Re: Breast feeding while on Gleevec

October 3, 2010

Hi ,

I'm a mother of 4, diagnosed with cml at 22 weeks of pregnancy with my youngest

child, now 7 months old. I'm on this cml boat without buying a ticket for it.

Since when we all have to think on the same lines? I thought that was the idea

of freedom of speech; actual ability to raise ones opinions. I clearly stated

this is my belief. I also believed in myself when I decided to have my baby at

home by myself (no medical assistance) despite doctors not giving me a green

light for home birth. Mind is extremely powerful organ and we can at least try

to control it a bit. I know myself and I know I DID cause my illness, just

getting out of it proved to be a challenge.

Now, if you think I made illiterate, untrue and selfish statement, please prove

it to me if you dare.

From: hey00nanc

Sent: Saturday, October 02, 2010 11:21 PM

Subject: Re: [ ] Breast feeding while on Gleevec

>

> who r u to make such a strong untrue selfish illiterate statement? That

is totally out of line!

> Sent via BlackBerry by AT & T

_____________________________

Remember that this is the same list-mate who recently wrote her opinion that we

create our own diseases (cancers) and that those who are not successful with

treatment have a wish to die prematurely! someone honestly said that.

Just because you believe something, that does not mean that it is true!

it is just something that You believe.

C.

October 3, 2010

Unfortunately I'm on the same boat as any other member of this group but not on

the same page, or rather not even in the same book.

If you think it was or is easy for me to be diagnosed with cml at 22 weeks of my

last pregnancy and be a young mother of 4 kids aged 8, 5, 3 years and 7 months

you got it all wrong.

At least most of you have mature families with some grandchildren, something I

may not experience my self so I'm making the most of what I've got now.

The hell with it!

From: onthewtr@...

Sent: Saturday, October 02, 2010 10:19 PM

Subject: Re: [ ] Breast feeding while on Gleevec

who r u to make such a strong untrue selfish illiterate statement? That is

totally out of line!

Sent via BlackBerry by AT & T

[ ] Breast feeding while on Gleevec

I am gravely concerned about a member who posted recently that she was

breast feeding her baby while on Gleevec. I want her to know that I am not

judging her, but merely reiterating what has been passed down to us

repeately. In speaking directly to her, I hope you have permission, dear

member from your doctor or you could be playing Russian roulette with your

baby's health. This is the warning that comes with Gleevec. Women who want

to become pregnant should not do so while taking Gleevec or any other TKI.

If you need further proof, I urge you to please contact the Novartis Hotline

or the instructions that comes in your package. This comes from their

webpage:

Who should NOT take GLEEVEC

Women who are or could be pregnant. Fetal harm can occur when administered

to pregnant women; therefore, women should not become pregnant, as well as

be advised of the potential risk to the unborn child if GLEEVEC is used

during pregnancy.

" Women who are breast-feeding because of the potential for serious adverse

reactions in nursing infants.

" Sexually active females should use adequate birth control while taking

GLEEVEC.

" Be sure to talk to your doctor and/or healthcare professional about these

issues before taking GLEEVEC "

http://tinyurl.com/29fl97v

--_________________

I further give you warnings from the following information published in the

Internet Journal of Oncology. This article was written by Ault MS,

RN, FNP-BC, ANP-BC Family Nurse Practitioner, Adult Nurse Practitioner

School of Nursing The University of Texas Health Science Center at Houston

and I quote from her article (noted in 2010 Volume 7 Number 2).

I have known Pat Ault for a long time, also most of the doctors in that

department. She would not have been given permission to write this article

without the blessings of the doctors at MDACC that she works under and I

respect her authority on the subject of CML.

You will note that everything I copied is in " quotations " . Some quotes I

have excerpted are posted here, but the entire article can be seen at the

recited website listed below the quotes, however, it is very lengthy:

" Management of CML during pregnancy poses challenges to both hematologists

and obstetricians. Currently, consensus is lacking in management of CML in

pregnancy; therefore, clinical observations have become important. Most of

these observations are derived from small case series or case reports.

" Therefore, leukapheresis may be an intermittent short-term alternative

option for pregnant patients, and prevents fetal exposure to TERATOGENIC

drugs. However, leukapheresis is cumbersome, costly, and a time consuming

procedure, with risk of infection, thrombosis and hypotensive events that

may affect the fetus and patient.

" ........... high concentrations of imatinib are DETECTED IN BREAST MILK.

" Investigation of the placentas included standard pathologic analysis,

computer assisted morphometry, and fluorescence in situ hybridization (FISH)

analysis. This patient was treated with a targeted tyrosine inhibitor during

first trimester of a first pregnancy and during the third trimester of a

second pregnancy. The umbilical cord blood and breast milk findings were: 1)

low imatinib and metabolite concentration levels found in the umbilical

blood suggest limited placental transfer in late pregnancy, and 2) HIGH

CONCENTRATION LEVELS OF IMATINIB AND METABOLITES WERE FOUND IN THE BREAST

MILK.

" Rousselot et al (2007) reported imatinib may be discontinued in patients

who achieved a complete molecular remission for a period of at least 2 years

without evidence of disease progression.

" Gambacorti-Passerini et al (2009) reported the IMATINIB CONCENTRATION IN

BREAST MILK REACHES A STEADY-STATE LEVEL AT 0.8 ug/ml. The milk intake in

infants is known to average 728 to 777 ml/d, (range of 450 to 1165 ml/d);

considering this milk intake and the infants are unlikely to receive more

than 3 mg/d imatinib daily. This amount is far from therapeutic range,

therefore, concluding that mothers with CML could safely breast-feed the

infant. However, the effects of low-dose chronic exposure of infants to

imatinib are not known, and have not undergone long-term investigation;

THEREFORE, BREAST FEEDING SHOULD NOT BE RECOMMENDED AFTER RESUMING THERAPY.

ttp://tinyurl.com/2g82tpc

FYI,

Lottie Duthu

October 3, 2010

Sorry anna I thought I signed my name. Research does state that mothers

shouldn't breastfeed and furthermore what I wrote is not from emotional

distress. From the posts everyone is in agreement that your statement about if

mothers don't breastfeed they are poor excuse for a mother was illerate hurtful

and insensetive. Literature from md anderson states that it is possible gleevec

passes through the mothers milk but I guess you are smarter then them. The

website on gleevec states this also. But it was your decision to breastfeed and

that was your business but to make a statement about mothers being poor excuses

for mothers not breastfeeding was way out of line

Everything I typed was in my own words so that really didn't make much sense on

your part

Regards

Penny

Sent from my Verizon Wireless BlackBerry

Re: [ ] Breast feeding while on Gleevec

>

> I agree Zavie. while I don't post much about CML anymore I am concerned with

the absurd theory that if you don't breastfeed you are a bad mother. My own

daughter who just recently gave birth did not make milk for health reasons and

she is a wonderful Mom. Which is worse, no breast or a Mom who can't admit she

isn't making enough milk to sustain her child? I believe I was on the evaporated

milk and karo diet and survived because of a great mom. Everyday at school I

help care for children who were breastfed and now have autism, learning

disabilities etc. Moms who have this bad attitude certainly will not foster

caring children as they grow. Sorry if I hurt anyone but I feel many young

mothers who have to make the decision not to breastfeed are being given a very

bad rap! Lynn F

> [ ] Breast feeding while on Gleevec

>

> I am gravely concerned about a member who posted recently that she was

> breast feeding her baby while on Gleevec. I want her to know that I am not

> judging her, but merely reiterating what has been passed down to us

> repeately. In speaking directly to her, I hope you have permission, dear

> member from your doctor or you could be playing Russian roulette with your

> baby's health. This is the warning that comes with Gleevec. Women who want

> to become pregnant should not do so while taking Gleevec or any other TKI.

> If you need further proof, I urge you to please contact the Novartis Hotline

> or the instructions that comes in your package. This comes from their

> webpage:

>

> Who should NOT take GLEEVEC

> Women who are or could be pregnant. Fetal harm can occur when administered

> to pregnant women; therefore, women should not become pregnant, as well as

> be advised of the potential risk to the unborn child if GLEEVEC is used

> during pregnancy.

>

> " Women who are breast-feeding because of the potential for serious adverse

> reactions in nursing infants.

>

> " Sexually active females should use adequate birth control while taking

> GLEEVEC.

>

> " Be sure to talk to your doctor and/or healthcare professional about these

> issues before taking GLEEVEC "

>

> http://tinyurl.com/29fl97v

> --_________________

>

> I further give you warnings from the following information published in the

> Internet Journal of Oncology. This article was written by Ault MS,

> RN, FNP-BC, ANP-BC Family Nurse Practitioner, Adult Nurse Practitioner

> School of Nursing The University of Texas Health Science Center at Houston

> and I quote from her article (noted in 2010 Volume 7 Number 2).

>

> I have known Pat Ault for a long time, also most of the doctors in that

> department. She would not have been given permission to write this article

> without the blessings of the doctors at MDACC that she works under and I

> respect her authority on the subject of CML.

>

> You will note that everything I copied is in " quotations " . Some quotes I

> have excerpted are posted here, but the entire article can be seen at the

> recited website listed below the quotes, however, it is very lengthy:

>

> " Management of CML during pregnancy poses challenges to both hematologists

> and obstetricians. Currently, consensus is lacking in management of CML in

> pregnancy; therefore, clinical observations have become important. Most of

> these observations are derived from small case series or case reports.

>

> " Therefore, leukapheresis may be an intermittent short-term alternative

> option for pregnant patients, and prevents fetal exposure to TERATOGENIC

> drugs. However, leukapheresis is cumbersome, costly, and a time consuming

> procedure, with risk of infection, thrombosis and hypotensive events that

> may affect the fetus and patient.

> " ........... high concentrations of imatinib are DETECTED IN BREAST MILK.

> " Investigation of the placentas included standard pathologic analysis,

> computer assisted morphometry, and fluorescence in situ hybridization (FISH)

> analysis. This patient was treated with a targeted tyrosine inhibitor during

> first trimester of a first pregnancy and during the third trimester of a

> second pregnancy. The umbilical cord blood and breast milk findings were: 1)

> low imatinib and metabolite concentration levels found in the umbilical

> blood suggest limited placental transfer in late pregnancy, and 2) HIGH

> CONCENTRATION LEVELS OF IMATINIB AND METABOLITES WERE FOUND IN THE BREAST

> MILK.

>

> " Rousselot et al (2007) reported imatinib may be discontinued in patients

> who achieved a complete molecular remission for a period of at least 2 years

> without evidence of disease progression.

>

> " Gambacorti-Passerini et al (2009) reported the IMATINIB CONCENTRATION IN

> BREAST MILK REACHES A STEADY-STATE LEVEL AT 0.8 ug/ml. The milk intake in

> infants is known to average 728 to 777 ml/d, (range of 450 to 1165 ml/d);

> considering this milk intake and the infants are unlikely to receive more

> than 3 mg/d imatinib daily. This amount is far from therapeutic range,

> therefore, concluding that mothers with CML could safely breast-feed the

> infant. However, the effects of low-dose chronic exposure of infants to

> imatinib are not known, and have not undergone long-term investigation;

> THEREFORE, BREAST FEEDING SHOULD NOT BE RECOMMENDED AFTER RESUMING THERAPY.

>

> ttp://tinyurl.com/2g82tpc

>

> FYI,

>

> Lottie Duthu

>

October 3, 2010

first of all that was me not making that statement. I just read all of

your posts and yes you are entitled to freedom of speech but I do not

believe that you have to be so hurtful in what you say--saying that a mother

that does nurse is a bad mother is not very kind and you have no proof of

that so why say it.

And another thing. you keep referring to most of us being old? how do you

know that? Being old makes us wiser and maybe you should listen to some of

us older ones -=we are older and wiser!!! I am sure you have heard from many

young mothers--not just old people like us!.

Sharon

_____

From: [mailto: ] On Behalf Of

d'Araille

Sent: Sunday, October 03, 2010 6:55 AM

Subject: Re: [ ] Breast feeding while on Gleevec

Hi ,

I'm a mother of 4, diagnosed with cml at 22 weeks of pregnancy with my

youngest child, now 7 months old. I'm on this cml boat without buying a

ticket for it.

Since when we all have to think on the same lines? I thought that was the

idea of freedom of speech; actual ability to raise ones opinions. I clearly

stated this is my belief. I also believed in myself when I decided to have

my baby at home by myself (no medical assistance) despite doctors not giving

me a green light for home birth. Mind is extremely powerful organ and we can

at least try to control it a bit. I know myself and I know I DID cause my

illness, just getting out of it proved to be a challenge.

Now, if you think I made illiterate, untrue and selfish statement, please

prove it to me if you dare.

From: hey00nanc

Sent: Saturday, October 02, 2010 11:21 PM

<mailto:%40>

Subject: Re: [ ] Breast feeding while on Gleevec

--- In <mailto:%40> , onthewtr@...

wrote:

>

> who r u to make such a strong untrue selfish illiterate statement?

That is totally out of line!

> Sent via BlackBerry by AT & T

_____________________________

Remember that this is the same list-mate who recently wrote her opinion that

we create our own diseases (cancers) and that those who are not successful

with treatment have a wish to die prematurely! someone honestly said that.

Just because you believe something, that does not mean that it is true!

it is just something that You believe.

C.

October 3, 2010

typo--i meant to say mother that does not nurse!!!

Sharon

_____

From: [mailto: ] On Behalf Of Sharon

Teichera

Sent: Sunday, October 03, 2010 7:35 AM

Subject: RE: [ ] Breast feeding while on Gleevec

first of all that was me not making that statement. I just read all of

your posts and yes you are entitled to freedom of speech but I do not

believe that you have to be so hurtful in what you say--saying that a mother

that does nurse is a bad mother is not very kind and you have no proof of

that so why say it.

And another thing. you keep referring to most of us being old? how do you

know that? Being old makes us wiser and maybe you should listen to some of

us older ones -=we are older and wiser!!! I am sure you have heard from many

young mothers--not just old people like us!.

Sharon

_____

From: <mailto:%40>

[mailto: <mailto:%40> ] On Behalf Of

d'Araille

Sent: Sunday, October 03, 2010 6:55 AM

<mailto:%40>

Subject: Re: [ ] Breast feeding while on Gleevec

Hi ,

I'm a mother of 4, diagnosed with cml at 22 weeks of pregnancy with my

youngest child, now 7 months old. I'm on this cml boat without buying a

ticket for it.

Since when we all have to think on the same lines? I thought that was the

idea of freedom of speech; actual ability to raise ones opinions. I clearly

stated this is my belief. I also believed in myself when I decided to have

my baby at home by myself (no medical assistance) despite doctors not giving

me a green light for home birth. Mind is extremely powerful organ and we can

at least try to control it a bit. I know myself and I know I DID cause my

illness, just getting out of it proved to be a challenge.

Now, if you think I made illiterate, untrue and selfish statement, please

prove it to me if you dare.

From: hey00nanc

Sent: Saturday, October 02, 2010 11:21 PM

<mailto:%40>

Subject: Re: [ ] Breast feeding while on Gleevec

--- In <mailto:%40>

<mailto:%40> , onthewtr@...

wrote:

>

> who r u to make such a strong untrue selfish illiterate statement?

That is totally out of line!

> Sent via BlackBerry by AT & T

_____________________________

Remember that this is the same list-mate who recently wrote her opinion that

we create our own diseases (cancers) and that those who are not successful

with treatment have a wish to die prematurely! someone honestly said that.

Just because you believe something, that does not mean that it is true!

it is just something that You believe.

C.

October 3, 2010

,

I don't often post, I have trouble on with certain of my computers but I

borrowed my friend's Mac because this is not a time for silence. First let me

say that I'm sorry you feel that you don't belong in the group. Of course you

belong, you have CML. But that is in many cases the only common thread that

connects us. Yet we become friends and in many cases family. Who else can

really understand the path we walk? Friendships are formed here but even in the

greatest of friendships there may be disagreements. It appears this is one such

time.

You are correct when you say breast feeding is good for children. You are

correct when you say, it is your decision to continue to breast feed. I think

the issue began when you stated that anyone who did not breast feed is a bad

mother.

We have enough struggles with our disease without judging each other and to

paint us as bad mothers is hurtful.

It appears from your post that you did your research but all the journals in

the world cannot predict the future. You say that you are young, then perhaps

you are not aware of the drugs that did not impact the mothers but did give the

daughters cancer as young women. As parents we are charged to do what is right

for our children. We make decisions everyday which hopefully are centered on

the needs of the child; not our own.

We are lucky that CML in chronic phase is slow moving. I probably had it for

almost two years before diagnosis. While I drink green tea daily and have for

about 15 years, I think and it is just my opinion, that you were able to carry

your baby to term and remain off meds due to the slow progression which is the

hallmark of the disease in chronic phase. The story may have had a different

ending if you were in blast phase at diagnosis. I'm not arguing with you, I have

no need to be right. I just want you to consider other view points when you are

making your decisions.

I can tell you are a loving and caring mother. I guess that this discussion is

rendered moot by your statement that you are pretty much dried up and now just

breast feed for comfort. Even as non-scientist we have to believe that something

that can affect us at a genetic level, as Gleevec does, has to be some pretty

strong stuff. You wouldn't take a spoon and feed her a little bit of poison,

even 10%. You state how much you love breast feeding, please consider whose

needs and comfort are being met, if in fact there is no nutritional value and

there may even be harm.

I hope you will stay as a member. I'm sorry if you felt attacked but from where

I sit you lobbed the first round- with the bad mother comment. We all are

connected by our disease. But we can't leave our manners at the door. Are you

aware that we have Skip who has had CML for over 30 years? Or that many of the

people on this list were in the clinical trials for the very medicine that is

keeping you alive? We are fortunate to have a living history of the fight

against this disease. They have so much knowledge. Please stay and benefit

from this knowledge.

One final piece of information 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.

I have no judgement on what kind of a mother you are ; I hope you will extend

the same courtesy to the rest of us - we do the best we can and when we know

better, the hope is that we will do better. I know I try to do better everyday.

China

________________________________

From: d'Araille <darajek@...>

Sent: Sun, October 3, 2010 7:10:37 AM