Miss me? I'm not supposed to apologize for not maintaining my blog schedule. It's considered poor practice. I'm sorry anyway.
Lots and LOTS happening.
FIRST AND FOREMOST: My mom had her 3 month follow up PET scan last Friday. Yesterday, she was told the area is responsive. I don't remember what the exact words were but her appointment is next week so I'll get copies of the reports. Bottom line, I was hoping for "stable." I'll take stable. To hear responsive was great news. Also, her liver enzymes are stable. She was given a full dose of medication for the first time since March and they did not spike. More good news. Very thankful. And thanks to all the tweeps who sent love my way when I took that to twitter (while mom was still talking to me).
Second and important!! METAvivor. If you are able to help in any way, please read the original blog post and contact CJ. In fact, even if you READ the original post, go back. There is a video interview with CJ that I embedded into the post after it was originally published.
Little help, big help, in between help.... many hands lighten the load. We are still developing the program. Be patient and if you have ideas, we will be all ears. CJ (on the right) is in charge of this national effort. I'd like to believe that this photo of our FIRST real life meeting is what sparked the idea to take the effort nationwide. We need to raise awareness about Metastatic Breast Cancer and we need to see metastatic disease properly funded. Urgency.
And, while I'm on the research thing...... PLEASE consider signing the petition at All Trials. It's worth a click. All Trials Reported--ALL Results Registered. Read. That's not the present protocol and there is information to be gleaned, even from "failed" trials. Read, Sign, Share?
Tomorrow, I am giving a social media presentation in the afternoon to some friends, prostate cancer advocates I met at AACR. In the evening, I will be on a panel at the Health Care Pioneers meeting. Scroll. An exciting healthcare innovation panel. Have you taken Medivizor for a test drive? No? Click. Upper right. It's getting better and better. Continues to impress.
And while I'm at it.... how about Health of Women Study? Did you join yet? No?? GO. And check the Army of Women studies, too. See if you qualify for any of those. It works. Just look.... I'm in this study which was closed rapidly! We MUST take this in a new direction. I'm tired of the same old same old. It's not moving quickly enough for me. Let's try some other avenues.
All for now. I left you with lots of assignments. All important. Are you with me???
Yes, I have missed you! And yes, I am with you -- on all of it! You are a force to be reckoned with, my friend.
ReplyDeletedear Annemarie,
ReplyDeletemy mind went to W-H-A-T??? when I read the all trials reported - all trials registered page. you're darn right I signed the petition. it's appalling to think of valuable information lost forever, and that there has been such little oversight on issues of ethics and transparency. I wonder how much a role big pharma has played in all of it.
I am dizzy just reading about all you have been doing for us. thank you, thank you. I am with you and agree - same old same old just isn't cutting it.
oh, your mom - such great news that the area on the PET scan showed it was responsive. and that her liver enzymes are stable, even after she had the full dose of medication. hug her and say hello and hooray for me.
love you,XOXOXOXOX
karen
AnneMarie,
ReplyDeleteYou are such an amazing inspiration and I'm beyond thrilled to learn the PET scan showed results for your mom to be responsive. I'm SO ready to see more response and funding to metastatic breast cancer ... you are a hero and a true, powerful force to be reckoned with! God bless you ...
Nicole