Burning Feet/Scan Results/Treatment #30 TDM-1 #13

January 12, 2015/Scan January 29th

Though I didn’t want to, for fear my dosage of TDM1 would be reduced, I told the P.A. about my ever increasing neuropathy (nerve damage). My fingers and toes have had prickly sensations ever since I was treated with Taxotere. Over time the pins and needles have become part of my daily life. Sometimes I am highly aware of it; sometimes I am not. Recently though, my toes have started to feel like I scorched them with boiling water. During the day, the burning is there, but I can tolerate it. At night, though, when I slip into bed--WOW--the throbbing and burning set my toes on fire! The burning is lessened by morning, but my feet feel swollen making it painful to walk.

The P.A. told me there is no good treatment for neuropathy caused by chemotherapy treatments. I read about neuropathy before my appointment and learned the best treatment is dose reduction or stopping the drug altogether. Since TDM1 is giving me more time for life, I fear having to stop it. We decided to go ahead with a full-dose infusion for this treatment. By the next appointment, my scans on January 29th will be read, and if there is no progression, I will continue on TDM1 but at a reduced dose.

I had no idea the kind of pain I would experience by keeping TDM1 at full-dose. When I awakened the day after my infusion my feet were ablaze. The burning sensation started at the top of my foot, went over my toes and stopped at the ball of my foot. My feet felt swollen; each step was difficult and slow. By Wednesday, I called the nurse in Chapel Hill and told her what I was experiencing. The drug Gabapentin 100mg 3 x a day was prescribed. I started it the next day. This drug doesn’t provide pain relief for all patients. I worried I was one of the unlucky ones because each day the only relief I found was from an ice pack. Again, I called the nurse who asked me to increase the dosage to 300 mg 3 x a day. By the third week of pain, I am finally feeling relief. Not complete relief, but at least I can go to bed at night without ice packs.

Along with the Gabapentin, a prescription for Voltaren Gel was sent to my pharmacist. After one week of a game of ping pong--my insurance company would not approve it since it was an arthritis medication and only had limited success with neuropathy--I decided to pay the $59.00 hoping this gel could add some relief. With Gabapentin in my body for a few days at the higher dose, I can’t say for sure the gel helped. It sure didn’t make things worse.

My appointment this Monday will be a happy one. I had scans yesterday at 10:00 a.m. At 5:30 p.m., my youngest was enjoying her jazz class. I pulled out a book and began to read. My phone buzzed, I looked down and, since I didn't recognize the number, I sent the call straight to voice mail. A minute later, I called my voice mail, and I heard the greatest news. "Your scans look great. We will see you on Monday.” That means my disease is still not detectable by CAT scan--no evidence active of disease! I get to continue receiving TDM1. My dose will be reduced which does scare me a little, but hopefully it will continue allowing me to dance the “happy dance”.   

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.

http://breastcancer-news.com/2015/01/05/genentech-updates-results-phase-iii-marianne-trial-advanced-her2-positive-breast-cancer-patients/?utm_content=bufferd44d5&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

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 sciencebasedmedicine.org 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.www.stemcells.nih.gov/info/basics/pages/basics2.aspx

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 http://www.nytimes.com/2005/09/27/health/27canc.html?pagewanted=all&_r=1&
 
Follow the link below for information about the study.

http://time.com/3650194/most-cancer-is-beyond-your-control-breakthrough-study-finds/

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.

http://www.sciencebasedmedicine.org/is-cancer-due-mostly-to-bad-luck/?utm_source=rss&utm_medium=rss&utm_campaign=is-cancer-due-mostly-to-bad-luck 

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.