Re: Breast feeding while on Gleevec

October 4, 2010

Good for you Zavie, I have 4 children . I breast fed 3 , the last I was not able

to, She was at sick kids hospital for a month and I had 3 at home and did not

drive...I know I'm a great Mom and Grandma!!!!

Eva

From: Zavie

Sent: Saturday, October 02, 2010 8:04 PM

Subject: RE: [ ] Breast feeding while on Gleevec

Because you don't know our situation.

My wife is a wonderful mother. We have two girls ( ages 37 and 40). Our

first daughter was breast fed. Our second daughter didn't leave hospital for

many days. She was born severely jaundiced because of an ABO blood factor

problem and had to remain in hospital. My wife pumped her breast milk but it

wasn't enough to nourish her. The doctors at the hospital made the decision

to feed her cow's milk formula to save her life. We took the doctor's advice

to continue with the formula.

This is a CML support group list, not a list for a La Leche League zealot.

You owe us all an apology for your outlandish statement.

Zavie

From: [mailto: ] On Behalf Of

d'Araille

Sent: October-02-10 4:58 PM

Subject: Re: [ ] Breast feeding while on Gleevec

WHY?

From: Zavie

Sent: Saturday, October 02, 2010 1:27 PM

<mailto:%40>

Subject: RE: [ ] Breast feeding while on Gleevec

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

I take great offence to this statement.

Zavie

From: <mailto:%40>

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

d'Araille

Sent: September-24-10 7:01 PM

<mailto:%40>

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 7, 2010

We are all here because of this illness that we have--we may have disagreements,

but we need to support and love each other. I truly understand 's feelings

about breastfeeding--I breastfed all my four children and absolutely treasured

the experience. However, my dear sister, did not choose to do so. I love her,

I treasure her, and her children turned out wonderfully--healthy and mentally

sound in every way. There is no way I can ever judge another mother's decisions

or experiences. We have to be ready to back each other up, and so I back up

. I know she is feeling emotional about this subject. We all have our

Achilles heel.

Please don't leave the list. There are many of us who are older, younger, and

somehow we find a common ground. We will be lessened if you leave us.

Vicki

> >

> > ,

> >

> > 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@>

> > <mailto:%40>;

<mailto:%40>;

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

> > Subject: Re: [ ] Breast feeding while on Gleevec

> >

> > 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

> > <mailto:%40>;

<mailto:%40>;

> > 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 7, 2010

The truth is this list is lifesaving. So much information and so much history.

We have members who have collectively experienced every aspect of this disease

from before the time of Gleevec and right through the second and third

generation drugs and into the newest clinical trials. This is a place for

everyone.We probably won't all agree on many things( politics, religion, child

rearing, fashion, music- the list goes on) but we do all agree that we share

this CML journey and in one way or another and we are all fighting for our

lives. I have to believe that nothing is more important than our lives- on this

I believe we all agree.

My hope is that in time those who left will return. As Vicki said, we are

lessened. It is less important how long we have been on this earth than how

much more we will remain. I said a prayer of thanks when i found this group.

Chi

________________________________

From: Vicki <vickistu@...>

Sent: Wed, October 6, 2010 11:46:22 PM