No surprise here: Institutional Corruption and the Pharmaceutical Industry

The systematic corruption of medical knowledge, ranging from clinical trials and new diagnostic categories through practice guidelines to physician prescribing practices, is highlighted in a special fall issue of the Journal of Law, Medicine & Ethics (JLME, 41:3). 

Okay, this was published last fall so you may call me a little slow. But the content, as much as I read (because there was so much more), clearly shows the issues. I recommend you start here and then read as much as you can (stomach).

I read that, I downloaded some articles and read them. I did not read them all. But I got the gist of it.

The systemic corruption, there term not mine, that leads to all sorts of on going problems and unethical practices. Look at this one sentence:

"....how pharmaceutical marketing also distorts medical practice, and how drug firms are even funding social network websites for doctors in order to quietly track their opinions on issues that affect their bottom lines."

And you thought NSA was bad about spying on US citizens.

This next bit was taken from one of the articles by Dr. Marc Rodwin:

We will see that the pharmaceutical industry’s own purposes are often undermined. In addition, pharmaceutical industry funding of election campaigns and lobbying skews the legislative process that sets pharmaceutical policy. Moreover, certain practices have corrupted medical research, the production of medical knowledge, the practice of medicine, drug safety, and the Food and Drug Administration’s oversight of pharmaceutical marketing.

Pharmaceutical firms have found ways to influence — and often corrupt — medical research and publications, and key firms and organizations that affect physicians’ clinical choices. These include: professional medical associations, continuing medical education programs, online professional networking groups, hospital administrators, insurers, organizations that create practice guidelines and diagnostic treatment categories, and patient advocacy organizations. These institutions in turn influence physicians in general and particularly influential physicians known as key opinion leaders.

So you wonder about the over priced medications that are promised to be miracles and then are pulled from the market because of previously unknown side effects. Perhaps the causes might lie in the truths uncovered here.

Doctor's Orders

Do you heed your doctor's orders? (Do you floss more because your dentist asks?) Two-thirds of Americans do not take their prescriptions medications as prescribed. That would mean that most of us are screw ups.

Yes there can be the issue of cost of the medications but aside from that it is sheer laziness or ignorance. I'm  not sure why.

The problem with not taking your medications as requested can result in life risking events - uncontrolled asthma or heart condition can result in an expensive Emergency Room visit or hospital stay. Even if its covered by insurance that adds costs to the medical system. And its 125,000 extra deaths each year.

I do my best to take my medications as requested by doctors. They make it damn complicated.

This is what I do:
Take this one daily, except Monday's when you should take 1/2 a pill.
Take these two pills weekly, 12 hours after your methotrexate injection.
Take this pill in the morning at least an hour after you take you first pill.
Take an extra pain pill at bedtime or at least 3 hours after taking evening pills.
And if I take all my evening pills at the same time I get a stomach ache so I need to split them up and take my vitamins later.

Every week there tends to be a little pile of vitamins that I missed at one time or another.... So I'm not perfect either.

Amanda - you left a legacy

I learned about Amanda yesterday. She was Canadian. She was a goth. She has a brother named James. She hadn't talked to her mother for five years. I know a few little scraps about her because she tweeted her life @TrappedAtMyDesk.

Yesterday morning I read this article on The Meta Picture: http://themetapicture.com/the-final-messages-of-a-dying-girl/

Then I went to Twitter and looked up @TrappedAtMyDesk and read her tweets. All 169 of them. Go do that.

Then this morning I went back and found this video on Twitter.


It is one of the most powerful videos I have ever watched.

Finally I found this blog post by the creator of the video on the life we leave behind.

One of her last tweets was:

Don't spend time being angry at people. Forgive them. Life is entirely too short.

She left a legacy.

For the naysayers who said people with cancer shouldn't use social media? You are stupid and narow minded. Look what you could have learned.

Dear Medical Researchers

Dear Medical Researchers:

This is what I want from you, besides a cure for cancer.

1. A medication with these side effects: weight loss, the ability to get 8 hours of consecutive sleep, and anti-depressant.
2. A cure for the common cold. This should be easy after a cure for cancer.
3. Medical tests that do not come with a 'pinch', a burning sensation, or being stuck with needles or any other 'ouchie'.
4. A dictionary that instantly translates 'doctor-speak', either the mumbo jumbo of big words or the vagueness of a non-answer, into normal human English.
5. Thrift - I want inexpensive treatments that will not line the pockets of pharmaceutical companies or others so that the term 'medical bankruptcy' will become obsolete.

That's not a very long list so it shouldn't be that difficult. 

Thank you.

A patient.

It was a huge mistake

I have no idea what took over my brain/body yesterday. Before 10am had done the following:

• Reorganized the linen closet - removed everything, refolded it and put it back in an organized fashion.
• Cleaned and refilled spice bottles 
• Reorganized the pantry and got rid of some really expired food.

I don't know what I was thinking. I had no plans to do any of this. But then my fingers started inching as I was looking for towels and I couldn't find the ones I wanted. So I had pull everything out and refold and sort everything. I even got my husband to put everything back on the top shelf the way I wanted it.

Then I went down to the kitchen and made some cookies. While they were cooking, I cleaned up my mess and then put some spices back and realized the jars were sticky and needed refilling....

And I went to put ingredients back in the pantry and.... well you get it by now.

My husband needed a new pair of shoes. I suggested DSW and looked online to make sure they had the right shoes for him. He said I didn't need to go with him - I said 'Seriously? You thought I would pass up an opportunity to go shoe shopping?' He got what he wanted and I got a nice pair of Merrell sandals for next summer from the clearance rack.

Later in the day I paid the price with a sore back from standing and doing too many things. Crap. I took a tramadol and hung out on the couch for a few hours.

They want all the ribbons too!

Or another appalling example of Komen's good' will. I am not into Komen bashing as a rule but sometimes they just set themselves up for it.

This time in Okeechobee County, Florida, there is a woman coping with breast cancer. The local Komen affiliate in Florida does not provide financial support to women in Okeechobee county. They recognize there are underserved areas and that they can't help everyone. I can understand this. They are part of a safety net and just can't get to every woman. This isn't my problem.

Here's the problem. While she was in surgery,  her husband doodled up a little ribbon logo for her.

Now they are getting a nasty letter from Komen saying it infringes on their pink running ribbon. Seriously? Don't rub salt into the wound here.

Komen is becoming lawsuit happy. You can't have anything 'for the cure' because they 'own' the damn phrase. Now they want all the ribbons? What a bunch of idiots!

How long - what every cancer patient wants to know

At every cancer diagnosis, one of the first thing every patient wants to know is "How long do I have?". (If you didn't wonder, there is something seriously wrong with you in my opinion.)

And they never really tell you. You go look up the statistics and find out the five year survival rates - which are always based on what was standard of treatment then and not now. You can over think all the averages to figure out your own expiration date. You ask your doctor questions - I once asked my oncologist what my odds were (after a lot of deep thought and gut wrenching decision making) and got some nice vagueness that didn't mean squat.

Doctors seemed to be trained not to give you a solid answer. Someone posted a link to this article by a self described 36 year old non-smoking neurosurgeon who was recently given a nasty cancer diagnosis. I read it and a lot more makes sense.

The patient/doctor clarifies about what the doctors are trained to say:

"My standard pieces include “it’s a marathon, not a sprint, so get your daily rest” and “illness can drive a family apart or bring it together — be aware of each other’s needs and find extra support.” 

I learned a few basic rules. Be honest about the prognosis but always leave some room for hope. Be vague but accurate: “days to a few weeks,” “weeks to a few months,” “months to a few years,” “a few years to a decade or more.” We never cite detailed statistics, and usually advise against Googling survival numbers, assuming the average patient doesn’t possess a nuanced understanding of statistics."

"In brain-cancer research, for example, while the numbers for average survival time haven’t changed much, there’s an increasingly long tail on the curve, indicating a few patients are living for years. The problem is that you can’t tell an individual patient where she is on the curve. It’s impossible, irresponsible even, to be more precise than you can be accurate."

It is true that we can't expect a doctor to pinpoint our expiration and then we cannot expect them to give an answer with any sort of specificity. But we still ask. Because we still want to know how long.

Mouth sores and other medical adventures

I never really had a problem with mouth sores. Until chemo that is. For those of you who are uninitiated, think canker sores.Ouch

During chemo, I was lucky enough to end up with mouth sores fairly frequently for the first few months, until my protocol changed to Taxol. My oncologist prescribed what is known as ''Magic Mouthwash" which his mixed by the pharmacist. Until that point, I never realized that the pharmacist at Walgreens or CVS would mix things to order in this day and age. I was under the mis-assumption that everything came out of a prepared bottle and was just resorted and relabeled.

But I digress. During chemo, I enjoyed Magic Mouthwash to solve my mouth sore issues. So why is she blogging today about life six and 1/2 years ago you ask? Because I am now on Methotrexate for my RA and it causes mouth sores. I have two on the tip of my tongue. Ouch.

So Wednesday afternoon I went to see my rheumatologist. She prescribed Magic Mouthwash for my then one mouth sore. I asked what is in it and found out they usually prescribe a combination which contains Benadryl, lidocaine (pain), Maalox (coating properties), and an anti-fungal. I said I am allergic to Benadryl. She had to find a combination without Benadryl.

She said she would have it, and another new prescription, called into the hospital pharmacy so she could communicate directly with the pharmacist. I had another test and then stood in line at the pharmacy to find out that my prescriptions had not even made it to the pharmacy yet, never mind be filled. They called the doctor's office and found out that the nurses had a question on her notes and had to wait until she was done with her next patient. I said fine, please have them sent to m y local pharmacy and I'll pick them up later.

Two hours later, I called the pharmacy and they did not have the prescription yet, only another one which I decided to pick up in the morning. But it was too late to call my rheumatologist back to find out about the missing 'magic'. And my mouth sore still hurt.

Yesterday morning I was back on the phone with the doctor's office. It was a computer glitch the prescription was in the system but the doctor hadn't signed off on it for some reason so it could be sent to the pharmacy. A second mouth sore started to emerge as well.

At 2pm I called the pharmacy to see if the magic was ready. No it wasn't. I called the doctor back and the secretary said it had been sent to the pharmacy but my insurance company wouldn't cover it because it contained Maalox which is available over the counter so it had been punted back over to my doctor for another revision and signature.

At 4pm I called the pharmacy again and found out they had just received the prescription and wanted an HOUR to fill it as they had to mix it. I went home and got comfy because my feet hurt and my tongue hurt, with its second mouth sore. They called 30 minutes later to say it was ready. Grr.

I got back in my outdoor clothes to go back to the pharmacy and picked it up. The second I walked in the door, I grabbed a spoon and swished it around my mouth. Relief finally!

After a lot of red tape, my tongue stopped hurting... That was just one day in my life as a patient. And my tongue still hurts when I eat anything.

I used to like winter

I always liked winter. (Stop me now if you think I have blogged about this for the past few years.) I used to go outside and play in the snow. I viewed winter as another season to get outside and have fun - skiing, snow shoeing, hiking, and more.

Now things are a bit different.

I feel like I have turned into a little old lady...

"Is that ice? I don't want to fall again and have to go back to the doctor."

"Its too cold to go out today."

"Do I need a walking stick to walk to the store? There's an inch of snow."

I am turning into a wimp.

I complain about the cold and snow, instead of enjoying it. The cold makes my ailments feel worse. I am whining and waiting until spring.

Breaking in new doctors

Its an ongoing effort that can take months or years! Today I am off for my third appointment with my rheumatologist. We are still getting to know each other.

My first rheumatologist, who I met a whopping two times, left the hospital and moved to another one which was closer to her home where she was a mother to two small children. I completely understand her reasoning. She was a nice woman and seemed like a good doctor but I just never got to know her well in two visits.

Then I met with a nurse practitioner for a three month follow up who was also nice. She got me started on injected methotrexate - and I HATE needles but that's another story.

Finally I met my new rheumatologist, who was recommended to me, in July. I saw her next in October and we made some progress. She got to know me a little more but we have a long way to go.

Today I meet with her for the third time. I hope for lots of progress. I have a big list of questions for her. I hope she has lots of answers for me.

My problem with doctors is I come with lots of baggage - meaning I have a really FAT medical file. Its full of cancer, endocrine stuff, autoimmune stuff, and a few decades of over use which has left me with assorted ailments. I have multiple doctors updating it constantly and regular blood work to keep track of things.

However I expect by a third visit a doctor will be up to speed and understand me a bit better. I'll keep my high expectations to myself and see how things go.

Those pesky guidelines again

You get diagnosed with an ailment, you follow (blindly or  not) your doctor's recommendations.  You make your decisions and you undergo treatment.  Your doctor is following the guidelines and you do your research and make your decision based on their recommendations and the current guidelines.

But what if, the guidelines have changed recently and you need to rethink your decision. What would you do with the old guidelines or what would you do with the new guidelines?

I found this story interesting of a local journalist confronted with a DCIS diagnosis and changed guidelines. DCIS is often over treated - or so the current guidelines believe. But which cases will go on to become something bad or not. What treatment options should be followed? Its a case of mastectomy vs. lumpectomy vs. no surgery.

As patients spend more time educating themselves on treatment options and guidelines, their decisions are more complicated. They want to be the educated consumer. But it can be very confusing to try to learn about statistics in medical care in treatment options.

Damn those pesky guidelines.

Stepping away from Dr. Google

I did it again. I asked Dr Google about symptoms. What the hell was I thinking? I had myself mentally on the way to the Emergency Room to get some help before I died overnight. Then sanity prevailed, I shut off the computer and went to bed. I am still alive. But I have increased the list of questions for my doctor on Wednesday or whatever day it is that I see her.

Why do I ask Dr Google any questions any more? I have no idea. I should know better. I mean with my medical history, blah, blah, blah, I am always a special case I think. I am not normal. I need to accept that.

But the real question is what is normal? What is this damn new normal all cancer people are supposed to achieve anyway? I am not sure Dr Google would know anything about the fictional new normal in the first place. Maybe I need Dr. Oz instead.

Crap. I'll just go to real doctors for answers to real questions instead.

A mistaken conversation or two with my husband

Last night:

Him: So what time are your friends coming over?
Me: Noon
Him: So what time do you want to get up?
Me: Ten

This morning about 4 am:

Him: Go back to sleep
Me: I'm wide awake and the cat is sleeping on me. (The cat is a delicate 15 lbs and makes my back hurt more than usual.)
Him: Go back to sleep.

This morning at 920am:

Me: What time is it?
Him: About 920.
Me: Why did you let me sleep so late?
Him: You told me to wake you at ten.
Me: Crap! I still have tons to do!

Four friends are coming over for brunch at noon. I am providing beverages and dessert. I need my sleep. I haven't slept this late in a long time. I got way overtired last week. I know you really can't make up lost sleep but I try on weekends to get enough rest.

As a result, I do not have time to read the Sunday paper lazily. It will have to wait until after they leave. But it will be nice to be normal and see some friends again.

What cancer is and isn't

I see lots of different takes on what cancer is and is not. Here is my take:

Cancer is:

• a disease that can kill you.
• a diagnosis with a unimaginable impact. It impact has been compared to PTSD. If you haven't walked the walk, don't even try.
• a life long ailment. Just because you are done treatment, doesn't mean you are home free.
• a gift. I have been known to cynically call it a 'gift that keeps on giving' because the cancer roller coaster really sucks. You never know when it will cause another problem or recurrence.

Cancer is not:

• a color. As soon as pinkification begins, its like putting lipstick on a pig. Other colors included. Don't try to 'paint' cancer.
• a political position. Some politicians have been known to make it their platform.
• a spiritual condition, Some people get more religious which is fine. But some people after diagnosis, make it their calling.
• your life.

A Recovery Day

This has been a chaotic week. I am exhausted. Why you ask? I worked and attempted to be a normal person. Monday I worked until 130 and went for a 90 minute walk with a friend. Tuesday I worked until 130 and went to the gym and then got my hair cut. Wednesday I drove my father to a doctor appointment, worked for 5 hours, picked him back up, and went to the grocery store. Thursday I worked from 8 until 2 and was very tired driving home.

When I got home from work yesterday, I took a nap until dinner. (My husband was happy to let me keep sleeping but the DAMN cat wanted food and wouldn't leave me alone.) Then I got up and cooked and ate dinner and went back to bed.

I did read for a little while but I was asleep by 830 and woke up at 7. I did sort of wake up a couple times in the middle of the night. But mostly slept through it. The DAMN cat again needed me to get up and feed him. So I did get up, feed him, make lunch for my husband, go back to bed.

I do have plans for today but they allow for a lot of down time. My goals are:
- return two library books before they become over due
- get my blood work dealt with
- get Walter's prescriptions dealt with
- make dinner for tonight as my parents are coming over - all of it is made ahead and they will leave early and I can go to bed early again.
- catch up on bad tv watching - the TIVO is pretty full.
- catch up on knitting which bad tv watching
- maybe take a nap
- go to the gym

I will not go to work. I will not run around all day. My errands will take my three stops and except for the time spent at the gym, they will take about 45 minutes.

It was a stressful week at work dealing with technical support issues, new computers, and lots of marketing that is my real job.

Its a recovery day. My body does not handle too much work and running around any more. So it is a recovery day. Herbal tea with my feet up sound good.

Cancerversary?

I want to count in decades, not years. After thyroid cancer in 1980, I was pleased when I could count cancerversaries (if the word did exist back then) in decades, not years. I was 26.5 years out and whoopsie a new cancer diagnosis. Breast cancer that time. I was less than thrilled to start counting over.

But now I can say I am 32.5 years out from thyroid cancer and 6.5 years out from breast cancer. Those are nice numbers.

People quote five year survival rates as if they were Gospel. But they aren't. I learned recently that five year survival rates were started in the 1930s for blood cancers. This timeline/goal quickly spread to other cancers and people started believing them.

But they really aren't true. A couple of examples are both breast cancer and thyroid cancer which can return at any time. So five years is good but not great. Thyroid cancer has been known to recur 30 and 40 years out.

Every person with cancer counts their years differently. Some celebrate their cancerversary with a big celebration and their five year date with as an epic event. For more on the five year dates and cancerversaries (which is just a weird word) you can read this very interesting article on how people celebrate and how we got to where we are. It was shared on FB by a friend who was marking his cancerversary and reaching out to those he knew who were in the same boat. I read it and enjoyed it.

But for now, I'll go back to counting decades and waiting.

PS if you do the math, I am really 37 years old as I stopped counting some time ago.

My inner rebel

I am being a rebel. A rebellious patient indeed. First of all let me state I am taking all my medications properly and know better than to miss any of them - or my body might implode or something.

I have always been a fan of coloring outside the lines. After the first cancer diagnosis I had to relearn to enjoy life but not play in traffic. Now I am sick of being a 'good' patient. My inner rebel needs to kick in for a bit.

So I am rebelling. I am debating which doctor appointments I can/should cancel. I mean I still have doctors that I wonder why I am still seeing. I might just sneakily cancel them and see if anyone notices. I mean why am I still seeing my radiation oncologist?

I know its part of a scheme by the hospital to make sure their cancer patients get seen regularly. Insurance will cover the visits to a radiation oncologist, medical oncologist, surgeon annually. So the hospital spaces them out through out the year to make sure that combined with your PCP you see a doctor every three months. I'm thinking every four months is fine with me.

I am probably not eating enough vegetables. I am probably drinking too much wine. I am stretching myself too thin regularly. But I would rather not go to the doctor and spending my time and money doing other things.

So my inner rebel is allowing me to do this and not feel any guilt.

#IStandWithLisa

In case you missed the ferfuffle in the land of cancer blogging and tweeting, allow me to fill you in. Ann also wrote about this and you can see her opinion over here as well.

Lisa Bonchek Adams has stage IV breast cancer and tweets a lot about her life with cancer. You can follow her @adamslisa on Twitter or her blog. She is living her life as best she can and talks about it on line through tweets and blog posts.

Then along came Emma, who we will call the Idiot for lack of a better term, who wrote for the Guardian and compared tweeting to funeral selfies - really? Hence the name. What she wrote was taken down by the Guardian after a day or two but you can read it here. (See things on the Internet never really go away).

The Idiot complains that Lisa tweets too much. Is that really possible? Some people have conversations and dialogues on Twitter so they might have a high volume of tweets. So what?

And the complaint that of over exposure on twitter becomes a funeral selfie? She is not dead so its not a funeral.

So anyway, the Idiot's column was posted and then many complaints were received and it was taken down because the Guardian said it did not meet their standards.

That was bad enough and then Mr Idiot (her husband) wrote for the New York Times comparing Lisa's fight to I'm not sure what. He did talk about his father's death from cancer in England a few years ago and medical costs but it was fairly pointless in my opinion.

When I first read these articles and the blog posts about them from others in cancer land, I wondered have these two journalism professionals (Mr. and Mrs. Idiot) ever bother to talk to Lisa directly? I do not think so. I could be wrong but their writings were not about Lisa but about her tweets. In professional journalism, isn't it appropriate to contact the subject of their writings? I mean again I could be wrong but in terms of verifying information and all that, isn't that correct?

So I stand with Lisa on this. And Mr and Mrs can go take a hike.

Its Monday morning

I have to go to work. I have nothing interesting to blog about. I did have a nice weekend. Yesterday my husband and I went off for the day to walk on the beach and out for lunch. Saturday I went to the gym and got together with friends. Not the most exciting but enjoyable.

This week my goal is to not get over tired as I try to catch up from missing so much work at the holidays and make a dent in the huge pile on my desk. Last week I worked four days and was exhausted by the end of the week. This week I won't work as long a day each day - maybe 5.5 hours instead of 7. My normal work day is 6.

You may think I am a wimp but if I work too many days or too many hours, I end up exhausted. I'm such a healthy person.

Breast Cancer Burnout?

I saw an article recently on 'Breast Cancer Burnout'. I saved an open tab on m computer for a few days before reading it - ruminating on the topic as I often do. I was waiting to blog about it - I often keep articles on the side until I don't have a topic or feel like writing about it.

I presumed it was about over pinkification and how it overwhelms us with its unending pink perkiness. By the end of, actually by the beginning of October, I couldn't careless about anything breast cancer related that has a pink ribbon on it. Don't get me started on the overwhelming perkiness!

Sometimes I feel that with the pinkness, comes the lipstick that gets put on the pig. A pink ribbon is not going to make breast cancer any 'better' of a disease. It is still and will always be a deadly disease for women and men. Pink can't make it pretty.

The burnout is caused by living with a disease that causes a lifetime of side effects, stressors, and physical and emotional scars.The life-changing event of a breast, or any cancer, diagnosis can cause overwhelming burnout. A patient needs to achieve the so called 'new normal' where they learn to adopt to the new pressures. The unending cancer roller coaster gives you a new twist just when you have settled down on a steady ride for a short time.

I was wrong. (Yes I admit that)

The article was on the burnout cause by a newly diagnosed patient who does not reach out for emotional support to cope with their disease. Yes I can see how burnout would be reached but its not the same. I never would have used the word burnout to describe the emotions of a cancer diagnosis. I would have called it an emotional hell.

Fifty Years Ago today - January 11, 1964

The lid came off the tobacco industry and the surgeon general announced that smoking causes cancer.  Before I jump right in, I'll give you a little background on this.

Back in high school, the precocious 14 year old I was wrote a rebellious English paper on the history of  drug use in the United States. I did research and learned about the opium trade with China and that marijuana was not made illegal until the 1930s. Tobacco had become a cash crop and built up the antebellum southern states. The government stepped in an d started regulating the snake oil salesmen remedies and their contents which led to the beginning of the regulations.

But tobacco smoking in the first half of the 20th century, was thought of as enervating and youthful. At first it was scandalous for women to smoke but then came socially acceptable. Post WWII advertising included the health benefits of smoking. In the medical world smoking was debated as to whether it was health or not. At the beginning of the movie Forrest Gump, the doctor is smoking as he examines the young Forrest - which would not have been unusual at all.

The medical world debated the benefits or carcinogens of tobacco smoking through the 1950's. The first change happened when Readers Digest published in December 1952 a widely read article titled "Cancer by the Carton". This difficult to read copy is only copy of this article I could find but its not long and worth the read. It was written by Roy Norr and condensed from a much longer article in the Christian Herald - of which I can find no trace.

Earlier this week,the Boston Globe provided a detailed article on the impact of the Surgeon General's final report released fifty years ago today and the changes that have happened. Long but definitely worth the read to understand the impact of smoking on American Society. Have you been to a garage sale recently of an older family? How many ashtrays are being sold off? We moved into our 1959 built house and found tucked in a corner coupons for cigarettes dating from the 1970s.

Vintage 1949, Ronald Reagan was famously shown in an ad saying he sends cigarettes to all his friends for the holidays.

Now another recent article talks about how many millions of lives have been saved due to tobacco control. Other benefits of tobacco control include smoke free buildings, restaurants, parks and more.

This was a huge step in reducing cancer rates - especially lung cancer. Take a deep breath of fresh air today and remember how it used to be with smoking everywhere. Yes I am a former smoker and appreciate the non-smoking world now.

Thoughts on alternative cancer treatments

There are lots of alternative cancer treatments out there. They include everything from all natural to the vast pharmaceutical industry conspiracy to get rich on the backs of the average American cancer patient.

When I say alternative I do not refer to things like acupuncture etc which I consider to be additional, holistic options that are added to other treatment protocols. I am referring to things like herbs or supplements or dietary changes to cure cancer. I also believe that everyone is entitled to their own opinion on what should be their treatment protocol. But they need to understand that their choices may not lead to the best outcomes.

When I was first diagnosed I met a woman who was probably in her early 70s. She had decided that she was only going to have surgery and was going to skip the suggested chemotherapy and radiation because it was her time and she did not want to go through it. She had told her children as well and made her decision. She seemed pretty calm about it too. I was a little shocked at the time but then decided that it was her option.

I am also an avid follower (well maybe a little less these days simply because I am busier) of Kris Carr and her Crazy Sexy Cancer. (A tip from me - if you are a woman diagnosed with any kind of cancer, go read her first book and see her movie and you will understand why you need your posse and attitude to get you through it.) She is chock full of wellness and living healthier and is probably close to ten years out from a diagnosis of untreatable cancer. There are all sorts of alternative ideas in her head and on her website - which you should also join. Raw veganism may not be my cup of tea but I admire what she has done for all of us cancer people and I have adopted some of her suggestions.

However, some of the things that I have seen people adopt to treat their cancer just amaze me. I have a friend who decided that she could treat her cancer by taking some herb every day - I can't remember the name but even online it was recommended not to be taken every day but three weeks on and one week off. I don't know how much she was taking it but she has since had a recurrence.

Then there is a case in the  news this week where a woman in Colorado died after injecting Cesium chloride into her breast cancer. Cesium is a chemical element which is actually a metal. It has a radioactive isotope that is used in medical applications. Cesium chloride is a supplement which some proponents say will help cure cancer. But has no medical proof. And it is not supposed to be injected.

Finally, if you adopt an alternative treatment instead of a traditional treatment protocol for your cancer, I do not think you should be surprised if your insurance doesn't cover it and it will not cover additional tests and scans to see if your disease has progressed. Insurance companies have protocols based on proven treatment protocols. For example, the standard to treat that cancer is a CT scan followed by six rounds of whatever chemotherapy infusion and then follow with another CT scan to see how the cancer has responded to treatment. But if you skip the treatment they cover, they aren't going to pay for another CT scan.

Its your body and your choice but you need to remember you have to accept the outcome of your decisions.

An ethical dilemma

I am an honest person. I hate coercement. I am feeling pressured to do something that I believe is wrong.

Here is the dilemma. I ordered a gift for my nephew on Amazon from an Amazon market place seller. It arrived broken - wires were not connected  - not that it was smashed in transit. My brother tried to fix it. My nephew really liked it. They gave it back to me.

I was asked by Amazon to review my order and I gave it one star and said I was returning it because it didn't work.

I filed a claim with the seller who didn't respond in the three to five days or whatever time frame Amazon specifies. So I upgraded it to a complaint at Amazon where I received a quick reply and a promise to refund my money if I don't hear from the seller.

Yesterday when I came home from work I had an email telling me to modify my rating. Then I received a phone call telling me once I modify my rating they will give me a refund and I do not need to return the product. However they cannot issue a refund while feedback is present. And they did not leave their name.

So they want me to remove the negative rating and will issue me a refund. That way they get to keep a clean record with Amazon - which is important fro sellers because no one wants to buy products from a seller with unresolved issues.

I could just  take a refund from Amazon and ignore them. I could change my review (which I prefer not to do) and get the refund.

What would you do? The honest route is for the seller give me labels to ship back the product and then to issue me a refund.

Fibromyalgia and pain

These days  my fibromyalgia has been better under control. I can also often tell the difference between fibro pain, RA pain, and I stubbed my toe pain. This is thanks to Lyrica with its weight gain side effect (and ice cream after dinner last night).

However, this is not always the case. Fibro has this lovely habit of, for absolutely no reason whatsoever - or maybe I breathed, all of a sudden I am experiencing bone deep pain in my body.

Yesterday I was at the dentist getting my teeth cleaned and all of a sudden I experienced pain down the right side of my back - probably a solid 9 on that stupid scale. It went from my collar bone down to my waist - an excruciating, teeth grinding pain that lasted about 30 seconds.The hygienist became concerned with my facial expression. She stopped working and asked if there was anything she could do - glass of water, sit up the chair, etc. I thanked her and said no. Her reply was 'its just letting you know its still there?' My reply was yes.

That is what fibromyalgia does, among other things. Sometimes it flares up like that in a body part - usually my back or leg or arm - sometimes at a joint and sometimes not. And there is absolutely nothing anyone can do. Unless someone invents the miracle drug that will relieve a 30 second bout of pain anytime soon.

But it is better than before which is a good thing.

John Hopkins did not discover a dietary cure for cancer

There are a couple of hoax emails going around that have gotten the folks over at Johns Hopkins riled up enough to write a rebuttal.

I do find this humorous in some ways. How many emails have you gotten offering you a cure for anything you want and more. Either they are based on some known item that you just need to eat more/less of or not something like not cook in saran wrap. Or they refer you to someone far away with a really long name who promises you an elixir or prayer or something else that will cure you.

There are a few things they all have in common:

• Typographical errors and misspellings.
• Bad English
• Over promising

Back in the 19th century we had quack doctors who went around the country selling their cure alls. Now they don't need the horse and buggy, they just need the internet and your email address. But just remember if its too good to be true, it probably is. Use your delete button.

Back to Reality Monday

Its back to reality Monday around here. We had to set the alarm clock - just say we get up early and move slowly.

I haven't been to work since Christmas Eve. I meant to go in last Thursday and Friday but a tiny snowstorm prevented that. The last two weeks have been a whirlwind of holidays, house guests, cooking, chaos, movies, sleeping late, and not a single doctor appointment.

Back to reality starts this morning. I work Monday through Thursday this week for as late as I can, which might be 3pm. I have problems with a full work day and four days in a row is a stretch for me. Tomorrow I have a dentist appointment - what fun. I hope to make it to the gym three times this week. I also have to go for blood work at some point in the next few days.

Normal life returns. No more sleeping late, darn. We even got the cat to trained to request breakfast at 8am instead of 5am.

Resolutions for 2014

I suppose it is time to come up with some New Year's resolutions. Since I doubt I will come up with a cure for cancer on my own, I will think hard and find some others.

1. Be healthy - this will be harder for me because my body does not seem to cooperate. Most people will have a much easier time than me. I should probably rephrase that as not to develop any new ailments or have my current ailments get any worse. Ha! As if that will happen.
2. Lose weight. I really need to as I have never been so fat in my life. But as life would have it, I am back on Lyrica for my fibromyalgia and it comes with that lovely weight gain side effect. I need some new medications with the side effect of weight LOSS.
3. Exercise. Not more exercise but still exercise. I go to the gym three days a week. I can't go more because I end up in pain. I usually walk with a friend once a week as well but we haven't connected recently. Exercise really helps me keep my ailments in check.
4. Eat better.  This means less fattening food. I try to eat well but breakfast is one thing. I just had a fat free Chobani vanilla Greek yogurt with a handful of wheat Chex on top. I should add a banana to that. But then there are snacks and things (like the evil snack box at work and coworkers who bring in doughnuts and leave them in my view in the kitchen). We'll see how the rest of the day.
5. Stop spending money on stuff I do not need. I can go to stores and end up buying stuff I really do not need. I'm not a shopaholic as a rule but I feel I won too much crap that I don't need. I haven't been buying clothes because I want to lose weight and fit into the clothes I already own.
6. Learn some new knitting techniques - like how to make a hat using double pointed needles, Entrelac knitting which I just found about it and it looks really cool.

I think that's about it. There are probably somethings I have forgotten or just can't remember due to chemo brain/fibro fog or whatever the hell it is but that's my list for 2014.

I am in a cranky mood

I don't know if cranky is the right word. I feel guilt ridden and stressed for not getting into work when I said I would. I hate not keeping my promises on when I would get things done. There was a blizzard which is a good reason but I have a huge pile of work to do and am behind. It didn't help that I was sick before Christmas as well and missed time. I need to get into work and get a lot done before I will feel better. Its frustrating.

I feel stuck inside because of the little tiny blizzard. I went to go shovel out the front walk just to get outside yesterday. I told my husband I was going to brush the snow off the cars with a broom but I also grabbed a shovel to clear the front walk. Ten minutes and my back hurt and I was back inside for the day with an ice pack.

A friend was talking about snow shoeing on Sunday. I can't really snow shoe. I tried last winter. I walked up and down our street (which has five houses total) to take pictures of the snow and that was enough. I used to be able to snow shoe.

She thought I should be able to snow shoe because I can walk. But the weight of the snow shoes on my back are very different. (She means well but is also someone who keeps asking when my back will be better.) See I am cranky. I'm complaining about my friends. I don't usually do that but I am aggravated, cranky, guilt ridden, stress filled, etc.

I feel fat because I have eaten all sorts of bad things through the holidays. Everything from big family meals with dessert to candies and chocolates and meals out. The scale is saying bad things to me. I was trying to be very good about eating before the holidays but I blew all that. I am back on Lyrica which is helping my fibromyalgia but has that lovely weight gain side effect.

Further proof of my crankiness is that I read this blog post on one week of junk food could damage your memory and left a cranky comment. (I went back and deleted the comment because I decided it was rude.) At this point in my current mood, I couldn't care less about eating healthy.

But today I am doing things differently. I am going to the gym this morning. My husband and I are going Christmas shopping this afternoon - looking for decorations on sale. We are having a healthy stir fry dinner tonight with rice noodles and chicken. Without dessert. Tomorrow we will go see The Hobbit part 2 in 3D. Quality time  with my husband always makes me feel better.

Breast cancer news on my mind

Every so often, I end up with a browser full of open tabs on stories that interest me. Today I have three tabs open on breast cancer stories that I might as well blog about before either my browser crashes or I close it and lose all my tabs or I forget and close the tabs and forget about the stories. Three days later I'll say to myself 'what the hell happened to that story I meant to blog about?'

I'm so smart I could do this do all the time - lose the stories I wanted to blog about. Its my high level of technical skills that I have. Anyway here we go:

1. There is a new injection developed in the UK which would prevent 75% of the cases of DCIS from spreading. I find this interesting on two levels. First, "The same approach could be used to tackle other cancers, as well as other diseases caused by genetic flaws." And "Much more research is needed but, eventually, women with DCIS or genes that put them at high risk of breast cancer could be given a six-monthly jab to keep the disease at bay."

Positive progress? Yes!

2. More progress is that genomic tests are being developed to show which women will respond to chemotherapy for breast cancer. Very helpful in the world of overtreatment.

"In particular, the study tested two prominent genomic tests – MammaPrint and BluePrint – in order to ascertain if these tests indeed can offer better information about the molecular subtype of a woman’s breast cancer. The conclusion of the study revealed that, “when patients’ tumors were analyzed with these tests, 24% of the tumors were reclassified to a more accurate type when compared to traditional lab tests,” ....

Dr. Beitsch characterized the findings are significant, that they could improve the treatment approach for breast cancer: “These results should be encouraging to patients and their physicians. Physicians are now better able to determine whether a woman has the type of cancer that will respond to chemotherapy, or whether she can safely be treated with surgery and hormonal treatment alone.”"

More progress in my book!

3. However a less than positive article talks about how in England, the land of the National Health Service, that 450 deaths from breast cancer could be saved each year if the socio-economic factors that exist between the most affluent women and the 'most deprived' (what a lovely term) were removed. What this says to me is that the NHS isn't that great, reinforcing my previous opinions, if this disparity exists. I believe the affluent in England do go to private doctors and dentists to get the better care than the general population....

4. Finally, the downer article of the day. Women who are diagnosed with breast cancer under 50 (like me) are more likely to develop a second cancer in their liver or reproductive organs. One argument on this would be that younger women will live longer after diagnosis and then have more years to develop another cancer. But blah, blah, blah.

Now I can clear out my browser tabs and read more interesting articles - like how much snow we got and how cold it is out side. Can you say -20F windchills and a foot or so of new snow?

Cancer Immunotherapy

That's a mouthful. But Science Magazine has named Cancer Immunotherapy as their breakthrough for the year. So what exactly is that?

"“Immunotherapy marks an entirely different way of treating cancer — by targeting the immune system, not the tumor itself,” Science said... Based on the idea that the immune system can be trained to attack tumors in the same way that it targets infectious agents, cancer immunotherapy exploits the ability to harness different types of immune cells circulating in the body."

Researchers have already made some progress with this way of thinking with both melanoma and leukemia. They have plans in the works for progress for lymphoma and prostate cancer with trials set to begin soon.

From the patient's point of view, I think a new way of looking at cancer and treating it is real progress, instead of more of the same.