MicheleU - how was D. C. advocate seminar??

[StephN]

Hey Michele and the other board memebers who attended -
Just was curious as to how the meeting in D.C. went.

Was not good timing for me to attend this one, but I would like to know what you did and learned there.

Just a short report, please!

[Joe]

Steph,


She may still be there. The conference doesn't end until tomorrow. (june 2)

Regards
Joe

[Cynthia]

Friends,

The NBCC conference in DC is wonderful (and is still in full swing). I have had the great pleasure of getting to know Michele and Shannon from the Board. Michele and I also attended a conference yesterday by Dr. Mark Pegram (an advisory board member for Her2 Support Group) who was terrific. Michele, Shannon and Gina all had dinner together last night (I slipped out of the conference last evening before they took off so I missed out on the fun).
Tomorrow is the last day of the conference. We will spend it lobbying our senators and congressmen/women on Capitol Hill.

We can provide more details about what took place after the conference wraps up. Given that I live so close to DC, I am able to sleep in my own bed each night (and log onto this site) while the others are at the hotel. It is so great to get to meet fellow Board members. I am here to report that Michele and Shannon are even more wonderful in person.

Stay well,

Cynthia

[RhondaH]

Thank you for your posting...I am glad you are all having a wonderful time.

Rhonda

[Joe]

Michelle, Gina, Shannon and Cynthia,

What happened at the advocacy conference?

Regards
Joe

[mekasan]

Hi Joe,

I attended the conference, which was amazing. Hundreds of women and some men meet for three days where we were offered informative lectures about our country's need for equal access to QUALITY healthcare, the pressures influencing the FDA, the media's inability to get breast cancer's stories correct, the future plans for computerized health care records, and more. Newt Gingrich predicted that we will see a cure for cancer by 2022 (at the latest). He felt that computerized health care records as well as the implementation of health savings accounts will be necessary to find this cure. He was somewhat vague and unconvincing in my opinion.

We were also able to select three smaller workshops. I selected one about the pros and cons of Health Info Techonology (aka computerized health care records), another entitled "Adovocacy in State Government", and finally "Starting Breast Cancer Advocacy in your Community". I known Michele and Cynthia attended different workshops.

The last day on was dedicated to capital hill vists where smalls group of conference member visited as a team with their state's senators and representatives (or aids) in order to advance four legislative priorities developed by the NBCC. The first prority was to ensure that the appropriations committee for the Department of Defense funded the Breast Cancer Research Program at the full $150 million for 2007. The second was to ask for support for the enactment of the Breast Cancer and Environmental Research Act (HR 2231/SR 757). The third was to ask for the preservation of Medicaid's Breast and Cervical Cancer Treatment Program. Finally, we asked for guaranteed access to quality health care for all.

I personally met with five aids and explained my personal story as a way to ask for support.

The conference was jam packed with information, lots of fun, and truly an experience worth repeating. Please feel free to ask me any follow up questions. I would love to share

Sincerely,
Shannon

[michele u]

Hi All,

Shannon basically summed it up. I did attend 2 seminars on the medical side of things. Very information and very hopeful. The first was on Her2 technology. Dr. Mark Pegram was one of the speakers. He was personally involved in the Herceptin discovery. He predicted (with much skeptism) that Herceptin would be where it is today. He even predicted that Herceptin trials would be stopped due to effectiveness. I got to ask him some questions about Lapatinib (Tykerb) He does thing that Tykerb will be very helpful for us. They have stopped those trials also. I told him due to my lymph node status if it would be good for me. He said yes, but there is no way to get right now unless i'm stage 4. I'm hoping for FDA to approve it and my Dr. will give it to me off label. Hopefully by the end of this year. I also asked him if I were to take Herceptin still now, maybe every 3 months to prevent mets. He really didn't have a straight answer for that, but i'm emailing my onc. tomorrow and ask him. He also talked about a couple of women that were cured with Herceptin. I'm sure he was talking about Barbara from our site!
The second talk was on Nanotechology. VERY interesting. Lapatinib is a nanoparticle. The nano particles are the size of an atom. That makes them easier to penetrate the cell and get the medication to where it is supposed to go. Another trial that is in progress is nanotechology with infrared light. What they are doing is taking substance the size of an atom and putting gold around the particle. Then they infuse it in. It is soooo small so it seeps into the cell. It just sits in there till you shine a infrared light on it then it heats the gold then the cell dies. No damage to any other cells. Sounds too good to be true, but it is happening. They are just doing mice testing now, but the future is coming. Look for Nanotechology to be the future of cancer treatment.
I got the pleasure of meeting Cynthia and Shannon for the first time. We met up with Gina one night for dinner. It was very nice seeing her again. All I can say the Gina is the best parallel parker in the world!! She will know what that means.
Cynthia is very beautiful. Smart and sweet.When I spent the first day with Shannon I felt like I had my best friend there with me to hang around with. We had sooo much fun together. She in only 30 and I'm 42. She made me feel like I was 30 again!! This is the good side of cancer. Finding friends that you feel so comfortable with. I email Joe some pictures so look for them. If anyone has any questions please feel free to email me. mulmer@mainstaycomm.net I sure will try to answer them. I know I will be going next year.

[MCS]

thank you all for telling us about the conference. It sounds as if you learned a lot and made yourselves know to the right people to listen, and i'm glad that you placed emphasis on funding ( this is my pet peeve!, sorry but money makes the world go round and saves our lives-maybe we could somehow relate it to oil )

the nano stuff is being discussed for a lot of futuristic treatments, such as impulses to activate muscles. it sounds great!

so yeah if you remember anything else, please keep posting.

I, like MicheleU, have asked in the past to the onc if once the treatment is done, can I get it periodically as prevention- like a flu shot. he would not respond to it but i will keep asking.

XO

MCS ( maria)