Re: anyone been taken off tkis for a while? Zavie

[Guest guest]

>

> I'm assuming that you are at PCRU. How often are you being tested, and does

> it always come back undetectable?

>

>

>

> If you are worried about the CML coming back you might consider harvesting

> your cells.

_________________________________

Hi Zavie,

I am not sure why you have suggested harvesting cells....this has not been done

for a long time, because even someone who is pcru still has cml cells....and it

only takes one. I am not aware of any procedure where they are claiming that

they can 'clean' the sample and get rid of any residual cell........are you?

C.

[Guest guest]

Hi (and Lottie),

I know this and you are both correct. The cell harvesting was popular in

England in the olden days. The theory then was to harvest the cells early in

the game and if the patient accelerated later on (say a few years later)

they would do the auto transplant and it would buy the patient a couple of

years (assuming the CML progresses at the same rate as before). The hope

would be that in the extra years a cure or a better treatment would be

found.

I suggested this to Beth because of what she has posted. She has gone off

and started to treat herself, ignoring what the CML experts are suggesting.

She seemed panicked about relapsing and I thought that if she checked with

her doctor about doing the harvest, he might convince her that the best

approach would be is to try what is currently available in their arsenal

right now.

Also, she never told us what this infusion therapy is.

Our job on this site is to help the patients get the best possible

treatment for their CML.

And we do a real good job at it.

Thank you and Lottie and all the others on this great CML site.

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

hey00nanc

Sent: September-30-10 2:05 AM

Subject: [ ] Re: anyone been taken off tkis for a while? Zavie

>

> I'm assuming that you are at PCRU. How often are you being tested, and

does

> it always come back undetectable?

>

>

>

> If you are worried about the CML coming back you might consider harvesting

> your cells.

_________________________________

Hi Zavie,

I am not sure why you have suggested harvesting cells....this has not been

done for a long time, because even someone who is pcru still has cml

cells....and it only takes one. I am not aware of any procedure where they

are claiming that they can 'clean' the sample and get rid of any residual

cell........are you?

C.

[Guest guest]

I have had 2 stem cell harvests when it was the popular thing to do early on.

the first one was 25% CML positive. The second one was okay. I have since

donated the first set of stem cells to research for Dr. Druker. OSHU did y

second harvest and there is no charge for the storing of the cells. I felt at

the time, that if I relapsed and there was no other options, this ould buy me

some time. I am PCRU for the past few years, and no longer have the fear of

relapse, but will not give up my stem cells.

[Guest guest]

Zavie wrote:

> I suggested this to Beth because of what she has posted. She has gone off

> and started to treat herself, ignoring what the CML experts are suggesting.

> She seemed panicked about relapsing and I thought that if she checked with

> her doctor about doing the harvest, he might convince her that the best

> approach would be is to try what is currently available in their arsenal

> right now.

___________________________________

Hi Zavie,

I think you have mixed Beth from the UK up with someone else. Her doctor has

taken her off Glivec for the time being, she is awaiting test results so that

she can consult at Hammersmith Hosp. and is doing what has been asked of her.

C.

[Guest guest]

Thanks for setting Zavie right .... I would definitely not take matters

into my own hands!

Bx

> I suggested this to Beth because of what she has posted. She has gone off

> and started to treat herself, ignoring what the CML experts are suggesting.

> She seemed panicked about relapsing and I thought that if she checked with

> her doctor about doing the harvest, he might convince her that the best

> approach would be is to try what is currently available in their arsenal

> right now.

___________________________________

Hi Zavie,

I think you have mixed Beth from the UK up with someone else. Her doctor has

taken her off Glivec for the time being, she is awaiting test results so that

she can consult at Hammersmith Hosp. and is doing what has been asked of her.

C.

[Guest guest]

Sorry all. The reply was meant for Barbara, not Beth.

Zavie

From: [mailto: ] On Behalf Of

hey00nanc

Sent: September-30-10 10:52 AM

Subject: [ ] Re: anyone been taken off tkis for a while? Zavie

Zavie wrote:

> I suggested this to ( Beth error) Barbara because of what she has posted.

She has gone off

> and started to treat herself, ignoring what the CML experts are

suggesting.

> She seemed panicked about relapsing and I thought that if she checked with

> her doctor about doing the harvest, he might convince her that the best

> approach would be is to try what is currently available in their arsenal

> right now.

___________________________________

Hi Zavie,

I think you have mixed Beth from the UK up with someone else. Her doctor has

taken her off Glivec for the time being, she is awaiting test results so

that she can consult at Hammersmith Hosp. and is doing what has been asked

of her.

C.