Friday, March 20, 2015

About the numbers

My statistics are from two sources: SEER ( and from the top cancer journal, CA


·         We are living longer with breast cancer.

I don’t see it. I see two things wrong with this statement.

1.       The median age at diagnosis is 61 and the median age at death is 68. Untreated breast cancer is estimated to take about three years from diagnosis to death. That is, all that surgery, chemo and radiation is adding four years from diagnosis to death to the median.

2.       Techniques for diagnosing breast cancer, especially advanced breast cancer, have improved. Women are diagnosed earlier but that does not mean that overall they are living longer. They are living longer KNOWING they have breast cancer and that is not the same thing. For example, I was diagnosed with metastatic breast cancer almost two years ago because my tumor markers were rising. A scan confirmed the metastasis to the hip. I had no pain and no symptoms.

·         The number of women dying from breast cancer in the USA has not changed since 1970.

1.       The number of women dying from breast cancer in the USA has increased since 1970. In 1970 30,100 people died of breast cancer in the USA.

2.       The number of people dying kept increasing every year until it stabilized in 1992 at about 46,000. The number was approximately 40,000 for 2014 and is expected to be 40,730 for 2015. If this represents a rise in cases, please refer to the above about knowing about it for longer.

3.       The number of cases of breast cancer is over three times higher now than in 1970 (from 68,000 to an expected 234,190)

4.       The incidence of breast cancer and the death rate declined the most from 1995 to 1998. Then the incidence started to rise again with a modest decline in death rates from 1998 to 2011.

·         Breast cancer is rare in women under 50.

1.       The most common cancer in women under 50 is breast cancer and women under 50 have a 1:53 chance of getting breast cancer.

2.       The lifetime risk is 1:8.


Update on clinical trial: Vaccine For a Cure

I completed my loading dose of vaccines and antibody. I had four injections of the vaccine ONT-10 each week for eight weeks. In addition, I  had three infusions of the antibody, varlilumab, one every three weeks. Now I wait for my scans next month to see if it worked. If it does, I go on a maintenance dose every six weeks.

I feel great with no side effects. It is a wonderful break from AIs and all the problems those bring. You know what those are! I have managed to work and exercise normally and have a lot of energy. Sometimes I have so much energy that I can’t get to sleep and I get up to code. Then I have computer code chasing me all night.


How  does the early death of a mother from breast cancer affect a family.

Have you ever wondered what the long-term effects are when a young mother dies? This is the story of one family I know. The mother’s death was like taking a hammer to a mirror and then watching the splinters scatter and cut and scar. A husband and five children were left. The disease did not just take the mother. It took a family.

Six people were cast adrift. The anchor was gone.

·         6 people moved in different directions, lost

·         5 marriages, 2 divorces

·         2 very unhappy marriages not divorced

·         4 with drug and/or alcohol  problems

·         2 drank themselves to death

·         1 became a philanderer

·         1 turned to promiscuity then prostitution

·         Another went to prison for embezzlement

·         1 went to college

·         There was no proud mom at graduations

·         There was no mother-of-the bride

·         There was no grandma for the babies

·         There were no more family get-togethers

·         All struggled alone without a family safety net

·         The ones that are left have not interacted for decades

·         They were not nice to each other.


Saturday, March 7, 2015

Science and magic

The mass of men lead lives of quiet desperation. Thoreau

Any sufficiently advanced technology is indistinguishable from magic. Clarke

Update on my clinical trial

I’m still on the vaccine clinical trial. I am enjoying this period of no side effects, no symptoms and a relatively peaceful time. My life is still very much constrained by Thursdays at the hospital for the injections and infusions as well as trying to get work done. Fortunately, I have a flexible schedule. Unfortunately, I seem to be working all the time. This week, I had a sick dog and that ate into my spare time so I was quite stressed because of course, a sick pet takes priority of just about everything else.

I am currently doing a few MOOCs as well and fell sadly behind. Working on:
Future Learn: Inside Cancer


Reading the highest rated (by impact factor) cancer journal. Two articles of interest in breast cancer research. I’m just summarizing what I read.

From CA : A Cancer Journal for Clinicians

Medical marijuana for cancer: The conclusion was that more research is required. I followed the breast cancer references. My interest was only in breast cancer so I skimmed the rest.  Synthetic cannabinoids (component of marijuana created in a lab) have been shown to have antitumor effects in breast cancer in the lab and in mouse models. However, that was from early 2009 and the research does not seem to have gone anywhere since then. One reason may be because other research has shown that exposure to THC (the psychoactive component of marijuana) inhibited anti-tumor immune responses in breast cancer in mice and resulted in significant tumor growth and metastasis in some lines. (Comment: Something else to bear in mind is that negative results are rarely published so if further research showed nothing, we are unlikely to ever know.)

The problem with the research at this point is that marijuana is not standard and newer strains of the drug have higher THC to CBD ratios as the emphasis is on the psychoactive component. The lab and mouse studies are usually not compared to anything or only compared to a placebo, not standard treatment. So far, for breast cancer, there is no credible evidence that marijuana is better than standard treatment for tumor inhibition, appetite enhancement in cachexia, pain management or anti-emetics in nausea and vomiting from chemo.

Global cancer statistics 2012: Breast cancer was the most frequently diagnosed cancer and leading cause of death worldwide in women and the leading cause of death in women in less developed countries. There were an estimated 1.7 million cases and 521,900 deaths. In the world, breast cancer forms 25% of all cancer cases and is the cause of 15% of all cancer deaths in women. About half of all breast cancer occurs in more developed countries and cause about 38% of the deaths from breast cancer. The only area of the world that had a higher incidence of breast cancer than North America was Western Europe with 96/100,000. North America had 91.6/100,000. This figure was not broken down further by type of breast cancer.

Superstition and science

My childhood is the story of colonialism in Africa. I grew up listening to the tales of magic and superstition from my nanny. My dreams were vivid stories of ancestors and love and war. I ate mealiepap for breakfast, umfino made with pumpkin leaves for lunch, and Umngqusho for dinner.

I understand superstition and my parents had deep respect for the power of the sangoma (traditional healer). The sangoma is still consulted by many even when conventional Western medicine is used. The sangoma was also consulted to put a curse on someone or remove a curse, to heal a body or spirit or find a cause for a broken one. I’ve known people to die because they believed that a curse had been placed on them even when no xray or test found anything wrong. I have also seen people die because they consulted a sangoma instead of taking an antibiotic for pneumonia. I have seen the comfort in crisis by the sangoma. When the sangoma threw the bones to tell the future, I lived in fear of what the bones would tell.

We had a family feud that went back four generations and with many accusations about sangoma curses. Every time misfortune would befall one side of the family or other, it was attributed to a curse. I still cannot look at a devil thorn without thinking about the “other” side of the family accusing my father of cursing their home with devil thorns.  Of course I only heard one side of the story.

Superstition is more than curses. It often reflects a lack of trust. I have heard young men say they refuse to wear a condom because it is a plot to limit procreation, not to prevent the spread of HIV. We have read the recent stories about ebola that illustrated the mistrust

My experiences in Africa left me with a love of magical things. (Don’t take me on in a Harry Potter quiz. You WILL go down.) However, studying science has enabled me to put that part of my life in my fond memory box.

Now, I will do things that my mother would never do.  I will seat 13 at the table, walk under ladders and break mirrors with abandon. It was a long road from running barefoot in the mud in Africa, terrified of every superstition and tokoloshe (boogeyman sent by the sangoma) to the world of running shoes and science and reason and clear rules to live by. In one generation, with a lot of lucky breaks, my life and the lives of my children were forever changed.

In my rather insulated world of science, we scoff at superstition and quackery and I have a knee-jerk angry response to quacks. If people want to pursue alternative treatments, there is no law against it. However, it may not be harmless. If people make claims about it that are not true or screw up a treatment by doing things on the side without telling their doctors then others might die. They raise their children with a mistrust of science. The US is now near the bottom of the developed world in terms of science literacy. Shame on us. So many of these quack claims are not even possible and reading a basic biology text would show them to be impossible. It is unfortunately unlikely that those who believe them would read a basic biology text. I want to emphasize that I am not talking about a handful of vitamin pills that your doctor laughs at and that end up being flushed through your urine. The few dollars spent probably don’t do more than minimal harm. I’m definitely not talking about your weekly or daily yoga or meditation class. I’m talking about serious and expensive cons that unscrupulous people use to part desperate people from their children’s college fund. Vitamin supplements are for another day, as are reiki, energy healers and other quack cures.

Science does not always get it right and I’m a huge skeptic of any evidence that is gleaned through self-report. I know enough about human behavior and memory to know that we don’t do what we say we do and we definitely don’t remember what we did. However, when I blast another quack cure and I get a stream of correspondence, I am alarmed that people try to persuade me by offering superstition.

1.       Anecdotes are not evidence. Testimonials are powerful persuasions but they are rubbish. Even if true (doubtful), it’s one person’s experience. Please don’t tell me that it worked for you is the only evidence that it works.

2.       Who wrote the article? The source of the claim is what gives it credibility. I’m often sent articles written by people who are making the preposterous claim.

3.       Quick check: Is the article from a credible journal? What is the impact factor?

4.       Second check: Did you look for credible evidence that it was not true?

5.       Newspapers sometimes offer accurate information but often it is best to remember that they are in the business of selling news and a perfectly accurate report may not be as sellable as one with selected highlights and exaggerations.

6.       The supplement industry is a multi-billion (that is not a typo) dollar industry. No one is getting poor on your supplements. Oh, except for you, that is.

7.       Computer models of disease and treatment are of limited use.

8.       Cures in the lab (in vitro) or in mouse models often don’t go anywhere. An estimated 95% of drugs never make it to treatment. Because something works in a petri dish does not mean it is an effective or even safe treatment. A whole lot of chemicals kill cancer cells in the lab. Fewer make it past mouse models and even fewer past clinical trials.


I know what it is like to be desperate. I cling to the hope that a cure will come before I die. However, I have watched women spend every last cent on looking for a miracle and dying broke and with heart-wrenching regret that they wasted their last good years instead of living in the joy of experience.  

My plea would be to donate those dollars to find a cure. Please donate directly to research. It is our only hope. There are many options. I like this one because they do research on breast cancer in young women.