Re: bone marrow biopsy discussion

[Guest guest]

-

I am Gleevec 800mg and undectable and I have been having them every 6 months.? I

had one with Dr. Mauro in December and I just had one here in my new town of St.

Louis.? I can say this, my next one whenever Dr. Mauro says its due will be with

him.? In my opinion, there is no other in my eyes.? I like his knowledge, his

suggestions and his bone marrow technique.?

I had one here 3 weeks tomorrow and I am still sore, bruised and have a

permenant indentation in my hip/butt area.? I miss Dr. Mauro.

Oh, I wanted to tell you and maybe others who dont know,? Southwest Airlines

will fly you and a companion once a year free on SWA if you are a cancer

patient.? You have to have your local oncologist just fill out the form and sign

it stating that you are going for medical treatment. So your biopsy counts.?

Also, the Hilton, downtown Portland will give you an OSHU nightly rate.? They

are only 5-6 minutes away from the hospital and its a beautiful hotel, walking

distance to all the shops.

35

CML 5/13/05

Gleevec 800mg PCRU

Wife and mother of 3 (11,8,6)

S. RN

[ ] bone marrow biopsy discussion

i just came back from seeing Dr. Mauro. After traveling 3,000 miles, he said

that I didn't need a BMB this trip. Of course, I told him no way was I leaving

without my crutch of a biopsy, as I had all ready workied my way up to haivng

it. Is anyone else's Doctors telling them that if their blood PCR's are

undetectable, that they don't have to have a biopsy every year? If this is so, I

may not travel the 3,000 miles evey year. It does bvecome costly between plane

fare, hotel and meals.

I would like to hear back from others. You may e mail me privately at :

ornurse954@....

thanks in advance

Dx: 9/1999

inf/ara-c until Gleevec approved.

combo of IM/ inf for 1 1/2 years

IM only for past 3 1/2 years and undetectable

---------------------------------

oneSearch: Finally, mobile search that gives answers, not web links.

[Guest guest]

Hi ,if you are undetecible,one why 800 Gleevec and two why the bone

marrow so often,a simple pcr blood test should do.

5/23/05 dxt 400gleevec bcr/ abl.09% 7/12/07

-

I am Gleevec 800mg and undectable and I have been having them every 6 months.? I

had one with Dr. Mauro in December and I just had one here in my new town of St.

Louis.? I can say this, my next one whenever Dr. Mauro says its due will be with

him.? In my opinion, there is no other in my eyes.? I like his knowledge, his

suggestions and his bone marrow technique.?

I had one here 3 weeks tomorrow and I am still sore, bruised and have a

permenant indentation in my hip/butt area.? I miss Dr. Mauro.

Oh, I wanted to tell you and maybe others who dont know,? Southwest Airlines

will fly you and a companion once a year free on SWA if you are a cancer

patient.? You have to have your local oncologist just fill out the form and sign

it stating that you are going for medical treatment. So your biopsy counts.?

Also, the Hilton, downtown Portland will give you an OSHU nightly rate.? They

are only 5-6 minutes away from the hospital and its a beautiful hotel, walking

distance to all the shops.

35

CML 5/13/05

Gleevec 800mg PCRU

Wife and mother of 3 (11,8,6)

S. RN

[ ] bone marrow biopsy discussion

i just came back from seeing Dr. Mauro. After traveling 3,000 miles, he said

that I didn't need a BMB this trip. Of course, I told him no way was I leaving

without my crutch of a biopsy, as I had all ready workied my way up to haivng

it. Is anyone else's Doctors telling them that if their blood PCR's are

undetectable, that they don't have to have a biopsy every year? If this is so, I

may not travel the 3,000 miles evey year. It does bvecome costly between plane

fare, hotel and meals.

I would like to hear back from others. You may e mail me privately at :

ornurse954 (DOT) com.

thanks in advance

Dx: 9/1999

inf/ara-c until Gleevec approved.

combo of IM/ inf for 1 1/2 years

IM only for past 3 1/2 years and undetectable

------------ --------- --------- ---

oneSearch: Finally, mobile search that gives answers, not web links.

[Guest guest]

I don't know...... I started at a new clinic here in St. Louis and they

apparently drew PCR's on both of my visits in April. I didn't know this as I

was getting them every 6 months. The first one in April was undetectable and

now it is showing 0.006. They were going to lower my dose to 600 with good

results of the most recent BMB, but since it came back 0.006 they want me to

stay on 800mg......

I am SO extremely worn out and fatigues on 800mg that I really would like to

go down to 600 or 400 but if the PCR is starting to climb if ever so small, I

guess its unlikely that I can reduce it.

They called today and want to check it again in 1 month to see what it is

doing.....

35

CML 5/13/05

Gleevec 800mg

Wife and mother of 3 (11,8,6)

************************************** Get a sneak peek of the all-new AOL at

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[Guest guest]

Hi ,

You have had an outstanding result at 800 mg but you are paying a dear price

when it comes to your quality of life.

The latest IRIS studies show that a 3 log reduction is sufficient to keep

you from relapsing with your CML. So what is the point of having a 4 log

reduction and a shitty QOL? Talk to your doctor again and see if he will let

you try a 600 mg dose for a year while monitoring it every 3 months (more

often for the first 3 months) to see where your PCR result is. If it remains

at a 3 log reduction (0.01) then continue on the 600 mg dose. If your PCR

result at the end of the year is back to a 4 log reduction and you are still

experiencing nasty side effects, you should consider going down to a 400 mg

dose.

Going from PCRU to 0.006 may not mean anything. It might simply be within

the limit of the PCR test being done in St. Louis.

It is all common sense to me, especially since the IRIS study has shown that

Gleevec continues to lower the PCR value the longer you take it.

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

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of

vegasrnjen@...

Sent: July 25, 2007 9:20 PM

Subject: Re: [ ] bone marrow biopsy discussion

I don't know...... I started at a new clinic here in St. Louis and they

apparently drew PCR's on both of my visits in April. I didn't know this as I

was getting them every 6 months. The first one in April was undetectable and

now it is showing 0.006. They were going to lower my dose to 600 with good

results of the most recent BMB, but since it came back 0.006 they want me to

stay on 800mg......

I am SO extremely worn out and fatigues on 800mg that I really would like to

go down to 600 or 400 but if the PCR is starting to climb if ever so small,

I

guess its unlikely that I can reduce it.

They called today and want to check it again in 1 month to see what it is

doing.....

35

CML 5/13/05

Gleevec 800mg

Wife and mother of 3 (11,8,6)

************************************** Get a sneak peek of the all-new AOL

at

http://discover. <http://discover.aol.com/memed/aolcom30tour>

aol.com/memed/aolcom30tour

[Guest guest]

Hi :

I too was on 800 mg for my first years, as my oncologist from

MDACC said it would be better long term. In the short term I

suffered and if I had to do it over again, I would have only done

400 mg and had a much better quality of life for me and my kids.

I feel much better on 400 mg and I gained a lot of weight on the

higher dose. It is starting to come off now and I am able to

do more with my kids.

With warmest regards,

Matt

Zero Club #1078

ville, Florida

Dx January of 2005

Gleevec since March of 2005

Treated at MD

Father of 3

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In a message dated 7/25/2007 10:57:51 P.M. Eastern Standard Time,

zmiller@... writes:

Hi ,

You have had an outstanding result at 800 mg but you are paying a dear price

when it comes to your quality of life.

The latest IRIS studies show that a 3 log reduction is sufficient to keep

you from relapsing with your CML. So what is the point of having a 4 log

reduction and a shitty QOL? Talk to your doctor again and see if he will let

you try a 600 mg dose for a year while monitoring it every 3 months (more

often for the first 3 months) to see where your PCR result is. If it remains

at a 3 log reduction (0.01) then continue on the 600 mg dose. If your PCR

result at the end of the year is back to a 4 log reduction and you are still

experiencing nasty side effects, you should consider going down to a 400 mg

dose.

Going from PCRU to 0.006 may not mean anything. It might simply be within

the limit of the PCR test being done in St. Louis.

It is all common sense to me, especially since the IRIS study has shown that

Gleevec continues to lower the PCR value the longer you take it.

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

e-mail: _zmiller@..._ (mailto:zmiller@...)

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

_____

From: _@..._ (mailto: )

[mailto:_@..._ (mailto: ) ] On Behalf Of

_vegasrnjen@..._ (mailto:vegasrnjen@...)

Sent: July 25, 2007 9:20 PM

_@..._ (mailto: )

Subject: Re: [ ] bone marrow biopsy discussion

I don't know...... I started at a new clinic here in St. Louis and they

apparently drew PCR's on both of my visits in April. I didn't know this as I

was getting them every 6 months. The first one in April was undetectable and

now it is showing 0.006. They were going to lower my dose to 600 with good

results of the most recent BMB, but since it came back 0.006 they want me to

stay on 800mg......

I am SO extremely worn out and fatigues on 800mg that I really would like to

go down to 600 or 400 but if the PCR is starting to climb if ever so small,

I

guess its unlikely that I can reduce it.

They called today and want to check it again in 1 month to see what it is

doing.....

35

CML 5/13/05

Gleevec 800mg

Wife and mother of 3 (11,8,6)

******************************************<WBR>*********<WBR>*********<WBR>***

at

_http://discover._'>http://discover._ (http://discover./)

<_http://discover.http://discovehttp://disco_

(http://discover.aol.com/memed/aolcom30tour) >

aol.com/memed/aol.com/meme

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

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

************************************** Get a sneak peek of the all-new AOL at

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[Guest guest]

Thanks Matt.

I am learning to listen to my body as I think " it " knows best. After

getting the call yesterday that I have been approved through my insurance to do

a

stem cell harvest I think I have decided to stick out the 800mg through the

stem cell harvest and then once that process is complete, I am going to go

down to at least 600mg. I would love to get to 400mg. I have again every

system imaginable as well as I saw the doctor today and started Zoloft (low

dose)

just to maybe help with the blues of not having a normal life right now and

maybe helping me relieve some of the fatigue. I am hoping it works.

I would love to reduce Gleevec and be able to run with my kids and work

again. I would like to not have to dread taking a shower because I don't have

the energy for it. I miss being able to do the small things in life, like work

and shower.

I am not sure what the " right " dose for me is and with my local doctor here,

I don't feel he does either. Its like he leaves it up to me as what we need

to do and I really need some help making this, very important decision. I

don't want to do something to screw up my remission rate. I am not sure what

the right answer is.

Thanks for all the input. I read every email. This site as been wonderful

to me.

35

CML 5/13/05

Gleevec 800mg

Wife and mother of 3 (11,8,6)

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

:

There is much discussion among the specialists one what dose

we should be on. If you are PCRU, then quite frankly you could

be on a lower " maintenance " dose. When I was on 800 mg, my

best PCR was .05. When I reduced to 400 mg, I went to 0.00.

In fact, my local oncologist was the one who almost demanded

that I reduce to 400 mg as he could see I was miserable on the

higher dose.

He says that part of the depression comes with fighting the side

effects constantly. And those side effects are more common at

the higher dosage, more common and more severe. He said it

is like a thorn in your side, which at first is not so bothersome

but over time just begins to frustrate the heck out of you.

I feel much happier on 400 mg and hope you will consider a lower

dose when you finish your harvest. You can always increase it back

to 800 mg..

Funny thing, when I first joined this board I was adamant that I

should stay on 800 mg and bantered with someone about it. In

the end, they were right. It is not worth the damage to your

quality of life.

Be safe and be blessed.

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 7/26/2007 3:28:27 P.M. Eastern Standard Time,

vegasrnjen@... writes:

Thanks Matt.

I am learning to listen to my body as I think " it " knows best. After

getting the call yesterday that I have been approved through my insurance to

do a

stem cell harvest I think I have decided to stick out the 800mg through the

stem cell harvest and then once that process is complete, I am going to go

down to at least 600mg. I would love to get to 400mg. I have again every

system imaginable as well as I saw the doctor today and started Zoloft (low

dose)

just to maybe help with the blues of not having a normal life right now and

maybe helping me relieve some of the fatigue. I am hoping it works.

I would love to reduce Gleevec and be able to run with my kids and work

again. I would like to not have to dread taking a shower because I don't

have

the energy for it. I miss being able to do the small things in life, like

work

and shower.

I am not sure what the " right " dose for me is and with my local doctor here,

I don't feel he does either. Its like he leaves it up to me as what we need

to do and I really need some help making this, very important decision. I

don't want to do something to screw up my remission rate. I am not sure what

the right answer is.

Thanks for all the input. I read every email. This site as been wonderful

to me.

35

CML 5/13/05

Gleevec 800mg

Wife and mother of 3 (11,8,6)

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Jen--

Have you seen Dr. Druker or another specialist? My husband and I just got

back this weekend from spending a couple days up in Portland, OR, and

getting to see Dr. Druker. Wow, what an experience--a wealth of knowledge

and just a super amazing man. Our insurance would not cover the cost, but if

there is any way at all that you can afford to go (if your insurance wont

cover it either), I would highly suggest it. It felt as though we had a 2

hour class from the " father of CML " himself, but tailored exactly to

and 's numbers, etc.

I was just wondering if you have seen a specialist?

Take care and good luck, and you are in my thoughts and prayers...

Regards,

Cervera

>From: vegasrnjen@...

>Reply-

>

>Subject: Re: [ ] bone marrow biopsy discussion

>Date: Thu, 26 Jul 2007 16:17:28 EDT

>

>Thanks Matt.

>

> I am learning to listen to my body as I think " it " knows best. After

>getting the call yesterday that I have been approved through my insurance

>to do a

>stem cell harvest I think I have decided to stick out the 800mg through

>the

>stem cell harvest and then once that process is complete, I am going to go

>down to at least 600mg. I would love to get to 400mg. I have again every

>system imaginable as well as I saw the doctor today and started Zoloft

>(low dose)

>just to maybe help with the blues of not having a normal life right now

>and

>maybe helping me relieve some of the fatigue. I am hoping it works.

>

>I would love to reduce Gleevec and be able to run with my kids and work

>again. I would like to not have to dread taking a shower because I don't

>have

>the energy for it. I miss being able to do the small things in life, like

>work

>and shower.

>

>I am not sure what the " right " dose for me is and with my local doctor

>here,

>I don't feel he does either. Its like he leaves it up to me as what we

>need

>to do and I really need some help making this, very important decision. I

>don't want to do something to screw up my remission rate. I am not sure

>what

>the right answer is.

>

>Thanks for all the input. I read every email. This site as been

>wonderful

>to me.

> 35

>CML 5/13/05

>Gleevec 800mg

>Wife and mother of 3 (11,8,6)

>

>

>

>************************************** Get a sneak peek of the all-new AOL

>at

>http://discover.aol.com/memed/aolcom30tour

>

>

>

[Guest guest]

Hi ,

I was just thinking the other day " I wonder if and saw Dr.

Druker yet " . I'm glad to hear that your consult went well. What did

he say about the 100mg vs 140mg Sprycel debate?

Take care,

Tracey

>

> Jen--

> Have you seen Dr. Druker or another specialist? My husband and I

just got

> back this weekend from spending a couple days up in Portland, OR,

and

> getting to see Dr. Druker. Wow, what an experience--a wealth of

knowledge

> and just a super amazing man. Our insurance would not cover the

cost, but if

> there is any way at all that you can afford to go (if your

insurance wont

> cover it either), I would highly suggest it. It felt as though we

had a 2

> hour class from the " father of CML " himself, but tailored exactly

to

> and 's numbers, etc.

>

> I was just wondering if you have seen a specialist?

> Take care and good luck, and you are in my thoughts and prayers...

>

> Regards,

> Cervera

>

>

> >From: vegasrnjen@...

> >Reply-

> >

> >Subject: Re: [ ] bone marrow biopsy discussion

> >Date: Thu, 26 Jul 2007 16:17:28 EDT

> >

> >Thanks Matt.

> >

> > I am learning to listen to my body as I think " it " knows best.

After

> >getting the call yesterday that I have been approved through my

insurance

> >to do a

> >stem cell harvest I think I have decided to stick out the 800mg

through

> >the

> >stem cell harvest and then once that process is complete, I am

going to go

> >down to at least 600mg. I would love to get to 400mg. I have

again every

> >system imaginable as well as I saw the doctor today and started

Zoloft

> >(low dose)

> >just to maybe help with the blues of not having a normal life

right now

> >and

> >maybe helping me relieve some of the fatigue. I am hoping it

works.

> >

> >I would love to reduce Gleevec and be able to run with my kids and

work

> >again. I would like to not have to dread taking a shower because

I don't

> >have

> >the energy for it. I miss being able to do the small things in

life, like

> >work

> >and shower.

> >

> >I am not sure what the " right " dose for me is and with my local

doctor

> >here,

> >I don't feel he does either. Its like he leaves it up to me as

what we

> >need

> >to do and I really need some help making this, very important

decision. I

> >don't want to do something to screw up my remission rate. I am

not sure

> >what

> >the right answer is.

> >

> >Thanks for all the input. I read every email. This site as been

> >wonderful

> >to me.

> > 35

> >CML 5/13/05

> >Gleevec 800mg

> >Wife and mother of 3 (11,8,6)

> >

> >

> >

> >************************************** Get a sneak peek of the all-

new AOL

> >at

> >http://discover.aol.com/memed/aolcom30tour

> >

> >

> >