[scrunchthecat]

Agness - Thanks for starting this! I don't have a lot of original material to add, but I can underscore some of your points:

1. There needs to be a better understanding of, and a better communication to the patient about, the role that the lymph system plays in HER2+ cancer. I had lymphedema as a symptom of breast cancer - I noticed my arm swelling before I was diagnosed, and before I was ever treated. At diagnoses, all of the doctors - my GP, BS, MO and all of the second opinion docs - just shrugged their shoulders at my weird lymphedema. I just happened to go to a breast cancer support group 3 months in, and met my lymphedema PT. None of my doctors had suggested I get lymphedema treatment. My lymphedema PT has worked magic keeping my swelling under control, and has given me the best advice about how everything from diet to exercise to my clothing can help or hinder the flow of the lymphatic fluid. What she is less knowledgeable about, and what I wonder about is how does this draining of the lymph fluid out of my cancer-damaged lymph nodes in my right arm impact the rest of my system, cancer-wise? My latest PET-CT shows that all of the hot spots in my lymph nodes and elsewhere were resolved, but is there any problem with draining the stuff out through them? My onc thinks that dead tumor cells are essentially lymphatic fluid, and therefore lymphedema treatment is a good move because it helps the body to eliminate them. It would be great to have the connection between the lymph system and cancer clarified.

2. Agness, as you were so kind enough to respond to my question about lymph nodes and brain/leptomeningial mets, doctors and patients need a better understanding of the connection between the lymphatic system and the CNS and how to manage this connection to prevent recurrence.

3. A better understanding of the connection between HER2 and immunotherapy. First, how can we, as patients, strengthen our immune system to help fight HER2 recurrence via diet and supplements? I am going to ask my ONC to measure my Vitamin D levels, but he may refer me to my GP for this blood test. Why can't we include some kind of "immuno-panel" with our numerous blood tests? Second, we need more access to clinical trials that look to prevent recurrence of HER2 through immunotherapy. AND those trials need to be better funded for Stage IV. I know of at least two trials that are having problems raising money: One at U Washington, which has suspended the recruitment of patients, and another at UPenn that I just learned about, which is struggling to start the patients who were lucky enough to get enrolled because of a lack of funding.

4. We need a higher visibility of HER2 disease. Someone wrote on a board: There are a lot of HER2 therapies because it's so aggressive, it's easy to grow quickly in the lab and figure out ways to kill it. We need a marketing campaign aimed at eradicating death by HER2. We could make the argument that, although it touches only 20% of breast cancer patients, it is well understood enough to target for eradication. Big funding likes the idea of being able to not just help a disease, but eradicate it.