's the way freedom works. You do

> not gain friends by name calling and I think that the women in this group

> have used great restraint in replying to your accusations. What about

> adopted children, are they different because they were bottle fed? What

you have

> done is condemned all women who did not breastfeed their babies and

painted

> them all with a broad brush, not even knowing the reasons they did not.

> For many it was not an option. In some countries you might be labled a

> zealot. Your statements appear to be saying that it's your way or the

highway.

> When I had my first child, there was a woman breastfeeding her baby while

> smoking a cigarette, with ashes falling on the baby and blowing smoke so

close

> to that baby's face. Now would you call that a good mother, just because

> she was breastfeeding her baby?

> >

> > Please be fair and admit that you have offended some and others who have

> remained silent, offer an apology and mend the fences that have been

> broken. You will be thought of as a much better person than you have come

off to

> be by your censure of other's rights t speak out. This is not a religious

> or even a political issue, it is personal and because it is so personal,

it

> has roused the many who are tolerant. When you cross the line, the natives

> get restless, they want to shield the very liberty you attack. I never

> perceived you to be that sort of person.

> >

> > China is correct, if you were in the US, your doctor would probably have

> reported you for child endangerment based on all of the warnings

> documented by Novartis. That was all included in my first post to you. I

think she

> also made a very good argument in your defense that we are all united

> because of CML and no one is forcing you off, it is of your own volition.

Play

> fair, don't pick up all of your marbles and go home just because you lost

the

> first game.

> > Carpe Diem,

> > Lottie Duthu

> >

> >

[Guest guest]

As an even rarer contributor from across the pond I have to agree with almost

everything says. Like many I was appalled by 's comments on mothers

who don't breast feed, but has her own set of beliefs and any appeals to

logic or evidence based science are no more likely to persuade her to change her

mind than they would be to persuade a hard-line Jehovah's Witness to allow their

child to have a life-saving blood transfusion.

I too have been far more concerned at 's repeated statements to new posters

that Green Tea is a valid treatment option. This is more like allowing said

Jehovah's witness to evangelise on the intensive care ward.

It is always sad when someone leaves a discussion board in such acrimonious

circumstances, but in the circumstances I can't help but feel that this time it

is the best outcome for all concerned. It's hard to see that was going to

get much benefit from this wonderful community given her attitude and beliefs

and there was a real risk that she might have caused serious harm to someone's

health rather than just to their feelings through her advice.

Phil

> >

> > Hi everyone,

> > I may not speak often but I can't believe all that is going on. We have to

remember why we are here, and that to must of us this has been a support system

and extended family.

> > I am 47 years and did not breat feed my children when they were babies, and

I consider myself to be a very good mother. I'm hoping you weren't thinking

before writing that about mothers who don't breast feed their babies. We've all

at one time or another didn't phraise something exactly right, that is what I'm

sorry means.

> > I have looked up to this group and you have all helped me since diagnosis,

and please let's remember the majority of us are here to help each other and not

don't make such harsh statements because of ur views on breast feeding and bad

mothers. I too found that statement untrue and uncalled for. And if you can't

apoligize to the group like an adult maybe this isn't the group for you. We are

adult enough to forgive with an apology. The majority of you keep me going!

Thank you.

> > Peggy Becker

> >

> > Connected by MOTOBLURâ„¢ on T-Mobile

> >

> > [ ] Getting on the Defensive

> >

> > My dear ,

> > You created a firestorm when you stated that women who didn't breastfeed

their infants were poor excuses for mothers. I hope you understand why people

were offended by such a statement. You became defensive in your position and

proceeded to become even vitriolic and offended even more people and distanced

them from your cause. No one said you were not welcome here and if you have

that feeling, it is your way of fending off the mistake that was made by trying

to shame the very women who have upheld you in your right to free speech. This

is not the I envisioned you to be.

> >

> > It is not enough to say you have the right, with it comes responsibility and

allowing them to have their say, that's the way freedom works. You do not gain

friends by name calling and I think that the women in this group have used great

restraint in replying to your accusations. What about adopted children, are

they different because they were bottle fed? What you have done is condemned

all women who did not breastfeed their babies and painted them all with a broad

brush, not even knowing the reasons they did not. For many it was not an

option. In some countries you might be labled a zealot. Your statements appear

to be saying that it's your way or the highway. When I had my first child, there

was a woman breastfeeding her baby while smoking a cigarette, with ashes falling

on the baby and blowing smoke so close to that baby's face. Now would you call

that a good mother, just because she was breastfeeding her bab

> >

> >

> >

[Guest guest]

I also think is in severe denial and perhaps some post natal depression

which would be no wonder with all that she has had to contend with. It is

very sad as when you are so closed and fixated on such a belief, that she is

going to find it very hard to deal with her illness and I pity her rather

than condemn her. I just hope that her baby will be OK in the future and

will not suffer any side effects that are not apparent at this time.

Cheers

-- [ ] Getting on the Defensive

> >

> > My dear ,

> > You created a firestorm when you stated that women who didn't breastfeed

their infants were poor excuses for mothers. I hope you understand why

people were offended by such a statement. You became defensive in your

position and proceeded to become even vitriolic and offended even more

people and distanced them from your cause. No one said you were not welcome

here and if you have that feeling, it is your way of fending off the mistake

that was made by trying to shame the very women who have upheld you in your

right to free speech. This is not the I envisioned you to be.

> >

> > It is not enough to say you have the right, with it comes responsibility

and allowing them to have their say, that's the way freedom works. You do

not gain friends by name calling and I think that the women in this group

have used great restraint in replying to your accusations. What about

adopted children, are they different because they were bottle fed? What you

have done is condemned all women who did not breastfeed their babies and

painted them all with a broad brush, not even knowing the reasons they did

not. For many it was not an option. In some countries you might be labled a

zealot. Your statements appear to be saying that it's your way or the

highway. When I had my first child, there was a woman breastfeeding her baby

while smoking a cigarette, with ashes falling on the baby and blowing smoke

so close to that baby's face. Now would you call that a good mother, just

because she was breastfeeding her bab

> >

> >

> >

[Guest guest]

,

I totally agree with you.

Peggy Becker

Connected by MOTOBLURâ„¢ on T-Mobile

Re: [ ] Getting on the Defensive

As an even rarer contributor from across the pond I have to agree with

almost everything says. Like many I was appalled by 's comments

on mothers who don't breast feed, but has her own set of beliefs and

any appeals to logic or evidence based science are no more likely to

persuade her to change her mind than they would be to persuade a hard-line

Jehovah's Witness to allow their child to have a life-saving blood

transfusion.

I too have been far more concerned at 's repeated statements to new

posters that Green Tea is a valid treatment option. This is more like

allowing said Jehovah's witness to evangelise on the intensive care ward.

It is always sad when someone leaves a discussion board in such acrimonious

circumstances, but in the circumstances I can't help but feel that this time

it