family

[Guest guest]

Got off phone with my sister and family just doesn't know how to

handle all this. I told my sister that if for any reason I did die

from all this I knew they wouldn't pursue anything legal about it

and I asked a the woman that sits in lobby to do whatever she could

about that State. Gov. building making us sick. My sis said " What

the H... are we suppose to do " . Sounds like a GUILTY concious to

me speaking. Please, anything would help even bring me food to eat

during my clean up would have been nice and helping me clean up etc

too. She can't get why I really can't eat nor have no appetite but

she gets Stressed just hearing me talk. Well, I'd love to be the

one hearing IT and not living IT. She is having a cookout for my 20

something nephew Sat. night and I said how exhausted I am and need

rest but haven't rested in years. " Well I'd like to see you " guess

to see if she can tell any difference in me. Probaly will go b/c

family will talk about me like Something Must be Wrong but not sure

WHAT if I don't go. You know we have better days and then BAD days

so hope that is a better one. Off to bed and I'm so fatigued and

not feeling great. These weather changes and going to that moldy

work place is rough. Got a N95 mask today and think I should start

wearing it at work but not going to be easy and no telling the

comments I will get either. I can't detox while breathing in more

poison daily!

Rhonda

[Guest guest]

Hi ,

There are many women who have had children with CML. It is much easier if

you are in deep remission (PCRU) but still possible if not. If the CML comes

back to a level where you must be treated for the CML, the drug Interferon

is used.

You need to speak to your doctor to see what he thinks and if he is prepared

to treat you if you get pregnant.

Zavie

Zavie (age 72)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

4.0 log reduction Dec/09

4.4 log reduction Apr/10

e-mail: <mailto:zmiller@...> zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

From: [mailto: ] On Behalf Of andrea

silveira

Sent: September-17-10 1:11 PM

Subject: [ ] Family

Ok, I have a dilemma. I am 29 years old and was DX 7 years ago on

Thanksgiving day. I have been with my husband for 10.5 years and we just

celebrated our 4th wedding Anniversary in July. I WANT A FAMILY. I am soooo

confused, I am on 400mg Gleevec and they are working, so I know it would not

be a wise move to get of my meds to carry a child. My husband doesn't want

to adopt, and we have looked into a surrogate and it can cost anywhere from

65k - 100k+. I am VERY grateful that I am doing well on Gleevac, but at the

same time I am angry, My MIL told me to kiss my dreams of being a mother

good bye ( I really hate her right now ) Anyone out there can help me? I am

also starting to question myself If I want a child only because I know I

cant have one?

[Guest guest]

Talk to a specialist about it. You might be able to take the 9 months off.

Others have done it.

[ ] Family

Ok, I have a dilemma. I am 29 years old and was DX 7 years ago on

Thanksgiving day. I have been with my husband for 10.5 years and we just

celebrated our 4th wedding Anniversary in July. I WANT A FAMILY. I am soooo

confused, I am on 400mg Gleevec and they are working, so I know it would not

be a wise move to get of my meds to carry a child. My husband doesn't want

to adopt, and we have looked into a surrogate and it can cost anywhere from

65k - 100k+. I am VERY grateful that I am doing well on Gleevac, but at the

same time I am angry, My MIL told me to kiss my dreams of being a mother

good bye ( I really hate her right now ) Anyone out there can help me? I am

also starting to question myself If I want a child only because I know I

cant have one?

[Guest guest]

Hello Chi

 

Yes she has had 2 since then a boy and a girl. I have been reading her blogs

since she was pregnant with her first, and I also read her book twice( great

book ). I always felt she has a little cushion to fall on, her youngest sister

is a match, both of my siblings are not :-(

I am not against adoption, unfortunately my in laws have filled his head up with

such nonsense that I believe he is starting to completely be against children

also. I have a whole bunch of co-workers here that have teenagers,not adopted

and trust me they have there days also. lol. Another one of my co-workers told

me that both he and his wife wanted no children and by the time they were 40

they regretted not having children so they adopted a baby girl ( 22 now ) and he

said she is the best thing ever. Thanks Chi, It feels great to be able to talk

in the group, kind of feels like this group of people are the ONLY ones that

know what I am going threw :-)

From: china neal <chimera46@...>

Subject: Re: [ ] Family

Date: Friday, September 17, 2010, 11:14 AM

 

-

A writer/editor  for Glamour magazine, Zammett, was diagnosed  with CML

at

23 and I think she has had two children since then.  If you google her you 

can

read her blog about her experience.  It is a very personal decision. I was

unable to have children due to an operation , so when i got married adoption was

our choice.  I have never regretted it....well she's a teenager now so I guess

there may be days. Seriously, she is a gift and I am a better person because of

her. 

As Zavie said you wouldn't be the first to have a child after dx.  I think it

is

important to have a good team of physicians to guide you on the journey.  There

must be some research about the level of risk, windows before reoccurance,

breast feeding, possible impact on babies etc. 

No doubt Mama Lottie will be providing them shortly- smile.

Best wishes and blessing for you .

Chi

________________________________

From: andrea silveira <formiga101@...>

Sent: Fri, September 17, 2010 10:11:07 AM

Subject: [ ] Family

 

Ok, I have a dilemma. I am 29 years old and was DX 7 years ago on Thanksgiving

day. I have been with my husband for 10.5 years and we just celebrated our 4th

wedding Anniversary in July. I WANT A FAMILY. I am soooo confused, I am on 400mg

Gleevec and they are working, so I know it would not be a wise move to get of my

meds to carry a child. My husband doesn't want to adopt, and we have looked into

a surrogate and it can cost anywhere from 65k - 100k+. I am VERY grateful that I

am doing well on Gleevac, but at the same time I am angry, My MIL told me to

kiss my dreams of being a mother good bye ( I really hate her right now ) Anyone

out there can help me? I am also starting to question myself If I want a child

only because I know I cant have one?

 

 

 

[Guest guest]

Play

slideshow<http://g.msn.com/5meen_us/171?path=/photomail/{3db1213d-2c1f-4c13-bdd5\

-b635a9147683} & image=44CCFED13C9A5455!393 & imagehi=44CCFED13C9A5455!391 & CID=49576\

17464446440533> Save all photos Want to save all these photos at once? Learn

how

<http://help.live.com/help.aspx?mkt=en-gb & project=WL_Mailv3 & querytype=keyword & qu\

ery=segami_lla_evas>

Online pictures are available for 30 days

Hi ,

I was diagnosed in my pregnancy (PCR 134%), never been on interferon during

pregnancy (just on green tea), had my very healthy 3.7kg baby 1 week overdue (on

my own, it was medically unassisted birth), breastfed exclusively up until I had

to go on glivec 3rd of July this year (after exhausting all alternative

possibilities), I'm still breastfeeding but only at night. My PCR before I went

on glivec was 136% so during the whole period since diagnosis in Oct '09 till

July '10 it went up 2%. Can't say if that's expected or unexpected as I'm not an

expert in the illness I just unwillingly have it. All I've got to say: Having

CML I delivered baby on my own. I was told by doctors she would have to be

delivered by c-section at 30 weeks. That's big enough for me. I don't even need

to go into what I actually manage to avoid! My perfectly healthy baby is 7

months tomorrow!

I'd say, go for it! Oh, and drink green tea as well as this will definitely keep

CML at bay as it did with me and I wasn't PCRU. The only problem is if you get

off glivec to get pregnant you may develop resistance to it (but not

necessarily)<http://public.blu.livefilestore.com/y1psBGuz7n22_6uAnqSScX-fV-ZyPfD\

tHbbANSOQ_bn2X1dKHDji8-aq4T8tOdARjC3t8ba987Ilr76yDYlSJrAwQ/DSC01200.JPG?download\

>

Matilda just few days ago

<http://public.blu.livefilestore.com/y1pfl3judpE_Zj_8YnAR3hkFtNAvDIQMcp_xEvjhL44\

Dh7wtiiOewkS7D965CIIDvKMF1X7X2urEjvhwBtSbi5B9w/DSC01212.JPG?download>

Matilda earlier this week

<http://public.blu.livefilestore.com/y1pqTKUPPaUvlRtDM4IVaemo5PwhY1c0hK3CVa4dEjq\

LBHFkeQcNoxcSD89G6GacyCam7xTK0CkcVTQn4Q0F1UTuw/DSC01151.JPG?download>

Matilda's cheeky smile

<http://public.blu.livefilestore.com/y1phxLMifoR5dQ0JNOLneCaA8IIXY8PG7HBwlf0bmvc\

gyVOgvF4KkfWyjn8KfKi2QTqZio7VM1zMZGakLLfx8upeQ/DSC00468.JPG?download>

My other daughters: Natalia and Mikaela

<http://public.blu.livefilestore.com/y1p0wODkxbW2GawIwaCvqPDl3Rn3oyFUuJEHJqlHmxA\

bFDZquhaZgkjPf6HUKbe-Kqs9bCoJQmS4KC9aI66-KNUMA/DSC00433.JPG?download>

My son Miko and his 2 sisters

<http://public.blu.livefilestore.com/y1pjWOhnPtyC_7741x28cZyBN8p3HFLr_d1lmPY2_9A\

bMHIqwPOHSnYeZetaGHONIixBWuerKJ-T2QzmoKtq6_V2A/DSC00947.JPG?download>

Me and Matilda

and find yourself in a tricky corner down the line. In the end it's your

decision whether you are going to risk your life to have your own baby or not,

doctors have nothing clever to say about it. They need to listen not dictate.

From: andrea silveira<mailto:formiga101@...>

Sent: Friday, September 17, 2010 7:20 PM

<mailto: >

Subject: RE: [ ] Family

Hi Zavie

I have spoke to my doctor she is 100% agaisnt it. I have been PCRU for about 5

years. Maybe time for anotheopinionon. Zavie do you know anyone other then

that has gone this route ( Youreferreded me to 's blog when she gopregnantnt

with :-) Still reading her posts, she was lucky to have been blessed with 2

) My husband and mother arterrifieded of me getting off Gleevac ( My grandmother

passed away during childbirth due tLeukemiaia, but I am trying to explain that

alot has changed since 1950)

From: Zavie <zmiller@...<mailto:zmiller%40sympatico.ca>>

Subject: RE: [ ] Family

<mailto:%40>

Date: Friday, September 17, 2010, 11:00 AM

Hi ,

There are many women who have had children with CML. It is much easier if

you are in deep remission (PCRU) but still possible if not. If the CML comes

back to a level where you must be treated for the CML, the drug Interferon

is used.

You need to speak to your doctor to see what he thinks and if he is prepared

to treat you if you get pregnant.

Zavie

Zavie (age 72)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

4.0 log reduction Dec/09

4.4 log reduction Apr/10

e-mail: <mailto:zmiller@...<mailto:zmiller%40sympatico.ca>>

zmiller@...<mailto:zmiller%40sympatico.ca>

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

From: <mailto:%40>

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

silveira

Sent: September-17-10 1:11 PM

<mailto:%40>

Subject: [ ] Family

Ok, I have a dilemma. I am 29 years old and was DX 7 years ago on

Thanksgiving day. I have been with my husband for 10.5 years and we just

celebrated our 4th wedding Anniversary in July. I WANT A FAMILY. I am soooo

confused, I am on 400mg Gleevec and they are working, so I know it would not

be a wise move to get of my meds to carry a child. My husband doesn't want

to adopt, and we have looked into a surrogate and it can cost anywhere from

65k - 100k+. I am VERY grateful that I am doing well on Gleevac, but at the

same time I am angry, My MIL told me to kiss my dreams of being a mother

good bye ( I really hate her right now ) Anyone out there can help me? I am

also starting to question myself If I want a child only because I know I

cant have one?

[Guest guest]

Hello Sue

 

Email address is formiga101@...

 

Thanks

From: Sue <hollie@...>

Subject: [ ] Re: Family

Date: Friday, September 17, 2010, 11:19 PM

 

If you email me privately - I will send you contact information from another

CMLer who was diagnosed with CML while pregnant and went onto have a gorgeous

little girl who is now 2 years old.

Sue

__________ Information from ESET NOD32 Antivirus, version of virus signature

database 5458 (20100917) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com

[Guest guest]

Thanks Sue

 

I have an appt, with her again this week, I have been talking about wanting to

change doctors for a long time, it might be time to actually do it :-)

 

From: Sue <hollie@...>

Subject: [ ] Re:Family

Date: Friday, September 17, 2010, 11:17 PM

 

Hi

There are heaps of young women now having families while having CML

Most are PCRU and then decide to have a family

Quite a few young women were diagnosed while pregnant and did not abort.

Having said this - to carry a pregnancy with CML is not for the faint hearted

and you need to have all the facts and what type of treatment and both the CML

and Pregnancy

management can be tricky. The long term CML management while pregnant will need

to have

continual monitoring.

But for your specialist to say throw your dreams away - change your specialist

and get one

who will share care you with a top of the game obstetrician and you will need

both.

Cheers

Sue

__________ Information from ESET NOD32 Antivirus, version of virus signature

database 5458 (20100917) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com

[Guest guest]

Thanks , I will post on www. newcmldrug.com  First step for me get a new

doctor, I havent little her to much anyways for the last few years, for

different reasons.

 

From: hey00nanc <ncogan@...>

Subject: [ ] Re: Family

Date: Friday, September 17, 2010, 9:23 PM

 

>

> Hi Zavie

>  

> I have spoke to my doctor she is 100% agaisnt it. I have been PCRU for about 5

years. Maybe time for anotheopinionon. Zavie do you know anyone other then

that has gone this route ( Youreferreded me to 's blog when she gopregnantnt

with :-) Still reading her posts, she was lucky to have been blessed with 2

) My husband and mother arterrifieded of me getting off Gleevac ( My grandmother

passed away during childbirth due tLeukemiaia, but I am trying to explain that

alot has changed since 1950)

______________________________

Hi ,

This is NOT your doctor's life. She probably has the kids she wants or maybe she

did not want any.

If you have been PCRU for 5 years, I think you are a GOOD candidate to go

through a pregnancy with a top cml doctor and a good gyn. There are others who

have gone through pregnancy by choice or just because they did get pregnant.

I am not sure how many on this list, but post a question on CML Talk on Jerry's

list.......www. newcmldrug.com (no spaces).

I know there have been pregnancies on that list.

Because your doctor is so set in her answer, and not willing to explore this

option for you, she is NOT the right doctor for you. Find where you can see a

cml specialist (or one with strong credentials) close to you.

Your grandmother might have gotten an acute leukemia during her

pregnancy....that is totally different. When you have a supportive doctor, your

mother and husband will come around.

Don't give up your dream without more information.

C.

[Guest guest]

Thanks , doesn't feel that impossible. I am glad that both you and you

daugther are doing well. Better start drinking green tea now, and learning to

like it :-)

 

P.S - Beautiful Pictures

 

From: Zavie <zmiller@...<mailto:zmiller%40sympatico.ca>>

Subject: RE: [ ] Family

<mailto:%40>

Date: Friday, September 17, 2010, 11:00 AM

Hi ,

There are many women who have had children with CML. It is much easier if

you are in deep remission (PCRU) but still possible if not. If the CML comes

back to a level where you must be treated for the CML, the drug Interferon

is used.

You need to speak to your doctor to see what he thinks and if he is prepared

to treat you if you get pregnant.

Zavie

Zavie (age 72)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

4.0 log reduction Dec/09

4.4 log reduction Apr/10

e-mail: <mailto:zmiller@...<mailto:zmiller%40sympatico.ca>>

zmiller@...<mailto:zmiller%40sympatico.ca>

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

From: <mailto:%40>

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

silveira

Sent: September-17-10 1:11 PM

<mailto:%40>

Subject: [ ] Family

Ok, I have a dilemma. I am 29 years old and was DX 7 years ago on

Thanksgiving day. I have been with my husband for 10.5 years and we just

celebrated our 4th wedding Anniversary in July. I WANT A FAMILY. I am soooo

confused, I am on 400mg Gleevec and they are working, so I know it would not

be a wise move to get of my meds to carry a child. My husband doesn't want

to adopt, and we have looked into a surrogate and it can cost anywhere from

65k - 100k+. I am VERY grateful that I am doing well on Gleevac, but at the

same time I am angry, My MIL told me to kiss my dreams of being a mother

good bye ( I really hate her right now ) Anyone out there can help me? I am

also starting to question myself If I want a child only because I know I

cant have one?

[Guest guest]

do you ever go to Jerry Mayfield's site, it is :  cmlnewdrug.com.

There is a new discussion starting today, on pregnancy, you might check it out

even though you have made your decision.  there will be a zillion responses to

the young lady named , I am sure, goodluck.  bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: Zavie <zmiller@...<mailto:zmiller%40sympatico.ca>>

Subject: RE: [ ] Family

<mailto:%40>

Date: Friday, September 17, 2010, 11:00 AM

Hi ,

There are many women who have had children with CML. It is much easier if

you are in deep remission (PCRU) but still possible if not. If the CML comes

back to a level where you must be treated for the CML, the drug Interferon

is used.

You need to speak to your doctor to see what he thinks and if he is prepared

to treat you if you get pregnant.

Zavie

Zavie (age 72)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

4.0 log reduction Dec/09

4.4 log reduction Apr/10

e-mail: <mailto:zmiller@...<mailto:zmiller%40sympatico.ca>>

zmiller@...<mailto:zmiller%40sympatico.ca>

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

From: <mailto:%40>

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

silveira

Sent: September-17-10 1:11 PM

<mailto:%40>

Subject: [ ] Family

Ok, I have a dilemma. I am 29 years old and was DX 7 years ago on

Thanksgiving day. I have been with my husband for 10.5 years and we just

celebrated our 4th wedding Anniversary in July. I WANT A FAMILY. I am soooo

confused, I am on 400mg Gleevec and they are working, so I know it would not

be a wise move to get of my meds to carry a child. My husband doesn't want

to adopt, and we have looked into a surrogate and it can cost anywhere from

65k - 100k+. I am VERY grateful that I am doing well on Gleevac, but at the

same time I am angry, My MIL told me to kiss my dreams of being a mother

good bye ( I really hate her right now ) Anyone out there can help me? I am

also starting to question myself If I want a child only because I know I

cant have one?

[Guest guest]

Thank you for reminding me of Jerry's site. I will surely check it, too as I am

also trying to get pregnant.

Green tea- I drink green tea almost every day. Mostly in the evening before I go

to bed. It's working for me. In fact, my last PCR was one of the lowest I have

ever had.

From: Zavie <zmiller@...<mailto:zmiller%40sympatico.ca>>

Subject: RE: [ ] Family

<mailto:%40>

Date: Friday, September 17, 2010, 11:00 AM

Hi ,

There are many women who have had children with CML. It is much easier if

you are in deep remission (PCRU) but still possible if not. If the CML comes

back to a level where you must be treated for the CML, the drug Interferon

is used.

You need to speak to your doctor to see what he thinks and if he is prepared

to treat you if you get pregnant.

Zavie

Zavie (age 72)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

4.0 log reduction Dec/09

4.4 log reduction Apr/10

e-mail: <mailto:zmiller@...<mailto:zmiller%40sympatico.ca>>

zmiller@...<mailto:zmiller%40sympatico.ca>

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

From: <mailto:%40>

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

silveira

Sent: September-17-10 1:11 PM

<mailto:%40>

Subject: [ ] Family

Ok, I have a dilemma. I am 29 years old and was DX 7 years ago on

Thanksgiving day. I have been with my husband for 10.5 years and we just

celebrated our 4th wedding Anniversary in July. I WANT A FAMILY. I am soooo

confused, I am on 400mg Gleevec and they are working, so I know it would not

be a wise move to get of my meds to carry a child. My husband doesn't want

to adopt, and we have looked into a surrogate and it can cost anywhere from

65k - 100k+. I am VERY grateful that I am doing well on Gleevac, but at the

same time I am angry, My MIL told me to kiss my dreams of being a mother

good bye ( I really hate her right now ) Anyone out there can help me? I am

also starting to question myself If I want a child only because I know I

cant have one?