Re: Washington DC area CML docs

[Guest guest]

Dear ,

Thank you so much for your input. Most patients don't have these choices

when they are looking for a CML specialist in their area. I remember Carol

from the early STI571 days. Her location was a trial option for me.

It looks like you have a winner with Dr. Rapaport. I will add him to my

list. When our group gets together we always compare how well the doctors do

the BMBs.

Zavie

Zavie (age 68)

67 Shoreham Avenue

Ottawa, Canada, 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

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

[ ] Washington DC area CML docs

Hi.

We all have our own experiences with docs and sometimes there's really no

good answer for it but this is what I've experienced:

Bruce Cheson at town gave me the most painful BMB with lasting effects

for weeks when I was trying to get into the Sprycel trial. I know he is

well known and generally well-regarded so this may be an anomaly. But,

after 3 BMBs with greatly differing results over a two-month period he did

not let me into the trial. A week later I got into the trial at the

University of land where the BMB results were clear and I had gone from

cytogenetic zero to 17 positive cells in my marrow and the PCR and FISH

results were high, too. Now, a few months later I am zero cyto, zero FISH

and 0.0003 PCR. Dr. Rapaport at the Greenebaum Cancer Center in

Baltimore at the University of land is my doctor. He's a CML specialist

with a full staff and is not only highly competent but kind as well.

I also have gone to Dr. Victor Priego in Bethesda at the Blood Disorder and

Cancer Center. He's not a CML specialist but knows a LOT and is guided by a

doc at MDACC in Houston. It was Dr. Priego who did a FISH test and found

that it was 4% instead of zero and sounded the alarm that I must get into

the dasatinib trial. He helped as much as possible and is worth seeing.

Also, Dr, Carol was part of the early days of Gleevec and believes in

it to a fault. I saw her for about a year and she was so confident that my

counts were steady and the meds were working that she didn't see me for

three months even for a CBC. When I went in for my three month appointment

my counts were so low that I was immediately hospitalized and given a

two-bag transfusion. That's when I found Dr. Priego. However, she does

indeed have an excellent reputation.

I am not trying to badmouth any of these doctors but as unusual as my

experiences might have been there have been two cases when my life was

literally in jeopardy.

Now I know much more and am a better patient than I used to be so I would

never let a doc wait three months for a CBC! And I wouldn't go back to a

doctor for a second and third BMB when the results were so questionable the

first time around which could have simply been bad lab work.

But, those are my experiences for what the information may be worth to

anyone.

L

[Guest guest]

Nice to hear from you Zavie. Dr. Rapoport is very good at BMA's. For several

reasons (including Dr. Cheson) I now have to get BMMA's from my sternum and Dr/

R is excellent chatting away so I don't freak out. It's somewhat painful but

not so bad as the hip. Shorter needle because it's right over the heart. Only

certain docs who have special training can do the sternum test.

[ ] Washington DC area CML docs

Hi.

We all have our own experiences with docs and sometimes there's really no

good answer for it but this is what I've experienced:

Bruce Cheson at town gave me the most painful BMB with lasting effects

for weeks when I was trying to get into the Sprycel trial. I know he is

well known and generally well-regarded so this may be an anomaly. But,

after 3 BMBs with greatly differing results over a two-month period he did

not let me into the trial. A week later I got into the trial at the

University of land where the BMB results were clear and I had gone from

cytogenetic zero to 17 positive cells in my marrow and the PCR and FISH

results were high, too. Now, a few months later I am zero cyto, zero FISH

and 0.0003 PCR. Dr. Rapaport at the Greenebaum Cancer Center in

Baltimore at the University of land is my doctor. He's a CML specialist

with a full staff and is not only highly competent but kind as well.

I also have gone to Dr. Victor Priego in Bethesda at the Blood Disorder and

Cancer Center. He's not a CML specialist but knows a LOT and is guided by a

doc at MDACC in Houston. It was Dr. Priego who did a FISH test and found

that it was 4% instead of zero and sounded the alarm that I must get into

the dasatinib trial. He helped as much as possible and is worth seeing.

Also, Dr, Carol was part of the early days of Gleevec and believes in

it to a fault. I saw her for about a year and she was so confident that my

counts were steady and the meds were working that she didn't see me for

three months even for a CBC. When I went in for my three month appointment

my counts were so low that I was immediately hospitalized and given a

two-bag transfusion. That's when I found Dr. Priego. However, she does

indeed have an excellent reputation.

I am not trying to badmouth any of these doctors but as unusual as my

experiences might have been there have been two cases when my life was

literally in jeopardy.

Now I know much more and am a better patient than I used to be so I would

never let a doc wait three months for a CBC! And I wouldn't go back to a

doctor for a second and third BMB when the results were so questionable the

first time around which could have simply been bad lab work.

But, those are my experiences for what the information may be worth to

anyone.

L

[Guest guest]

My Dr. (Dr. Grennan) is awesome at the sternum BMB. Very little pain if any.

I have never had to experience one fromn the hip. I heard I am not missing much

.... I was blessed from the beginning with his attentiveness and knowledge.

He is with Northern California Kaiser, Sacramento.

Loewenkamp <loewen1@...> wrote: Nice to hear from you Zavie.

Dr. Rapoport is very good at BMA's. For several reasons (including Dr. Cheson) I

now have to get BMMA's from my sternum and Dr/ R is excellent chatting away so I

don't freak out. It's somewhat painful but not so bad as the hip. Shorter needle

because it's right over the heart. Only certain docs who have special training

can do the sternum test.

[ ] Washington DC area CML docs

Hi.

We all have our own experiences with docs and sometimes there's really no

good answer for it but this is what I've experienced:

Bruce Cheson at town gave me the most painful BMB with lasting effects

for weeks when I was trying to get into the Sprycel trial. I know he is

well known and generally well-regarded so this may be an anomaly. But,

after 3 BMBs with greatly differing results over a two-month period he did

not let me into the trial. A week later I got into the trial at the

University of land where the BMB results were clear and I had gone from

cytogenetic zero to 17 positive cells in my marrow and the PCR and FISH

results were high, too. Now, a few months later I am zero cyto, zero FISH

and 0.0003 PCR. Dr. Rapaport at the Greenebaum Cancer Center in

Baltimore at the University of land is my doctor. He's a CML specialist

with a full staff and is not only highly competent but kind as well.

I also have gone to Dr. Victor Priego in Bethesda at the Blood Disorder and

Cancer Center. He's not a CML specialist but knows a LOT and is guided by a

doc at MDACC in Houston. It was Dr. Priego who did a FISH test and found

that it was 4% instead of zero and sounded the alarm that I must get into

the dasatinib trial. He helped as much as possible and is worth seeing.

Also, Dr, Carol was part of the early days of Gleevec and believes in

it to a fault. I saw her for about a year and she was so confident that my

counts were steady and the meds were working that she didn't see me for

three months even for a CBC. When I went in for my three month appointment

my counts were so low that I was immediately hospitalized and given a

two-bag transfusion. That's when I found Dr. Priego. However, she does

indeed have an excellent reputation.

I am not trying to badmouth any of these doctors but as unusual as my

experiences might have been there have been two cases when my life was

literally in jeopardy.

Now I know much more and am a better patient than I used to be so I would

never let a doc wait three months for a CBC! And I wouldn't go back to a

doctor for a second and third BMB when the results were so questionable the

first time around which could have simply been bad lab work.

But, those are my experiences for what the information may be worth to

anyone.

L

[Guest guest]

Hi ,

Glad you wrote in since I haven't talked to anyone else who gets sternal BMA's.

I've recommended it several time because it is so much less painful and doesn't

have any lasting effects which the hip BMB's often do. You're right that

they're virtually painless and fast, too. Last time Dr. Rapaport asked what my

pain level was freom 1 to 10 and I had to say 1!

L

[ ] Washington DC area CML docs

Hi.

We all have our own experiences with docs and sometimes there's really no

good answer for it but this is what I've experienced:

Bruce Cheson at town gave me the most painful BMB with lasting effects

for weeks when I was trying to get into the Sprycel trial. I know he is

well known and generally well-regarded so this may be an anomaly. But,

after 3 BMBs with greatly differing results over a two-month period he did

not let me into the trial. A week later I got into the trial at the

University of land where the BMB results were clear and I had gone from

cytogenetic zero to 17 positive cells in my marrow and the PCR and FISH

results were high, too. Now, a few months later I am zero cyto, zero FISH

and 0.0003 PCR. Dr. Rapaport at the Greenebaum Cancer Center in

Baltimore at the University of land is my doctor. He's a CML specialist

with a full staff and is not only highly competent but kind as well.

I also have gone to Dr. Victor Priego in Bethesda at the Blood Disorder and

Cancer Center. He's not a CML specialist but knows a LOT and is guided by a

doc at MDACC in Houston. It was Dr. Priego who did a FISH test and found

that it was 4% instead of zero and sounded the alarm that I must get into

the dasatinib trial. He helped as much as possible and is worth seeing.

Also, Dr, Carol was part of the early days of Gleevec and believes in

it to a fault. I saw her for about a year and she was so confident that my

counts were steady and the meds were working that she didn't see me for

three months even for a CBC. When I went in for my three month appointment

my counts were so low that I was immediately hospitalized and given a

two-bag transfusion. That's when I found Dr. Priego. However, she does

indeed have an excellent reputation.

I am not trying to badmouth any of these doctors but as unusual as my

experiences might have been there have been two cases when my life was

literally in jeopardy.

Now I know much more and am a better patient than I used to be so I would

never let a doc wait three months for a CBC! And I wouldn't go back to a

doctor for a second and third BMB when the results were so questionable the

first time around which could have simply been bad lab work.

But, those are my experiences for what the information may be worth to

anyone.

L

[Guest guest]

also has sternum BMA's. He prefers it by far!

And, he is also treated in the DC area. He sees Dr. Lee in Columbia, MD.

Love him!

Dana

[ ] Washington DC area CML docs

Hi.

We all have our own experiences with docs and sometimes there's really no

good answer for it but this is what I've experienced:

Bruce Cheson at town gave me the most painful BMB with lasting effects

for weeks when I was trying to get into the Sprycel trial. I know he is

well known and generally well-regarded so this may be an anomaly. But,

after 3 BMBs with greatly differing results over a two-month period he did

not let me into the trial. A week later I got into the trial at the

University of land where the BMB results were clear and I had gone from

cytogenetic zero to 17 positive cells in my marrow and the PCR and FISH

results were high, too. Now, a few months later I am zero cyto, zero FISH

and 0.0003 PCR. Dr. Rapaport at the Greenebaum Cancer Center in

Baltimore at the University of land is my doctor. He's a CML specialist

with a full staff and is not only highly competent but kind as well.

I also have gone to Dr. Victor Priego in Bethesda at the Blood Disorder and

Cancer Center. He's not a CML specialist but knows a LOT and is guided by a

doc at MDACC in Houston. It was Dr. Priego who did a FISH test and found

that it was 4% instead of zero and sounded the alarm that I must get into

the dasatinib trial. He helped as much as possible and is worth seeing.

Also, Dr, Carol was part of the early days of Gleevec and believes in

it to a fault. I saw her for about a year and she was so confident that my

counts were steady and the meds were working that she didn't see me for

three months even for a CBC. When I went in for my three month appointment

my counts were so low that I was immediately hospitalized and given a

two-bag transfusion. That's when I found Dr. Priego. However, she does

indeed have an excellent reputation.

I am not trying to badmouth any of these doctors but as unusual as my

experiences might have been there have been two cases when my life was

literally in jeopardy.

Now I know much more and am a better patient than I used to be so I would

never let a doc wait three months for a CBC! And I wouldn't go back to a

doctor for a second and third BMB when the results were so questionable the

first time around which could have simply been bad lab work.

But, those are my experiences for what the information may be worth to

anyone.

L