Re: Now 14 months off Gleevec

[Guest guest]

wow!!!!!!!!

_____

From: [mailto: ] On Behalf Of

jedhall

Sent: Monday, June 07, 2010 1:23 PM

Subject: [ ] Now 14 months off Gleevec

(cross-posted)

It was ten years yesterday -- somewhat coincidently National Cancer Survivor

Day -- that I was diagnosed with CML. It has been 14 months Wednesday since

I stopped Gleevec. I'm remiss because I haven't posted my current status

since September 4, 2009, when I told my story about wanting to discontinue

Gleevec to see if I would remain PCR-U, which I had been since September,

2002 (check out message #17851 if you want to read past history).

I've been followed closely by my oncologist, Dr. Neil Shah, during this

period of time. My last PCR was April 7; I am still PCR-U. Dr. Shah and I

are both delighted, especially me since I no longer have any of the side

effects. My hemoglobin consistently remains in the 12.5 range. There is talk

now that Gleevec might actually be a cure for some people under certain

circumstances. Right now I hope I live long enough to prove this true. Maybe

Zavie should start a Cured Club?

B from California

[Guest guest]

Wow congratulation. Enjoy life

T

Sent from my Verizon Wireless BlackBerry

[ ] Now 14 months off Gleevec

(cross-posted)

It was ten years yesterday -- somewhat coincidently National Cancer Survivor Day

-- that I was diagnosed with CML. It has been 14 months Wednesday since I

stopped Gleevec. I'm remiss because I haven't posted my current status since

September 4, 2009, when I told my story about wanting to discontinue Gleevec to

see if I would remain PCR-U, which I had been since September, 2002 (check out

message #17851 if you want to read past history).

I've been followed closely by my oncologist, Dr. Neil Shah, during this period

of time. My last PCR was April 7; I am still PCR-U. Dr. Shah and I are both

delighted, especially me since I no longer have any of the side effects. My

hemoglobin consistently remains in the 12.5 range. There is talk now that

Gleevec might actually be a cure for some people under certain circumstances.

Right now I hope I live long enough to prove this true. Maybe Zavie should

start a Cured Club?

B from California

[Guest guest]

, that is fabulous news, congratulations!!! 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: jedhall <nancybelcher@...>

Subject: [ ] Now 14 months off Gleevec

Date: Monday, June 7, 2010, 4:23 PM

 

(cross-posted)

It was ten years yesterday -- somewhat coincidently National Cancer Survivor Day

-- that I was diagnosed with CML. It has been 14 months Wednesday since I

stopped Gleevec. I'm remiss because I haven't posted my current status since

September 4, 2009, when I told my story about wanting to discontinue Gleevec to

see if I would remain PCR-U, which I had been since September, 2002 (check out

message #17851 if you want to read past history).

I've been followed closely by my oncologist, Dr. Neil Shah, during this period

of time. My last PCR was April 7; I am still PCR-U. Dr. Shah and I are both

delighted, especially me since I no longer have any of the side effects. My

hemoglobin consistently remains in the 12.5 range. There is talk now that

Gleevec might actually be a cure for some people under certain circumstances.

Right now I hope I live long enough to prove this true. Maybe Zavie should

start a Cured Club?

B from California

[Guest guest]

Hi ,

GREAT NEWS !!!!!!

When I started the Zero Club I created a club of HOPE. I remember those dark

days very well. The thought of reaching a level of remission along with a

reasonable quality of life was more than I dared hope for. If others could

achieve this back then, then why not me. Gleevec as a cure was never a

thought in the remotest corner of my mind.

Another O!!! YIPPEEE!!! is in order for this amazing achievement. For

those who weren't born yet, is number 66 in the Zero Club.

I recently heard from one of the old time posters on this list that he has

been off Gleevec for 5 months and still remains PCRU. It appears that those

at PCRU over long periods of time have a chance of going off meds. Could a

cure be far away?

Thank you so much for the post. It gives us all HOPE.

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

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of

jedhall

Sent: June-07-10 4:23 PM

Subject: [ ] Now 14 months off Gleevec

(cross-posted)

It was ten years yesterday -- somewhat coincidently National Cancer Survivor

Day -- that I was diagnosed with CML. It has been 14 months Wednesday since

I stopped Gleevec. I'm remiss because I haven't posted my current status

since September 4, 2009, when I told my story about wanting to discontinue

Gleevec to see if I would remain PCR-U, which I had been since September,

2002 (check out message #17851 if you want to read past history).

I've been followed closely by my oncologist, Dr. Neil Shah, during this

period of time. My last PCR was April 7; I am still PCR-U. Dr. Shah and I

are both delighted, especially me since I no longer have any of the side

effects. My hemoglobin consistently remains in the 12.5 range. There is talk

now that Gleevec might actually be a cure for some people under certain

circumstances. Right now I hope I live long enough to prove this true. Maybe

Zavie should start a Cured Club?

B from California

[Guest guest]

WOW IS RIGHT! What fantastic news!! What are the " certain circumstances " under

which a person would be considered for a trial off Gleevec? I am dying to know

as I am having rather major GI side effects and would love to see a light at the

end of the tunnel. I live close enough to Dr Druker, that I could see him

regularly if the situation warranted it--is he doing any trials with people off

medication?

Vicki

>

> From: jedhall <nancybelcher@...>

> Subject: [ ] Now 14 months off Gleevec

>

> Date: Monday, June 7, 2010, 4:23 PM

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> (cross-posted)

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> It was ten years yesterday -- somewhat coincidently National Cancer Survivor

Day -- that I was diagnosed with CML. It has been 14 months Wednesday since I

stopped Gleevec. I'm remiss because I haven't posted my current status since

September 4, 2009, when I told my story about wanting to discontinue Gleevec to

see if I would remain PCR-U, which I had been since September, 2002 (check out

message #17851 if you want to read past history).

>

>

>

> I've been followed closely by my oncologist, Dr. Neil Shah, during this period

of time. My last PCR was April 7; I am still PCR-U. Dr. Shah and I are both

delighted, especially me since I no longer have any of the side effects. My

hemoglobin consistently remains in the 12.5 range. There is talk now that

Gleevec might actually be a cure for some people under certain circumstances.

Right now I hope I live long enough to prove this true. Maybe Zavie should

start a Cured Club?

>

> B from California

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[Guest guest]

Dear and all,

Awesome to hear that you are still PCR_U without the drug. Being that you were

diagnosed before Gleevec hit the market in 2001, were you also treated with

Interferon? I was diagnosed in December of 2006 and am blessed that it is

keeping me alive. However, the side effects are awful. I've asked my doctor if

I ever would be able to get off the medication and he said no. In fact, he

mentioned no one would take a patient off of the drug given that we have no

data. Keep in mind this is the same doctor who refuses to test my bone marrow

because he feels he can get all the information he needs from blood work.

Additionally, he had told me not to participate in trials because the Gleevec is

working for me.

All this is to say that I feel lost and keep hearing conflicting information

from various doctors and folks with the disease. Has anyone stopped the drug?

Has anyone heard about the results of the vaccine trial at s Hopkins?

Granted, it was a small trial. However, the results looked promising.

I would appreciate your insight.

Best,

Manny

From: nancybelcher@...

Date: Mon, 7 Jun 2010 20:23:28 +0000

Subject: [ ] Now 14 months off Gleevec

(cross-posted)

It was ten years yesterday -- somewhat coincidently National Cancer Survivor Day

-- that I was diagnosed with CML. It has been 14 months Wednesday since I

stopped Gleevec. I'm remiss because I haven't posted my current status since

September 4, 2009, when I told my story about wanting to discontinue Gleevec to

see if I would remain PCR-U, which I had been since September, 2002 (check out

message #17851 if you want to read past history).

I've been followed closely by my oncologist, Dr. Neil Shah, during this period

of time. My last PCR was April 7; I am still PCR-U. Dr. Shah and I are both

delighted, especially me since I no longer have any of the side effects. My

hemoglobin consistently remains in the 12.5 range. There is talk now that

Gleevec might actually be a cure for some people under certain circumstances.

Right now I hope I live long enough to prove this true. Maybe Zavie should start

a Cured Club?

B from California

_________________________________________________________________

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[Guest guest]

Do you have the ability to see a different doctor? I was dx in 2007, went to

a local doctor, (an hour away), feeling blessed that I had a 'good' doc so

close to me. Well, she didn't know much, I came to find out from people on

the list. So, now, we drive 2 1/2 hours to see Dr. Erba at U of M. I have

tried the trial where they added interferon to the Gleevec. (Too much bone

pain... couldn't do it.) and when that was quit, he let me switch to

Tasigna, because Gleevec had too many small side effects. He even told me

that the side effects wouldn't have been enough to switch me when the drugs

were still in trial, but now, FDA approved, he had no problem switching. I

can't say how it is going, except for the headache, as it has only been 3

days.

If you are second guessing your doc, you have 2 choices... find a new one or

bring in so much data printed off that you want to be on another drug that

he can't deny it.

Good luck,

Tammy

[ ] Now 14 months off Gleevec

(cross-posted)

It was ten years yesterday -- somewhat coincidently National Cancer Survivor

Day -- that I was diagnosed with CML. It has been 14 months Wednesday since

I stopped Gleevec. I'm remiss because I haven't posted my current status

since September 4, 2009, when I told my story about wanting to discontinue

Gleevec to see if I would remain PCR-U, which I had been since September,

2002 (check out message #17851 if you want to read past history).

I've been followed closely by my oncologist, Dr. Neil Shah, during this

period of time. My last PCR was April 7; I am still PCR-U. Dr. Shah and I

are both delighted, especially me since I no longer have any of the side

effects. My hemoglobin consistently remains in the 12.5 range. There is talk

now that Gleevec might actually be a cure for some people under certain

circumstances. Right now I hope I live long enough to prove this true. Maybe

Zavie should start a Cured Club?

B from California

_________________________________________________________________

The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with

Hotmail.

http://www.windowslive.com/campaign/thenewbusy?tile=multicalendar & ocid=PID28

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[Guest guest]

My Onc does have one patient that has been off Gleevec for about a year, if

I recall, too many side effects and the patient insisted, so he has been

med's, too many side effects. I know he is being very closely monitored. I

will ask on my next quarterly visit. I will also say, my Onc told me, no

way, must stay on meds, it took me over 2 years to reach PCRU and am only 1

yr since, still on Sprycell, hate the headaches, but love my blood levels.

Cheers,

Chris

[Guest guest]

--Well done! Very exciting and congratulations!

BethG

[ ] Now 14 months off Gleevec

>

> Date: Monday, June 7, 2010, 4:23 PM

>

>

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>

>  

>

>

>

>

>

>

>

>

>

> (cross-posted)

>

> It was ten years yesterday -- somewhat coincidently National Cancer Survivor

Day -- that I was diagnosed with CML. It has been 14 months Wednesday since I

stopped Gleevec. I'm remiss because I haven't posted my current status since

September 4, 2009, when I told my story about wanting to discontinue Gleevec to

see if I would remain PCR-U, which I had been since September, 2002 (check out

message #17851 if you want to read past history).

>

>

>

> I've been followed closely by my oncologist, Dr. Neil Shah, during this period

of time. My last PCR was April 7; I am still PCR-U. Dr. Shah and I are both

delighted, especially me since I no longer have any of the side effects. My

hemoglobin consistently remains in the 12.5 range. There is talk now that

Gleevec might actually be a cure for some people under certain circumstances.

Right now I hope I live long enough to prove this true. Maybe Zavie should start

a Cured Club?

>

> B from California

>

>

>

>

>

>

>

>

>

>

>

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[Guest guest]

hi Manny answering your question stopping gleevec is very risky. I reduced my

dosage to 200 mg instead of 400 and my CML no went up in less than 6 month where

I have been on gleevec for the last 7 years. Every one is different.

T

Sent from my Verizon Wireless BlackBerry

[ ] Now 14 months off Gleevec

(cross-posted)

It was ten years yesterday -- somewhat coincidently National Cancer Survivor Day

-- that I was diagnosed with CML. It has been 14 months Wednesday since I

stopped Gleevec. I'm remiss because I haven't posted my current status since

September 4, 2009, when I told my story about wanting to discontinue Gleevec to

see if I would remain PCR-U, which I had been since September, 2002 (check out

message #17851 if you want to read past history).

I've been followed closely by my oncologist, Dr. Neil Shah, during this period

of time. My last PCR was April 7; I am still PCR-U. Dr. Shah and I are both

delighted, especially me since I no longer have any of the side effects. My

hemoglobin consistently remains in the 12.5 range. There is talk now that

Gleevec might actually be a cure for some people under certain circumstances.

Right now I hope I live long enough to prove this true. Maybe Zavie should start

a Cured Club?

B from California

_________________________________________________________________

The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with

Hotmail.

http://www.windowslive.com/campaign/thenewbusy?tile=multicalendar & ocid=PID28326:\

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[Guest guest]

Hi Manny,

Your doctor is wrong!!!! He has a closed mind. He is not up to date on what

is happening in the field of CML treatment. You need to find a new doctor

ASAP.

Tell me your story with CML and at what level of remission you are right

now. All you need to be is at CCR to get a number in the Zero Club.

If you tell us where you live, we can suggest a CML specialist in your area.

Zavie

[ ] Now 14 months off Gleevec

(cross-posted)

It was ten years yesterday -- somewhat coincidently National Cancer Survivor

Day -- that I was diagnosed with CML. It has been 14 months Wednesday since

I stopped Gleevec. I'm remiss because I haven't posted my current status

since September 4, 2009, when I told my story about wanting to discontinue

Gleevec to see if I would remain PCR-U, which I had been since September,

2002 (check out message #17851 if you want to read past history).

I've been followed closely by my oncologist, Dr. Neil Shah, during this

period of time. My last PCR was April 7; I am still PCR-U. Dr. Shah and I

are both delighted, especially me since I no longer have any of the side

effects. My hemoglobin consistently remains in the 12.5 range. There is talk

now that Gleevec might actually be a cure for some people under certain

circumstances. Right now I hope I live long enough to prove this true. Maybe

Zavie should start a Cured Club?

B from California

_________________________________________________________________

The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with

Hotmail.

http://www.windowslive.com/campaign/thenewbusy?tile=multicalendar & ocid=PID28

326::T:WLMTAGL:ON:WL:en-US:WM_HMP:042010_5

[Guest guest]

My grandmother has been off of of her 400 mg. Gleevec for 14 months because her

numbers went down so low. She has been doing great and her new oncologist has

decided to put her back on 100 mg. of Gleevec just to keep her CML under

control. He said he doesn't want her CML come back and get out of control.

[ ] Now 14 months off Gleevec

(cross-posted)

It was ten years yesterday -- somewhat coincidently National Cancer Survivor

Day -- that I was diagnosed with CML. It has been 14 months Wednesday since I

stopped Gleevec. I'm remiss because I haven't posted my current status since

September 4, 2009, when I told my story about wanting to discontinue Gleevec to

see if I would remain PCR-U, which I had been since September, 2002 (check out

message #17851 if you want to read past history).

I've been followed closely by my oncologist, Dr. Neil Shah, during this period

of time. My last PCR was April 7; I am still PCR-U. Dr. Shah and I are both

delighted, especially me since I no longer have any of the side effects. My

hemoglobin consistently remains in the 12.5 range. There is talk now that

Gleevec might actually be a cure for some people under certain circumstances.

Right now I hope I live long enough to prove this true. Maybe Zavie should start

a Cured Club?

B from California

__________________________________________________________

The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with

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[Guest guest]

Hi Kriste,

Restarting at 100 mg is absolutely the wrong thing to do. It is a recipe for

the CML to come back. If she has not tested positive for CML after 14

months, then there is no reason to go back on Gleevec.

Can you tell us more about her disease. When was she diagnosed, what are her

counts, where is she being treated, etc.

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

Kristie Skipper

Sent: June-09-10 7:01 PM

Subject: Re: [ ] Now 14 months off Gleevec

My grandmother has been off of of her 400 mg. Gleevec for 14 months because

her numbers went down so low. She has been doing great and her new

oncologist has decided to put her back on 100 mg. of Gleevec just to keep

her CML under control. He said he doesn't want her CML come back and get out

of control.

[ ] Now 14 months off Gleevec

(cross-posted)

It was ten years yesterday -- somewhat coincidently National Cancer Survivor

Day -- that I was diagnosed with CML. It has been 14 months Wednesday since

I stopped Gleevec. I'm remiss because I haven't posted my current status

since September 4, 2009, when I told my story about wanting to discontinue

Gleevec to see if I would remain PCR-U, which I had been since September,

2002 (check out message #17851 if you want to read past history).

I've been followed closely by my oncologist, Dr. Neil Shah, during this

period of time. My last PCR was April 7; I am still PCR-U. Dr. Shah and I

are both delighted, especially me since I no longer have any of the side

effects. My hemoglobin consistently remains in the 12.5 range. There is talk

now that Gleevec might actually be a cure for some people under certain

circumstances. Right now I hope I live long enough to prove this true. Maybe

Zavie should start a Cured Club?

B from California

__________________________________________________________

The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with

Hotmail.

http://www.windowslive.com/campaign/thenewbusy?tile=multicalendar

<http://www.windowslive.com/campaign/thenewbusy?tile=multicalendar & ocid=PID2

8326::T:WLMTAGL:ON:WL:en-US:WM_HMP:042010_5>

& ocid=PID28326::T:WLMTAGL:ON:WL:en-US:WM_HMP:042010_5

[Guest guest]

There's been a little confusion, I think, from some people regarding my posting

about stopping Gleevec. Mainly, I don't want to change doctors. I have one

that is considered an expert who I like very much. Nor do I want to be on

another drug; the whole idea was mine --to see if I could discontinue Gleevec

and remain PCRU.

So, to clear things up a bit, I'm doing a cut and paste from my first posting

last September about stopping Gleevec, where I discussed the STIM trial in

France (no, there isn't one yet in the U.S) and my correlation with those who

had not relapsed in France -- interferon for six months prior to Gleevec, until

I entered the Stanford trial, being PCRU within eight months of starting

Gleevec (the first time) and remaining PCRU since September, 2002 (when I

resumed the drug in April, 2002).

Here's the September 4, 2009 posting:

" I've been off Gleevec five months (since April 9), my idea, not on any official

trial but with my oncologist's blessing (Dr. Neil Shah, considered a CML

expert). You might call it a clinical trial of one. We had discussed me doing

this for at least a year; I was encouraged by the results of the STIM trial in

France, where the best results were achieved for those who had previously been

on Interferon, as I had. I was diagnosed in June, 2000; was on Interferon

through November; started Gleevec 400 mg in the expanded clinical trial at

Stanford in December; reached CCR in May, 2001 (#66 on Zavie's list); was PCRU

in July, 2001, but lost it when I had to discontinue Gleevec because of elevated

LFTs. Resumed Gleevec in May, 2002, and was again PCRU in September, 2002, and

remain so. This was something I strongly wanted to try and Dr. Shah has told me

he thinks the risks are fairly minimal. A substantial number of patients remain

PCRU more than two years after the STIM study began. The trial patients who

relapsed (about half) became PCRU again when they resumed Gleevec.

As an aside, it's been a lovely vacation from side effects. Within ten days my

main complaint of constant fatigue was gone. I no longer take two naps a day,

rarely have diarrhea, have no more muscle cramps and can see my eyes when I wake

up in the morning.

Best of all my persistent iron deficient anemia seems to have disappeared since

I discontinued Gleevec. We're not exactly sure why yet. It came on during the

past three to four years and gradually became worse and worse, down to 7.2 hgb,

requiring transfusions and repeat iron infusions. It was a challenge to keep my

hemoglobin over 10, but in three months without Gleevec (with no added

treatment) it rose to 12.3. So far I remain PCRU. Next test October 7 " .

Back to June 9, 2010: I'm not the only person who has achieved this and even if

the leukemia returns, my chances are excellent that I can achieve PCRU again

with the resumption of Gleevec. Not that I want to -- I'm still on that lovely

vacation.

B from California

[Guest guest]

I am still confused.

Who is Kristie Skipper?

Is she is 's granddaughter?

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

jedhall

Sent: June-09-10 8:58 PM

Subject: Re: [ ] Now 14 months off Gleevec

There's been a little confusion, I think, from some people regarding my

posting about stopping Gleevec. Mainly, I don't want to change doctors. I

have one that is considered an expert who I like very much. Nor do I want to

be on another drug; the whole idea was mine --to see if I could discontinue

Gleevec and remain PCRU.

So, to clear things up a bit, I'm doing a cut and paste from my first

posting last September about stopping Gleevec, where I discussed the STIM

trial in France (no, there isn't one yet in the U.S) and my correlation with

those who had not relapsed in France -- interferon for six months prior to

Gleevec, until I entered the Stanford trial, being PCRU within eight months

of starting Gleevec (the first time) and remaining PCRU since September,

2002 (when I resumed the drug in April, 2002).

Here's the September 4, 2009 posting:

" I've been off Gleevec five months (since April 9), my idea, not on any

official trial but with my oncologist's blessing (Dr. Neil Shah, considered

a CML expert). You might call it a clinical trial of one. We had discussed

me doing this for at least a year; I was encouraged by the results of the

STIM trial in France, where the best results were achieved for those who had

previously been on Interferon, as I had. I was diagnosed in June, 2000; was

on Interferon through November; started Gleevec 400 mg in the expanded

clinical trial at

Stanford in December; reached CCR in May, 2001 (#66 on Zavie's list); was

PCRU in July, 2001, but lost it when I had to discontinue Gleevec because of

elevated LFTs. Resumed Gleevec in May, 2002, and was again PCRU in

September, 2002, and remain so. This was something I strongly wanted to try

and Dr. Shah has told me he thinks the risks are fairly minimal. A

substantial number of patients remain PCRU more than two years after the

STIM study began. The trial patients who relapsed (about half) became PCRU

again when they resumed Gleevec.

As an aside, it's been a lovely vacation from side effects. Within ten days

my main complaint of constant fatigue was gone. I no longer take two naps a

day, rarely have diarrhea, have no more muscle cramps and can see my eyes

when I wake up in the morning.

Best of all my persistent iron deficient anemia seems to have disappeared

since I discontinued Gleevec. We're not exactly sure why yet. It came on

during the past three to four years and gradually became worse and worse,

down to 7.2 hgb, requiring transfusions and repeat iron infusions. It was a

challenge to keep my hemoglobin over 10, but in three months without Gleevec

(with no added treatment) it rose to 12.3. So far I remain PCRU. Next test

October 7 " .

Back to June 9, 2010: I'm not the only person who has achieved this and even

if the leukemia returns, my chances are excellent that I can achieve PCRU

again with the resumption of Gleevec. Not that I want to -- I'm still on

that lovely vacation.

B from California

[Guest guest]

Wow! What wonderful news. I read all of the new information on the drugs used

for CML and preferences, but no one said that one single drug would make one

cured. , you are blessed. Congratulations to you. To those that continue

to stay on Gleevec before trying to see whether he/she can get off of it, might

achieve what did. It certainly is interesting because some literature are

talking about combining Gleevec with a new drug to get a cure. For , she

has been cured and brave to try it.

Sandi

> >

> > From: jedhall <nancybelcher@>

> > Subject: [ ] Now 14 months off Gleevec

> >

> > Date: Monday, June 7, 2010, 4:23 PM

> >

> >

> >

> >

> >

> >

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> >  

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> >

> >

> > (cross-posted)

> >

> > It was ten years yesterday -- somewhat coincidently National Cancer Survivor

Day -- that I was diagnosed with CML. It has been 14 months Wednesday since I

stopped Gleevec. I'm remiss because I haven't posted my current status since

September 4, 2009, when I told my story about wanting to discontinue Gleevec to

see if I would remain PCR-U, which I had been since September, 2002 (check out

message #17851 if you want to read past history).

> >

> >

> >

> > I've been followed closely by my oncologist, Dr. Neil Shah, during this

period of time. My last PCR was April 7; I am still PCR-U. Dr. Shah and I are

both delighted, especially me since I no longer have any of the side effects.

My hemoglobin consistently remains in the 12.5 range. There is talk now that

Gleevec might actually be a cure for some people under certain circumstances.

Right now I hope I live long enough to prove this true. Maybe Zavie should

start a Cured Club?

> >

> > B from California

> >

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> >

[Guest guest]

I don't know who Kristie Skipper is either. Someone else's grand-daughter.

It's just some coincidence that the grandmother has been off Gleevec for the

same number of months that I have, but for entirely different reasons.

B from California

[Guest guest]

Congratulations this an amazing story w gleevec. We may have a cure story

here. GOD Bless.

( T

Sent from my Verizon Wireless BlackBerry

Re: [ ] Now 14 months off Gleevec

There's been a little confusion, I think, from some people regarding my posting

about stopping Gleevec. Mainly, I don't want to change doctors. I have one

that is considered an expert who I like very much. Nor do I want to be on

another drug; the whole idea was mine --to see if I could discontinue Gleevec

and remain PCRU.

So, to clear things up a bit, I'm doing a cut and paste from my first posting

last September about stopping Gleevec, where I discussed the STIM trial in

France (no, there isn't one yet in the U.S) and my correlation with those who

had not relapsed in France -- interferon for six months prior to Gleevec, until

I entered the Stanford trial, being PCRU within eight months of starting

Gleevec (the first time) and remaining PCRU since September, 2002 (when I

resumed the drug in April, 2002).

Here's the September 4, 2009 posting:

" I've been off Gleevec five months (since April 9), my idea, not on any official

trial but with my oncologist's blessing (Dr. Neil Shah, considered a CML

expert). You might call it a clinical trial of one. We had discussed me doing

this for at least a year; I was encouraged by the results of the STIM trial in

France, where the best results were achieved for those who had previously been

on Interferon, as I had. I was diagnosed in June, 2000; was on Interferon

through November; started Gleevec 400 mg in the expanded clinical trial at

Stanford in December; reached CCR in May, 2001 (#66 on Zavie's list); was PCRU

in July, 2001, but lost it when I had to discontinue Gleevec because of elevated

LFTs. Resumed Gleevec in May, 2002, and was again PCRU in September, 2002, and

remain so. This was something I strongly wanted to try and Dr. Shah has told me

he thinks the risks are fairly minimal. A substantial number of patients remain

PCRU more than two years after the STIM study began. The trial patients who

relapsed (about half) became PCRU again when they resumed Gleevec.

As an aside, it's been a lovely vacation from side effects. Within ten days my

main complaint of constant fatigue was gone. I no longer take two naps a day,

rarely have diarrhea, have no more muscle cramps and can see my eyes when I wake

up in the morning.

Best of all my persistent iron deficient anemia seems to have disappeared since

I discontinued Gleevec. We're not exactly sure why yet. It came on during the

past three to four years and gradually became worse and worse, down to 7.2 hgb,

requiring transfusions and repeat iron infusions. It was a challenge to keep my

hemoglobin over 10, but in three months without Gleevec (with no added

treatment) it rose to 12.3. So far I remain PCRU. Next test October 7 " .

Back to June 9, 2010: I'm not the only person who has achieved this and even if

the leukemia returns, my chances are excellent that I can achieve PCRU again

with the resumption of Gleevec. Not that I want to -- I'm still on that lovely

vacation.

B from California

[Guest guest]

Congratulations from across the Pond. I've been PCRU since November 09 with

four consequtive zero results. My consultant has started talking about the

trials going on either to stop or to stop with vaccination - but not until at

least November 2011 for me. As we say, if it aint broke don't fix it so I am not

currently inclined to come off Glivec/Gleevec while side effects are OK and I'd

like to be PCRU for longer than 2 years before thinking about it - but there's a

lot of research going on into how to assess who might be more likely to stay

PCRU, including even more sensitive testing. There's been a very small study

that showed the patients who retained PCRU off medication (3 of the 4 patients

in the study) had PCRU by this very sensitive testing (greater than 6 log

measuring sensitivity) but the one who lost PCRU was not quite PCRU by the more

sensitive test in the first place. Interesting - also, in this study all

patients were Gleevec only (none had interferon before).

There is talk now with all the new TKIs that CMR may be the therapeutic goal -

not essential I believe but as it's increasingly possible, that may be the new

endpoint docs are going to aim for.

>

> (cross-posted)

> It was ten years yesterday -- somewhat coincidently National Cancer Survivor

Day -- that I was diagnosed with CML. It has been 14 months Wednesday since I

stopped Gleevec. I'm remiss because I haven't posted my current status since

September 4, 2009, when I told my story about wanting to discontinue Gleevec to

see if I would remain PCR-U, which I had been since September, 2002 (check out

message #17851 if you want to read past history).

>

> I've been followed closely by my oncologist, Dr. Neil Shah, during this period

of time. My last PCR was April 7; I am still PCR-U. Dr. Shah and I are both

delighted, especially me since I no longer have any of the side effects. My

hemoglobin consistently remains in the 12.5 range. There is talk now that

Gleevec might actually be a cure for some people under certain circumstances.

Right now I hope I live long enough to prove this true. Maybe Zavie should

start a Cured Club?

> B from California

>