Re: Breast feeding while on Gleevec

September 25, 2010

Thank you Lottie. As you can imagine it wasn't an easy decision. I stayed off

glivec as long as I could when Miatilda was exclusively on the breast up until

she was almost 5 months. That gave me some time to get her used to the bottle,

artificial milk and start her on solids (much earlier than I would in a normal

situation) From the day I got on glivec (only because anything else I tried

failed to keep my WBC down consistently and my spleen became enlarged again

causing a lot of pain) Matilda started receiving a lot more bottle feeds and

solids but I can't entirely stop breastfeeding her. The amount of glivec that

gets through in breast milk is about 10% of the amount contained in blood. It's

my personal decision, doctors don't recommend it simply because they can't say

anything different what the novartis says. Everybody covers themselves. I find

it very difficult to have a proper conversation with any doctor. They simply

will not say anything that could get them embroidered in court case. It's crazy!

Just to remind everybody, the health professional,s we supposed to have trust

in, told me the following:

a.. Baby out by cesarean around 30 weeks of gestation (she was born when she

supposed to be and where she supposed to be, at home (without midwife) after 41

weeks of pregnancy)

b.. Baby will be underweight and may need to be resuscitated (she was my

heaviest baby weighing 3.7 kg!)

c.. when leukapheresis fails to keep the WBC count down, you will have to go

on interferon, later on I was told by the same doctor that it never really

worked and caused a lot of pain! (I never took any drugs for CML during or after

birth up until Matilda was almost 5 months)

d.. if interferon is not working then hydroxyurea will have to be applied

(later I was told that can cause secondary cancer!) I've never been on it!

e.. when I was diagnosed at 22 weeks pregnant, me spleen was enlarged, I was

told it will not get back to normal until stronger drugs are used, guess what!

green tea sorted it!

f.. I was told drinking green tea in pregnancy may damage my baby! I DON'T SEE

ANY DAMAGE IN HER and I'm convinced what health professionals were suggesting

would definitely damage her health, she might not be what she is today, a

perfectly healthy 7 month old baby, not a baby that would have to be in ICU for

weeks after being cut out of me THAT I CALL A BIG FAT NIGHTMARE!

g.. every time I went for consultation, before I decided to finally take

glivec, I was told if I don't go on glivec immediately I will become resistant

to it and die, so far my response to it was 'unexpectedly' fabulous, my blood

count is normal and I'm waiting to see what's my PCR (just had it sent off

yesterday, will know the result when I go for yet another useless consultation

oct 21st)

Matilda is perfectly normal baby. She was sitting up by herself at 5 and a half

months, by now she's 7 months and she's already crawling. She's smart as

anything (what can I say, I'm her mother!) and I expect her to speak as early as

my first daughter who was very early talker and could clearly communicate with

full sentences by the age of 2. I, myself see no serious side effects from

glivec, it's not even mild, It's... like non existent side effects. I do wonder

if an odd headache is from glivec or not sleeping enough (I've got 4 kids) or

muscle pain from actually pushing the double buggy with basket full of shopping

or again effect from glivec. I've not noticed any change in Matilda since I went

on glivec.

For me breastfeeding is the meaning of motherhood. Women who don't breastfeed

their babies are poor excuses for mothers. There is no excuse for bottle feeding

infants unless absolutely necessary like when the birth mother is actually dead

or dying. I'm neither. I'm not dead and I'm certainly not dying. I would cause

more emotional damage to my daughter if I stopped breastfeeding altogether than

any potential damage from glivec that nobody can explain. The thing is, they

(novartis, health professionals, people in general) don't know because there

isn't enough evidence for so they safely go against. Just so nobody sues.

I'm on glivec only because anything else nature offered was simply too weak but

as soon as I'm PCRU I'm dumping it and trying for my baby number 5!

From: Lottie Duthu

Sent: Friday, September 24, 2010 5:26 AM

CML

Subject: [ ] 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 2, 2010

" Women who don't breastfeed their babies are poor excuses for mothers. "

I take great offence to this statement.

Zavie

From: [mailto: ] On Behalf Of

d'Araille

Sent: September-24-10 7:01 PM

Subject: Re: [ ] Breast feeding while on Gleevec

Thank you Lottie. As you can imagine it wasn't an easy decision. I stayed

off glivec as long as I could when Miatilda was exclusively on the breast up

until she was almost 5 months. That gave me some time to get her used to the

bottle, artificial milk and start her on solids (much earlier than I would

in a normal situation) From the day I got on glivec (only because anything

else I tried failed to keep my WBC down consistently and my spleen became

enlarged again causing a lot of pain) Matilda started receiving a lot more

bottle feeds and solids but I can't entirely stop breastfeeding her. The

amount of glivec that gets through in breast milk is about 10% of the amount

contained in blood. It's my personal decision, doctors don't recommend it

simply because they can't say anything different what the novartis says.

Everybody covers themselves. I find it very difficult to have a proper

conversation with any doctor. They simply will not say anything that could

get them embroidered in court case. It's crazy!

Just to remind everybody, the health professional,s we supposed to have

trust in, told me the following:

a.. Baby out by cesarean around 30 weeks of gestation (she was born when she

supposed to be and where she supposed to be, at home (without midwife) after

41 weeks of pregnancy)

b.. Baby will be underweight and may need to be resuscitated (she was my

heaviest baby weighing 3.7 kg!)

c.. when leukapheresis fails to keep the WBC count down, you will have to go

on interferon, later on I was told by the same doctor that it never really

worked and caused a lot of pain! (I never took any drugs for CML during or

after birth up until Matilda was almost 5 months)

d.. if interferon is not working then hydroxyurea will have to be applied

(later I was told that can cause secondary cancer!) I've never been on it!

e.. when I was diagnosed at 22 weeks pregnant, me spleen was enlarged, I was

told it will not get back to normal until stronger drugs are used, guess

what! green tea sorted it!

f.. I was told drinking green tea in pregnancy may damage my baby! I DON'T

SEE ANY DAMAGE IN HER and I'm convinced what health professionals were

suggesting would definitely damage her health, she might not be what she is

today, a perfectly healthy 7 month old baby, not a baby that would have to

be in ICU for weeks after being cut out of me THAT I CALL A BIG FAT

NIGHTMARE!

g.. every time I went for consultation, before I decided to finally take

glivec, I was told if I don't go on glivec immediately I will become

resistant to it and die, so far my response to it was 'unexpectedly'

fabulous, my blood count is normal and I'm waiting to see what's my PCR

(just had it sent off yesterday, will know the result when I go for yet

another useless consultation oct 21st)

Matilda is perfectly normal baby. She was sitting up by herself at 5 and a

half months, by now she's 7 months and she's already crawling. She's smart

as anything (what can I say, I'm her mother!) and I expect her to speak as

early as my first daughter who was very early talker and could clearly

communicate with full sentences by the age of 2. I, myself see no serious

side effects from glivec, it's not even mild, It's... like non existent side

effects. I do wonder if an odd headache is from glivec or not sleeping

enough (I've got 4 kids) or muscle pain from actually pushing the double

buggy with basket full of shopping or again effect from glivec. I've not

noticed any change in Matilda since I went on glivec.

For me breastfeeding is the meaning of motherhood. Women who don't

breastfeed their babies are poor excuses for mothers. There is no excuse for

bottle feeding infants unless absolutely necessary like when the birth

mother is actually dead or dying. I'm neither. I'm not dead and I'm

certainly not dying. I would cause more emotional damage to my daughter if I

stopped breastfeeding altogether than any potential damage from glivec that

nobody can explain. The thing is, they (novartis, health professionals,

people in general) don't know because there isn't enough evidence for so

they safely go against. Just so nobody sues.

I'm on glivec only because anything else nature offered was simply too weak

but as soon as I'm PCRU I'm dumping it and trying for my baby number 5!

From: Lottie Duthu

Sent: Friday, September 24, 2010 5:26 AM

CML

Subject: [ ] 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 2, 2010

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