Reflections on the conference

Dear Friends,

Because of an eventful and busy month of May, I haven’t had the time to reflect on the conference Nancy and I attended on April 26th in Philadelphia.

Let me take this opportunity to tell you about this experience. Nancy and I rented a car and left Washington on Friday afternoon. We made a quick stop at our friend Julie’s house, picked up an iced mocha and some tea at the Coffee Bean and Tea Leaf at the Hilton and then joined traffic out of the city. Lots of rain and bad traffic caused some delays. We stopped at Denny’s in Delaware to get a bite to eat. When we were kids our parents took us to Denny’s a few times.

We arrived at Valley Forge at around 10 pm and had a nice room at the Marriott. Saturday morning we drove to the Marriott in West Conshohocken for the conference.

The Metastatic Breast Cancer conference was organized by Living Beyond Breast Cancer. We all received a flower lei (plastic but very colorful) and a bag with folders and other things. There was a nice breakfast buffet and the conference room was already full when we arrived. We sat at a table and met the other ladies and gents there: Stacey, a nurse in her thirties from Pennsylvania, Sharon and Sherry from Newfoundland, Sheila and Carol from Tennessee and a couple I didn’t get a chance to talk to. What struck me is that you would never have guessed that any of these ladies was living with metastatic cancer. For most of us the cancer was in remission or under control. I was the only one at our table with mets in the liver. The others had mets in the lungs or bones, or both. Stacey had used mistletoe from Germany alongside her chemo and her scans showed no signs of cancer at all. The ladies from Newfoundland were also very sociable and positive. That could be said of all the people I encountered there. Besides ladies, there were quite a few men there as well. Some to support their wives, a few doctors and quite a few patients as well. In the workshop I attended about managing stress and anxiety, a few men spoke up about their experiences, which was very good I thought. So often we think of breast cancer as a women’s disease, but there are men who suffer from it as well.

The morning started with a welcome from Jean Sachs, of LBBC. LBBC’s mission is to connect people with breast cancer with trusted information and a community. Their vision is that no one impacted by breast cancer should feel alone.

Next, professor dr. Julie Gralow gave a very inspiring and informative keynote speech. She explained the developments in breast cancer research and summarized the most important results of the last few years. I will upload a report of her talk soon. Here are some of the things she shared with us that I did not know.

Each breast cancer is unique. We are moving into the genomic area of treatment which will become tailored to each individual. Breast cancer is caused by genetic mutations or changes in the DNA. When DNA is changed or damaged, the DNA is normally repaired or destroyed. With cancer, this does not happen.

There are 5 subtypes of breast cancer: Luminal A (hormone positive), Luminal B (partially hormone positive), Her2 positive, Triple negative and Basal. Each subtype requires a different treatment approach. Treatment also depends on the patient’s age, gender, menopausal or not, etc. Treatment finally depends on what is available. Not all treatments are available for all patients, it sometimes depends on where they live, insurance or costs etc.

Treatment options include chemotherapy (also called systemic treatment), hormonal therapy, biologic therapy. Research and clinical trials are now also focusing on genomics, immunotherapy (activating the body’s immune system) and combining these therapies. A new initiative of the National Cancer Institute (NCI) allows researchers to run clinical trials in a very dynamic way. All therapies will be included and combinations are made and changed based on initial trial results. So if one combination seems successful, the other arms (groups) of the study are discontinued.

After the keynote, we also attended Dr. Gralow’s lecture on clinical trials. She explained the way clinical trials work: Phase I studies try to determine if a substance is effective against a type of cancer. Phase II studies focus on the dosage safety and efficacy. Phase III are randomized clinical trials with large groups of patients. Usually the new drug is combined with an approved drug and patients are randomly assigned to one of the arms (groups) of the study. A patient does not know if the new drug is given. These trials involve thousands of patients and are reviewed by experts and boards. The results from the study need to be statically significant and the side effects need to be managable. If the drug is too toxic, sometimes approval is withdrawn.

One of the issues patients with metastatic cancer run into is that sometimes they cannot participate in clinical trials because of prior treatments which excludes them from the study. Dr. Gralow explained that the clinical trials are becoming more expensive to run because the criteria set by the FDA to determine if it works (efficacy) and if the drug is safe (safety) are becoming more difficult to measure. These are often measured by total survival time, but in order to measure this, the study needs to run until patients have died. She prefers another approach, which is to look at progression-free survival time: how long before the cancer starts to grow? She also expressed concerns about drugs becoming too expensive. Since she also works in developing countries, she sees real issues with accessibility.

The lunch was very nice and after the lunch there were workshops. I attended the workshop on managing stress and anxiety. What surprised me is that many people in the US take a drug to manage their stress and anxiety called Xanax. We did a meditation exercise and then a dancing exercise. So dancing is a way to manage stress. I will have to try that at work sometime!

Carol from Tennessee gave me a really good tip to talk to the ladies from MBCN, a network by and for metastatic patients. They organise yearly conferences and you can watch the videos from 2012 and 2013 on their site. Carol recommended the talk by Dr Virginia Kaklamani Understanding MBC, How it is followed in the Clinic and When to use Standard of Care or Clinical Trials. Also they have a terrific Guide for the Newly Diagnosed (this links to the PDF version of the guide).

The day concluded with a fun talk by a dancer/choreographer who herself has mets. She told a funny story about trying to keep her wig on using pantyhose but the pantyhose rolled up and her wig was catapulted onto another table at the restaurant. She also showed many funny photos of signs that made no sense (in an amusement park a sign said “Small parents may ride with children”) and made us all get up and dance to 70’s country music. We all blew bubbles and had a good time. It was a good conference and we left with a feeling that it had been worthwhile.

That evening Nancy and I had dinner at the Cheesecake Factory in the King of Prussia mall.

We didn’t attend the second day, since the workshops started early and covered topics such as working and insurance (in the US), brain mets and writing to cope with cancer. The keynote was about side effects of treatment so I skipped that too.

The main take-away from the conference is that there are many options for patients with mets. I also spoke with representatives of the Metastatic Breast Cancer Alliance (@MBCalliance) which unites various cancer and advocacy organisations.

Nancy and I went to Philadelphia and met Jen’s mom and dad for lunch (see my post City of Brotherly Love).

My next post will be about the Penn Wharton club and about Railsgirls in Amsterdam!