Re: MD -Patti

[Guest guest]

Hi Pattie,

I will be at MDACC from June 8th til sometime early July.  I am in the search

for an apartment right now and the few that I have called made a comment that

there are many patients calling for apts during that same time.  They were

wondering what MDA was doing having so many patients at the same time.

I would love to visit with you while I'm there. We can email privately to

exchange information. My email is jschneider008@....  Dr Cortes is my dr

also. He is a very busy man so do bring books - I usually fall asleep reading

but I do carry a book with me.

I have flown into both airports. It depends on which one offers the lower

airfare. When I get to the airport, I go directly to the Super Shuttle desk to

purchase a ticket for transportation to my hotel.  They offer the best fares.

It's a shared ride with other passengers and could take up to an hour to get to

your hotel, but it is cheap.

The Rotary House is VERY nice. It runs from $99 a night on up, but nice and

convenient. It as a sky walk to the Cancer Center.

 

It there is anything else I can help you with, please feel free to email me. I

would be happy to help.

 

God Bless,

Jackie Schneider

dx 4/14/04

currently entering 4th trial

 

From: Patti Simbulan <psimbulan@...>

Subject: [ ] MD

Date: Monday, May 18, 2009, 11:00 PM

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