RE: Amazing news!!

[Guest guest]

Patti:

That is a wonderful post. I hope you have continued success!!!!

I also hope we get another YIPEE from Zavie.

Sincerely,

Matt

Zero Club #1078

ville, Florida

Dx January of 2005

Gleevec since March of 2005

Treated at MD

Father of 3

In a message dated 10/31/2007 10:27:47 P.M. Eastern Standard Time,

psimbulan@... writes:

This is my first post to this group although I have been monitoring all of

your information for several months. I am so thankful for the amazing

information all of you share with everyone. It is so comforting to hear that

others

are going through the exact same side effects both physically and emotionally

that I am experiencing. I don't feel so alone.

I want to share my journey so far and the amazing news I received today.

I was dx March 29, 2007 after having a routine CBC because I was feeling so

exhausted and couldn't seem to shake a respiratory infection. Well, when my

WBC came back 173,000 my doctor told me he suspected CML and sent me to a

hematology oncologist for further testing and confirmation of the diagnosis.

After another, CBC and FISH the diagnosis was confirmed and my CML journey

began. Like everyone else I was devasted and very depressed.

My onc did do a Quant. PCR and my results came back 10.981 with a -0.424 log

reduction. Of course at the time I didn't have a clue what this meant. I

have been able to learn from this group and others exactly what all of the

tests

mean.

I began taking Gleevec 400 mg on April 10, 2007. Except for a few side

effects things seemed to be going well and my counts responded very quickly

with

my WBC going down to 18, 000. I had my first BMAon April 18 and at that

appointment noticed that I was starting to get a rash. (My BMA came back

showing

the PH chromasome evident metaphases analyzed) The rash got very severe with

blistering on my arms and legs and

really bad edema in my feet, ankles and legs. Then my eyes and face started

to swell. My onc took me off Gleevec for several weeks until the rash got

better. I did try to go back on Gleevec at a lower dose but the rash started to

return so my onc decided that I was allergic to Gleevec and discontinued the

medication. Needless to say I was devastated and very frightened. Gleevec was

supposed to be my magic pill to get me to a complete response.

My onc then told me he wanted me to start Sprycel 100mg daily and see how I

responded to this therapy. On June 9th I started taking Sprycel 100mg once a

day. The side effects were pretty minimal with no rash but some nausea and

diar. My counts responded almost immediately and after two weeks was down to

normal. The only problem with Sprycel is that it took my counts too low

especially my RBC. When I started to experience some shortness of breath, my

onc cut

my dose in half to 50 mg daily. An xray showed that I did not have any

plueral effusion which is sometimes a side effect of Sprycel so that was a

relief.

But once again I was afraid that I would not be able to tolerate the Sprycel

either and then what. Fortunately I have been gradually increasing my dosage

and am now taking 80 mg daily. Things seem to be leveling off at that dosage.

At my last appointment (two weeks ago) my onc did another PCR test. Today I

went in to see him and he showed me my results. My PCR was 0.000!!! I was

stunned and ecstatic at the news. To quote the report " The real time assay

shows

no evidence of expression of the BCR-ABL fusion transcript..At my last

appointment (two weeks ago) my onc did another PCR test. Today I went in to see

him and he showed me my results. My PCR was 0.000!!! I was stunned and

ecstatic at the news. To quote the report " The real time assay shows no

evidence of

expression of the BCR-ABL fusion transcript..<WBR>. " Of course I know this

does not mean I'm cured but this is as good as it gets short of a cure. I am

truly b

I share this information to all of you let you know that if I can do it so

can you!! We have so much to be hopeful for and I'm confident in the not too

distant future they will find a cure for this disease without having a BMT.

Keep the faith and pray alot. Thank you for letting me share this amazing

news!!

Patti S

[Non-text portions of this message have been removed]

************************************** See what's new at http://www.aol.com

[Guest guest]

O!!! YIPPEEE!!!

Number 1122 in the Zero Club

Zavie

Thank you for posting. A great story and a perfect example of how fortunate

we are to have more than one therapy for CML.

Zavie

Zavie (age 69)

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

3.2 log reduction Jun/07

3.6 log reduction Sep/07

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of

PATRICE SIMBULAN

Sent: October 31, 2007 11:26 PM

Subject: [ ] Amazing news!!

This is my first post to this group although I have been monitoring all of

your information for several months. I am so thankful for the amazing

information all of you share with everyone. It is so comforting to hear that

others are going through the exact same side effects both physically and

emotionally that I am experiencing. I don't feel so alone.

I want to share my journey so far and the amazing news I received today.

I was dx March 29, 2007 after having a routine CBC because I was feeling so

exhausted and couldn't seem to shake a respiratory infection. Well, when my

WBC came back 173,000 my doctor told me he suspected CML and sent me to a

hematology oncologist for further testing and confirmation of the diagnosis.

After another, CBC and FISH the diagnosis was confirmed and my CML journey

began. Like everyone else I was devasted and very depressed.

My onc did do a Quant. PCR and my results came back 10.981 with a -0.424 log

reduction. Of course at the time I didn't have a clue what this meant. I

have been able to learn from this group and others exactly what all of the

tests mean.

I began taking Gleevec 400 mg on April 10, 2007. Except for a few side

effects things seemed to be going well and my counts responded very quickly

with my WBC going down to 18, 000. I had my first BMAon April 18 and at that

appointment noticed that I was starting to get a rash. (My BMA came back

showing the PH chromasome evident metaphases analyzed) The rash got very

severe with blistering on my arms and legs and

really bad edema in my feet, ankles and legs. Then my eyes and face started

to swell. My onc took me off Gleevec for several weeks until the rash got

better. I did try to go back on Gleevec at a lower dose but the rash started

to return so my onc decided that I was allergic to Gleevec and discontinued

the medication. Needless to say I was devastated and very frightened.

Gleevec was supposed to be my magic pill to get me to a complete response.

My onc then told me he wanted me to start Sprycel 100mg daily and see how I

responded to this therapy. On June 9th I started taking Sprycel 100mg once a

day. The side effects were pretty minimal with no rash but some nausea and

diar. My counts responded almost immediately and after two weeks was down to

normal. The only problem with Sprycel is that it took my counts too low

especially my RBC. When I started to experience some shortness of breath, my

onc cut my dose in half to 50 mg daily. An xray showed that I did not have

any plueral effusion which is sometimes a side effect of Sprycel so that was

a relief. But once again I was afraid that I would not be able to tolerate

the Sprycel either and then what. Fortunately I have been gradually

increasing my dosage and am now taking 80 mg daily. Things seem to be

leveling off at that dosage.

At my last appointment (two weeks ago) my onc did another PCR test. Today I

went in to see him and he showed me my results. My PCR was 0.000!!! I was

stunned and ecstatic at the news. To quote the report " The real time assay

shows no evidence of expression of the BCR-ABL fusion transcript... " Of

course I know this does not mean I'm cured but this is as good as it gets

short of a cure. I am truly blessed to have gotten this kind of a response

so quickly and I am thankful for the continued research and progress that

has taken place regarding CML. Just a short time ago these different options

were not available. Sprycel is truly amazing and now we have even more

options to look forward too.

I share this information to all of you let you know that if I can do it so

can you!! We have so much to be hopeful for and I'm confident in the not too

distant future they will find a cure for this disease without having a BMT.

Keep the faith and pray alot. Thank you for letting me share this amazing

news!!

Patti S

[Guest guest]

That's truly wonderful news Patti - good luck for the future.

Regards,

From: [mailto: ] On Behalf Of

PATRICE SIMBULAN

Sent: Thursday, 1 November 2007 2:26 PM

Subject: [ ] Amazing news!!

This is my first post to this group although I have been monitoring all of

your information for several months. I am so thankful for the amazing

information all of you share with everyone. It is so comforting to hear that

others are going through the exact same side effects both physically and

emotionally that I am experiencing. I don't feel so alone.

I want to share my journey so far and the amazing news I received today.

I was dx March 29, 2007 after having a routine CBC because I was feeling so

exhausted and couldn't seem to shake a respiratory infection. Well, when my

WBC came back 173,000 my doctor told me he suspected CML and sent me to a

hematology oncologist for further testing and confirmation of the diagnosis.

After another, CBC and FISH the diagnosis was confirmed and my CML journey

began. Like everyone else I was devasted and very depressed.

My onc did do a Quant. PCR and my results came back 10.981 with a -0.424 log

reduction. Of course at the time I didn't have a clue what this meant. I

have been able to learn from this group and others exactly what all of the

tests mean.

I began taking Gleevec 400 mg on April 10, 2007. Except for a few side

effects things seemed to be going well and my counts responded very quickly

with my WBC going down to 18, 000. I had my first BMAon April 18 and at that

appointment noticed that I was starting to get a rash. (My BMA came back

showing the PH chromasome evident metaphases analyzed) The rash got very

severe with blistering on my arms and legs and

really bad edema in my feet, ankles and legs. Then my eyes and face started

to swell. My onc took me off Gleevec for several weeks until the rash got

better. I did try to go back on Gleevec at a lower dose but the rash started

to return so my onc decided that I was allergic to Gleevec and discontinued

the medication. Needless to say I was devastated and very frightened.

Gleevec was supposed to be my magic pill to get me to a complete response.

My onc then told me he wanted me to start Sprycel 100mg daily and see how I

responded to this therapy. On June 9th I started taking Sprycel 100mg once a

day. The side effects were pretty minimal with no rash but some nausea and

diar. My counts responded almost immediately and after two weeks was down to

normal. The only problem with Sprycel is that it took my counts too low

especially my RBC. When I started to experience some shortness of breath, my

onc cut my dose in half to 50 mg daily. An xray showed that I did not have

any plueral effusion which is sometimes a side effect of Sprycel so that was

a relief. But once again I was afraid that I would not be able to tolerate

the Sprycel either and then what. Fortunately I have been gradually

increasing my dosage and am now taking 80 mg daily. Things seem to be

leveling off at that dosage.

At my last appointment (two weeks ago) my onc did another PCR test. Today I

went in to see him and he showed me my results. My PCR was 0.000!!! I was

stunned and ecstatic at the news. To quote the report " The real time assay

shows no evidence of expression of the BCR-ABL fusion transcript... " Of

course I know this does not mean I'm cured but this is as good as it gets

short of a cure. I am truly blessed to have gotten this kind of a response

so quickly and I am thankful for the continued research and progress that

has taken place regarding CML. Just a short time ago these different options

were not available. Sprycel is truly amazing and now we have even more

options to look forward too.

I share this information to all of you let you know that if I can do it so

can you!! We have so much to be hopeful for and I'm confident in the not too

distant future they will find a cure for this disease without having a BMT.

Keep the faith and pray alot. Thank you for letting me share this amazing

news!!

Patti S

[Guest guest]

I agree with - Congrats Patti. This is

wonderful news!!!!!

--- Malseed <rodorbal@...> wrote:

> That's truly wonderful news Patti - good luck for

> the future.

>

>

>

>

>

> Regards,

>

>

>

>

>

>

>

>

>

> From:

> [mailto: ] On Behalf Of

> PATRICE SIMBULAN

> Sent: Thursday, 1 November 2007 2:26 PM

>

> Subject: [ ] Amazing news!!

>

>

>

> This is my first post to this group although I have

> been monitoring all of

> your information for several months. I am so

> thankful for the amazing

> information all of you share with everyone. It is so

> comforting to hear that

> others are going through the exact same side effects

> both physically and

> emotionally that I am experiencing. I don't feel so

> alone.

>

> I want to share my journey so far and the amazing

> news I received today.

>

> I was dx March 29, 2007 after having a routine CBC

> because I was feeling so

> exhausted and couldn't seem to shake a respiratory

> infection. Well, when my

> WBC came back 173,000 my doctor told me he suspected

> CML and sent me to a

> hematology oncologist for further testing and

> confirmation of the diagnosis.

> After another, CBC and FISH the diagnosis was

> confirmed and my CML journey

> began. Like everyone else I was devasted and very

> depressed.

>

> My onc did do a Quant. PCR and my results came back

> 10.981 with a -0.424 log

> reduction. Of course at the time I didn't have a

> clue what this meant. I

> have been able to learn from this group and others

> exactly what all of the

> tests mean.

>

> I began taking Gleevec 400 mg on April 10, 2007.

> Except for a few side

> effects things seemed to be going well and my counts

> responded very quickly

> with my WBC going down to 18, 000. I had my first

> BMAon April 18 and at that

> appointment noticed that I was starting to get a

> rash. (My BMA came back

> showing the PH chromasome evident metaphases

> analyzed) The rash got very

> severe with blistering on my arms and legs and

> really bad edema in my feet, ankles and legs. Then

> my eyes and face started

> to swell. My onc took me off Gleevec for several

> weeks until the rash got

> better. I did try to go back on Gleevec at a lower

> dose but the rash started

> to return so my onc decided that I was allergic to

> Gleevec and discontinued

> the medication. Needless to say I was devastated and

> very frightened.

> Gleevec was supposed to be my magic pill to get me

> to a complete response.

>

> My onc then told me he wanted me to start Sprycel

> 100mg daily and see how I

> responded to this therapy. On June 9th I started

> taking Sprycel 100mg once a

> day. The side effects were pretty minimal with no

> rash but some nausea and

> diar. My counts responded almost immediately and

> after two weeks was down to

> normal. The only problem with Sprycel is that it

> took my counts too low

> especially my RBC. When I started to experience some

> shortness of breath, my

> onc cut my dose in half to 50 mg daily. An xray

> showed that I did not have

> any plueral effusion which is sometimes a side

> effect of Sprycel so that was

> a relief. But once again I was afraid that I would

> not be able to tolerate

> the Sprycel either and then what. Fortunately I have

> been gradually

> increasing my dosage and am now taking 80 mg daily.

> Things seem to be

> leveling off at that dosage.

>

> At my last appointment (two weeks ago) my onc did

> another PCR test. Today I

> went in to see him and he showed me my results. My

> PCR was 0.000!!! I was

> stunned and ecstatic at the news. To quote the

> report " The real time assay

> shows no evidence of expression of the BCR-ABL

> fusion transcript... " Of

> course I know this does not mean I'm cured but this

> is as good as it gets

> short of a cure. I am truly blessed to have gotten

> this kind of a response

> so quickly and I am thankful for the continued

> research and progress that

> has taken place regarding CML. Just a short time ago

> these different options

> were not available. Sprycel is truly amazing and now

> we have even more

> options to look forward too.

>

> I share this information to all of you let you know

> that if I can do it so

> can you!! We have so much to be hopeful for and I'm

> confident in the not too

> distant future they will find a cure for this

> disease without having a BMT.

> Keep the faith and pray alot. Thank you for letting

> me share this amazing

> news!!

>

> Patti S

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

just want to say yeah sprycel works.. thats wat i've been taking for the last

7months now.. got a question for u? how do u get ur supply of sprycel? cuz for

me they have to order it from Bristol - Myers - Squibb manufactor company cuz is

not available in the pharmacy yet.. anyways my dosage is 70mg 2x aday total of

140mg.. and i dont get any side affect.. so far my count is pretty good.. last

month wen i had me routin check up.. my CBC count was 10.3.... hope this will

help u.. thanks!

Malseed <rodorbal@...> wrote: That's truly wonderful

news Patti - good luck for the future.

Regards,

From: [mailto: ] On Behalf Of

PATRICE SIMBULAN

Sent: Thursday, 1 November 2007 2:26 PM

Subject: [ ] Amazing news!!

This is my first post to this group although I have been monitoring all of

your information for several months. I am so thankful for the amazing

information all of you share with everyone. It is so comforting to hear that

others are going through the exact same side effects both physically and

emotionally that I am experiencing. I don't feel so alone.

I want to share my journey so far and the amazing news I received today.

I was dx March 29, 2007 after having a routine CBC because I was feeling so

exhausted and couldn't seem to shake a respiratory infection. Well, when my

WBC came back 173,000 my doctor told me he suspected CML and sent me to a

hematology oncologist for further testing and confirmation of the diagnosis.

After another, CBC and FISH the diagnosis was confirmed and my CML journey

began. Like everyone else I was devasted and very depressed.

My onc did do a Quant. PCR and my results came back 10.981 with a -0.424 log

reduction. Of course at the time I didn't have a clue what this meant. I

have been able to learn from this group and others exactly what all of the

tests mean.

I began taking Gleevec 400 mg on April 10, 2007. Except for a few side

effects things seemed to be going well and my counts responded very quickly

with my WBC going down to 18, 000. I had my first BMAon April 18 and at that

appointment noticed that I was starting to get a rash. (My BMA came back

showing the PH chromasome evident metaphases analyzed) The rash got very

severe with blistering on my arms and legs and

really bad edema in my feet, ankles and legs. Then my eyes and face started

to swell. My onc took me off Gleevec for several weeks until the rash got

better. I did try to go back on Gleevec at a lower dose but the rash started

to return so my onc decided that I was allergic to Gleevec and discontinued

the medication. Needless to say I was devastated and very frightened.

Gleevec was supposed to be my magic pill to get me to a complete response.

My onc then told me he wanted me to start Sprycel 100mg daily and see how I

responded to this therapy. On June 9th I started taking Sprycel 100mg once a

day. The side effects were pretty minimal with no rash but some nausea and

diar. My counts responded almost immediately and after two weeks was down to

normal. The only problem with Sprycel is that it took my counts too low

especially my RBC. When I started to experience some shortness of breath, my

onc cut my dose in half to 50 mg daily. An xray showed that I did not have

any plueral effusion which is sometimes a side effect of Sprycel so that was

a relief. But once again I was afraid that I would not be able to tolerate

the Sprycel either and then what. Fortunately I have been gradually

increasing my dosage and am now taking 80 mg daily. Things seem to be

leveling off at that dosage.

At my last appointment (two weeks ago) my onc did another PCR test. Today I

went in to see him and he showed me my results. My PCR was 0.000!!! I was

stunned and ecstatic at the news. To quote the report " The real time assay

shows no evidence of expression of the BCR-ABL fusion transcript... " Of

course I know this does not mean I'm cured but this is as good as it gets

short of a cure. I am truly blessed to have gotten this kind of a response

so quickly and I am thankful for the continued research and progress that

has taken place regarding CML. Just a short time ago these different options

were not available. Sprycel is truly amazing and now we have even more

options to look forward too.

I share this information to all of you let you know that if I can do it so

can you!! We have so much to be hopeful for and I'm confident in the not too

distant future they will find a cure for this disease without having a BMT.

Keep the faith and pray alot. Thank you for letting me share this amazing

news!!

Patti S