Friday, July 31, 2015

Going for the big bucks instead of focusing on benefits to patients

Here's another thought that the pharmaceutical industry are going after the big bucks and not looking after the interests of the patients. A new study proposes that companies are focusing on developing late stage cancer drugs because the time to market (and financial return) is shorter than in developing preventive or early stage cancer drugs. I found this little tidbit online:

'Pharmaceutical companies are overlooking drugs to prevent cancer and treat early-stage tumors because they take longer and cost more to develop than drugs for late-stage cancers, according to a new MIT study.

“There’s dramatically more investments in the late-stage treatments than there is in stage one or stage two,” said Benjamin Roin, a professor at MIT and a co-author of the study. “There’s shockingly little investment in prevention.”

The study, published in American Economic Review, found that low investment in early-stage cancer drugs accounted for a loss of 890,000 life-years — additional years cancer patients would have lived — in just 2003.

The culprit, the authors say, is how regulators treat the vital exclusivity periods for new drugs. Because the exclusivity period begins when the patent is filed — not when it hits the market — drugs that take less time in clinical trials become more valuable, Roin said. Trials for cancer drugs targeting early-stage tumors and prevention can take significantly longer to show results, he said.

“It creates incentives to focus on the drugs you can get on the market quickly, as opposed to drugs that take longer to develop,” Roin said. “The patent system is penalizing companies if they take longer to develop stuff and providing bigger rewards if they develop stuff that gets to the market fast.”'

Perhaps they need to look at their business model instead of their shareholders. I mean aren't pharmaceutical companies supposed to be developing medications to help people stay alive and feel good? No wait, they must be out to make big bucks because if they wait for people to be sick and dependent on their meds, then they can rake in the billions. And they can charge more for these 'life extending' drugs. That way their shareholders will be happy. (I am really sick of shareholders after working for publicly traded companies.) Insert cynicism here please.

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This is taken from the beginning of the study itself (Download pdf of study results here.):

"Over the last five years, eight new drugs have been approved to treat lung cancer, the leading cause of US cancer deaths.1 All eight drugs targeted patients with the most advanced form of lung cancer, and were approved on the basis of evidence that the drugs generated incremental improvements in survival. A well-known example is Genentech’s drug Avastin, which was estimated to extend the life of late-stage lung cancer patients from 10.3 months to 12.3 months.2 In contrast, no drug has ever been approved to prevent lung cancer, and only six drugs have ever been approved to prevent any type of cancer. While this pattern could solely reflect market demand or scientific challenges, in this paper we investigate an alternative hypothesis: private firms may invest more in late-stage cancer drugs—and too little in early-stage cancer and cancer prevention drugs—because late-stage cancer drugs can be brought to market comparatively quickly, whereas drugs to treat early-stage cancer and to prevent cancer require a much longer time to bring to market. More broadly stated, we investigate whether private firms differentially underinvest in long-term research, by which we mean technologies with long time lags between the initial spark of an idea and the availability of a commercially viable product. We document evidence that such underinvestment is quantitatively significant in an important context—treatments for cancer—and analyze potential policy responses."

Thursday, July 30, 2015

I'm so smart I could diagnose myself

Yesterday will probably go down as one of the not so greatest days in my life. Why? Because I pretended I was a healthy person. And it didn't end up so well.

Allow me to provide some of the story. We had to dig up a lot of the plants in our garden because our retaining walls are collapsing and we have to pay big bucks to a mason to fix them. It has been very hot and dry here for the past few weeks. 90s for the last few days even - which rarely happens in Boston. My poor plants which should be in the ground and in the shade are in pots in the back yard in the hot sun.

I noticed yesterday that some of them were very dry and wanted to water them. The spigot in the back yard was put up by giants and I have to stand on something to reach it. I pulled out my usually little 12" high little table to stand on. As I reached up, the table collapsed and I felt my knee bend sideways. That was a very bad moment. No one was home but the mason's assistant but he came to help me get back to the front door and inside. I could hobble.

But because of my extensive medical background, I knew exactly what to do. I went to the freezer and got an ice pack. Then I picked up the phone and called my doctor's office. I knew I needed an x-ray and possibly more. They suggested I go to the walk in clinic last evening but I declined and asked for an appointment today instead. But as I sat with my knee elevated it really started to hurt (even through all my RA/fibromyalgia meds) and I asked my husband to take me to the walk in clinic.

I saw a doctor and got an x-ray as I expected. The bones look fine (as I expected) but the doctor thinks there is ligament/muscle damage (as I also thought) and referred me to an orthopedic doctor. This is exactly as I assumed would happen. I need to call today if I do not hear from them by noon to get to see a knee doctor. (Maybe I should have just called my knee doctor first -  yes I have a knee doctor, and an ankle doctor, and many other specialists.)
They did send me home with a knee immobilizer, a totally worthless piece of equipment as it forces me to overwork my hip (and my bursitis) and causes more pain than is in my knee. They also recommended crutches or a cane, both of which I declined. But I did ask my husband to find one of the crutches in the basement as it turns out I need it for stability and weight bearing.

So one moment of pretending I was healthy allowed me to sprawl on the backyard in pain. The good side? I really need a positive here. I have a reason to sit around on my butt all day (except going to the dr and possibly getting my nails done) with an ice pack on my knee during this 90 degree weather. I am not discussing the downside at this point because I am pretending it doesn't exist. Denial? Yes. But I did know what to do and what I needed medically right away. 

Wednesday, July 29, 2015

Chronic Illness Truths

I met a woman named Julie on Sunday. I was giving away yarn from my stash that I will never use and she knits hats for homeless people. She also has health issues and understands what it is like to change your life to accommodate your ailments.

Anyway, Julie is writing an anthology of stories of people who are living with chronic illnesses and is looking for people to contribute their story by September 15, 2015. You can find out more on her Tumblr site here.

I find the idea of me writing about life with chronic illnesses intriguing. I have written a lot about life with cancer and my cancers are probably more treated as chronic and not terminal illnesses. They are also not acute illnesses meaning they won't go away. My cancers are symptomless, for now but they could always return, which just adds to the fun.

Life with a chronic illness which is symptomatic is very different than one that doesn't cause a lot of pain. My life with degenerating disks started to cause me some pain in my back and hips. The my life with RA and fibromyalgia is loads more fun. I have pain in many more places and it has changed my ability to work more hours and my ability to get a good night's sleep, walk any distances, stand for more than a few minutes, and all sorts of basic things in life.

I think I will write something for Julie's anthology. If any of you feel the need, check her site and write something yourself.

Tuesday, July 28, 2015

Do you know whats in your medical records?

Do you ever look at your medical record? The hospital I go to just switched to a new system with an electronic patient portal. I can now go in and check it regularly. Since its been active for less than six months, its needs some more data but I can still see a lot of information including visit notes from doctors, test results, etc.

In recent years, I would go get printed out copies of test results anytime I wanted. At one point I became obsessed with my blood counts and created a spreadsheet of them and then found all my previous blood tests and now have records going back to 1998. And no, my red blood counts have not recovered since chemo and have remained low.

The other day the Wall Street Journal ran an article about taking charge of your medical records. And it astounds me how few people actually look at their medical records regularly.
This is important people! Medical errors can be fatal. I know I am allergic to benadryl and prednisone so if I have any kind of reaction, I need to make it clear they cannot treatment with either - and both are commonly used to treat reactions. Never mind the fact that I am also allergic to the '-cillins';  penicillin, amoxicillin, etc.

Knowledge is power. If your doctors are not able to electronically access your records, you need to make sure you keep them up to date with all your information including prescriptions, test results, procedures, and other doctor appointments.

Monday, July 27, 2015

Cancer Drug Costs

These prices are out of control. Upwards of $80,000 per patient per year or treatment protocol. Yes insurance companies pay the bulk of the costs but patients are hit with 20-30% out of pocket co-payments. Since the average family income in the US is $52,000, how are we supposed to pay for this? Can you only beat cancer if you are rich? That really creates a chasm between the 'haves' and 'have nots'. And the current insurance system cannot afford them either.

There is a new call by a group of doctors, oncologists, to get a better control of the pricing set by the drug manufacturers. This was announced in a recent issue of Proceedings published by the Mayo Clinic. It was also written about in Time Magazine and there is a petition on

They offer a substantive set of arguments for the pricing changes that are definitely worth the read. They also discuss the high costs of developing drugs that are borne by the manufacturers and how that should be changed as well. They are not just firing at the drug manufacturers but providing multiple recommendations:

"Among the recommendations are allowing Medicare to negotiate prices, permitting cancer drug imports for individual patients, and passing laws to keep drug companies from delaying access to generic drugs."

My only complaint on this issue is that they focus on cancer drugs and not on the other high priced drugs out there. In my opinion, the changes should effect all drugs.

Please go read the articles and sign the petition.

Sunday, July 26, 2015

Wash Your Hands

What is the single most important easy thing you can do to improve your health? Wash your hands. Often.

Now that I have rheumatoid arthritis and am on immune suppressing drugs that make me much more susceptible to colds and infections, I am becoming a germaphobe. I will not alter my lifestyle and avoid crowds, malls, movie theaters, and other groups of people. Nor do I believe in those stupid hand sanitizers which help create super bugs which are resistant to treatment.

But I do believe in hand washing. When I go to the gym, I wash my hands before I work out and I wash my hands as soon as I am done with my work out. And I try to remember to wash my hands when I come home from being out. As well as when cooking, before eating, etc.

Friday at the gym I was speaking with a woman as she was washing her hands after working out. She said that since she started washing her hands regularly, she has had fewer colds herself.

It amazes me how many people do not wash their hands, even after using the bathroom. I am particularly disgusted by people who do not wash their hands after using the bathroom and then use the gym or eat in a restaurant or other places. Speaking of restaurants, menus are disgustingly germ covered.

You can try all kinds of arguments with me about washing your hands and how it might dry out your skins or any other silly reason. The real reason for washing your hands is to clean germs (and dirt) off of them so you don't carry them around with you and on to other places. You can always put lotion on your hands if you are concerned about dry skin.

I was quite pleased to read this article about hospitals do to prevent infections and the top item on the list was hand washing.

If you get home at the end of the day and can't remember washing your hands, do yourself a favor and wash them.

Saturday, July 25, 2015

Why people stop blogging

This morning I actually took a look at the back end of my blog and the list of blogs I follow. There was probably over 100. I went through the list and cleared out a bunch of them who either I am no longer interested in or are no longer blogging.

Obviously there are two reasons people stop blogging - either they just decide to stop or they are no longer with us, unfortunately. The second group are the ones that sadden me - lost friends.

But the first group intrigues me. Why do they stop blogging? Most of the blogs I follow are health related blogs, many of them on breast or thyroid cancer, arthritis, fibromyalgia, or other lifelong ailments. So why do these people stop blogging? Its not like they are cured. But maybe they think they are. Or maybe they no longer have coping issues?

This is why I am intrigued. I think of blogging as a coping/venting tool for many. That's what it is for me, after 8+ years of blogging. My health is constantly evolving with new issues cropping up periodically (but I really wouldn't mind if I didn't have any more issues thank you) so I keep coping and keep blogging. Do these other former bloggers non longer feel the need?

The emotional impact of an ailment may dim over time and perhaps they get a false sense of security and assume they will be fine or are able to work past it and get on with their lives. Or maybe I am just really jealous that they are better and I am not? Damn.

Friday, July 24, 2015

That bucket list thing

I never had heard of a bucket list before the movie of the same name. I did like the movie and need an assistant named Thomas to help me out sometimes. But do I need a bucket list? I am on the fence on this.

But here is this young woman in Wales who is terminally ill with breast cancer and was given 3-6 months to live, more than six months ago. She decided she was going to create a bucket list with the help of other terminally ill people. She is asking for help in figuring out what to put in her bucket list.

Some of them are:
  • running naked down a busy street
  • trying out her coffin dressed as Wonder Woman
  • knocking over displays in stores
  • riding in a race car
I would probably try those except the running part. I'm not that good at running these days.

What suggestions do I have for her?
  • borrowing library books with no intentions of returning them.
  • crap I can't think of anything else. 

Maybe I don't want a bucket list. But anyway. Go watch Rowena try all sorts of things and give her your suggestions if you are terminally ill.

You can read about her here.
And you can watch her here.

Thursday, July 23, 2015

A little humor this morning.

I am going through a phase where my butt is dragging around because of my stupid RA and adjusting medication levels. I wasn't sure if I would be up for going to work yesterday or today. I did make it through yesterday morning and since I am up, I will go to work for a bit, probably just the morning again.
I need humor to make it through the day.
And I have to ask the question, which would be worse: being allergic to a favorite food or item or having cancer? At this point I am actually leaning toward the allergy thing. If I became allergic to red wine right now, that would really suck.

Wednesday, July 22, 2015

Cancer language

I recently read about more offensive language of cancer. Where do people get these ideas?

I know then President Nixon declared a war on cancer in the early 1970s. Fine, have your war on cancer but sending in armies of scientists and doctors to research it to death and kill it off. But the people with cancer? We are not at war, we just want to stay alive.

I really dislike the S-word. Why? Because its a label. I am a person; I am not a label. You can describe me by saying words like short, slightly flabby, or something else, or even smart or other nice words. You can even say slightly cranky or pushy or assertive. You can also say I am a patient and a frequent flier at my local hospital. But I am not a survivor. All I have survived is a billion or so doctor's appointments and medical misadventures. Okay, you can say I have survived driving in metropolitan Boston for the last few decades. Sometimes that's a daily demolition derby.

I didn't survive cancer. With cancer, you can achieve remission, partial remission, or have NED (No Evidence of Disease) status (which is me currently). But you are never told you are cured. If you are told you are cured your doctor must be stupid a miracle worker because there is no cure for cancer. Well okay, there are a few cancers that can be cured but definitely not all. You will spend the rest of your life being 'best buds' with your oncologist, endocrinologist, or so other specialist.

Now the CDC in its infinite wisdom as a part of our government has launched a new program called Bring Your Brave, which is a breast cancer awareness program for young women. Really? I find it almost as offensive as the boobies programs that are out there. Bring my brave what? My brave face - the one I wear when my doctor is about to give me bad news or I am heading off for another surgery? My brave suit of armor when I have to deal with a bunch of nitwits somewhere?

And why does it only focus on breast cancer? It would be much better to have a cancer awareness program for all types of cancer for younger adults. Most do not expect to be diagnosed with cancer and have their world upside down.

For any other ailment, you are a patient or a person. This patient has a complication with their cardiac surgery. Or 'this person has an ulcer', or 'congestive heart failure', or 'strep throat'. Why can't we say this patient has stage III pancreatic cancer? Why does it have to be 'this person is fighting metastatic brain cancer' or  this patient is a breast cancer survivor'?

These war words are the obscenities of the cancer world. Fix your vocabulary people! Thank you. 

Tuesday, July 21, 2015

Do I have five hours a week?

Based on new research, I could cut my post menopausal breast cancer risk by exercising five hours each week. Hmmm.... Well I do 3 hours of cardio and then probably another 2 hours of weights and stretching each week. Does that count?

Oh, wait, I already had breast cancer. Does that mean I can stop exercising? Probably not. I am sure there is another bit of research out there that tells me I need to keep exercising.

There is that long term deflabbification project I keep babbling about. Damn.

And why am I so fat if I keep exercising????

Monday, July 20, 2015

Progesterone too?

So I have always wondered, what about progesterone in breast cancer treatment. A big part of your breast cancer diagnosis is its hormone status. My breast cancer was the most common type - ER+/PR+/Her2-. That translates to estrogen and progesterone positive and her2 negative.

This determines a big part of your treatment. If you are estrogen positive you are treated with Tamoxifen and/or one of the aromatase inhibitors. If you are Her2 positive, you can receive Herceptin. But no one ever said anything about progesterone. I always wondered why it was part of the diagnosis if it didn't affect treatment. I mean why bother?

But now things have changed. New research has found a way to control progesterone as well:

"Cancers with progesterone receptors are known for growing more slowly, however scientists have not been able to exploit this fact until they discovered the way they interact with estrogen, which causes the growth of some tumors"

"In the new study, researchers found that progesterone receptors interact with estrogen receptors in the tumor, changing their behavior and slowing the tumor's growth."

"Roughly 75 percent of women with breast cancer have tumors with the estrogen receptor, and 75 percent of those tumors also have progesterone receptors -- suggesting more than half of these patients could benefit if the treatment is shown to be successful."

And the outcome should be a cheap and safe treatment option.I'm all for this.

Sunday, July 19, 2015

My life

Apparently I need more sleep than I thought. This may be why I had a bad week last week.  I was cranky. I was tired. My RA was bothering me. Work was stressful. And made me cranky. I don't think I got through a full work out at the gym all week.

I was very tired by Friday night. Then Saturday I did a lot of nothing (well I went to a few garage sales) and then took a 3.5 hour nap. Then I went to bed at 10 and slept for 8 hours. I could take another nap today. I probably will.

I will work harder at keeping up on sleep this week. I might even fit in taking a few naps.

This is my life. I have to fit in naps. I have to take it easy. Regularly. I have to have naps. I have to sit around with my feet up.

Saturday, July 18, 2015

Over- and Under-Diagnosis and Treatment of Breast Cancer

I found this interesting discussion on over and under diagnosis of breast cancer and how to avoid it. Its definitely worth the read.

The big take away I found in the article is that the best way to avoid overdiagnosis is to get screening done at a breast center where the radiologists read mammograms daily. Through their jobs, they see many more breast images than other radiologists who are not as specialized and much more apt to correctly diagnose breast cancer.

Also, better education of patients and oncologists will also help with preventing over-treatment. Often the first reaction at a cancer diagnosis is 'get rid of it now and make sure it doesn't come back!' Fear takes over and the reaction of a patient goes instantly to get rid of it.

But maybe if the patient takes time to educate themselves on treatment possibilities the fear can be controlled. And the doctor is educated enough to provide the support to help the patient make the best choices and not the impulsive choices. Then the chance of over treatment can be reduced.

I think that this issue of over treatment and over diagnosis for many ailments needs more awareness and focus. We need better trained medical personnel who are able to better read screening images and provide better diagnoses. We also need additional training for medical personnel to help patients make better decisions. Finally we need more information available for patients to reduce the fear at diagnosis so they are able to make better decisions.

Friday, July 17, 2015

Cutting the last cord

What happens after all the treatment? Cancer patients are diagnosed and then get all kinds of care to make sure it doesn't come back (which is our greatest fear).

At the end of treatment, all of a sudden this constant care by all kinds of medical people to check you over and reassure you that it hasn't come back comes to a screeching halt. At this point, the doctors all say come back in 3, 6, or 12 months and we will check again. And the patient says 'whhhaaattt? But what if it comes back? Who will know?'

This is the most frequent time for patients to wig out and require emotional support from a support group or therapist to make sure they don't go off the deep end. It is a very stressful time. You are alone with the little thoughts in the middle of the night - what if it comes back?

With breast cancer, its a little different. You get surgery and chemotherapy. Medical personnel is all around to be aware of a single sneeze. Then some get radiation as well where you are seen daily for weeks on end. At the end of this time most go on to hormonal therapy - Tamoxifen, Femara, Aromasin, or the other one who's name I can't remember right now. That lasts for five to ten years. And then finally you are on your own and you see your oncologist maybe once a year.

I went through this a long time ago when I had thyroid cancer. At the end of about six months of doctor appointments I was left to cope on my own. And I can tell you in some ways it really sucked big time. And left me with some strong emotional issues that took a long time to recover from.

When I was diagnosed with breast cancer, I told myself I was not going to let cancer suck any happiness out of my life and went to support groups before my first surgery. Then I got a therapist at the end of radiation as well. But I was still on hormonal medication - 2 years of Tamoxifen and then Femara.

Yesterday I went to see my oncologist and she said it was time for me to end Femara - that last little pill to help prevent it from coming back. She said she had mentioned this at my visit last year but since I can't remember last week, never mind last year, I had no memory of this. 

Basically while there is lots of data on the benefits of staying on Tamoxifen for ten years there is no research now to prove there is any benefit to staying on Femara or other aromatase inhibitors for longer than five years. There are ongoing studies on this but no results yet. This research will take years because they are following women after five years of Femara.

My oncologist brought up the joint pain issues I have. She said that one of the side effects of Femara was joint pain. I couldn't tell you if I am experiencing this or not. All I can remember is after chemo, I went on Tamoxifen and started feeling better because I wasn't in chemo any more. Then after two years of Tamoxifen I went on Femara and again started feeling better again because the side effects of Tamoxifen can be pretty bad. But I have no idea how I would feel not being on Femara because pre-breast cancer I was a much healthier person.

So now the plan is I am off Femara for now through Labor Day. That should give enough time for it to leave my system and see if I have any fewer pains or if I get too worried. My oncologist brought up the stress of recurrence fears, not me. She said at that time, I can always decide to go back on it if I want.

I am happy to take one less pill each day. But it has been the last stand against recurrence. So now I have to learn to live without the benefits of anything to prevent recurrence. For now, I think I can live with this. But if my mind starts playing tricks on me with this recurrence crap, I may wimp out and decide to go back on it.
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