Li-Fraumeni Syndrome Support Group

Hi all,

I learned about this website during the Li-Fraumeni conference at NIH today. It was a great event, meeting Dr. Fraumeni in person! I learned so much today and will use those information to determine my treatment plans for Breast CA. I'm still getting Herceptin and will probably have surgery in January. I'm excited to learn that there is a support group on-line for Li-Fraumeni people.

Can you post the website?

Shoonu,

I believe they're talking about this forum. I'm still traveling until tomorrow but plan on updating everyone here real soon.

Also I met Jasmina who said she knows you at MDA; it was really nice to meet so many peoples dealing with the same issues.

I hope you are doing well, how is you recovery going?

John

For Shoonu, this is the website I was referring to.

For John, thanks for asking, but my recovery is going well, with family and friends'support. I can't wait for your update when you return home. Have a safe travel.

I'm not sure if I met Jasmina and I don't know what MDA stands for? Sorry if I'm not up to date on that abbreviation.

I hope that the NIH conference will be an annual event, but better publicized. I only found out about it through my genetic counselor, otherwise, I would've missed it! It's also a good thing that I live an hour away from NIH.

Thank you Chris, I wish you all the best for your BC treatment, I know how tuff it can be.

MDA stands for MD Anderson Cancer Center. It is rated #1 for cancer treatment in the world. It's located in Houston, TX.

Jasmina is my new genetics counselor. I wanted to visit her yesterday since I'm at MDA again for more treatments. Little did I know that she was in NH with y'all. Can't wait to hear more about the conference. The MDA research team is really great.

Thanks Shoonu,

I just realized that John was replying to you, not me. Oops.

I hope your recovery is doing well and I will pray for you. I have heard of Anderson Cancer Center because my friend worked there years ago but I didn't know that it was rated #1. I'm glad that you are being treated in the best facility available. Did you move there for the treatments or were you already a resident? In any case, I'm close to Johns Hopkins Medical Center but they aren't really informative regarding Li-Fraumeni Syndrome at all.

Are you doing anything to keep up your spirit? I really hope so. Thanks for writing.

Chris I'm glad your recover is going well; having family supoort is a very important thing as we all know. I'm also gald you've joined this group. Until we as a family create something bigger and better to use as a tool for support and advocacy, I'm gald this foum is here for all. I am glad so many people at the conference where infomred about this forum; I hope everyone checks it out an find it helpful.

Thanks,