MBC Conference this Saturday

[SoCalLady]

MBC Conference this Saturday, March 30, 2019, all day from 8:00 to 4:00 at UC Irvine, Irvine, CA. Pacific Standard Time. Sponsored by Susan G. Komen. Go to komenoc.org/metsconference for conference outline. I will be going, but just found out it will be live streamed: youtube.com/watch?v=RVTAHqO...(Not working as expected?) The breakout individual sessions focusing on 1) Brain Metastasis; 2) Bone Metastasis; 3) Lung Metastasis; & 4) Liver & Visceral Metastasis will be available sometime in May on Komen Orange County Youtube channel. Wanted you all to know so you can possibly tune in.

[1998withStage4]

I’ve been on the planning team since the beginning. It’s shaping up to be a great conference to learn new things and meet new and old friends.

[mariootsi in reply to 1998withStage4]

Enjoy the conference!

[SoCalLady in reply to 1998withStage4]

And ladies, what our humble 1998withStage4 didn't tell you is that as a MBC patient for more than 15 years, she will be giving her testimonial first thing. So, don't be late tuning in; she's a fighter, inspiration, and teacher for us all!

[Duranteg]

so happy it's finally here!! I am anxious to watch. As the cancer can spread to several organs, it will be nice to know what medicine will look like. The more we know.....

[kduck]

Thank you for this info. I try to keep up with anything pertaining to mbc.

[Estherdaughter]

Thank you for sharing, I will be sure to watch.

[mariootsi]

Thank you for the info!

[diamags]

Thank you!

[SoCalLady]

I'll be at the bone mets table too. Probably like a round table. Both me and hubby will be taking notes.

[1998withStage4]

I think the link was above but here it is again. Program starts live streaming at 8:45 am Pacific Saturday 3/30. The full conference including all the breakout sessions will be available around the end of April. youtube.com/watch?v=RVTAHg0...(Not working as expected?)

[SoCalLady]

Thanks, much better! I don't think the other link was even working. It just appeared and didn't register the web site.

[SoCalLady]

Go to the link below on Saturday that 1998stage4 put up. Don't know that this one will work.

[SoCalLady in reply to SoCalLady]

Or should I say the link above with the actual conference ad on it.

[DinNorCal]

Thank you so much for the info. I plan to tune in. I Have Mets to spine and both lungs. Er/pr positive Her2 negative. Still going strong after being diagnosed with Mets in Dec. 2016.

Looking for that cure on the horizon and I take in as much info as possible.

Deb

PS: I just came back from a 3 week vacation in Hawaii....so travel is still on my future plans 😉✈️

[Kimr2081]

I got an email on this conference. I thought about going but just thought I couldn't sit and listen to talks about cancer all day. That's just me though. I think it should be a good one. Are you in Orange County? I think you are the first person on here that I have found that is from So Cal.

Kim

[SoCalLady in reply to Kimr2081]

Yes, I live in Laguna Hills. I think we may be close. I'm on Ribociclib/Letrozole (Clinical trial) & Zometa. Stable Bone mets at this time but markers keep going up and Ong wants to put me on Ribociclib & Faslodex, which will cost me about $3,200/mo. Procrastinating on that decision because of expense. Would like to find clinical trial that includes Faslodex. Did you take Faslodex alone for quite awhile?

[Kimr2081]

I live in Tustin. If you are ever interested in getting together please let me know. When my cancer first metastized it went to the bone and i was on Faslodex for 11 years with NED. Then in 2017 it reared its ugly head again in my liver. I was on Ibrance and Letrozole but that didn't work so I went on a trial through UCLA. It kicked my butt and the side effects were so bad I had to stop it. Of course the tumors all went away but came back after stopping it. We have found that hormonal therapies are not working for me so I had to go on Xeloda which is an oral chemo drug. I have been on it about 6 months and it seems things are stable but my markers went up recently. We are going to stay the course for now and then have some scans in May to see how things look. I can't imagine having to pay $3200 a month but I do remember that is about what the cost was when i was on it. My onc is now moving over to UCI and they have a comprehensive cancer center and trials are available there if I need to go back on one. UGH....

Take care and I really do hope you enjoy the conference and get some valuable info from it.

Kim

[SoCalLady in reply to Kimr2081]

For me, the conference was very general and overviewish (I know this isn't a word). For example, for the "breakout" sessions, I thought there would be actually round table discussions on the specific subject; some interaction. I went to the bone met discussion, which consisted of a panel that discussed Palliative Care, good diet (which was primarily the Mediterranean diet), a psychologist and mindfulness. Nothing on Line 1, 2 or 3 met care; the differences and similarities in mets, what to look forward to in the future. Nothing on open trials particular to bone mets. next to no audience participation (little Q&A). I think it would have been helpful to have people who are 5+ years out who are actually living and experiencing this disease to be on a panel along with ongs who deal with the patients daily. Maybe next time....

[Hidden in reply to SoCalLady]

I worry that they don’t have panelists who are five years out because this blasted disease still has that barrier despite the new meds.

[1998withStage4 in reply to Hidden]

Sometimes people living 5 years or more just don’t want to be around cancer stuff any more. They don’t understand that their huge value is being a resource to those new to MBC.

[Kimr2081 in reply to SoCalLady]

That's too bad. I'm sorry it wasn't more valuable. I hope they had a way to rate the conference so you could give them your thoughts. Take care and keep us posted as to how you are doing.

Kim

[1998withStage4 in reply to SoCalLady]

Super valuable feedback. Thank you. The conference committee is meeting in a few weeks to review the feedback and make future plans. Please send along your suggestions. They are very helpful.