RE: Liver toxicity update and DR. DRUKER

[Guest guest]

-

Glad to hear that the counts are coming down for his liver.

I just wanted to throw out my 2 cents. I see Dr. Mauro in Portland. I have

a local oncologist who teams up with Dr. Mauro with Dr. Mauro basically

running the program of my dose, treatments, etc. I think in my case it has

been

a team effort with getting opinions of all my doctors, myself and then coming

to a conclusion of what to do next. In my case we are considering lowering

my dose to 600mg. I see both sides of your doctor and in my case, I would

have to make sure whatever I did was covered under my health plan. Gleevec

and CML treatments are EXPENSIVE. City of Hope has great doctors and I know a

lot of people who have gone there, some have had transplants there too. In

your case, your doctor there stated and agreed that transplant would be a last

resort option so I don't think just because you will see the head of the

transplant he will push you to it. My local doctor here in St. Louis is head

of

transplant at Washington University but has stated to me that transplant is

last resort. They will support you in whatever direction you guys as the

patients wants to go. Educate yourselves with all your doctors and then

discuss

it and make a decision. If you decide to go to City of Hope as long as its

a CML doctor you will be in good hands. You could always call up or email

Dr. Druker or Dr. Mauro with questions once you see your new doctor just to

make sure that they concur with what you were told. They have always responded

when I have emailed. I have also had to be listed on the transplant list

although my sister, brother, kids and hubby are not matches. I think maybe

they

start that for a lot of patients, not meaning that you have to or are going

for a transplant. I have 2 unrelated matches in the system although they

dont feel I will ever need a transplant. I sure hope not but we have to keep

options open.

I think you have been getting some great advice from the CML experts on this

site. They are a great bunch of people. I hope someday will pop on

for a minute and say hi to all of us. You guys sound like a great couple and I

wish you nothing but the best.

Hugs-

35

CML 5/13/05

Gleevec 800 mg PCRU

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

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

[Guest guest]

Hi ,

I'm so glad that 's counts are improving! Normally I would see a

red flag if someone said their doctor didn't want them seeing an

expert but in your case, 's doctor IS seeking expert advice so I

can understand why you feel she is competent. I think if she

insisted on doing things herself, and not consulting with anyone,

then that would be a problem but that's not the case.

If 's liver continues to recuperate quickly, there's a good

chance that he'll be able to restart Gleevec and work his way back up

to 400mg without ever having another problem so at this point, I

don't think there's any urgency for him to seek a consult with an

expert. It looks like his current doctor is on top of things and

isn't hiding behind an ego like some other doctors are. So far, she

is doing exactly what the protocol says and you really can't ask for

more than that.

As far as " complications " go, 's is fairly straight forward and

not really that complicated at all when you think about it.

Take care,

Tracey

>

> Hi all--

> ¡¦s liver counts have recovered significantly from being OFF

Gleevec for

> 7 days now, his blood/platelet counts are all in the normal

range..on the

> low side of normal, but normal nonetheless! His liver is still

¡§out of

> whack¡¨, so they are keeping him off Gleevec another 7 days to see

if his

> liver recovers more. At that point, his onc. (along with her

contacts at

> Novartis), will put him back on Gleevec¡Xonly at 300mg, and monitor

him

> closely.

>

> We have made the necessary phone calls to Dr. Druker¡¦s office and

are

> waiting for calls back. We have contacted our health insurance

(Kaiser

> Permanente), and have found out that in order to be covered at all,

¡¦s

> oncologist must refer us direclty to Dr. Druker. In talking to

¡¦s onc.,

> she has said at this point she will not do that. See, Kaiser is

closely

> affiliated with The City of Hope Cancer Research Center, and Kaiser

refers

> patients to the CML specialists at The City of Hope first (in fact,

many of

> those doctors are actually Kaiser doctors). In fact, when was

> hospitalized last October due to severe neutropenia, we actually

did get

> referred to The City of Hope and got to see their lead CML

specialist. He

> was very knowledgable and after going through ¡¦s records, told

us at

> that he really believed that due to ¡¦s Gleevec break, his

counts would

> recover on their own, explaining that many new patients on Gleevec

suffer

> from Neutropneia because Gleevec is targeting the ¡§leukemic¡¨

cells, and

> since most of his cells were ¡§leukemic¡¨, that of course he was

suffering

> from neutropenia. He told us that we had to give it time, and

¡¦s counts

> would come up, and that once back on Gleevec, he would probably do

quite

> well. And that is precisely what happened.

>

> But, during that time this same CML specialist also had ¡¦s

name put on

> the Bone Marrow Transplant list ( is an only child, sibling

match is

> impossible), and discussed the option of a BMT. Which makes sense,

since

> this doctor (CML specialist) is also head of the Bone Marrow

Transplant

> program. He also mentioned many times that he knows Gleevec very

well since

> he was part of the initial trial program, but we were still leary

just in

> that he is head of the Bone Marrow Transplant program, and

understandably

> might try and push that option. But, even he said BMT is a last

resort, and

> front line treatment is Gleevec¡Kthat made us feel a little better!!

>

> With all of this said, we still want to see Dr. Druker,

because¡Kwell..it¡¦s

> DOCTOR DRUKER!! So, now we are at a dilemma. See, we are willing to

pay the

> costs ourselves, and go to Dr. Druker. But what if he wants to put

on a

> different regimen than ¡¦s onc¡Khow could we follow that advice

without

> being covered by our insurance? That potentially could get very

expensive.

> We very much respect and trust ¡¦s onc., and so far she has

proven

> herself to be extremely knowledgeable in CML, and Gleevec. She is

constantly

> consulting Novartis, as well as her contacts at City of Hope, too.

We see

> her side, too, of not wanting to refer a patient to another

specialist,

> since she already has her own specialists she can refer patients

to. We were

> honest and told her all of this, and she said that by all means,

she would

> respect Dr. Druker¡¦s opinions and medical advice.

>

> So-for those of you who¡¦ve seen Dr. Druker¡Xhow do you manage that

> relationship along with that of your local oncologist? Does Dr.

Druker

> become your ¡§primary¡¨ doctor? Or, do you just consult with him

and get his

> take on things and then you, yourself, have to relay that info to

your own

> oncologist?

>

> Sorry for the long post ( would be so upset telling me to ¡§cut

the crap

> and get to the point¡¨!!!!)¡Kwhat can I say, it¡¦s the age-old

topic of

> women saying 30,000 words per day while men say something like

5,000. ļ

>

> Cervera

>

> _________________________________________________________________

> PC Magazine's 2007 editors' choice for best Web mail—award-winning

Windows

> Live Hotmail.

> http://imagine-windowslive.com/hotmail/?locale=en-

us & ocid=TXT_TAGHM_migration_HM_mini_pcmag_0507

>

[Guest guest]

Hi --

You are so right--we have an amazing doctor and feel like we are one of the

lucky ones--she is open to listening to and his needs, though we do

understand that a huge part of healthcare is the business side...involving

politics, money, etc., and understand why she needs to consult her experts

first--but the awesome thing is...she has experts to consult!! And we have

already even met with them...though it was not over the liver issue..it was

over neutropenia, and it was months back.

For now, is still on his Gleevec break for another week, at which point

hopefully he will go back on a reduced doseage of Gleevec and this will all

be behind us soon...

>From: " Tracey " <traceyincanada@...>

>Reply-

>

>Subject: [ ] Re: Liver toxicity update and DR. DRUKER

>Date: Wed, 30 May 2007 13:06:22 -0000

>

>Hi ,

>

>I'm so glad that 's counts are improving! Normally I would see a

>red flag if someone said their doctor didn't want them seeing an

>expert but in your case, 's doctor IS seeking expert advice so I

>can understand why you feel she is competent. I think if she

>insisted on doing things herself, and not consulting with anyone,

>then that would be a problem but that's not the case.

>

>If 's liver continues to recuperate quickly, there's a good

>chance that he'll be able to restart Gleevec and work his way back up

>to 400mg without ever having another problem so at this point, I

>don't think there's any urgency for him to seek a consult with an

>expert. It looks like his current doctor is on top of things and

>isn't hiding behind an ego like some other doctors are. So far, she

>is doing exactly what the protocol says and you really can't ask for

>more than that.

>

>As far as " complications " go, 's is fairly straight forward and

>not really that complicated at all when you think about it.

>

>Take care,

>Tracey

>

>

>

>

> >

> > Hi all--

> > ¡¦s liver counts have recovered significantly from being OFF

>Gleevec for

> > 7 days now, his blood/platelet counts are all in the normal

>range..on the

> > low side of normal, but normal nonetheless! His liver is still

>¡§out of

> > whack¡¨, so they are keeping him off Gleevec another 7 days to see

>if his

> > liver recovers more. At that point, his onc. (along with her

>contacts at

> > Novartis), will put him back on Gleevec¡Xonly at 300mg, and monitor

>him

> > closely.

> >

> > We have made the necessary phone calls to Dr. Druker¡¦s office and

>are

> > waiting for calls back. We have contacted our health insurance

>(Kaiser

> > Permanente), and have found out that in order to be covered at all,

>¡¦s

> > oncologist must refer us direclty to Dr. Druker. In talking to

>¡¦s onc.,

> > she has said at this point she will not do that. See, Kaiser is

>closely

> > affiliated with The City of Hope Cancer Research Center, and Kaiser

>refers

> > patients to the CML specialists at The City of Hope first (in fact,

>many of

> > those doctors are actually Kaiser doctors). In fact, when was

> > hospitalized last October due to severe neutropenia, we actually

>did get

> > referred to The City of Hope and got to see their lead CML

>specialist. He

> > was very knowledgable and after going through ¡¦s records, told

>us at

> > that he really believed that due to ¡¦s Gleevec break, his

>counts would

> > recover on their own, explaining that many new patients on Gleevec

>suffer

> > from Neutropneia because Gleevec is targeting the ¡§leukemic¡¨

>cells, and

> > since most of his cells were ¡§leukemic¡¨, that of course he was

>suffering

> > from neutropenia. He told us that we had to give it time, and

>¡¦s counts

> > would come up, and that once back on Gleevec, he would probably do

>quite

> > well. And that is precisely what happened.

> >

> > But, during that time this same CML specialist also had ¡¦s

>name put on

> > the Bone Marrow Transplant list ( is an only child, sibling

>match is

> > impossible), and discussed the option of a BMT. Which makes sense,

>since

> > this doctor (CML specialist) is also head of the Bone Marrow

>Transplant

> > program. He also mentioned many times that he knows Gleevec very

>well since

> > he was part of the initial trial program, but we were still leary

>just in

> > that he is head of the Bone Marrow Transplant program, and

>understandably

> > might try and push that option. But, even he said BMT is a last

>resort, and

> > front line treatment is Gleevec¡Kthat made us feel a little better!!

> >

> > With all of this said, we still want to see Dr. Druker,

>because¡Kwell..it¡¦s

> > DOCTOR DRUKER!! So, now we are at a dilemma. See, we are willing to

>pay the

> > costs ourselves, and go to Dr. Druker. But what if he wants to put

> on a

> > different regimen than ¡¦s onc¡Khow could we follow that advice

>without

> > being covered by our insurance? That potentially could get very

>expensive.

> > We very much respect and trust ¡¦s onc., and so far she has

>proven

> > herself to be extremely knowledgeable in CML, and Gleevec. She is

>constantly

> > consulting Novartis, as well as her contacts at City of Hope, too.

>We see

> > her side, too, of not wanting to refer a patient to another

>specialist,

> > since she already has her own specialists she can refer patients

>to. We were

> > honest and told her all of this, and she said that by all means,

>she would

> > respect Dr. Druker¡¦s opinions and medical advice.

> >

> > So-for those of you who¡¦ve seen Dr. Druker¡Xhow do you manage that

> > relationship along with that of your local oncologist? Does Dr.

>Druker

> > become your ¡§primary¡¨ doctor? Or, do you just consult with him

>and get his

> > take on things and then you, yourself, have to relay that info to

>your own

> > oncologist?

> >

> > Sorry for the long post ( would be so upset telling me to ¡§cut

>the crap

> > and get to the point¡¨!!!!)¡Kwhat can I say, it¡¦s the age-old

>topic of

> > women saying 30,000 words per day while men say something like

>5,000. ļ

> >

> > Cervera

> >

> > _________________________________________________________________

> > PC Magazine's 2007 editors' choice for best Web mail—award-winning

>Windows

> > Live Hotmail.

> > http://imagine-windowslive.com/hotmail/?locale=en-

>us & ocid=TXT_TAGHM_migration_HM_mini_pcmag_0507

> >

>

>

_________________________________________________________________

PC Magazine’s 2007 editors’ choice for best Web mail—award-winning Windows

Live Hotmail.

http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migration_HM\

_mini_pcmag_0507

[Guest guest]

, does feel any different being off Gleevec, like any of the

Gleevec side effects subsiding? I guess what I am getting at is at least maybe

he

is getting a break from any of those he may have been experiencing.

Chris

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

[Guest guest]

:

I have been on Gleevec for over two years. I was on 800 mg for the first 12

months and my PCR went from 97.6 to .05. At the one year mark, I took a two

week break and reduced the dose to 400 mg and then again 9 months after

that, took another break, due to my problems with fatigue and other side

effects.

After taking breaks, my PCR went up to 6.62. So taking breaks did not

really work for me, but there have been others on this site that it has worked

for. I even remember one post that spoke of " Pulse Therapy " which he described

as either several weeks or months on and the same time off.

I know some of the long timers on this site have never taken a break, but

for people like your husband and I, a break makes us feel like our old selves.

If my results do not return to .0something, I am most likely going to move

to Sprycel.

I give thanks for what Gleevec has done for me and my family, but at the

same time, it is very harsh on my body and I am sure, your husbands as well.

Be well and be blessed. I hope you hear success stories from your post,

because it seems that no two reactions to medication are exactly the same.

Sincerely,

Matt

ville, Florida

Dx January of 2005

Gleevec since March of 2005

Treated at MD

Father of 3

In a message dated 5/31/2007 3:06:33 P.M. Eastern Standard Time,

weez_555@... writes:

Yeah---we have been joking that he is on a cancer break...obviousely, that

is far from the case! But, he is really on a Gleevec break and feels

awesome. He is usually very fatigued after taking his Gleevec, for about 2-3

hours...and since he takes care of our 13-month old, it makes him doubly

tired. These last 2 weeks he has felt great, and loves not having to stuff

himself with food to take Gleevec, and loves not being tired. He doesnt

dread going back on Gleevec..he cant wait to get back on it since he knows

that is what is keeping him healthy and alive...

I have heard of people being on Gleevec, then off, then on, then off. I dont

think any doctors advise that, but I have heard of that....does anybody know

people who do that? would never go against what his doctors advise, but

he has had a nice mini break, though in the long-run, we hope this doesnt

happen again.

>From: letitbe@...

>Reply-

>

>Subject: Re: [ ] Liver toxicity update and DR. DRUKER

>Date: Thu, 31 May 2007 15:27:09 EDT

>

>, does feel any different being off Gleevec, like any of the

>Gleevec side effects subsiding? I guess what I am getting at is at least

>maybe he

>is getting a break from any of those he may have been experiencing.

>

>Chris

>

>

>

>************************************** See what's free at

>http://www.aol.com.

>

>

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

>

_________________________________________________________________

Don’t miss your chance to WIN $10,000 and other great prizes from Microsoft

Office Live http://clk.atdmt.com/MRT/go/aub0540003042mrt/direct/01/

Groups Links

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

[Guest guest]

Yeah---we have been joking that he is on a cancer break...obviousely, that

is far from the case! But, he is really on a Gleevec break and feels

awesome. He is usually very fatigued after taking his Gleevec, for about 2-3

hours...and since he takes care of our 13-month old, it makes him doubly

tired. These last 2 weeks he has felt great, and loves not having to stuff

himself with food to take Gleevec, and loves not being tired. He doesnt

dread going back on Gleevec..he cant wait to get back on it since he knows

that is what is keeping him healthy and alive...

I have heard of people being on Gleevec, then off, then on, then off. I dont

think any doctors advise that, but I have heard of that....does anybody know

people who do that? would never go against what his doctors advise, but

he has had a nice mini break, though in the long-run, we hope this doesnt

happen again.

>From: letitbe@...

>Reply-

>

>Subject: Re: [ ] Liver toxicity update and DR. DRUKER

>Date: Thu, 31 May 2007 15:27:09 EDT

>

>, does feel any different being off Gleevec, like any of the

>Gleevec side effects subsiding? I guess what I am getting at is at least

>maybe he

>is getting a break from any of those he may have been experiencing.

>

>Chris

>

>

>

>************************************** See what's free at

>http://www.aol.com.

>

>

>

[Guest guest]

wrote:

just got an appointment with Dr. Druker for July 26th---yae! So, I

guess and I will make a weekend of it in Portland, OR.

Hi ,

I think like everyone else who has gone there, you will like the personal

attention that you get at OHSU and Dr. Druker listens very hard to what you

say and answers all your questions. It can be just a one time consult....or

you can stay connected with him and he will get a copy of any/all blood

tests, etc. You will not know until resumes Gleevec if the liver issue

was a one time thing and resolves easily or if the toxicity comes

back.....so not having an appointment until after that is good timing. This

might not have been a necessary consult for you, but I think it will give

you peace of mind....and that is worth a lot. Portland is a very neat city

and there are a lot of things to see (write me if you want some ideas).

Also, if staying in Portland is a financial hardship, ask to talk to the

Social Worker about a complimentary room from the Amer. Cancer

Society.....or mention to anyplace that you book a room that you will be

going to OHSU for a medical appt. and there are rate discounts. Many

hotels, you can get a shuttle from the airport to the hotel....and some

even will shuttle you to the Med. Center. The Social Worker can tell you

about all these options.

C.