Seattle Here I Come!

Hi gang!
I received word on Friday that I am in the Seattle clinical trial and I am heading out Thursday for my first visit on Friday...WHOO HOO!!!...Do you have any tips...where to stay, what to look out for etc....and I understand I am number 20 in the study that only takes 20 participants so I am feeling especially grateful.
I am hoping some of you check in and advise before I head out...
Ever grateful to all of you angels...
Kim (from CT)

[Lolly]

Hi Kim, and Congratulations! I am surprised to hear that you're #20, as when I was there just yesterday they said they were up to 10 confirmed volunteers. Maybe they included the ones still going through documentation when they told you 20. I hope they aren't full already, as some more of the group here are hoping to get in.

Here's a link to a list of motels close to UW:

http://www.uwmedicine.org/Facilities/UWMed...ousingguide.htm

We stayed at the Silver Cloud for our first visit, and it was very nice, but more expensive than some of the others as it is only about 10 blocks from the Medical Center. The further away you go the less expensive. Be sure you mention that you're a patient at the Medical Center as some of them will give you a discount. We received a 10% discount on our $99 room, so it was $89 plus tax(total was $109).

It's a long day, so wear something loose and comfortable; they give you the standard issue hospital gown for a top, but you can keep your bottoms on, and sweat pants or jogging pants and warm thick socks work nicely. Eat a solid breakfast as they will be doing a big blood draw. They will provide a menu when you first arrive, so you will have a nice lunch brought to you. The coffee's good! We arrived at 10 am for my first visit, and left the building around 4:30, so that gives you an idea of the day. It could be longer, depending on the length of your consent conference and medical history.

Good Luck, and again CONGRATULATIONS!

Love, Lolly

Great news for all you volunteers.
You people are the pioneers for what I think will be one of the cures for the HER/2neu related breast cancer. If the group is filled the Phase II trial can begin and if it's a success all of our web site angles will have another weapon against this particular cancer. Good luck to all of you and God bless you for your time and devotion.
Regards Bruce

Dear Ladies:

Good Luck in the study. I have good news for all of you ladies regarding my wife. As you know she recently had a recurrance in her lung (two very small tumors). We contacted Dr. Disis and asked if we should have anything special done with the pathology of the tumors. She advised us that we should have the pathologist stain for CD4 and CD8 T-cells. As it turns out the pathology report shows that the tumors showed "inflitrating" and "reactive" t-cells.
We sent this information to Dr. Disis and she responded by having us send Lisa's slides to her so that further staining can be done. She indicated that the pathology report was very good and showed that Lisa was having an immune response. If she had enough t-cells in the tumors there is a likelyhood that the tumor might have disappeared on their own. (Although we did not wish to take this chance.)
In any event we are planning to return to Seattle for our final follow-up visit in late February. At this time we will learn how well we did with the immune response and the t-cells.
In addition, ask Dr. Disis about their program to harvest your t-cells for later use. Lisa will have this done during our next visit.
We attained NED the hard way and we intend to keep there!
By the way, the University has a deal with the University Best Western which is located in the University district of Seattle. It is about 5 minutes from the hospital. They charge $89.00 per night, but you have to notify them that you are in the study. The rooms are very nice and it is very convenient. Also ask them about Mohommad, a fellow that runs a limo service to and from the airport. They will arrange to have you picked up and returned to the airport.
Finally, try La Compagne, a french restaurant in Seattle. It is expensive but very good.

God Bless, and let's kill this stuff!
Brian

Great News..

We will be greatly expanding our clinical trials page in the future to include more cutting edge treatments.

Give our regards to Dr. Dsis.

Joe and Christine
HER 2 Support Group

I am new here and searching for other options after having heart issues with Herceptin. What is NED?

[Lolly]

Hi Kath, welcome to our group. I'm sorry you've had heart problems with Herceptin, I know it's rare but it does happen. Some ladies have reported that after developing problems, taking a break from Herceptin allows their heart to recover and they're able to successfully resume Herceptin with no further problems. Check with your doctor about that possibility.
NED means No Evidence of Disease. It's a term used to describe remission, but doesn't necessarily mean "cured". Some of us have had NED for long periods of time, then have recurrences, then reach NED again. Some of our gals have reached NED and stayed there!

Love, Lolly

I just got BACK from UWMC! I was there at 8am Thursday (2/17), and met with the genetic guys re. BRCA and ovary removal. I was on the 8th floor, you were probably on the 7th, in the CRC.

I stayed at the Best Western - love the views. And the Portage Bay Cafe (only do breakfast & lunch) is a few blocks over on Roosevelt - great organic food.

I havn't checked my eamil for a few days, so missed yours saying you were on your way.


Hope all went well,
Marianne

Hi Angel Friends!
I just got back from Seattle; yesterday...you are right Lolly, in the literature they sent they said 19 have already received the vaccine; what they meant was the 19 in the prior study; so in fact I am number 10...so anyone out there interested in joining; they have 10 more slots....
I ended up staying at the Ramada...Marianne, if I had known you were at the Best Western; I would have booked there! I was on the 7th floor; right below you... I hope you are OK now...are you also BRAC 1? Lolly, how did your visit go on the 15th?

And Brian, they said they would harvest my T cells in the event of a reocurrance; so I will definitely follow up on that in light of Lisa's experience.
I said to Dr. Salazar; "Isn't Lolly and Marianne and Brian and Lisa, and Kim from Calif just great...Well, her jaw dropped...How do you know them? and yes, they are just great!" Well, I told her about Joe and Christines great web site here and said HIPPA be damned; we chat and thank God we do...
I tried to book my next 6 visits; but I can see they have alot of calendars to coordinate...Joe and Christine; I will give them your regards the next time I go out...Bruce, you are right, doing this is a bit empowering, is pioneering and does make one feel alittle heady
We ate at the Pink Door which was fabulous; I had fresh salmon sent home; and I will try La Campagne the next trip...what a nice city Seattle is...
OK I will quit perseverating...all in all a good trip and it is good to be back..
Love,
Kim (mamacze).

[Lolly]

Hi Kim! Great to hear it all went so well, and Frank and I really laughed when we read the part about surprising Dr. Salazar!
I posted an account of my last visit, thanks for reminding me :)

Love, Lolly

Hi all....
I must say I am soooo proud to see all of you persuing this vaccine. We have been told that our group has alot of representation there. Please give my best regards to Dr Nora if you see her.
I am very enthusiastically awaiting the final report on this vaccine.
My very best well wishes to all of you.
Warm hugs Christine

Hi gang
Christine, we are so proud of YOU and so grateful to you and Joe for pulling us together! We will certainly keep you posted! I sent your regards to Dr. Salazar and she was so pleased! In spite of HIPPAA they are glad we are here sharing and toughing it out together!
Love Kim

[Lolly]

Christine, I'll certainly give them your regards when I go this month!!!

Love, Lolly