Re: Re: getting off Gleevec

[Guest guest]

Nicely said .

From: G <ginademase@...>

Subject: [ ] Re: getting off Gleevec

Date: Thursday, January 28, 2010, 4:56 AM

 

hi jenn,

i was thinking the same thing you were, going off gleevec, you start thinking of

things like " do i really need this anymore " ? i understand. i was dx in march

2000. its been 10 years for me now. after being on gleevec (feb 2002) for 4

months i've been pcr undetectable for almost 8 years now. i went off for a

couple weeks just cuz i felt like it, and then i freaked out and started taking

it again, and i was a basket case until i got my pcr undetectable again in

october. i take it every day for now. maybe in the future i will go off, but the

way the world is today i cant take anymore stress so i'm not gonna rock the boat

just yet. there were studies in italy and australia. they took some people off

of gleevec who were pcr-neg for at least 2 years. 1/2 stayed pcr-neg and 1/2 cml

came back, but when they went back on gleevec, their remission returned. the 1/2

that stayed pcr-neg previously had interferon for a while before they took

gleevec. so its seems that

interferon has a positive role in staying clean. i was on interferon for 1.5

years before they put me on gleevec, the only good thing was i lost a lot of

weight, but mentally it wasnt good at all, i am glad i was on it though after

hearing about these studies. how would you feel if you went off and cml came

back? you'd probably wanna kick urself, and your life is worth more than taking

a chance. so far, there are no long term side effects from gleevec, so my advice

to you (as i said to myself). take those golden tablets, be thankful and enjoy

life without thinking of cml everyday. we are blessed with these meds. there are

so many people out there with no options, we r the lucky ones. God bless

you,gina

> >

> > Hello all! I've been on Gleevec for CML since April 2003. Within 9 months I

reached CCR and have stayed there ever since. I still experience bone and muscle

pain, muscle spasms, fatigue, and various other side effects. I spoke to my onc

about stopping the Gleevec and he was not happy with that. He seems to think

that by doing this I'm risking my life. I feel that IF the CML were to return I

can easily go back on Gleevec or I know I have other options. Has anyone else

gone off Gleevec and stayed in remission without the aid of other meds? I live

in Jersey. Can anyone reccomend a CML specialist? Thanks for your help!

> > Jenn

> ____________ _________ _________ ______

>

> Hi Jenn,

> You say you are CCR......what about PCR testing? Once you are CCR, you need to

do PCR testing to see how well your leukemia load is further reducing. Did you

onc keep testing for CCR with bone marrow biopsies? or some other test?

>

> A CMLer deciding to go off Gleevec (or other drug) is like someone with severe

diabetes just deciding to stop taking insulin!! It is a bit like Russian

roulette. When you stop the drug, gradually (or faster) the leukemia cells will

multiply and you do not have a guarantee that the drug will work when you go

back on it. The cells could mutate and become resistant to Gleevec and even

other drugs.

>

> The way that you deal with CML is to keep the leukemia cells at bay and

stable...that is all we have right now, there is not a cure. Some people in very

controlled studies working with CML specialists are seeing if they can come off

drugs.....but these are people who have tested PCRU (undetected on this very

sensitive test) for 2+ years before they stop the drug and I am not sure you

have even been having this test (you do not mention it). There are ways to try

to deal with side effects that might help. And I think it would be good if you

could consult with a CML specialist.

>

> C.

>

[Guest guest]

Hi,

I've been diagnosed with CML in Oct 2009 in my 22nd week of pregnancy. Because

of the baby I couldn't start gleevec or any other drug and the only option at

that point was leaukapheresis, but that was only a temporary measure (this does

not treat CML, only removes excess of white blood cells from the blood,

unfortunately also gets rid of too many red cells as well causing severe

anemia). I was told I will have to go on alpha interfereon when leaukapheresis

is no longer possible and that my baby will have to be delivered before 30 weeks

by caesarian section in order to get me started on gleevec. In the meantime me

and my husband were searching for any other alternative options available and we

discovered that there is a very powerful antioxidant in green tea called EGCG

(Epigallo-Catechin-3 Gallate) that could help lower the amount of cancerous

cells in blood. I thought drinking green tea can't harm me or the baby and if it

can help why not give it a try. I started on 3 to 4 mugs a day immediately just

guessing how much I may need for it to take effect and it worked. Today I'm 38

weeks pregnant still happily awaiting my baby number 4. I'm not planning to go

on gleevec at all IF my blood count remains stable after the baby is born (not

long to wait now!). I will also request PCR test to see if EGCG has actually did

what gleevec does. I must admit it's beyond my understanding as to why just

drinking green tea has worked so far and unfortunately medical establishment is

very ignorant of and opposed to this idea as it's not been through medical

trials and proven scientifically to keep the leukemic cells in check. Have I

taken a big risk? I suppose I did but I had to for my baby and now it may be for

other people as well. It's a bit like I've taken charge of my cancer leaving

doctors to themselves. I would not ask anybody to stop medication and just start

drinking green tea because there is not enough evidence it would work for

everybody (just like gleevec may not work and will cause different side effects

in each person taking it) , but I encourage everybody to reach further than what

medicine has to offer. I don't need to mention there is no side effects

associated with green tea apart from its high level of caffeine, which if at

all, keeps me awake till late evening ( but people with very sensitive stomachs

may find it irritating it even further, though I came across EGCG in tabs which

could solve this problem). I truly hope it won't be necessary for me to even

start gleevec. The reason I don't want to is I'm 35, mother of 3, soon mother of

4 and I don't want to be debilitated by this drug. I can't afford it! I need to

bring my kids up with clear mind, not a fuzzy one. I don't want to tell them,

mummy can't do this or that because of pains or because I have to lay down. I

don't just want to just observe them growing up. I need to and want to be there

all the way, every day reading books, riding bikes, explaining things, doing

normal stuff. I never though I would even have that chance to try something

different sucessfully apart from gleevec, chemo or transplant. As long as it

works. I do hope this is the solution everybody is looking for.

From: hey00nanc

Sent: Thursday, January 28, 2010 6:20 AM

Subject: [ ] Re: getting off Gleevec

>

> Hello all! I've been on Gleevec for CML since April 2003. Within 9 months I

reached CCR and have stayed there ever since. I still experience bone and muscle

pain, muscle spasms, fatigue, and various other side effects. I spoke to my onc

about stopping the Gleevec and he was not happy with that. He seems to think

that by doing this I'm risking my life. I feel that IF the CML were to return I

can easily go back on Gleevec or I know I have other options. Has anyone else

gone off Gleevec and stayed in remission without the aid of other meds? I live

in Jersey. Can anyone reccomend a CML specialist? Thanks for your help!

> Jenn

____________________________________

Hi Jenn,

You say you are CCR......what about PCR testing? Once you are CCR, you need to

do PCR testing to see how well your leukemia load is further reducing. Did you

onc keep testing for CCR with bone marrow biopsies? or some other test?

A CMLer deciding to go off Gleevec (or other drug) is like someone with severe

diabetes just deciding to stop taking insulin!! It is a bit like Russian

roulette. When you stop the drug, gradually (or faster) the leukemia cells will

multiply and you do not have a guarantee that the drug will work when you go

back on it. The cells could mutate and become resistant to Gleevec and even

other drugs.

The way that you deal with CML is to keep the leukemia cells at bay and

stable...that is all we have right now, there is not a cure. Some people in very

controlled studies working with CML specialists are seeing if they can come off

drugs.....but these are people who have tested PCRU (undetected on this very

sensitive test) for 2+ years before they stop the drug and I am not sure you

have even been having this test (you do not mention it). There are ways to try

to deal with side effects that might help. And I think it would be good if you

could consult with a CML specialist.

C.

[Guest guest]

Hi ,I am interested in trying the tea you mention. I am 56 and was diagnosed

in August 2008. I've been on Gleevec ever since. I can relate to the things you

say about how you want to be in life and with your children. Gleevec has been

difficult for me, and I am beginning to have other health issues because of the

Gleevec. I don't see Gleevec or any of the other drugs as a long term option for

me because the quality of my life has changed so much.

This is not to say that I am not grateful for the Gleevec. It has kept me alive.

However, I have continued, as you, to discover alternative methods to actually

heal the cml. I know that many believe this is not possible, so with all due

respect to everyone on this journey and their respective wisdom and personal

choice, I put this latest bit of information that I've decided to try out there

for anyone who might be considering other things.

I have started a macrobiotic diet over the last week. Already there is a

noticieable differrence in the Gleevec side effects. I'm sleeping better and

most of my muscle and bone pain has gone away. Also, my muscles don't seem to be

cramping up as they were before. 

Macrobiotics is not new to me. It's an interesting philosophy and way of eating

that consists of grains, beans, sea vegetables, miso soup, and vegetables. No

animal products. The macrobiotic experts say that leukemia is the easiest cancer

to cure with diet because macrobiotics is all about the blood.. I'm on my way to

Philadelphia for a macrobiotic intensive and consultation with a specialist. My

goal is to stop the Gleevec as soon as it feels right to me. I will discuss it

with my oncologist when I return from Philadelphia. I also work with a

naturopath and will have her involved as well. There is a woman who cured her

cml with a macrobiotic diet over 25 years ago. 

I hope that your pcr test shows that the tea has indeed worked. I would have

that  test done asap because the peripheral blood test can be clear even when

there is philadelphia chromasome present. In fact, my doctor told me that most

people have it in the bone marrow long before it ever shows up  in a routine

blood panel.

Thanks for posing. I wish you well and will watch for further posts.

Take care,

Prayers and Blessings,

Kim

 

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

Subject: Re: [ ] Re: getting off Gleevec

Date: Thursday, January 28, 2010, 11:43 AM

 

Hi,

I've been diagnosed with CML in Oct 2009 in my 22nd week of pregnancy. Because

of the baby I couldn't start gleevec or any other drug and the only option at

that point was leaukapheresis, but that was only a temporary measure (this does

not treat CML, only removes excess of white blood cells from the blood,

unfortunately also gets rid of too many red cells as well causing severe

anemia). I was told I will have to go on alpha interfereon when leaukapheresis

is no longer possible and that my baby will have to be delivered before 30 weeks

by caesarian section in order to get me started on gleevec. In the meantime me

and my husband were searching for any other alternative options available and we

discovered that there is a very powerful antioxidant in green tea called EGCG

(Epigallo-Catechin- 3 Gallate) that could help lower the amount of cancerous

cells in blood. I thought drinking green tea can't harm me or the baby and if it

can help why not give it a

try. I started on 3 to 4 mugs a day immediately just guessing how much I may

need for it to take effect and it worked. Today I'm 38 weeks pregnant still

happily awaiting my baby number 4. I'm not planning to go on gleevec at all IF

my blood count remains stable after the baby is born (not long to wait now!). I

will also request PCR test to see if EGCG has actually did what gleevec does. I

must admit it's beyond my understanding as to why just drinking green tea has

worked so far and unfortunately medical establishment is very ignorant of and

opposed to this idea as it's not been through medical trials and proven

scientifically to keep the leukemic cells in check. Have I taken a big risk? I

suppose I did but I had to for my baby and now it may be for other people as

well. It's a bit like I've taken charge of my cancer leaving doctors to

themselves. I would not ask anybody to stop medication and just start drinking

green tea because there is not enough

evidence it would work for everybody (just like gleevec may not work and will

cause different side effects in each person taking it) , but I encourage

everybody to reach further than what medicine has to offer. I don't need to

mention there is no side effects associated with green tea apart from its high

level of caffeine, which if at all, keeps me awake till late evening ( but

people with very sensitive stomachs may find it irritating it even further,

though I came across EGCG in tabs which could solve this problem). I truly hope

it won't be necessary for me to even start gleevec. The reason I don't want to

is I'm 35, mother of 3, soon mother of 4 and I don't want to be debilitated by

this drug. I can't afford it! I need to bring my kids up with clear mind, not a

fuzzy one. I don't want to tell them, mummy can't do this or that because of

pains or because I have to lay down. I don't just want to just observe them

growing up. I need to and want to be

there all the way, every day reading books, riding bikes, explaining things,

doing normal stuff. I never though I would even have that chance to try

something different sucessfully apart from gleevec, chemo or transplant. As long

as it works. I do hope this is the solution everybody is looking for.

From: hey00nanc

Sent: Thursday, January 28, 2010 6:20 AM

groups (DOT) com

Subject: [ ] Re: getting off Gleevec

>

> Hello all! I've been on Gleevec for CML since April 2003. Within 9 months I

reached CCR and have stayed there ever since. I still experience bone and muscle

pain, muscle spasms, fatigue, and various other side effects. I spoke to my onc

about stopping the Gleevec and he was not happy with that. He seems to think

that by doing this I'm risking my life. I feel that IF the CML were to return I

can easily go back on Gleevec or I know I have other options. Has anyone else

gone off Gleevec and stayed in remission without the aid of other meds? I live

in Jersey. Can anyone reccomend a CML specialist? Thanks for your help!

> Jenn

____________ _________ _________ ______

Hi Jenn,

You say you are CCR......what about PCR testing? Once you are CCR, you need to

do PCR testing to see how well your leukemia load is further reducing. Did you

onc keep testing for CCR with bone marrow biopsies? or some other test?

A CMLer deciding to go off Gleevec (or other drug) is like someone with severe

diabetes just deciding to stop taking insulin!! It is a bit like Russian

roulette. When you stop the drug, gradually (or faster) the leukemia cells will

multiply and you do not have a guarantee that the drug will work when you go

back on it. The cells could mutate and become resistant to Gleevec and even

other drugs.

The way that you deal with CML is to keep the leukemia cells at bay and

stable...that is all we have right now, there is not a cure. Some people in very

controlled studies working with CML specialists are seeing if they can come off

drugs.....but these are people who have tested PCRU (undetected on this very

sensitive test) for 2+ years before they stop the drug and I am not sure you

have even been having this test (you do not mention it). There are ways to try

to deal with side effects that might help. And I think it would be good if you

could consult with a CML specialist.

C.

[Guest guest]

Is green tea good for cml patient on gleevec. Please advise as I saw email say

that green tea stop gleevec works

T

Sent from my Verizon Wireless BlackBerry

[ ] Re: getting off Gleevec

Thank you all for your advice and information! I will be seeing a new CML

specialist the middle of Feb. I will also be drinking more green tea and

looking into finding a nutritionist to help me with a more homiopathic diet. I

understand that I run the risk of CML coming back, but I am looking forward to

at least a few pain-free days. (FYI- I've been in PCRU for 5 1/2 years.) As

for the anxeity of not taking the Gleevec, I'd feel I'd rather deal with that,

then the stress of losing my memory and all the pain I'm going through right

now. Even if it only lasts a little while, I just want a chance to see what my

body can do on its own. If the leukemia starts to come back, I will go right

back on the Gleevec, but I want the chance to find out. And who knows, maybe

one day I can become someone's mommy! Thanks again and I will let you know

what happens after my appointment!

Jenn

[Guest guest]

Good Luck Jenn, and be careful. I was DX in 2003, and even though I want to be

someones mommy also, I just think its a huge risk.

 

Have you been reading up on 's story?

 

From: JennE <cml4103@...>

Subject: [ ] Re: getting off Gleevec

Date: Thursday, January 28, 2010, 2:10 PM

 

Thank you all for your advice and information! I will be seeing a new CML

specialist the middle of Feb. I will also be drinking more green tea and looking

into finding a nutritionist to help me with a more homiopathic diet. I

understand that I run the risk of CML coming back, but I am looking forward to

at least a few pain-free days. (FYI- I've been in PCRU for 5 1/2 years.) As for

the anxeity of not taking the Gleevec, I'd feel I'd rather deal with that, then

the stress of losing my memory and all the pain I'm going through right now.

Even if it only lasts a little while, I just want a chance to see what my body

can do on its own. If the leukemia starts to come back, I will go right back on

the Gleevec, but I want the chance to find out. And who knows, maybe one day I

can become someone's mommy! Thanks again and I will let you know what happens

after my appointment!

Jenn

[Guest guest]

Yes, she just gave birth to her second child, and healthy little girl, just a

few weeks ago.

Here is her new blog if you are interested

 

http://www.facebook.com/l.php?u=http%3A%2F%2Fforums.parenting.com%2Fblogs%2Fproj\

ect-pregnancy%2Fposts%2F & h=52ba029afeb90a71e0e26b8e085f2425

From: JennE <cml4103@...>

Subject: [ ] Re: getting off Gleevec

Date: Saturday, January 30, 2010, 9:40 AM

 

Thanks and I have every intention of being careful. I haven't read too much

lately about , but I do know she had a healthy first pregnancy. (I'm

assuming you're talking about the Glamour mag. writer, right?)

Jenn

>

>

> From: JennE <cml4103@... >

> Subject: [ ] Re: getting off Gleevec

> groups (DOT) com

> Date: Thursday, January 28, 2010, 2:10 PM

>

>

>  

>

>

>

>

> Thank you all for your advice and information! I will be seeing a new CML

specialist the middle of Feb. I will also be drinking more green tea and looking

into finding a nutritionist to help me with a more homiopathic diet. I

understand that I run the risk of CML coming back, but I am looking forward to

at least a few pain-free days. (FYI- I've been in PCRU for 5 1/2 years.) As for

the anxeity of not taking the Gleevec, I'd feel I'd rather deal with that, then

the stress of losing my memory and all the pain I'm going through right now.

Even if it only lasts a little while, I just want a chance to see what my body

can do on its own. If the leukemia starts to come back, I will go right back on

the Gleevec, but I want the chance to find out. And who knows, maybe one day I

can become someone's mommy! Thanks again and I will let you know what happens

after my appointment!

> Jenn

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