MD

[Guest guest]

Hi,

I have been reading the posts here since April '07 ( I was dx March '07

but I don't post very often. I am so thankful to all of you for your

information and amazing support to those who do post with questions.

Just a quick synopsis of my journey so far:

Dx - March 28, 2007

Started Gleevec 400mg in April 07

Great Hematological response within 3 weeks (WBC 150,000 to 9,000)

Stopped Gleevec end of May 07 due to intolerance (toxic response)

Started Sprycel 100mg in July 07

Break from Spycel in August 07(SOB, edema, extreme fatigue)

Started Sprycel 50mg mid September 07

Reached PCRU end of October 07

Taken several drug vacations since due to fatigue and fluid retention

Have remained PCRU since

As you can see I have been extremely lucky to have had such a great

response to Sprycel but I have been having a hard time with my QOL due

to the extreme fatigue I have been experiencing, along with the fluid

issues and weight gain! My onc is very supportive and listens to my

concerns and has conferred with other CML specialists regarding my

fatigue. I really want to continue taking Sprycel since it has done

such a great job and I have maintained a Complete Molecular response

but my onc is reluctant to reduce my Sprycel dose any lower to help

with the side effects since I am currently on a reduced dose of 50mg

already.

My onc has suggested that I go to MD for a consult with one of

the CML experts there. I am his only CML patient currently taking

Sprycel and he thinks one of the specialists at MD might have

more experience and some insight into what other options I might try to

have a better QOL. Right now when I am taking the Sprycel there are

days it's all I can do to take a shower because I am so exhausted. And

because I don't have the energy to do anything (forget exercise) my

weight is exploding!! I've always had a weight problem but nothing

like this. And of course that leads to a whole other host of health

issues.

Anyway, I have read that several of you go to MD for treatment

and may be familiar with some of the specialists there. I would really

welcome any advice or recommendations regarding anyone in particular

that might be able to help me. My onc mentioned three names, Dr.

O'Brien, Dr. Kantarjian, and Dr. Gomez. Any information would be

greatly appreciated.

My onc did email Dr. Drucker, Dr. Talpaz, and Dr. O'Brien earlier when

I first was having issues to ask if they had any advice but at that

time they suggested checking other things (heart, thyroid, etc.)

because they didn't believe Sprycel caused extreme fatigue. I have had

all of those things checked and they are OK. Dr. Talpaz explained that

Tasigna probably wouldn't be a good alternative for me since it can

raise glucose levels and I have diabetes as well.

Thank you for reading my post and any help you may share.

Patti S.

[Guest guest]

Hi,

I see kantarjian and konepleva. Both are fine docs. Kantarjian is the dept

chair and seems to be transferring patients to konepleva, but they all work and

consult with one another.

Kantarjian has met with me several times, but konepleva is who i see on a

regular basis. Dr cortes is the trial doctor, but i haven't seen him at all. I

hear he is good too.

Hope this helps.

Sent from my Verizon Wireless BlackBerry

[ ] Re: MD

Hi Patti,

Prior to my transplant in 2004 I saw Dr Kantarjian and was quite

satisfied.

Blessings,

Don

>

> Hi,

> I have been reading the posts here since April '07 ( I was dx March '07

> but I don't post very often. I am so thankful to all of you for your

> information and amazing support to those who do post with questions.

>

> Just a quick synopsis of my journey so far:

> Dx - March 28, 2007

> Started Gleevec 400mg in April 07

> Great Hematological response within 3 weeks (WBC 150,000 to 9,000)

> Stopped Gleevec end of May 07 due to intolerance (toxic response)

> Started Sprycel 100mg in July 07

> Break from Spycel in August 07(SOB, edema, extreme fatigue)

> Started Sprycel 50mg mid September 07

> Reached PCRU end of October 07

> Taken several drug vacations since due to fatigue and fluid retention

> Have remained PCRU since

>

> As you can see I have been extremely lucky to have had such a great

> response to Sprycel but I have been having a hard time with my QOL due

> to the extreme fatigue I have been experiencing, along with the fluid

> issues and weight gain! My onc is very supportive and listens to my

> concerns and has conferred with other CML specialists regarding my

> fatigue. I really want to continue taking Sprycel since it has done

> such a great job and I have maintained a Complete Molecular response

> but my onc is reluctant to reduce my Sprycel dose any lower to help

> with the side effects since I am currently on a reduced dose of 50mg

> already.

>

> My onc has suggested that I go to MD for a consult with one of

> the CML experts there. I am his only CML patient currently taking

> Sprycel and he thinks one of the specialists at MD might have

> more experience and some insight into what other options I might try to

> have a better QOL. Right now when I am taking the Sprycel there are

> days it's all I can do to take a shower because I am so exhausted. And

> because I don't have the energy to do anything (forget exercise) my

> weight is exploding!! I've always had a weight problem but nothing

> like this. And of course that leads to a whole other host of health

> issues.

>

> Anyway, I have read that several of you go to MD for treatment

> and may be familiar with some of the specialists there. I would really

> welcome any advice or recommendations regarding anyone in particular

> that might be able to help me. My onc mentioned three names, Dr.

> O'Brien, Dr. Kantarjian, and Dr. Gomez. Any information would be

> greatly appreciated.

>

> My onc did email Dr. Drucker, Dr. Talpaz, and Dr. O'Brien earlier when

> I first was having issues to ask if they had any advice but at that

> time they suggested checking other things (heart, thyroid, etc.)

> because they didn't believe Sprycel caused extreme fatigue. I have had

> all of those things checked and they are OK. Dr. Talpaz explained that

> Tasigna probably wouldn't be a good alternative for me since it can

> raise glucose levels and I have diabetes as well.

>

> Thank you for reading my post and any help you may share.

>

> Patti S.

>