putting blind faith in your doctor-Jackie

[Guest guest]

I just want to mention that there have been a number of patients who

we've seen come through these support groups over the years who have

been given seriously flawed advice from so called professionals

(their doctors). By putting your blind faith in your doctor, you

are potentially risking your life and I think people should know the

reality of this and the risks.

Jackie, you may have a very competent doctor, and I hope you do, but

there have been no shortage of horror stories we've seen here about

doctors who didn't know what they were doing.

We've seen patients declared to be cured and taken off all

medication with no testing done only to have their CML come back

with a vengeance and resistant to treatment. We've seen people told

that they were on their death bed and should get their affairs in

order when in fact they were in a deep remission. We've seen people

sent off to transplant for no good reason and we've seen people

denied transplants who really needed them. We've seen patients

given medication that interacted negatively with Gleevec putting

them at risk and we've seen patients given the wrong tests or no

tests at all while being monitored by so called professionals.

We've seen plenty of tests being interpreted wrong by their doctors

and we've seen serious life threatening mistakes made by doctors. I

think we've pretty much seen or heard it all over the years with the

hundreds (probably closer to thousands) of people we've seen come

and go.

CML is very rare and Gleevec is a state of the art drug that works

very differently than any other drug on the market. The majority of

hematologists/oncologists have maybe one or two CML patients in

their practice, if even that many. Do you think they spend hours

and hours researching this disease, travelling to conferences and

consulting with experts when less than 1% of their clientel is

affected?

We are not doctors ourselves (with the exception of one very valued

member who is), but some of us have been reading medical journals

for years and seeking out the opinions and advice of the true CML

experts so I wouldn't be so quick to discount anything we say just

because we aren't doctors. The truth is, some of us do know more

than the average, run of the mill, hematologist/oncologist. This

may sound arrogant but when you hear some of the horror stories that

have happened to people here (and not just in America but all over

the world, in many different countries), you'll see just how

important it is to understand your disease and the implications of

putting blind trust in a doctor. Knowledge is power. This is your

life that's on the line so it's not a time to be complacent.

People in this group (such as Zavie), have educated and informed

others so that they were able to understand that they were getting

inferior care from their doctors. As a result, they found new

doctors who were more knowledgeable and they were able to get better

care. This is the message I want to stress. In fact there are many

of us who have changed doctors over the course of our treatment

and/or sought the advice of CML expert.

I'm not saying listen to us, we know everything. I'm saying talk to

your doctor about the issues we talk about here and after discussing

various issues with him/her, you'll either feel comfortable with

his/her level of experience or you won't. If you aren't comfortable

with your doctor, then get a new one. I have seen too many people

get sick (and worse) by putting blind faith in a doctor who didn't

know what he/she was doing. Just because someone is a doctor, it

doesn't make them a CML expert or even competent to treat a CML

patient.

I'm not saying this to scare anyone but to encourage people to think

for themselves and take control of their lives by not blinding

trusting someone else to make life and death decisions for them.

Your relationship with your doctor should be a partnership, not a

dictatorship.

Tracey

[Guest guest]

Hi Tracey!

Very well said and I cannot agree with you more!

As for Zavie, he was instrumental in listening to my gripes about my

first Hem/Onc. My doctor was pushing me for a transplant even before

giving Gleevec a chance! Zavie gave me the power and information to

face my Doctor and discuss my life and my choices!

When you first get diagnosed with a rare disease, you put all your

faith in your Doctor.. That's what we've been taught to do. But, as

time went on, I had the nagging feeling that my Doctor didn't have MY

best interest in mind, and was very rude and obnoxious! He had the

attitude and said to me.. " I'm the DOCTOR, you're the PATIENT, and

YOU will do what I tell you to do! " ..

Well, Zavie gave me the courage to face my crap PHD Hem/Onc Doctor

and FIRE him! It was the best thing that I could have ever done in

my care! I became PCRU in 9 months and have maintained it.

The Doctor that I fired RETIRED a month later. He didn't even tell

me that he was leaving. So, did he really have MY best interest in

mind? I certainly don't think so.

I have found a wonderful Doctor in the same practice, but he admits

that he only has a few CML patients. We discuss openly all the new

treatments, and drugs etc. in regards to CML. He admits that quite

often, I learn about things first, from the group, before he hears

about them.

We have both agreed that we will teach each other about CML and as

time goes on, we will work as a team and share information with each

other. He welcomes it! We are good friends too, and have a great

patient/doctor relationship. He even has given me his personal email

address, and welcomes me to write to him with any concern or anything

that I feel that he should know about CML..or a phone call, doesn't

matter.. we just work together!

I dont expect him to be a GOD. He's a doctor, but he's human, and

he's overworked and cannot possibly know everything about CML. He

handles every cancer under the sun. I continue to see him because I

am not high risk and my counts and PCR's are steady, but I have

consulted with Dr. Druker, just to make sure I was doing everything

possible with my care. He agreed that I am doing excellent and to

stay the course.

Have faith in your doctor, but the key is to realize that this is all

a learning experience and that we have the obligation to ourselves

and our families to learn everything we can about CML. This disease

and the course of treatment is changing rapidly with all the new

second generation drugs becoming available soon. Have a good,

working relationship with your Doctor. You are equals and should

have one main goal. Good, sound and educated treatment.

Sincerely,

Lynn (Snickersunny)

Dx'd 12/03

PCRU 400 mg Gleevec

>

> I just want to mention that there have been a number of patients

who

> we've seen come through these support groups over the years who

have

> been given seriously flawed advice from so called professionals

> (their doctors). By putting your blind faith in your doctor, you

> are potentially risking your life and I think people should know

the

> reality of this and the risks.

>

> Jackie, you may have a very competent doctor, and I hope you do,

but

> there have been no shortage of horror stories we've seen here about

> doctors who didn't know what they were doing.

>

> We've seen patients declared to be cured and taken off all

> medication with no testing done only to have their CML come back

> with a vengeance and resistant to treatment. We've seen people

told

> that they were on their death bed and should get their affairs in

> order when in fact they were in a deep remission. We've seen

people

> sent off to transplant for no good reason and we've seen people

> denied transplants who really needed them. We've seen patients

> given medication that interacted negatively with Gleevec putting

> them at risk and we've seen patients given the wrong tests or no

> tests at all while being monitored by so called professionals.

> We've seen plenty of tests being interpreted wrong by their doctors

> and we've seen serious life threatening mistakes made by doctors.

I

> think we've pretty much seen or heard it all over the years with

the

> hundreds (probably closer to thousands) of people we've seen come

> and go.

>

> CML is very rare and Gleevec is a state of the art drug that works

> very differently than any other drug on the market. The majority

of

> hematologists/oncologists have maybe one or two CML patients in

> their practice, if even that many. Do you think they spend hours

> and hours researching this disease, travelling to conferences and

> consulting with experts when less than 1% of their clientel is

> affected?

>

> We are not doctors ourselves (with the exception of one very valued

> member who is), but some of us have been reading medical journals

> for years and seeking out the opinions and advice of the true CML

> experts so I wouldn't be so quick to discount anything we say just

> because we aren't doctors. The truth is, some of us do know more

> than the average, run of the mill, hematologist/oncologist. This

> may sound arrogant but when you hear some of the horror stories

that

> have happened to people here (and not just in America but all over

> the world, in many different countries), you'll see just how

> important it is to understand your disease and the implications of

> putting blind trust in a doctor. Knowledge is power. This is your

> life that's on the line so it's not a time to be complacent.

>

> People in this group (such as Zavie), have educated and informed

> others so that they were able to understand that they were getting

> inferior care from their doctors. As a result, they found new

> doctors who were more knowledgeable and they were able to get

better

> care. This is the message I want to stress. In fact there are

many

> of us who have changed doctors over the course of our treatment

> and/or sought the advice of CML expert.

>

> I'm not saying listen to us, we know everything. I'm saying talk

to

> your doctor about the issues we talk about here and after

discussing

> various issues with him/her, you'll either feel comfortable with

> his/her level of experience or you won't. If you aren't

comfortable

> with your doctor, then get a new one. I have seen too many people

> get sick (and worse) by putting blind faith in a doctor who didn't

> know what he/she was doing. Just because someone is a doctor, it

> doesn't make them a CML expert or even competent to treat a CML

> patient.

>

> I'm not saying this to scare anyone but to encourage people to

think

> for themselves and take control of their lives by not blinding

> trusting someone else to make life and death decisions for them.

> Your relationship with your doctor should be a partnership, not a

> dictatorship.

>

> Tracey

>

[Guest guest]

Thank you Tracey for this encouraging and inspiring post. My

grandmother was diagnosed with CML 15 years ago. She was originally

on hydroxyurea (went into a 3 year remission which relapsed), and

was switched to 400 mg Gleevec when it became available. Her

original hematologist/oncologist was great, but when he retired a

few years back, the new Dr, also a hematologist/oncologist,

obviously has had no clue what he's doing. All these years, my

grandma and Aunt who goes with her to all her appointments have

put " blind faith " and trust in the new Dr. Her Bloodwork has been

relatively stable during this time and i guess he had her on 200 mg

Gleeveg for the last 2-3 years. All of a sudden, 3 weeks ago, after

a blood test(WBC=54,600,platelets=120,ooo,abs. neutrophil ct=2.18),

he tells them that he is dismissing her from his care because she

has gone into blast phase, and she only has 3-6 more months to live,

and there is nothing else he can do. WOW!!!!! That came as a total

shock to everyone. Her bloods didn't seem all that bad to me, and he

didn't even do a BMB before saying this. Her last BMB was 3 months

ago, and was still in the chronic stage. My aunt burst into tears

and begged the Dr to do anything, nomatter what the cost, etc....

Because my aunt cried, and ONLY because of that (he says so in his

notes in her chart), he increased her Gleevec from 200mg to 600mg,

and also added 2000mg of hydroxyurea. This is when i started my

internet search and found a few clinical trials, and info on how CML

is really supposed to be treated. The more I searched, the more I

realised what an idiot this Dr was, and that we need to find a CML

specialist fast, or he is going to kill my grandmother playing trial

and error with her medication and wanting to dismiss her. 3 days

later, her blood test showed WBC=13,200, platelets=140,000, abs.

neutrophil ct=1.19. Great, we thought, it responded to the increased

dose. The Dr. still didn't reduce any of her medication, still

telling us it is the end. One week later, blood tests were WBC=1700,

platelets=130,000, abs. neutrophil ct.=0.5. (he basically overdosed

her.)The Dr stopped her hydroxyurea, but still kept her on 600mg

Gleevec. She is going in today for another blood test. We are all

praying everything is back up to normal.

Basically, this idiot Dr. should have just increased her Gleevec

initially instead of jumping to conclusions and dismissing her and

saying it's the end without even doing a BMB. Instead he O.D'd her

with 600mg Gleevec AND 2000mg hydroxyurea. He should have ONLY

increased her Gleevec (if on hydroxyurea alone, the dosage should be

1000-1500mg, and increased to above that ONLY if WBCs are >300,000).

I believe from everything i've researched, that she is still in the

1st/chronic stage.If so, he should've stopped her Gleevec as well

when her abs. neutrophil ct went below 1.0. It is at 0.5 and he

still has her on 600mg. On top of it all, about 5-6 months ago, he

gave my grandmother corticosteroids for pain, which was a STUPID

thing to do because of all the horrible side effects, especially in

a CML patient. Now she has cushing's symptoms, and has to be weaned

off for a year.

Anyways, we were really frustrated, and when I found your post

Tracey, you reinforced our belief that there are hematology/oncology

Dr's that are completely clueless about CML and are playing with

their patients' lives. You gave me and my whole family (who weren't

sleeping anymore, always in tears, praying) HOPE ! I e-mailed your

post to my whole family. You encouraged us to take my grandmother's

health in our own hands and with much research and this group, we

all now feel very optimistic and confident that she will be fine. It

was then that I posted, asking if anyone knew any CML specialists.

with everyone's great responses,(THANK YOU), we now have an

appointment with Dr. Druker in portland in April, and also at the

fred Hutchinson center in Seattle in the meantime to go over all her

options and what medications she should really be on. Again, Thank

you very much.

Jan

>

> I just want to mention that there have been a number of patients

who

> we've seen come through these support groups over the years who

have

> been given seriously flawed advice from so called professionals

> (their doctors). By putting your blind faith in your doctor, you

> are potentially risking your life and I think people should know

the

> reality of this and the risks.

>

> Jackie, you may have a very competent doctor, and I hope you do,

but

> there have been no shortage of horror stories we've seen here

about

> doctors who didn't know what they were doing.

>

> We've seen patients declared to be cured and taken off all

> medication with no testing done only to have their CML come back

> with a vengeance and resistant to treatment. We've seen people

told

> that they were on their death bed and should get their affairs in

> order when in fact they were in a deep remission. We've seen

people

> sent off to transplant for no good reason and we've seen people

> denied transplants who really needed them. We've seen patients

> given medication that interacted negatively with Gleevec putting

> them at risk and we've seen patients given the wrong tests or no

> tests at all while being monitored by so called professionals.

> We've seen plenty of tests being interpreted wrong by their

doctors

> and we've seen serious life threatening mistakes made by doctors.

I

> think we've pretty much seen or heard it all over the years with

the

> hundreds (probably closer to thousands) of people we've seen come

> and go.

>

> CML is very rare and Gleevec is a state of the art drug that works

> very differently than any other drug on the market. The majority

of

> hematologists/oncologists have maybe one or two CML patients in

> their practice, if even that many. Do you think they spend hours

> and hours researching this disease, travelling to conferences and

> consulting with experts when less than 1% of their clientel is

> affected?

>

> We are not doctors ourselves (with the exception of one very

valued

> member who is), but some of us have been reading medical journals

> for years and seeking out the opinions and advice of the true CML

> experts so I wouldn't be so quick to discount anything we say just

> because we aren't doctors. The truth is, some of us do know more

> than the average, run of the mill, hematologist/oncologist. This

> may sound arrogant but when you hear some of the horror stories

that

> have happened to people here (and not just in America but all over

> the world, in many different countries), you'll see just how

> important it is to understand your disease and the implications of

> putting blind trust in a doctor. Knowledge is power. This is

your

> life that's on the line so it's not a time to be complacent.

>

> People in this group (such as Zavie), have educated and informed

> others so that they were able to understand that they were getting

> inferior care from their doctors. As a result, they found new

> doctors who were more knowledgeable and they were able to get

better

> care. This is the message I want to stress. In fact there are

many

> of us who have changed doctors over the course of our treatment

> and/or sought the advice of CML expert.

>

> I'm not saying listen to us, we know everything. I'm saying talk

to

> your doctor about the issues we talk about here and after

discussing

> various issues with him/her, you'll either feel comfortable with

> his/her level of experience or you won't. If you aren't

comfortable

> with your doctor, then get a new one. I have seen too many people

> get sick (and worse) by putting blind faith in a doctor who didn't

> know what he/she was doing. Just because someone is a doctor, it

> doesn't make them a CML expert or even competent to treat a CML

> patient.

>

> I'm not saying this to scare anyone but to encourage people to

think

> for themselves and take control of their lives by not blinding

> trusting someone else to make life and death decisions for them.

> Your relationship with your doctor should be a partnership, not a

> dictatorship.

>

> Tracey

>