MD

[Guest guest]

Hi Patti, I preferred Hobby, it is closer. I also bought round trip shuttle

tickets, cheaper than taxis, unless you are renting a car. I stayed at the

Rotary House if it was a short visit, but when i first went there for the

Sprycel trial I rented a lovely apartment, stayed 3 months. I found at

MDACC which is huge, it was always hurry up and wait! Lovely hospital, good

doctors, my Dr.Talpaz has since moved to the U. of Michigan which is

smaller. Good luck to you, Bobby

On Tue, May 19, 2009 at 12:00 AM, Patti Simbulan <psimbulan@...>wrote:

>

>

> Hi,

>

> Some of you may remember me from some earlier posts. I was dx March 07 and

> have been on Sprycel since July 07 (various doses and vacations). I have had

> some problems with Sprycel specifically extreme fatigue, SOB, and edema so I

> have been taking a lower than recommended dose. I have been one of the lucky

> ones and have been PCRU since October 07. I feel extremely fortunate and I

> don't want to push my luck but lately I have been taking 50mg every other

> day. It helps some with the fatigue and pretty much solved the SOB and edema

> but my onc here is alittle worried about the low dose I'm taking so he has

> recommended I have a consult with the experts at MD to get a second

> opinion. He wants to make sure I don't lose my PCRU.

>

> I have an appointment scheduled for June 15th with Dr. Cortez. I have read

> may good things about Dr. Cortez from your posts so I am looking forward to

> meeting with him. I was told I should plan to be there 3 days so I am

> planning my trip to arrive on Sunday, June 14th and hopefully leave later on

> Wednesday, June 17th. I was told I should be able to leave by early

> afternoon on Wednesday.

>

> I would love to hear from anyone who has gone to MD and any advice

> you might have. Is it better to fly into Bush International or Hobby

> airport? Where would you recommend I stay? They mentioned the Rotary

> House right on campus or the Holiday Inn Reliant Park. Also what can I

> expect while I'm there. This is all new to me and I'm frankly alittle

> anxious about the trip. Any advice would be greatly appreciated.

>

> Thanks,

> Patti

>

>

>

--

a Doyle/dob 1929

DX 1995/Hydrea

2/00 - Gleevec Trial, OHSU, Dr. Druker

6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker

6/03 - Gleeved/Zarnestra Trial, OHSU, " " " "

7/06 - Sprycel Trial, MDACC, Dr. Talpaz

4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz

4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz

[Guest guest]

When I went to MDAC I would fly Southwest into Hobby and stay at the

Rotary House. I was convenient and a great atmosphere. Please note

that MDAC is a very busy place and you won't get the personal

attention you might get at other locations, however they are a

storehouse of information so make sure you write down all your

questions and be prepared to ask the PA (whom you might have more time

with) and Dr. Cortez.

Sent from my iPhone

On May 19, 2009, at 12:00 AM, " Patti Simbulan " <psimbulan@...>

wrote:

>

>

> Hi,

>

> Some of you may remember me from some earlier posts. I was dx March

> 07 and have been on Sprycel since July 07 (various doses and

> vacations). I have had some problems with Sprycel specifically

> extreme fatigue, SOB, and edema so I have been taking a lower than

> recommended dose. I have been one of the lucky ones and have been

> PCRU since October 07. I feel extremely fortunate and I don't want

> to push my luck but lately I have been taking 50mg every other day.

> It helps some with the fatigue and pretty much solved the SOB and

> edema but my onc here is alittle worried about the low dose I'm

> taking so he has recommended I have a consult with the experts at MD

> to get a second opinion. He wants to make sure I don't lose

> my PCRU.

>

> I have an appointment scheduled for June 15th with Dr. Cortez. I

> have read may good things about Dr. Cortez from your posts so I am

> looking forward to meeting with him. I was told I should plan to be

> there 3 days so I am planning my trip to arrive on Sunday, June 14th

> and hopefully leave later on Wednesday, June 17th. I was told I

> should be able to leave by early afternoon on Wednesday.

>

> I would love to hear from anyone who has gone to MD and any

> advice you might have. Is it better to fly into Bush International

> or Hobby airport? Where would you recommend I stay? They mentioned

> the Rotary House right on campus or the Holiday Inn Reliant

> Park. Also what can I expect while I'm there. This is all new to me

> and I'm frankly alittle anxious about the trip. Any advice would be

> greatly appreciated.

>

> Thanks,

> Patti

>

>

[Guest guest]

Patti, I've been a patient at MDA since 1993. I live in San ,

so we drive to my appointments. The Rotary House is definitely the

most convenient place to stay. There is a skywalk from it to the MDA

clinic. The food there is a little pricey, but I always have their

buffet breakfast anyway. It is a treat and breakfast is my favorite

meal. The clinic and hospital are large, but don't let that

intimidate you. Everyone is very nice. For your first visit, they

used to assign you a special " aide " to help you get from place to

place without confusion. I don't know if they still do that or not,

but you won't have any trouble. My doctor is Dr. Kantarjian, but I've

also been a patient of a couple of other doctors in the leukemia

clinic and have been very pleased with all of them.

The hospital is a very short distance from a park and the zoo. My

husband and I walked there one afternoon when we were anxious to get

away from the hospital environment. Let me know if you have any

specific questions that I can answer and good luck and God bless.

Gay

On May 19, 2009, at 7:12 AM, Bobby Doyle wrote:

>

>

> Hi Patti, I preferred Hobby, it is closer. I also bought round trip

> shuttle

> tickets, cheaper than taxis, unless you are renting a car. I stayed

> at the

> Rotary House if it was a short visit, but when i first went there

> for the

> Sprycel trial I rented a lovely apartment, stayed 3 months. I found at

> MDACC which is huge, it was always hurry up and wait! Lovely

> hospital, good

> doctors, my Dr.Talpaz has since moved to the U. of Michigan which is

> smaller. Good luck to you, Bobby

>

> On Tue, May 19, 2009 at 12:00 AM, Patti Simbulan <psimbulan@...

> >wrote:

>

> >

> >

> > Hi,

> >

> > Some of you may remember me from some earlier posts. I was dx

> March 07 and

> > have been on Sprycel since July 07 (various doses and vacations).

> I have had

> > some problems with Sprycel specifically extreme fatigue, SOB, and

> edema so I

> > have been taking a lower than recommended dose. I have been one of

> the lucky

> > ones and have been PCRU since October 07. I feel extremely

> fortunate and I

> > don't want to push my luck but lately I have been taking 50mg

> every other

> > day. It helps some with the fatigue and pretty much solved the SOB

> and edema

> > but my onc here is alittle worried about the low dose I'm taking

> so he has

> > recommended I have a consult with the experts at MD to

> get a second

> > opinion. He wants to make sure I don't lose my PCRU.

> >

> > I have an appointment scheduled for June 15th with Dr. Cortez. I

> have read

> > may good things about Dr. Cortez from your posts so I am looking

> forward to

> > meeting with him. I was told I should plan to be there 3 days so I

> am

> > planning my trip to arrive on Sunday, June 14th and hopefully

> leave later on

> > Wednesday, June 17th. I was told I should be able to leave by early

> > afternoon on Wednesday.

> >

> > I would love to hear from anyone who has gone to MD and

> any advice

> > you might have. Is it better to fly into Bush International or Hobby

> > airport? Where would you recommend I stay? They mentioned the

> Rotary

> > House right on campus or the Holiday Inn Reliant Park. Also what

> can I

> > expect while I'm there. This is all new to me and I'm frankly

> alittle

> > anxious about the trip. Any advice would be greatly appreciated.

> >

> > Thanks,

> > Patti

> >

> >

> >

>

> --

> a Doyle/dob 1929

> DX 1995/Hydrea

> 2/00 - Gleevec Trial, OHSU, Dr. Druker

> 6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker

> 6/03 - Gleeved/Zarnestra Trial, OHSU, " " " "

> 7/06 - Sprycel Trial, MDACC, Dr. Talpaz

> 4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz

> 4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz

>

>

[Guest guest]

Pattie,

I haven't been to MD in 9 years, but make sure that you bring a

good book with you. You might have to do some waiting.

On Tue, May 19, 2009 at 12:00 AM, Patti Simbulan <psimbulan@...>wrote:

>

>

> Hi,

>

> Some of you may remember me from some earlier posts. I was dx March 07 and

> have been on Sprycel since July 07 (various doses and vacations). I have had

> some problems with Sprycel specifically extreme fatigue, SOB, and edema so I

> have been taking a lower than recommended dose. I have been one of the lucky

> ones and have been PCRU since October 07. I feel extremely fortunate and I

> don't want to push my luck but lately I have been taking 50mg every other

> day. It helps some with the fatigue and pretty much solved the SOB and edema

> but my onc here is alittle worried about the low dose I'm taking so he has

> recommended I have a consult with the experts at MD to get a second

> opinion. He wants to make sure I don't lose my PCRU.

>

> I have an appointment scheduled for June 15th with Dr. Cortez. I have read

> may good things about Dr. Cortez from your posts so I am looking forward to

> meeting with him. I was told I should plan to be there 3 days so I am

> planning my trip to arrive on Sunday, June 14th and hopefully leave later on

> Wednesday, June 17th. I was told I should be able to leave by early

> afternoon on Wednesday.

>

> I would love to hear from anyone who has gone to MD and any advice

> you might have. Is it better to fly into Bush International or Hobby

> airport? Where would you recommend I stay? They mentioned the Rotary

> House right on campus or the Holiday Inn Reliant Park. Also what can I

> expect while I'm there. This is all new to me and I'm frankly alittle

> anxious about the trip. Any advice would be greatly appreciated.

>

> Thanks,

> Patti

>

>

>

--

[Guest guest]

Hi all,

Just a note to tell you that I am so excited at the good news. Guess who is

coming to Phoenix???? MD ANderson at our new Gilbert hospital. I am SOOOO

excited. I have never needed them ( thanks be to God) but how neat if I ever

need them. As well, you should all try to come here for your consults and stay

with me!! I would get to meet all of youu!!! I could be the CML house!!

So cool!!

Barb

>

[Guest guest]

Hi Patti,

I have been on only 20mg bid for over 2 years now and have held pcru.  Each of

us has a different reaction to medications.  I have put on weight but have come

to the point where it is what it is and am happy to be alive and reasonably

healthy.  The drs. did have to play with the dosage of Sprycel before they found

the right match.  We are so fortunate to have these miracle drugs available to

us.  I thank God every day for the miracle he has brought into my life.

carolyn_kuptz2000@...

dx Nov 2005

[Guest guest]

Hi Patti,

I am also on sprycel and go to MDA. Additionally i live in houston so feel free

to contact me when you are in town.

As has been mentioned before, take a book with you and be prepared to wait.

Also be prepared to stand up for yourself and get answers to your questions! Be

proactive! Let us know which doctor you end u seeing!

Best wishes!

Rhonda

Sent from my Verizon Wireless BlackBerry

[ ] MD

Hi Patti,

I have been on only 20mg bid for over 2 years now and have held pcru.  Each of

us has a different reaction to medications.  I have put on weight but have come

to the point where it is what it is and am happy to be alive and reasonably

healthy.  The drs. did have to play with the dosage of Sprycel before they found

the right match.  We are so fortunate to have these miracle drugs available to

us.  I thank God every day for the miracle he has brought into my life.

carolyn_kuptz2000@...

dx Nov 2005

[Guest guest]

Rhonda:

Great way to put it and very applicable to MDAC or anywhere for that

matter!

Sent from my iPhone

On May 20, 2009, at 4:18 PM, Sionito@... wrote:

> Hi Patti,

>

>

>

> I am also on sprycel and go to MDA. Additionally i live in houston

> so feel free to contact me when you are in town.

>

>

>

> As has been mentioned before, take a book with you and be prepared

> to wait. Also be prepared to stand up for yourself and get answers

> to your questions! Be proactive! Let us know which doctor you end

> u seeing!

>

>

>

> Best wishes!

>

> Rhonda

>

> Sent from my Verizon Wireless BlackBerry

>

>

>

> [ ] MD

>

>

>

>

>

> Hi Patti,

>

>

>

> I have been on only 20mg bid for over 2 years now and have held

> pcru. Each of us has a different reaction to medications. I have

> put on weight but have come to the point where it is what it is and

> am happy to be alive and reasonably healthy. The drs. did have to

> play with the dosage of Sprycel before they found the right match.

> We are so fortunate to have these miracle drugs available to us. I

> thank God every day for the miracle he has brought into my life.

>

> carolyn_kuptz2000@...

>

> dx Nov 2005

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thank you Patti for your company. It was a very pleasant time.

 

God Bless,

Jackie S.

From: Patti Simbulan <psimbulan@...>

Subject: [ ] MD

Date: Saturday, June 20, 2009, 11:04 PM

I just returned Thurday night from my trip to MD . It was quite an

experience. I stayed at the Rotary House and it was so convenient. I appreciated

all of the information and advice I received from all of you. You were so right

about the waiting. I'm glad I had a book.

I had all of my tests and appointments on Monday and it took from 8:00 a.m.

until 4:00 p.m. to finish my registration, meeting with the nurse, bloodwork,

BMA/BMB and appointment with Dr. Cortes. There was at least a two hour wait at

almost everywhere I went. I must say that my appointment with Dr. Cortes went

well and he was actually very patient with me and spent time answering my

questions and concerns. I'm now waiting to see if the PCR and BMB tests show the

same undectable reading as my tests here at home. Dr. Cortes has said if that is

the case he would recommend reducing my Sprycel dose to 40 mg daily or even 20

mg daily if needed to help with the fatigue. So I'm hoping that will be the

case. The only concern was that I may be showing some signs of congestive heart

failure. I am going to set-up an echocardiogram and meet with a cardiologist

here at home since there was not enough time to get it scheduled during my trip

to MD . Has anyone

else on Sprycel had any issues with Congestive heart failure. I'm hoping the

echo doesn't show any problems.

The best part of the whole experience was meeting with two other CMLers. I was

in touch with Jackie S. who is at MD starting the Ariad trial and

Rhonda (also on Sprycel) who lives in Houston and goes to MD for her

care. Rhonda served as our hostess and picked Jackie and I up to go to dinner

and a tea room. We had a great time talking about our similar experiences with

CML, the meds and side effects and shared alot about our personal lives. Rhonda

and Jackie are so easy to talk to and terrific people. After dinner we went back

to Rhonda's and joined Zavie, Tracey and on the Tuesday night CML chat.

There's just not better people than our group of CML survivors. Thank you to

Rhonda and Jackie for a super evening. Also good luck to Jackie in the Ariad

trial.

Patti

[Guest guest]

It was a blast! Any time your in town stop by.

Great to meet ya.

Sent from my Verizon Wireless BlackBerry

[ ] MD

Date: Saturday, June 20, 2009, 11:04 PM

I just returned Thurday night from my trip to MD . It was quite an

experience. I stayed at the Rotary House and it was so convenient. I appreciated

all of the information and advice I received from all of you. You were so right

about the waiting. I'm glad I had a book.

I had all of my tests and appointments on Monday and it took from 8:00 a.m.

until 4:00 p.m. to finish my registration, meeting with the nurse, bloodwork,

BMA/BMB and appointment with Dr. Cortes. There was at least a two hour wait at

almost everywhere I went. I must say that my appointment with Dr. Cortes went

well and he was actually very patient with me and spent time answering my

questions and concerns. I'm now waiting to see if the PCR and BMB tests show the

same undectable reading as my tests here at home. Dr. Cortes has said if that is

the case he would recommend reducing my Sprycel dose to 40 mg daily or even 20

mg daily if needed to help with the fatigue. So I'm hoping that will be the

case. The only concern was that I may be showing some signs of congestive heart

failure. I am going to set-up an echocardiogram and meet with a cardiologist

here at home since there was not enough time to get it scheduled during my trip

to MD . Has anyone

else on Sprycel had any issues with Congestive heart failure. I'm hoping the

echo doesn't show any problems.

The best part of the whole experience was meeting with two other CMLers. I was

in touch with Jackie S. who is at MD starting the Ariad trial and

Rhonda (also on Sprycel) who lives in Houston and goes to MD for her

care. Rhonda served as our hostess and picked Jackie and I up to go to dinner

and a tea room. We had a great time talking about our similar experiences with

CML, the meds and side effects and shared alot about our personal lives. Rhonda

and Jackie are so easy to talk to and terrific people. After dinner we went back

to Rhonda's and joined Zavie, Tracey and on the Tuesday night CML chat.

There's just not better people than our group of CML survivors. Thank you to

Rhonda and Jackie for a super evening. Also good luck to Jackie in the Ariad

trial.

Patti