Got any questions for some cutting-edge researchers?

[Paula O]

Hi,

I got this schedule below yesterday re: the Advanced Topics scheduled in San Antonio in December --looks great and neato that Debbie Laxague is speaking too! You GO, Girl! I'll be a friendly face listening to you in the audience :)

I got to chat briefly with Dr Sara Hurvitz about TDM-1 after one of her talks when I was in La Jolla for Project Lead this summer. IF IT WORKS OUT for me to direct some questions to some Drs/Scientists/researchers while I am at the San Antonio Conference: do you guys have any specific questions you'd like me to ask folks who are on the cutting edge of the research being done? List them here, and as I have opportunity, I will keep them in mind during the Q & A times or if I meet them during other times during the conference. If any questions are poised in this thread that somebody else here already knows the answer to from studying out the research, I'd appreciate it if they could please chime in with answers.

Thanks,

Paula

"We are pleased that you will be attending the 2012 Project LEAD® Advanced Topics in Breast Cancer – San Antonio Breast Cancer Symposium.
This session will feature an overview of the latest advances in breast cancer research,and will be followed by a discussion from an experienced advocates.
Schedule 8:00am – 9:00amBreakfast & Check-in9:00am – 10:00am“Early Phase Clinical Trials: What are they for and why do they need to be better?”
Susan Hilsenbeck, PhD, Baylor College of Medicine
10:00am – 10:15amBreak
10:15am – 11:30am“Latest Trials and Evidence for T-DM1 in Metastatic Breast Cancer”
Sara Hurvitz, MD, UCLA11:30am – 12:15pm“Advocate Perspective on Trial Design and T-DM1”
Debbie Laxague, RN, NBCC Advocate12:15am – 1:15pmLunch

[MikeF]

What effect if any does TDM-1 have on skin mets. This appears to be a different kind of animal.

[jacqueline1102]

Hi Paula,

I have a few questions for the researchers 1) In reference to dense breasts, how many breast cancers have failed to be detected because additional diagnostic tests were not ordered, such as an ultrsound and MRI, and the screening for breast cancer relied strictly on the mammogram for results? (I know this would involve a more retrospective analysis which they may not have any data on but could so earily be obtained)

2) When will the protocol for breast cancer screening become more flexible in terms of ordering ultrasounds and MRI's for those women with dense breasts.

3) There little know about the etiology of inflammatory breast cancer. How common is it for inflammatory breast cancer to present simultaneously with invasive ductal carcinoma and that an actual tumor was discovered but only after surgery. (as inflammatory breast cancer is said to have no lump)

4) What are thoughts of vaccinations for all women and what about those already with stage 4. (If they could discuss information about clinical trials for vaccination studies.)

I hope that all makes sense. Thanks for doing this.

Jackie

[Debbie L.]

Hi Paula! I look forward to seeing you at SABCS, too.

In addition to the Project LEAD Advanced Topics sessions, each evening there will be the Mentor Sessions offered by Alamo Breast Cancer Foundation. The format of those meetings has been that each expert has a few minutes to highlight what interested them in that day's presentation, and then there is time for advocates to ask specific questions about what was presented that day. It is always emphasized that the questions should be on-topic (that day's presentations) and generic rather than personally-specific. Scholarship recipients are required to attend but it's open to the public and many advocates choose to attend, because there are always interesting things discussed. http://www.alamobreastcancer.org/patient-advocate-program/sabcs-hot-topics-mentor-sessions/

The Advanced topics session will have Q&A but it will probably be mostly limited to questions and discussions about trial design, as that is the focus of the morning.

I am going to ask for some help from this list, too -- in a separate thread. NBCC has asked me to talk about the advocate perspective regarding trial design for adjuvant and neoadjuvant T-DM1 use.

As more and more of us (HER2listersisters) are attending SABCS each year, I wonder if we could consider all getting together, even just for a short coffee break or perhaps at lunch? There is an added value to face-to-face connections that is hard to pin down, but powerful. It's probably expensive to actually reserve a room for a meeting, but we could arrange to gather in that upstairs area overlooking the back, where it's usually fairly quiet, for example.

Debbie Laxague

[Nancy L]

Noreen Frasier, who has metastatic BC, started the Noreen Frasier Foundation. The foundation is focused strictly on metastatic BC research. Her husband is a successful TV producer. Noreen was one of the founders of Stand up to Cancer. I have seen her on TV twice talking about her work, once in a scarf and recently with a butch. She is on the chemo roller coaster. Recently she talked about a project with UCLA to find a drug to make metastatic BC a chronic disease like HIV. Her foundation gave $1M. She said a drug is in clinical trial and is showing promise but she didn't say the name of the drug or the pharma involved. I would like to learn more. I am positive Dr Hurvitz would have useful information on this work.

[sassy]

Debbie,

Steph and I are working on our group to attend SABCS this year and we'd love to be able to get together with as many people as we can. Let us know when and where works best and we'll be there.

[Nancy L]

I would also be interested in any fresh ideas the researchers might have on reallocating more of the research dollars to understanding and stopping metastastis. It is the only reason women die of this disease--40k each year. It seems logical to me if 30% of breast cancers metastasize at some point, 30% of the research dollars should go to stop this but currently it is only 5%. There are 155k of us in the USA in any given year living with stage iv disease and we are geographically dispersed And most of us are not well connected enough or well enough to bring on this fight.

[sarah]

I agree with Nancy. The good work on awareness has worked, we don't need so much spend on that. metatastic and inflammatory are more important.

[Mandamoo]

I am interested in vaccine progress and indications for those with stage 4 disease that is not stable on herceptin alone.
Also wondering about latest theories and treatments for those with herceptin resistance.
What about use of more personalised approach to care using genomics, chemo sensitivity testing and various DNA assays.

[Paula O]

Bumping this up...

Any other questions, guys?

I am going to start another thread about those going connecting for a meet up.

Paula

[Paula O]

Bumping this up again.

Paula

[Nancy L]

T-DM1 is close to being product. What is the next her2 drug that looks promising in clinical trial? I haven't heard of any.

[CarolineC]

Sorry I'm posting this so late; I hope you have a chance to see this before you leave. I'd like to know
- what is the current research on beta blockers and slowing down metastasis
- is there a definite link between breast cancer and diabetes or other auto-immune diseases-my mother had diabetes, my sister had MS and my father had Parkinson's
- are there any clinical trials on oligometastatic breast cancer
- is there truth to the cross-talk concept between ER and HER2 receptors - is Tamoxifen after Herceptin therapy fueling the HER2
-what are the thoughts on if adrenal exhaustion, fatigue, insufficiency is one cause of breast cancer - I have a doctor who went over my medical history when I was first diagnosed and she believed in the years before my diagnosis I had adrenal exhaustion (she mentioned progesterone stealing) and there is some thinking that this can lead to chronic illnesses and cancer; is that why the beta blockers are effective, because they work on the adrenaline receptors
- some research is finding that workplaces can be a factor - what about driving an older model car with exhaust problems - has anyone cross-referenced older model cars (by insurance) and patients who have cancer
- is any research finding that stage IV patients were possibly understaged at initial diagnosis for early stage- is better diagnostic testing in the works

Thanks for your help!

[Paula O]

I got it, Caroline. A big thanks to you and everybody for their great questions. Maybe I'll sit next to a brilliant oncologist who would rather have his brain picked than snooze on the plane. :)

Paula

[Paula O]

What a week! Talk about information overload on all my brain cells! We had extra meetings that were required as breast cancer advocates. One morning we all met for breakfast at 6:15 AM and finished a meeting with a drug company at 10:15PM that night with meetings/sessions all in between. I learned alot and met some very interesting people. I sat next to a fellow breast cancer advocate-- a Metavivor Rep on the plane from San Antonio to Dallas--what an amazing woman who is fighting hard to change the direction of where research dollars are going--rightfully pushing for more studies fosussing on issues of metastatic disease, the thing that is killing us breast cancer patients.

Well, I'm sorry that I don't have good feedback on these questions to report back. I printed out all the questions, carried them around with me all week in my rolling laptop case of "stuff" and did catch a few folks one on one to ask but not ones in the know apparently. Perhaps some of the other ladies who also attended have some input on these questions? Please speak up if anyone has feedback on these questions from the symposium or your own research.

I had a couple hours waiting in the San Antonio Airport and chatted with a delightful oncologist from the United Kingdom. After getting her permission to do so I pulled out my list from this thread and asked her all the questions but really didn't get answers. Ie: Mike,I told her about Barb. This dr knows of two patients on TDM-1 but neither had skin mets and she hasn't heard of any feedback on skin mets.

Sorry about that guys--I did try. :)

Paula