Sunday, January 11, 2015

Cancer in the News

My good friend Meredith and I in 2010.
I met her on the day of my first
chemotherapy treatment for stage 1.
Results of a Her 2 neu positive breast cancer trial--
The MARIANNE Trial was conducted by Roche/Genetech. The three arms of the study included Kadcyla and Perjeta, Kadcyla alone, and Herceptin plus a chemotherapy drug. The end-point of increased progression free survival was not met by the Kadcyla arms of the study. Although Kadcyla and Kadcyla plus Perjeta did not produce the desired result, I think Kadcyla will become a first-line treatment for Her 2 neu disease in the future. The side-effects are more tolerable than traditional chemotherapy. Kadcyla or T-DM1 is my current drug treatment.

Cancer—random or not?
I have read a lot about breast cancer for obvious reasons. The same conclusion is usually derived from my readings—no matter how well you take care of your body, no matter what you eat, or how few bad chemicals you are exposed too, many times--2/3 of the time according to a recent study--most cancers happen randomly and there is nothing any of us can do about it.

A recent study from Johns Hopkins University concluded that mutations occurring during normal cell division are not the only cells that develop cancer. Stem cells within many tissues of the human body undergo mutations during division as well introducing another player in this complex world. The study showed the higher number of stem cell divisions within certain tissues, the greater the chance of cancer. Despite society’s desire to believe that cancer is caused by environment and heredity, this scientific explanation steers away from victim blaming and is more easily explained as random chance and bad luck.

The number of times a cell divides in a person’s lifetime increases the number of chances that something can go wrong. There is nothing new there.  Because of this, it is amazing to me that people do not get cancer more often than they do. What was new for me was the relationship of cancer and the number of stem cell divisions in many tissues.

Breast and prostate cancers were not included in the study because it is unknown the number of times a stem cell in that tissue divides. The link to that I provide further down in this post gives information about breast cancer and environment/lifestyle in an article about this study.
The website linked below explains what stem cells are and how important they are to our bodies.
The following is one paragraph taken from that website. 

Stem cells can give rise to specialized cells. When unspecialized stem cells give rise to specialized cells, the process is called differentiation. While differentiating, the cell usually goes through several stages, becoming more specialized at each step. Scientists are just beginning to understand the signals inside and outside cells that trigger each step of the differentiation process. The internal signals are controlled by a cell's genes, which are interspersed across long strands of DNA and carry coded instructions for all cellular structures and functions. The external signals for cell differentiation include chemicals secreted by other cells, physical contact with neighboring cells, and certain molecules in the microenvironment. The interaction of signals during differentiation causes the cell's DNA to acquire epigenetic marks that restrict DNA expression in the cell and can be passed on through cell division.

People want to know exactly what caused their cancer. Others want to know what caused someone's cancer so they can avoid the behaviors of people with cancer. When I was first diagnosed, I hated the idea that some people were probably blaming me for my cancer. I imagined people asking themselves when they found out my condition, “Oh, it must have been something she ate, or it is the cleaning products she used. Maybe she didn’t exercise enough, or she must not have breast fed long enough." Someone very close to me asked in 2009 (my second occurrence, stage 1) if my diagnosis was a message to me about how I live my life. Yeah, that one hurt.

Blaming the victim is not a new concept. Lung cancer victims probably face the most blame. While scientist believe that most lung cancers are caused by smoking, I have known and heard stories of smokers who live to be 90+ years and die of old age. Clearly their cells were not affected by the carcinogens taken into their body by cigarettes. Why were their cells different from another person's? Scientists have a lot of work to do to unravel this complicated mess.

Some environmental chemicals have been identified to cause certain cancers. Certain foods have been implicated in the prevention or even the cure of cancer.  The reality is that Information advertised as fact influencing public perception is many times not fact at all.

The website
 sciencebasedmedicinestates a statistic of 27% of breast cancers are linked to lifestyle and environment. A lifestyle that caters to obesity can be the culprit in estrogen positive breast cancer since fat causes more estrogen in the body which is the fuel behind this most common form of the disease.  This environmental/lifestyle factor, though, shows only a link and not a cause.

People grab onto environmental/lifestyle causes because people want to believe they can control the outcome of their health. The trend of today attempts to connect a cancer-free life with certain “superfoods”. I am not suggesting that eating healthy is not a good idea. I actually prefer fruits and vegetables to fried fast food. Thinking diet will prevent cancer or even cure it gives people the illusion that they have more control than they do. Perhaps that is why people are so easily duped by fantastic claims by the food industry of the benefit of eating certain foods. This kind of thinking may actually breed less compassion for the sick because of the public perception that they did it to themselves.

I think Dr. Barnett Kramer, deputy director in the office of disease prevention at the National Institutes of Health, got it right when he said, "Over time, the messages on diet and cancer have been ratcheted up until they are almost co-equal with the smoking messages. I think a lot of the public is completely unaware that the strength of the message is not matched by the strength of the evidence." NY Times article from 2005

Follow the link below for information about the study.

The article below is very long. If you make it to the end you will find that indeed bad luck is the biggest contributor to cancer’s occurrence.

What would you do if you were told you can’t receive treatment? 

I know first-hand the financial burden of cancer. No one, insurance companies, governments, individuals, or even me, has an unlimited supply of money. The uncertainties of health insurance and what it will or will not cover in the future happening here in America causes me great trepidation. Three of the drugs that are for my particular type of breast cancer were recently band in the UK by their government-run healthcare system because of the price of these drugs. This week a final decision concerning these drugs will be made.

The mind-set of the people making these decisions must be “Let’s face it, stage IV breast cancer kills. Those who have it are going to die anyway. If it is not economically feasible to keep a person alive, well that is simply reality—sorry”.  (My simple explanation here is not a valid description of how people make decisions about the approval of drugs. These words of mine express the fear and anger that I have for my existence being at the mercy of so many things--people, money, my disease, drugs, my cells.)

Anyone at anytime could decide that paying for my drug(s) is too expensive, and I am not worth keeping alive. It scares the hell out of me.

**A reader left a link about the UK's NHS Cancer Drug Fund list of approved drugs and the process involved. I found it interesting--find it here.  

**Update as of November 5, 2015 -- manufacturer lowered price of Kadcyla in United Kingdom find it here


  1. Link to NHS (UK) chemo drug decisions.

  2. Thank you for the link above. Readers, please go to that link and select "NEWS". There you will find a description of the process involved in deciding which drugs to add or remove from the list of approved drugs. Any entity --government or otherwise--in the USA or otherwise has to make these tough decisions. Certain patient protections are in place for the UK patients affected by these recent decisions.

  3. Lordy...I can't imagine anyone saying that to you and pray to God I never said anything like that!!! I love you! And, I love you for writing what you know, what you learn, what you feel, what you want, what you need, EVERYTHING! Thank you so much! xoxoxoxo

  4. Lisa, you have expressed my sentiments exactly. I am in the US and my insurance company now won't pay for Perjeta in combo with Kadcyla, but only for Kadcyla. This is probably due to the Marianne trial. We are appealing and then can go to Genentech to ask for compassionate use of the combo. I am not optimistic. The cancer has gone to my brain after two years on the combo, so they probably figure I will die in the next year. Sad, but it seems to be reality for them (not for me, I hope). You keep on blogging;you really do make a difference to all us stage IVers. x

  5. Jan, thank you for visiting my blog and leaving a comment. I appreciate your time to do so. Thankfully your insurance company is still approving Kadcyla for you. My oncologist told me recently that once the cancer enters the brain the blood-brain barrier has been breeched and there is some evidence that drugs other than Tykerb may then be able to enter the brain. I hope this is the case for Kadcyla. Maybe now it is able to slow your brain progression. We as stage IV patients live everyday afraid that someone will decide there is nothing else that can be done. What if we could be the tiny percent that live longer than any clinical trial data suggests because of a particular drug or drug combo? I hope Genetech will give you that chance to find out by allowing you to continue receiving a Perjeta.