Pam Breakey’s MBCN Chicago Notebook Part 1: General Sessions

Editor’s Note: MBCN’s 6th Annual National Conference, “Moving Forward With Metastatic Breast Cancer,” took place Oct. 13, 2012 at Northwestern’s Lurie Cancer Center in Chicago. In a few weeks, videos and presentation handouts will be posted at MBCN.org. In the interim, here are some highlights.

We had a great time at Friday’s pizza party and we learned a lot from all of the presentations on Saturday. Among our 200+ attendees, the prize for the best notes goes to our friend Pam Breakey. We were so impressed with the summary she shared at bcmets.org, we asked if we could repost it as a two-part guest blog and Pam graciously agreed.

For those who don’t know her, a quick introduction: Pam is a retired psychotherapist and Episcopal priest who has been living with de novo metastatic breast cancer since March, 2004. She and her husband of eleven years, Mike, a retired police officer, live on ten acres in the SW Michigan woods where they compost, grow flowering plants and feed the birds and a feral cat.

Pam says her two- year-old granddaughter and her pets teach her a lot about living in the moment. She values questions over answers and views life as a journey.

Take it away, Pam!

SESSION 1:

Understanding MBC: How it is Followed in the Clinic and When to use Standard Care or Clinical Trials

Virginia Kaklamani, M.D., Associate Professor, Division of Hematology/Oncology at Northwestern

Some Basics…

  • Metastatic Breast Cancer is the breast cancer that has spread to distant organs.
  • Mets are not always “the same” as the primary lesion and therefore the importance of getting biopsies of the metastatic lesions has recently been recognized and made part of the staging/evaluation process.
  • There have been incremental increases in survival time since the 1970s.
  • In following patients, asking the patient “how are you doing” is the most useful. Goals are for treatment to work and to maintain quality of life.
  • Scans used are often CT, bone scan and PET.
  • Tumor markers used include: CA15-3, CA27-29, CEA, and CA125. TMs should be interpreted in conjunction with scans, which are generally done every 3 months and stretched to every 6 months when cancer is stable.

Treatment Goals: Yours & Your Doctors

Patients and physicians (oncologists) often have different goals of treatment. While patients want increased OS (overall survival) of a year or more and good QOL (quality of life), oncs often look at much shorter OS (4-6 months) as a desirable goal. This illustrates the importance of good patient-oncologist communication and decision making!

[Editor’s Note: Dr. Kaklamani was speaking in the context of clinical trial goals.]

Clinical Trials

Clinical Trials are research studies using people. Patients need to know what type of trial they are considering.

Phase I—looks at dose and toxicity and uses very small numbers of patients

Phase II-looks at effectiveness and uses small numbers of patients

Phase III-compares the study drug/treatment to standard drug/treatment and uses larger number of patients

Phase IV-post marketing study

Example of how a patient might benefit from a clinical trial—a patient with large brain mets plus at least ten other mets has WBR (whole brain rads) and a trial oral chemo. Patient has good response, is able to obtain A s in college and feels well. Ta-da—much happy dancing.

Questions for Patient to Ask When Considering a Clinical Trial:

• What is the reason for the trial?

• Which phase is it?

• How many patients are enrolled?

• What kind of patient is being looked for?

• What drugs are involved (both experimental and control)?

• How would I know that treatment is working?

• How often and for how long would I have to come to the hospital/clinic where the trial is being done?

• What is the randomization?

• Is there a placebo being used?

• Will I eventually be informed of what drug I was getting?

• What are the potential toxicities, side effects?

• Is there a standard treatment?

• What is the potential benefit to me?

• Does the benefit outweigh the risks?

• What will the financial cost be to me?

• What are my alternatives?

During Q & A—she stated that for us over age 30, exposure to radiation is not a problem. She also said that as time goes by, there are more generic drugs available to us and that those are good options.

Pam Says: I found Dr. Kaklamani to be easy to listen to and I thought that her patients probably like her a lot—I think I would! She seemed very approachable and down to earth.

SESSION 2:

Research on Treatments to Contain Metastatic Growth

Patricia Steeg, Ph.D., Chief of Women’s Cancer Section and Director of the Molecular Therapeutics Program, Center for Cancer Research, National Cancer Institute.

In a nutshell:

WHAT IT TAKES TO ELIMINATE A METASTASIS IS FUNDAMENTALLY DIFFERENT THAN WHAT IT TAKES TO PREVENT ITS FORMATION!!!

Dr. Steeg did not jump up and down or scream, but she emphasized this and has before and undoubtedly will again. Perhaps that might be our new mantra as metsters.

Most of the compounds that have been tested pre clinically for mets prevention that have showed promise do nothing to shrink established metastatic lesions, i.e., they work on single cells or micro mets only. It just is not known what causes dormancy or what ends it.

The current system of clinical trials is not set up to validate a metastasis preventing drug.

Editor’s note: And as metsters we need both kinds of drugs: those that eliminate or shrink a metastasis and those that will prevent new ones from forming. Unfortunately the current system is set up just to test those that shrink a metastasis and NOT those that will prevent new ones.

She mentioned Ann Chambers of Ontario as the “best researcher on mets.”

Pam Says: If you want to watch just one of the videos that will be posted to the MBCN website from this conference, I would recommend this one. Or the one by Dr. Kaklamani.

This was at least the third or fourth time I have heard Pat speak. She is very gifted at explaining complex biology and cell behavior to lay people. If I had pots of money to give for mbc research, I would give it to Pat. I find her highly approachable and very willing to talk with us.

Editor’s Note: The Metastatic Breast Cancer Network presented Dr. Patricia Steeg with the Ellen Moskowitz and Suzanne Hebert Leadership Grant Award to a thunderous ovation from our attendees.

SESSION 3:

How Do I find a Clinical Trial

Elly Cohen, Ph.D., Program Director, BreastCancerTrials.org

Three websites mentioned:

1. BreastCancerTrials.org was relaunched this spring At their site, you can put in info about the specific cancer, treatments used so far, etc and request notification of trials that might be a good fit.

2. ClinicalTrials.gov

3. NCI cancer.gov/clinicaltrials

Pam Says: I used one of these sites in the past and got notification of several trials but had a hard time finding specific info back on the main website and found myself spending more time than I wanted to so signed off and don’t remember which site. For anybody looking for trials, this is good info to have!

SESSION 4:

Emerging Research-Hope for the Future

Steven Rosen, M.D., Genevieve Teuton Professor of Medicine, Director-Robert H. Lurie Comprehensive Cancer Center, Northwestern

Pam Says: This poor man had the worst time slot of the conference—after lunch nap time—I found it hard to concentrate and I don’t know how much of that was timing and how much was his presentation. I am afraid I have nothing at all to report as my notes make no sense to me whatsoever!

SESSION 5:

Advocacy: Use your Voice to Change Outcomes for MBC

Shirley Mertz, J.D., MBCN board member and patient advocate

  • The HIV/AIDS community has been a great example of how a community can come together and advocate for heath care issues. They got educated, organized and active. They can be a good model for activism.
  • BC and MBC are political issues. Society attitudes about a disease are shaped by the influence of “important people” and organizations.
  • Our issues include: access to care (no insurance-no treatment), pre existing conditions, lifetime limits, denying patients treatment when it is most needed, MBCN and NBCC lobby for the Affordable Care Act
  • We need to know where our members of Congress stand on the Affordable Care Act, and where the Presidential candidates stand.
  • Key messages of October – the public think bc is solved, they don’t understand MBC, early state survivors are fearful of MBC
  • When we do advocate, we should let MBCN know.
  • MBCN and Komen had a seat at the Metastatic Cancer Round Table in Feb 2/2012. Komen is figuring out that women with MBC don’t feel represented at Komen and they are asking What can we do for metastatic bc?
  • Write to Komen or talk to the local Komen affiliate
  • Less than 5% of bc research funds go to target the metastatic process. That needs to be addressed.
  • Shirley suggests that when we are to have biopsies, we ask our docs if extra tissue can be taken for research!

Pam Says: This is the third or fourth time I have heard Shirley speak, too. She is energetic, passionate and delightful. I find her very warm and approachable and am glad that she is out there lifting her voice in advocacy for us! She was the final speaker of the conference and sent us off with a message of advocacy and an energetic one. What a great ending……

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4 Responses to Pam Breakey’s MBCN Chicago Notebook Part 1: General Sessions

  1. Joanna Farrer says:

    Pam, Many thanks for this comprehensive report. As someone who is not able to attend the conference I have been keen to hear/read about the happenings of the meeting. It is very positive to read about the meeting. Kudos to the MBCN for excellent speakers and topics of discussion.
    Jo

  2. Colleen Hofmeister says:

    Oh my gosh, Pam, what a GREAT job you have done! i literally felt like I didn’t miss the conference after all; what a sense of relief! I had been able to participate in the Boston conference and was hoping to make it to Chicago, but life is just too darned busy right now–I vow to be well enough to go next year–do we know where it will be yet? The folks you meet at this conference are the BEST and it certainly serves to make you feel like you are part of something much bigger than yourself. All of our voices must be heard! I am eager to read Part 2 of your report! xxoo Colleen

  3. […] MBCN’s 6th Annual National Conference (“Moving Forward With Metastatic Breast Cancer,”) took place Oct. 13, 2012 at Northwestern’s Lurie Cancer Center in Chicago. In a few weeks, videos and presentation handouts will be posted at MBCN.org. In the interim, here are some highlights from selected breakout sessions, from attendee Pam Breakey. Pam is a long-time participant on the BC.Mets.org site and, as you will see, takes wonderful notes. Part One: General Sessions […]

  4. […] The Metastatic Breast Cancer Network held its 6th National Conference – ”Moving Forward with Metastatic Breast Cancer” — at Northwestern University, Robert H. Lurie Medical Research Center in Chicago, IL. The conference focused on the latest treatments, coping strategies, future therapies, and networking with other patients. […]

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