Re: New to your group - dh experiencing Gleevec intolerance

August 20, 2005

Hi Sherry,

At 4 months, you seem to have a really good understanding of CML and issues.

How high was your husband's white count at diagnosis? that gives some idea

of the

number of leukemia cells that need to be killed off.....before he can

'uncover' some

normal cells. He has had a good response to Gleevec (IM) so far....and you

are right,

300mg is usually considered to be the lowest therapeutic dose.

First, I would want to know how many CML patients his doc(s) have worked

with, which

tells you their level of experience with Gleevec. You can give 'boosters'

for the white

count (neupogen) but there are not acceptable 'boosters' for the platelets.

When patients

are having a trickier situation with Gleevec, that is when consulting with

a cml specialist

and having them direct care can be worthwhile.......2nd best would be to

have his doctor

consult with one. Don't know where you live, but many people travel to see

Dr. Druker

(or his associate Dr. Mauro) at OHSU in Portland, Oregon......who you may

know developed

Gleevec. Then Dr. Druker makes the treatment decisions.......but you do

local blood tests

and have the results faxed to him. There are also other cml

specialists.......I just personally

know that patients get top care at OHSU and we have folks on this list you

travel to Oregon

from the east coast and Florida to see him.

Personally I think a good doctor always involves the patient in the

decision making....and lays

the options (pros and cons) on the table. Right now your husband needs you

to be his advocate...

he may just be too stressed with the dx to be actively involved. Hope some

of this info helps,

please continue to ask the list questions.

C.

cml oldtimer, on Gleevec since 2-2000

At 12:08 PM 8/20/05 +0000, you wrote:

>Hi all... I'm Sherry and my dh (age 37) was dx just 4 months ago

>with CML - ph+, accelerated phase. He started the " wonder drug " and

>has not done well with neutropenia and thrombocytopenia. All the

>same he has dropped form 88% to 28% leukemic cells present in FISH.

>His second PCR was drawn yesterday.

>

>I'm just wondering if anyone has had the level of intolerance he is

>experiencing with Gleevec and how low the docs actually dropped the

>dosage? He started on 600mg, and within 2 weeks platelets were at 15

>and neutros at 0.5. Once he recovered, dosage was dropped to 400mg

>and the same thing happened after 18 days. During his last drug

>holiday, with plans for one more shot at 300mgs, my husband asked

>the direct question if 300 causes the same response, can we try 200

>and the doc said NO. 200mg would not have an effect on the cancer,

>so we would then have to discuss moving forward with the bmt (we

>have a related doner, hooray!). This week, Lorne had to stall the

>treatment again because of thrombocytopenia and doc wants him to try

>200mg once his cbc has recovered. ??????? So which is it - I don't

>think we are getting all of the info that is being discussed between

>all of the medical players. They want to try anf build up his

>tolerance to the drug.

>

>I have been doing some research and so far have not found one

>reference to a dosage of less than 300mg. Not only that, but all I

>have read indicates that in the accelerated phase, this course of

>action is not recommended at all. I need to know the rationale

>behind this new plan and my dh is happy to just follow doctors

>orders, no questions asked. I need fuel for my fire - so to speak. I

>can't make him understand that he should be informed of any varying

>opinions among the medical team and then WE can make an informed

>decision.

>

>Please email me if you have any info to share... thanks

>

>Sherry

>

August 20, 2005

I'm a bit of a control freake - or a lot of one - so when Lorne was

dx I had to know what we were facing. It helps that our daughter was

born with a congenital defect so I've done the medical research

thing before and had an easier time finding quality info. I guess

now I have two t-shirts.

On diagnosis, Lorne's white count was at 36, he was already anemic

and his platelets were low. Not what they normally see on diagnosis.

As he had not been feeling ill up to that point, it is felt that his

cancer is rather aggressive. At that time, it was indicated that

transplant would have to happen sooner rather than later and that

Gleevec would be the precursor to get Lorne back to a chronis phase

to increase the liklihood of success. By July 5th, we were in

Halifax for a consult with Dr. Couban (transplant specialist), knew

that Lorne's brother was an exact match and had already started a

drug holiday. Obviously, this is the short version of all that has

happened.

Lorne's doc is the head of haematology here in Newfoundland, so I'm

guessing that all CML files fall on his desk at some point during

diagnosis and treatment. He has a team of specialists of varying

backgrounds and works closely with the tranplant teams in both

Halifax and Ottawa. He is known the world over and recently returned

from speaking at a conference in Switzerland, so I do not doubt his

capabilities. Rather, I think it is politics and the way our health

care system runs that is affecting the way things are going at this

point. " Team " decisions are made here, so if there is controversy,

there must be concensus. I just think that we should be part of the

decision making process (And I think our doc agrees as he has

already fought our battle regarding the bmt in Halifax - another

story for another day).

Regarding the dosage and platelet counts, he recently stopped a 16-

day stint on 300mgs where his platelets dropped from 156 to 109. He

has gotten as low as 15 so doc stopped him rather than let that

happen again.

Part of me is tired of being the advocate. Because of Lorne's

particular work, he has had to go on disablilty right away. I have

fought the insurance fight, the pharmacy fight, and who knows what

other fights. I have been making sure we get all of the government

funding that is available for medical travel and keeping track of

all the paper work so we have it ready for the next time around. And

he just sits back and pretends everything is fine. He forgets that

he was told Gleevec won't likely be a saving grace for him. He

forgets that on day one he was told bmt is inevitable in his case. I

don't know that I can keep being his voice when I'm doing it against

his will. I have gone out on a limb though and found Dr. Druker's

email address. Maybe he will respond with a hammer I can hit my

husband over the head with! (sick humour is all that keeps me

sane...)

Thanks for letting me go on and on and on... Sherry

> >Hi all... I'm Sherry and my dh (age 37) was dx just 4 months ago

> >with CML - ph+, accelerated phase. He started the " wonder drug "

and

> >has not done well with neutropenia and thrombocytopenia. All the

> >same he has dropped form 88% to 28% leukemic cells present in

FISH.

> >His second PCR was drawn yesterday.

> >

> >I'm just wondering if anyone has had the level of intolerance he

is

> >experiencing with Gleevec and how low the docs actually dropped

the

> >dosage? He started on 600mg, and within 2 weeks platelets were at

15

> >and neutros at 0.5. Once he recovered, dosage was dropped to 400mg

> >and the same thing happened after 18 days. During his last drug

> >holiday, with plans for one more shot at 300mgs, my husband asked

> >the direct question if 300 causes the same response, can we try

200

> >and the doc said NO. 200mg would not have an effect on the cancer,

> >so we would then have to discuss moving forward with the bmt (we

> >have a related doner, hooray!). This week, Lorne had to stall the

> >treatment again because of thrombocytopenia and doc wants him to

try

> >200mg once his cbc has recovered. ??????? So which is it - I don't

> >think we are getting all of the info that is being discussed

between

> >all of the medical players. They want to try anf build up his

> >tolerance to the drug.

> >

> >I have been doing some research and so far have not found one

> >reference to a dosage of less than 300mg. Not only that, but all I

> >have read indicates that in the accelerated phase, this course of

> >action is not recommended at all. I need to know the rationale

> >behind this new plan and my dh is happy to just follow doctors

> >orders, no questions asked. I need fuel for my fire - so to

speak. I

> >can't make him understand that he should be informed of any

varying

> >opinions among the medical team and then WE can make an informed

> >decision.

> >

> >Please email me if you have any info to share... thanks

> >

> >Sherry

> >

August 21, 2005

At 10:21 PM 8/20/05 +0000, you wrote:

>On diagnosis, Lorne's white count was at 36, he was already anemic

>and his platelets were low. Not what they normally see on diagnosis.

>As he had not been feeling ill up to that point, it is felt that his

>cancer is rather aggressive. At that time, it was indicated that

>transplant would have to happen sooner rather than later and that

>Gleevec would be the precursor to get Lorne back to a chronis phase

>to increase the liklihood of success. By July 5th, we were in

>Halifax for a consult with Dr. Couban (transplant specialist), knew

>that Lorne's brother was an exact match and had already started a

>drug holiday. Obviously, this is the short version of all that has

>happened.

>

>Regarding the dosage and platelet counts, he recently stopped a 16-

>day stint on 300mgs where his platelets dropped from 156 to 109. He

>has gotten as low as 15 so doc stopped him rather than let that

>happen again.

Hi Again,

There is an old timer on this list.... Sao , who has been

dealing with cml for 5+ years and she was from Halifax.......just moved to

Ottawa. I am not sure she is always reading the list...she is not doing a

new drug trial for BMS, but I will tell her about you.

Other questions.....

on what basis did they consider your husband to be accelerated? there are

certain criteria for that designation....like higher basophil count,

enlarged spleen, etc.

As far as treatment, it seems 'odd' to stop the drug when the platelets are

still 109....that is not considered low........and just because he dropped

low the first go round with the drug, it does not always mean that will

happen again. The standard criteria to stop is when the platelets drop to 50...

and even after you stop the drug they may drop lower, but then recover.

I don't know all that much about the Canadian health care

system.........the politics of who you get to see, etc.........

might have some good info for you.......also Cheryl-Anne is from Canada.

There is a thing called a Sokol score (not sure that is spelled

right)......it is a way to determine how high of risk a person is with this

disease. The problem with seeing a bmt specialist is that they will almost

always recommend a bmt. If you see a cml specialist....they should give you

the pros and cons of each option for your own situation.

Sometimes men do not like dealing with medical issues (I say that having

worked in the medical field for over 30 years)..........or it might just be

his personality to want someone else to take charge and make decisions. But

hopefully he will learn that knowledge is power.........and being informed

gives you some sense of control over this diagnosis. Dr. D is very good

about responding to people......

let us know if you hear back from him.

Not to forget the other Canadians on the list.........Zavie, Tracey.......

hopefully they can all share with you. For most of us in the US, we simply

choose who we want to see for an opinion.

Best wishes,

Cogan

PS you might catch the attention of and other Canadians if you

post that as your subject

August 22, 2005

The phase of his disease is being questioned in Halifax because he

has no enlarged spleen, nor has he been ill. However, he had almost

30% blasts. Things are not as they are normally seen in CML in his

case, so there have to be some assumptions. The Gleevec was stopped

early on this run with it because of how quickly the platelets are

dropping - drop of 40 in 2 days is pretty indicative of an adverse

reaction. This is our third attempt with a lower dosage of Gleevec.

Also, as I have said, I don't think our doc agrees with this process

but hasn't said so. we have been given the pros and cons... bmt

specialist in Halifax does not want to do the transplant until Lorne

has 3 consecutive months on Gleevec, which he has been unable to

do.

>

> >On diagnosis, Lorne's white count was at 36, he was already anemic

> >and his platelets were low. Not what they normally see on

diagnosis.

> >As he had not been feeling ill up to that point, it is felt that

his

> >cancer is rather aggressive. At that time, it was indicated that

> >transplant would have to happen sooner rather than later and that

> >Gleevec would be the precursor to get Lorne back to a chronis

phase

> >to increase the liklihood of success. By July 5th, we were in

> >Halifax for a consult with Dr. Couban (transplant specialist),

knew

> >that Lorne's brother was an exact match and had already started a

> >drug holiday. Obviously, this is the short version of all that has

> >happened.

> >

> >Regarding the dosage and platelet counts, he recently stopped a

16-

> >day stint on 300mgs where his platelets dropped from 156 to 109.

He

> >has gotten as low as 15 so doc stopped him rather than let that

> >happen again.

>

> Hi Again,

>

> There is an old timer on this list.... Sao , who

has been

> dealing with cml for 5+ years and she was from Halifax.......just

moved to

> Ottawa. I am not sure she is always reading the list...she is not

doing a

> new drug trial for BMS, but I will tell her about you.

>

> Other questions.....

> on what basis did they consider your husband to be accelerated?

there are

> certain criteria for that designation....like higher basophil

count,

> enlarged spleen, etc.

>

> As far as treatment, it seems 'odd' to stop the drug when the

platelets are

> still 109....that is not considered low........and just because he

dropped

> low the first go round with the drug, it does not always mean that

will

> happen again. The standard criteria to stop is when the platelets

drop to 50...

> and even after you stop the drug they may drop lower, but then

recover.

>

> I don't know all that much about the Canadian health care

> system.........the politics of who you get to see,

etc.........

> might have some good info for you.......also Cheryl-Anne is from

Canada.

>

> There is a thing called a Sokol score (not sure that is spelled

> right)......it is a way to determine how high of risk a person is

with this

> disease. The problem with seeing a bmt specialist is that they

will almost

> always recommend a bmt. If you see a cml specialist....they should

give you

> the pros and cons of each option for your own situation.

>

> Sometimes men do not like dealing with medical issues (I say that

having

> worked in the medical field for over 30 years)..........or it

might just be

> his personality to want someone else to take charge and make

decisions. But

> hopefully he will learn that knowledge is power.........and being

informed

> gives you some sense of control over this diagnosis. Dr. D is very

good

> about responding to people......

> let us know if you hear back from him.

>

> Not to forget the other Canadians on the list.........Zavie,

Tracey.......

> hopefully they can all share with you. For most of us in the US,

we simply

> choose who we want to see for an opinion.

>

> Best wishes,

> Cogan

>

> PS you might catch the attention of and other Canadians

if you

> post that as your subject

>

August 22, 2005

Have you discussed with his doctors trying some of the new drugs for CML, either

the BMS drug or AMN107? Both drugs were designed to combat Gleevec resistance

and the word is they have fewer side effects. Both are in clinical trials and

they may offer your husband an effective way to treat his CML without having to

go to a transplant.

Adrienne

rockgal70 <sherryryan@...> wrote: