Thursday, April 23, 2015

Living Beyond Breast Cancer convention for women living with metastatic breast cancer

The long brutally honest version from my perspective. 

 We met in Philly for the Living Beyond Breast Cancer convention for women living with metastatic breast cancer on April 11 and 12. For me, it was a tweetup to meet the women who have helped me navigate my emotions as I deal with this disease every day. I did not really expect to get much out of the sessions. Some were helpful and some less so. I sometimes thought that some people giving those talks really did not have a clue. However, I do want to emphasize that this is just my take on the proceedings. I could easily have misinterpreted things as I filtered it through my own experience.

Friday evening:

Reception and welcome. I didn’t know a soul so I registered and ate my fruit salad and went back to the hotel. I was not up to discussing my diagnosis which seemed to be the topic of numerous conversations.

Saturday morning:

Breakfast and meet up with friends. Things immediately started looking up.

Keynote: Promising New Pathways in Treating Metastatic Breast Cancer . Minetta C. Liu, MD

I thought this talk was somewhat useful, but it was too specific. I really was only interested in my kind of cancer. I didn’t find out a whole lot of new information that my oncologist had not already shared with me. I found it depressing when she talked about treatments coming down the pike that we had already missed out on and would not be available for us. She talked about how each subsequent line of treatment has a reduced response rate. She discussed some specific drugs. She briefly talked about the role of immunotherapy and the measles vaccine as new areas of research.

Break out session One:

Don Dizon, MD, FACP Managing Symptoms and Side Effects: Pain, Fatigue and Insomnia
This was one of the highlights for me. I have enjoyed his common sense approach on Twitter and I enjoyed his talk even more. He had a lot of good advice but of course, also said scary stuff.

He discussed the control of pain and the escalation of drugs to control pain, limit disability and maximize autonomy. He talked about treatment of neuropathic pain (anti-depressants) and inflammatory pain (corticosteroids) as well as the usefulness of drugs such as Xgeva in controlling pain due to bone metastases. He talked about the difference between acute and chronic pain and non-drug treatments such as acupuncture (maybe), massage (increases well-being), exercise (good in every way) and hypnotherapy (no evidence).

He had some good advice for when to make sure you take it and your analgesia is not working. Take it when the pain interferes with the activities of daily living. Balance the side effects with the effectiveness and it’s very important to take the drugs as prescribed. Important in dealing with pain is quality of life issues. Metastases can cause serious issues such as bleeding, cord compression and fractures. Radiation therapy treats pain for many patients but comes with a different set of problems.

When describing pain to your health care provider/s, be prepared to describe:

  • Character of the pain – stabbing, throbbing, aching etc.
  • Location – where the pain is and what activities seem to bring it on
  • Duration- how long it lasts
  • Exacerbation – things that seem to make it worse
  • Remitting factors – things that seem to make it better
  • Associated symptoms – such as numbness and tingling
  • Severity – how bad the pain is.
Bottom line is that no person with cancer should suffer.

Fatigue affects approximately 60% of cancer patients and can be debilitating but it can also be reversible. First look for obvious causes such as anemia or insomnia. Procrit and RBC stimulating drugs are a last resort. A psychostimulant (e.g., anti-depressant or ADHD drug) may be effective. Fatigue is a problem when it interferes with daily activities and causes distress.

Insomnia can be primary (difficulty getting to sleep) or secondary (waking in the night). Causes can by physical and/or psychological or even environmental (e.g., too hot or cold or light or that dog sleeping on your bed) issues. It can be the side effect of medication such as dexamethasone or a sign of disease progression.

Insomnia can and should be treated when it is problematic. Cognitive behavioral therapy is one option. You learn to quiet the distractions and stop intrusive thoughts and relax. Physical exercise is important as well as establishing a familiar bed-time routine. Make sure you do get out of the house often. If you can’t sleep get up and do something.

There are also medication options. Melatonin is unregulated so can’t be recommended. Anti-depressants may help. Benzodiazepines are a short-term (1 – 2 weeks) solution.

When facing cancer, it’s all about you.

Then Dr Dizon said something that no one I spoke to agreed with. He said that no matter how hard it is for us, it is more difficult for those watching us die. I can only think that his patients don’t really tell him what’s going on. My husband (a dear loving man) completely disagreed with this as well. It is hard for him to watch what I’m going through but he is only watching. He does not have the endless blood draws, the gastric problems, the scans and the visits. Everything he hears about my illness is filtered through me. He does not have to mourn a future he will not have. He gets to take a day off which I never do.

About this, Dr Dizon was quite wrong. No matter how hard this is for anyone else, it is far harder for me.

Breakout Session Two

I went to: Coping with the Financial Impact of Living with Metastatic Breast Cancer
Joanna Fawzy Morales, Esq.

This was probably not the best choice for me. It was an excellent talk but I still work full time, have insurance and can pay my bills and her advice was better suited to those who were facing a more brutal financial impact.

She works for which is a great resource and everyone who is impacted by employment and life changes from cancer can get information from there. She discussed our rights and responsibilities as cancer patients and what the new health care laws mean for us. She cautioned everyone to do the math before selecting a health care plan. We will most likely reach the out of pocket maximum every year so don’t try to save a few dollars on the monthly premiums. Decisions like that can be very expensive.

She talked about Cobra (18 months on your current insurance) and who is eligible for SSDI (those who have paid in for 5 or more of the last 10 years). She warned us that 62% of bankruptcies occur for medical debt and 80% of those have health insurance. However, companies can no longer cancel your health insurance, and cannot impose lifetime or annual limits. They also have to cover the routine costs of clinical trials. Premiums can be adjusted for the number of people covered (individual/family), geography, age (to a limited extent) and tobacco use. However, you cannot be denied for a preexisting condition.

She discussed disability insurance but of course for us, that was a moot point.

There are a number of resources available to cancer patients that can be utilized. Never assume you do not qualify:
· IHSS – In home support services
· Disability waiver for bills
· Financial resources: pink fund, ACS, cancer care, giveforward, co-pay assistance, prescription drug, transport (ground and air), lodging, gas, parking and toll.
· Cleaning for a reason
· Food banks

There are a number of webinars and is holding a one-day conference on June 12, 2015

Saturday afternoon

The only session at the conference that I felt personally offended by was the afternoon keynote: Riding the Cancer Wave – Spirtually Speaking

I gave it a try but the description already had me on edge. 

"The journey through cancer is not unlike riding a wave—peaks, valleys, wipe outs and even sublime thrills. No wave is exactly like another. Each surfer has a unique style and way to navigate the wave and all its surprises. xxx, will explore the qualities he’s observed that help people ride the cancer wave with greater ease. He will also share what may happen when lifelong beliefs meet the challenge of cancer and discuss how it is that we tend to find meaning in the unlikeliest of places—including on the cancer wave.”

It started off fine, but when he said that “everything happens for a reason,” I had to walk out. The implication that I did something to cause my cancer and early death is unforgivable. There is no reason. It happened. I didn’t stay for the rest but I heard from someone who was forced to stay (disability issues) that he even dropped the “cancer is a gift” bomb. I have no idea who invited him, but whoever did needs to be severely disciplined. This type of speech is totally unacceptable. 

I skipped the End of Day Remarks and went for a run. By then, I was as mad as hell and I needed to clear my head. Afterwards, a few of us went to dinner at a great Chinese restaurant. Enjoying a meal with friends always restores my soul.


I went for a run and skipped the breakfast. I also decided to let the first session go. I just don’t get why people think that when we are terminally ill we want to experience our touchy-feely side. I’m sure it helps some but to devote a whole morning to it seemed like someone was really not focusing on what we needed. Acupuncture, meditation, yoga and whatever simply don’t work as well as Ativan and at this point in my life, I will put my mental health in the pill bottle every time. Seriously, we have to get things done. I don’t have time for the other stuff that is not going to make me better. Let’s talk going for a 5-mile run while I listen to a biography of Genghis Khan. Now that I can get into.

The final talk of the day was Increasing Wellness: Foods to Fortify and Boost Your Immune System

I love nutrition and this talk did not disappoint.


· Probiotics are good bacteria. Found in fermented food such as kefir, yogurt, sauerkraut, kombucha and sourdough bread. Sourdough bread. Awesome.
· Fiber. Beans, oats.
· Good food: Artichokes, asparagus, bananas, vegetables (duh), nuts, fish, avocado, flax.
· Vitamins minerals and antioxidants
o A = yellow and orange foods and broccoli and spinach
o C = lots of fruits and vegetables – tomato
o D = sun, egg yolk , vegetable oils
o Zinc = nuts, whole grains, beans
o Selenium = plant foods
o Copper – leafy greens

We don’t need a supplement unless we have a low level. If it is low for any nutrient, take a supplement to get to normal and then maintain it.

Sugar does not feed cancer but don’t eat junk more than twice a week.

Julie Lanford is on twitter @cancerdietician


  1. Love your recap. I wish I had been able to go to the side effects one. that sounded more valuable than the one I had to go to. It was so lovely meeting you in person. <3

  2. Hi, Lulu. I just found your blog searching for people on the ONT-10 Phase 1b trials. I just completed one month -- last week, I had the shots and the infusion -- and I am anxious to know more about your experience. Would you be interested and comparing notes?