20 replies to this topic

[sarah1403989277]

i am curious if anyone on here has been or knows any thing about ohsu in portland oregon?

[hannibellemo]

If you don't get any responses here, go to http://www.newcmldrug.com

That is another great website and several regular posters go to OHSU.

Pat.

[lnadal]

I have gone to OHSU for nine years.  My doctor is Dr. Mauro.  I have had terrific care there. Dr. Mauro and his nurse are always happy to answer all my questions.  I feel they go above and beyond!  Of course, Dr. Druker is there too!  He and his nurse are caring and knowledgeable. Everyone gives me all the time I need even when they are behind schedule.  Of course, this often makes them behind schedule, but I appreciate their compassion. I couldn't imagine a better place to be.  Lynn N.

[mcfowler33]

I also see Dr. Mauro at OHSU.  Best doc I have seen for CML so far (hes my third) and very knowledgeable.  As Lynn said, they all do a great job and are very compassionate.  I drive 7 hours every 6 weeks to see him so that alone should tell you something.

Marc

[Skittles]

Sarah, I've posted to you before regarding Dr. Druker and his fabulous nurse (Carolyn) at OHSU.  They are AWESOME!  I actually look forward to my trips there each year and seeing them.  I can't say enough about OHSU and the compassionate folks there.  The whole staff is wonderful and makes for a very encouraging visit!!  Wishing you the best.  Skittles

[sarah1403989277]

a great big thank ypu to all that have responded to me! i really apprecite your time, i will be driving 12 hours to get there.ok now one more question where is a CHEAP place to stay while there that is close to the hospital. i am on a very tight budget.

[mcfowler33]

The hotels near OHSU are relatively expensive because it is close downtown Portland and the waterfront.  That being said, we have been able to get hotels for about $80 a night downtown, but then they charge around $30 for parking.  The best is to go out to the Airport or down to Clackamas area, which are both about 15-20 minutes (depending on traffic of course) away from OHSU. We have checked into the "special" rates that you supposedly get by being a patient and OHSU and they are usually only about 10% off of their normal price - not too great. 

We use www.priceline.com and "name your own price" and have been getting really good deals.  The airport area is the cheapest and you can get a hotel out there for around $65 or $70 for a 3+ star without having to pay for parking.  The trick to priceline is to low ball them big time and then they will come back with their best deal for you to accept or not.  Problem with priceline is once you book it, you can't get your money back so be absolutely sure you are going before you book. Good Luck!

[sarah1403989277]

thank you very much! from what i was seeing on here that is what i was noticing.so i guess that will be the best to stay out by the airport.again thank you

[Lynne D]

I live in New York and fly to Portland every year to visit Dr. Druker. I absolutely love him. He speaks to you so you can understand, not like a scientist. He spends hours with me when I go. He works with my local oncologist which has helped her tremendously. They answer your emails quickly if you have a question. I've met Dr. Mauro and he is passionate about what he does. He will also spend all the time you need. I usually stay at the airport hotel which is reasonable. I am fortunate that my brother lives in Oregon so he picks me up the next morning and takes me to OHSU. Then I stay the week with him. Maybe I should have him open a "Ronald McDonald" house for patients that go. LOL. All I have to say is for peace of mind....GO!

[Skittles]

Sarah, we stay out near the airport too.  There is a nice shopping area there (Cascade Station) as well as a super Target for convenience.  The transit system is great and will take you right into downtown where you can hop a bus to OHSU or you could take a cab.  We like the convenience to the airport for an early flight home but if you're driving or have a later flight out from PDX there is a place to stay on the river closer to OHSU that you can take the aerial tram from the waterfront right into the OHSU building and the view is spectacular.  The motel is the Marriott Residence Inn Portland Downtown at RiverPlace.    Have you made an appt. already?  Please let us know.  Hugs, Skittles

[sarah1403989277]

thank you both i am waiting for them to call me so i can get it started. and i really appreciate the way u both have explained things. again thank you this has made me feel really good about my decision to go there

[Skittles]

Sarah,  I hope you get an appt. super quick but if you don't get one till next month I will be there then too!  Would love to meet up with you if we have the same day appt.  Good Luck....you will LOVE OSHU!  Hugs, Skittles

[Trey]

OHSU is a good choice.  Make sure you take copies of your lab reports, especially the initial BMB that discusses the 3-way translocation.

You said you are on a tight budget:

http://www.qualityin...id=1547rt110499

[sarah1403989277]

i will let u know when i get to go!i am hoping real soon.i am ready.

[sarah1403989277]

thank you so much trey for the info and yes i will take everything i have.

[sarah1403989277]

thank you also i am getting impatient to go . it will be a blessing to find out what is really wrong and what path i need to be on for sure!!!!!!

[gark]

Hi, Sarah, my name is Mark, and I have also been going to OHSU for my cml bloodwork and DR.'s appointment since '06.  I see Dr. Mauro, as well, and he is just great, as the others have said.  They are truly experts.  At first i was seeing a general oncologist, and was not responding to 400 mg of gleevec.  After seeing Dr. Mauro he was confident that 800mg would boost me into optimal response territory.  Anyways, I feel like my future cml treatment is in good hands.  Good luck, and please keep us posted.

- Mark

[sarah1403989277]

thanks for good imput.i have been on gleevec,tasigna and now sprycell. gleevec quit working,tasigna kept me in a holding pattern and sprycell is killing me. i was on it for 5 days 100mg now i am taking it every other day. so i really need a real good dr. i have been to hematalogists/onc. and they cant get me into remission and i was dx 10/09.so i pray ohsu will be the ones to unlock this so i can move on .

[Susan61]

Hi Sarah:  You got plenty of help here with all your questions.  I cannot add to any of it, as I never went to one of the big hospitals.  The only hospital I dealt with was NY Presbyterian in New York when I did the clinical trial for the Gleevec, and that was back in 2000.

     I will pray that you get your appointment real soon, and get some good answers too.  Try to add a little bit of enjoyment to a place you really do not want to go.  When my husband used to take me to New York during the trial, we would go out to eat and just enjoy the sights when we could.  I traveled back and forth during a very bad winter.  We used to go by train, and do a lot of walking too.  We never had money to do anything expensive, just little things to make the day easier on me. I am not Jewish, but we enjoyed the little Jewish Deli  to stop when we got there in the morning for a good Bagel .that only New York could make. with some Hot Coffee to warm us up.  It was right next door to the doctors office that I had to go to.

We would eat at the train station waiting for the train to go back home.  It used to take some of the anxiety away when we added some fun to the trip.  I am sure you will find an affordable hotel, and some little place to get a meal that is cheap enough also.

     OHSU is one of the best places, and that gets you going in the right direction already.  I am sure they will help you to get where you need to be with your proper treatment.

God Bless You

Susan

[Lynne D]

Sarah, 100mg of Sprycel was also terrible for me. I had only been on it about 2 months when I went to see Dr. Druker the last time and he had no problem dropping me down to 50mg. My numbers have never been better in 7  years. So it is possible to maintain response with half the "suggested" dose. Side effects aren't gone, they do come and go but it's a little easier than the 100mg.