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."

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 usual 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. 

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.

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.

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 Change.org.

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.

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.

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.

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.

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.

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. 

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????

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.

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.

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.

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.

Breast cancer and flabbiness

I am not sure this article tells me that much but it did try to figure out if breast cancer and its treatment cause weight gain. It discusses the results of a recent study that was recently published.

So breast cancer increases in incidence right about the same age as menopause. Therefore there has been some confusion if its menopause or cancer and its treatment that cause weight gain. But this article did nothing to help me.

First of all it looked at an average weight gain of 4 lbs for women with breast cancer who did not have chemo and of 11 lbs for women who received  chemotherapy. 4 lbs or 11 lbs? That's nothing. I am more concerned about the 20 or 30 lbs weight gains. I know women who said they gained 5-10 lbs during treatment and then lost them. Those of us who gained more, even if active during treatment, have many more problems losing weight.

The real concern is that weight gain can have longer term health risks.

But the study promises to follow up with the women over a longer period of time. I would like to see a study about the women who gain 20 lbs or more during cancer treatment and ensuing health issues. No one ever seems to care what I think. Or to include me in research because I have too many other issues and would skew their data.

What I needed

I originally was going to work yesterday, today and tomorrow this week. But because of office renovations and some home improvement that was supposed to start yesterday, I changed my schedule to Wednesday, Thursday, Friday with Monday and Tuesday at home. (Actually my boss told me Friday not to come in until Wednesday because of the office renovations. And then he called me yesterday to see if I was coming in because he needed me for something. But that's another story.)

Monday I was moderately productive. I went to the gym. I got some work done. I cleaned up the house a bit (for the cleaning lady).

Yesterday, Tuesday, I thought about doing a lot of different things. This is what I did accomplish. I was very lazy.

• I watched probably six episodes of Criminal Minds (the first six to be precise).
• I got some knitting done. I have a craft show in September and want to be sure I have enough non-cold weather items done.
• I sat on the couch and played with the cats.
• I talked to the mason when he showed up.
• I cooked dinner.
• I made a big mess.

But I did nothing productive otherwise. I didn't do any gardening. I didn't go for a walk. I didn't run errands. I barely left the house. And I am glad I did. I was home by myself all day with the cats and enjoyed it. Except for the big mess. Here it is.

I was trying to find some yarn and organize it. And there is more yarn in the basement.

This will take some thought

The other day I had a really bad idea and got on the scale. We will just say it didn't make me feel happy. In fact, I was rather upset. I have no idea why the scale went so much in the wrong direction. We will just say it incentivized me to take a look at my eating habits and figure out some strategies.

So I really need to lose weight. I get it. I'm working on it. Or so I thought.

And then I read this article: Weight Loss Predicts Mortality in Rheumatoid Arthritis: Weight loss is a strong predictor of mortality in patients with rheumatoid arthritis, according to a study published online June 26 in Arthritis & Rheumatology.

Or basically the more you lose weight when you have arthritis, the more you increase your risk of mortality with RA. That isn't really helpful news for me at all. My inner size 8 is calling me. I'll have to think about this one for a while.

I am sure any doctor will tell me that I should lose weight for a variety of reasons. All doctors are skinny these days. Skinny people are healthier (usually). I am not a healthy person and now this is telling me I shouldn't lose weight because it will increase my mortality chances. Great.

This isn't really good news. Or maybe I really need to stop reading the latest medical news. 

Keeping your sense of humor through it all

One of the key traits to help cope with your ailments is keeping your sense of humor through it all. If you lose your sense of humor, it will become so much harder.

I was reminded of this by this comedian who was treated at Dana Farber and then had a special show for his caregivers at the hospital.
I constantly crack jokes with the medical personnel I deal with. I have to. Otherwise, it would be too depressing. If I cannot see the humor in the number of punctures I get from regular blood tests, I might start oozing blood out all the needle holes.

• I need a frequent parker discount at the hospital's parking lot.
• All the johnnies are designed by Dr. Seymour Buttz. (Sound it out and you will get it.)
• Personally I wished they had ramps at hospitals so I could go on wheelchair rides like Curious George did.

Okay, my sense of humor is not fully developed this morning. Its Monday morning. I have chemo brain and fibro fog.

But I hope you get my point. Never lose your sense of humor. Life would be boring with out it. And cancer would suck even more.

A long sad day

Yesterday I drove my parents to the memorial service for a neighbor from my childhood. It was a 330 mile round trip. By the time I got home it was nearly 9pm and 12 hours from when I left the house. I don't travel so well these days so I made a point of getting a lot of sleep last night.

Susan died last fall from breast cancer, six weeks after her diagnosis. She had ignored pain in her ribs last spring because she thought she had strained something. She was a farmer and very active. Also her tumor was so far back and so close to  her ribs, it may not have shown up on a mammogram. It wasn't until she started feeling many more symptoms did she end up in the emergency room and got some very bad news.

Her mother was also diagnosed with early stage breast cancer in early 2014. So in speaking with her two remaining sisters, I made a point of telling them both they should consider themselves high risk for breast cancer. They agreed and said they had already spoken to their doctors about it.

It was a nice memorial service and internment of her ashes followed by a family gathering at their house on the ocean. I got to catch up with both her sisters, mother, and another friend from 4-H back in the 1960s.

I also met a woman who has the same rheumatologist as me. Her rheumatoid was more advanced than mine and she has had six joints replaced - both ankles, knee, and hips. I can't remember them all. She has refused to go on to a biologic and has been on methotrexate for 14 years. She was in a wheelchair because of her recent surgeries. I never want to be in a wheel chair. Another sad reminder of the implications of my ailments.

Between a memorial service, a long drive, and seeing the implications of rheumatoid. It had an emotional as well as a physical toll. I need a day off today but have too much to do.

Okay, so what am I supposed to do?

The FDA issued a warning the other day about NSAIDs. They strengthened their earlier warnings on NSAIDs saying they can increase the risk of heart attacks or strokes. I've been on a prescription NSAID for about 4 years. Should I be concerned?

The official warning from the FDA says:

"Patients taking NSAIDs should seek medical attention immediately if they experience symptoms such as chest pain, shortness of breath or trouble breathing, weakness in one part or side of their body, or slurred speech."

 But I think anyone, whether they take NSAIDs or not, should seek medical attention if they experience those symptoms. Not helpful. Thanks.

The reason I am on NSAIDs for so long is my back. I take them for their anti-inflammatory properties to help with inflammation around my disobedient (pain causing) disks in my spine. I probably have inflammation in other areas as well.

I am not due to go back to my back pain doctor until September. But I will make a little note to ask about them. I am all for getting off any prescription I can. But in the meantime, I'll be on the look out for those symptoms....

Dr Google, Dr Oz, and other bad resources

I often tell people to step away from Dr Google. But sometimes he sucks you in and you can't help it. Then there is Dr Oz who will be happy to get you to buy green coffee beans or something that someone supposedly believes will cure cancer. Well maybe Dr Oz isn't that bad but I think he's smarmy (definition: excessively or unctuously flattering, ingratiating, servile, etc.)

Finally we have those online symptom checkers to help us figure out what's wrong with us instead of going to the doctor. But they are usually wrong as well.  I admit to using online symptom checkers to see if I can figure out what is wrong with me. But since I have so many other things wrong with me, I usually ignore them too.

Now new research shows how bad the symptom checkers can be. There are many good health websites, such as WebMD, maybe even your hospital. But the symptom checkers where they try to diagnose what you have when you select your symptoms, they are not so good. They aren't so great at figuring out what is wrong with you. And they don't always send you to the doctor when you should go and sometimes send you to the doctor unnecessarily. Use your common sense instead. Or if you aren't sure on your common sense, phone a friend.

In the know

If you are perpetually sick/ill, you are in the know on how we feel. Someone came up with a list of 20 items but a few stuck out for me.

• You aren't quite sure what it means to feel "100%" because you're usually hovering at a solid 80% on a good day.
• Sometimes doing even the simplest of tasks feels like a five hour workout. Can I nap yet?
• By some miracle if you are actually not sick, you usually overexert yourself so much that you'll be sick again in a matter of days.
• Your immune system feels like its one weekend away from collapsing completely.
• Naps become more important part of your day.
• "You don't look sick to me". No, but my kidneys feel like they're failing so there's that.
• When you finally feel healthy again, it's an emotional experience for you. 

I'm not sure I'll ever hit that last one again but occasionally I can sit still and feel no aches, pains, or anything else for about 30 seconds.... Until I move and then it all starts up again.

And no, if you  haven't walked the walk, you can't tell me how I feel.

Who is with me on this?

I was totally disgusted but also happy when I read this article about this moron oncologist, Farid Fata, who told over 500 patients they had cancer and treated them unnecessarily. Or even if they had cancer, they continued to receive chemo long after they were in remission. The result? Hundreds of people with lasting health issues and even some deaths. Then I found this article with more background.

He also over billed Medicare and insurance companies for millions of dollars as patients received over 9,000 injections or infusions. Some received unnecessary chemo for over five years.

The only thing more despicable than people who claim they have cancer and don't to raise money for themselves, are doctors who mistreat patients like this.
I just want to get in line with all these other patients and smack him in the face for his lack of morals and crimes.Who is with me on this?

Research hope and hopes dashed

I do follow the latest breast cancer, thyroid cancer, rheumatoid arthritis and fibromyalgia medical research. Some inner child is waiting for the cure to all of these ailments. I have learned a great deal about these ailments through reading the advances and get hope that some day a cure will be there. I also welcome the access to medical and other research across the board.

When I was first diagnosed with thyroid cancer in 1981, if I wanted to find information I had to go to a university's research library and read medical text books. It was confusing to say the least. In those days research was left to scientists and published in technical journals that were dense and textbooks for those learning the science or medicine that were no easy read.

Times have changed and I can find research every where. I can browse scientific journals online, set up Google alerts to send me the latest news, review the disease information on association websites, and have access to advances as soon as they are announced. However they all seem to be followed with the disclaimers 'more research is needed' and 'FDA approval is 5-7 years away'. Which can be frustrating, to say the least.

Every so often, I read some research that makes me wonder if I am over thinking, and perhaps the rest of us are too. I read this article on the impact of stress hormones on breast cancer recurrence or progression due to treatment resistance. It starts out by saying progesterone may stimulate that growth of cells that make cancer resistant to estrogen based treatments. Then it goes on to talk about the role of CK5 and goes on from there...

I admit it, I got lost. My breast cancer was ER-/PR- so do I have to worry about this at all? Well once I read it three times, I figured it out and could follow along.

But it made me wonder (which can be a bad thing), should I try to NOT follow all this research? Am I over thinking the hope that there is a cure out there? Should I leave this research to the scientists and not get myself bogged down in the details? I mean I do get the sense of hope from all the research that some day that cure will show up.

But is it worth letting myself get excited about the potential in the research and then get let down by the fact that the ending is 'more research is needed' and 'FDA approval is 5-10 years away'. Am I contributing to my own emotional medical roller coaster by trying to follow the advances and ensuing waiting?

A big part of any medical ailment is the emotional roller coaster that becomes part of your life after diagnosis. Learning how to cope with the roller coaster can be very difficult. And am I aggravating my own stress levels by accessing all this research? I will have to do some more thinking on this.

We aren't just our ailments

So I have a breast cancer blog because I have had breast cancer. I blog daily but not necessarily about breast cancer. Even when I first started blogging, it wasn't all about breast cancer. Sometimes it was about stupid doctors, or people lost in the parking garage, or other things.

Now its probably less about breast cancer and more about other things. Why? Because I am not just about breast cancer. I am about a bunch of other ailments and a lot of other things. I am a college graduate who works in both marketing and IT. I design and manage websites. I do catalog layout and design.I am happily married and we have two new cats who drive us crazy. And I go to the damn doctor too much.

I think all of us unhealthy people have a tendency to be defined by their ailments. I mean we might blog about them, or go to the doctor for them, or take a day (or ten) off work for them. But we are more than them.

We are men and women, tall and short, many different sizes and colors and religions and believes. We live in all parts of the world. The only thing we do have in common is we have an ailment.

We also do not want to answer questions about our health daily. I have a friend who asks me, every time I talk to her, how I am feeling. This is new since my second cancer but don't ask me in that tone, please. (You know what I mean.)

We are so much more than our ailments. Please let us be all of ourselves, not just our ailments.

I'm making a list

I have to make a list because I have no brains. My husband swears that my life is wallpapered with lists.

In early May, I saw my rheumatologist with the goal of doing something about methotrexate. While it has been good at controlling my rheumatoid, it has suppressed my immune system so that I would get a cold that would last 1-2 weeks every two months. I can't be out of commission that often from a stupid cold.

We made a deal where I would wean down my methotrexate for two months and increase my sulfasalazine and wait and see how I do. Well its two months and I go back to see her to talk options. I am not sure this combination has been that good. I have been having a lot of problems with my RA. Damn.

But I am making a list of issues and what to ask about options. Its a long list of issues and I am not sure how many options there are. Double damn.

Happy Birthday America!

Lets all take a minute to appreciate what we have and not what we want. To enjoy our freedom and thank the ones who helped us gain it and continue to help us.

Here is one of my favorite American heroes:

But there are many more near and far.

I am not usually all that patriotic but I did purchase a flag to hang on the front of our house recently (made in the USA and about $10 with a coupon). I also need a break from my health issues and the rest of life.

Am I an expert at anything?

I can no longer work full time. I struggle to work 15 hours/week. But I don't have enough money. Cash is tight in our house. I mean I have savings in the bank but they are in nice safe IRAs so they will stay there and grow until I retire. Anyway, I am trying to come up with more ways to make money.

My first thought is I will promote my knitting and crocheting and be proactive and sell more. The more I sell, the more I can knit. This keeps me busy and out of trouble on days when I am not up to going to work. So I have added a new page to my blog which I will fill with more information and keep my Facebook page updated with pictures of my latest creations. I can take credit cards or checks (if I know you) and will ship in the US.

My second thought is perhaps I can sell my services as a cancer consultant and help people navigate the medical maze of a cancer diagnosis. So I am asking, for feedback here:

• Would you want a cancer consultant to help you with the medical maze and cancer roller coaster on where to find support and help locally to you?
• Would you pay for this? Either on the phone or in email? 
• What kinds of questions do you/did you have?

I have no medical experience so I would not provide any medical guidance. I am not a social worker so I am not providing emotional support. But I do think I can help people find local emotional resources and additional information on their cancer.

My background is two cancer diagnoses so I have walked the walk so I think I can talk the talk.

What do you think? Am I on to something here?

Fibromyalgia issues

There has been a lot on line recently about fibromyalgia awareness. I don't need any more awareness thank you but felt I should share a bit.

My personal favorites are weight gain, muscular pain, fatigue and insomnia (thats a nice pair), and anxiety & depression, body aches, tender body points, and last of all, cognitive impairment a/k/a Fibro Fog.

Here are a few more notes from this article:

1. Fibromyalgia is primarily characterized by widespread muscle pain and tenderness.
2. Fibromyalgia can occur as a primary or secondary condition.
3. Fibromyalgia is often misunderstood and symptoms are often unrecognized, causing the syndrome to remain undiagnosed for months or years.
4. Ninety percent of fibromyalgia patients suffer with severe fatigue or a sleep disorder.
5. Fibromyalgia is associated with additional symptoms which seem distinct themselves but are actually included in fibromyalgia syndrome.
6. There are psychological as well as physical aspects associated with fibromyalgia.
7. Since there is so much variability in fibromyalgia, the syndrome does not manifest itself identically in all patients.
8. Diagnosis of fibromyalgia focuses on tender points but there is no definitive diagnostic test for fibromyalgia such as a blood test or X-ray.
9. Medication and non-medication treatments are used to manage fibromyalgia.
10. Fibromyalgia affects more women than men. The prevalence of fibromyalgia is between 2 and 4 percent of the population.

 But wait there is more!

You can read about the causes of fibromyalgia s well. And how it is a chronic condition and no it has absolutely nothing to do with any kind of arthritis.

I need to whine!

I'll just say that the best part of my day yesterday was calling my brother at 730 am and finding out he was on the west coast and it was 430 am. Sibling rivalry lives.

 This was my day yesterday:

Monday afternoon my phone would not work. I figured it has a dead battery (not an unusual situation for me) and I'll let it charge overnight and it will be fine. Tuesday morning it would not boot up. I tried everything. Finally I resorted to Google and found I could download a utility which would help me reset my phone (and since it was backed up, it didn't matter). But it took 45 minutes to download and install. Then I got a fail message. So I said GRRR (and WTF) and figured I would deal with it later. I unplugged my phone and it worked.

I got to work. We are about to get new paint, cubes, desks, and carpeting so everything is a bit chaotic. I carefully had packed up my office and desk and marked four boxes as being needed for my desk during all the chaos. There were only three boxes. And after some looking and research, it turns out my boss threw out my most important box (even though it was labeled). He did help me look through the recycling dumpster and we found about half of what I needed.

Then I couldn't connect to the f****ng internet. I tried everything I could and gave up and called our outside IT guy. He said he would be there in an hour and it then took about 30 seconds to fix it. (Why he couldn't walk me through that on the phone I have no idea.)

So finally I could get online and to the server, but I couldn't print. Because the person who was supposed to order toner for the main office printer a month ago, didn't because (a) she doesn't care, she has her own printer; and (b) see above. She apologized and said I could email her anything I needed printed. Half an hour later, I asked again and she hadn't even looked at her email because she (just found out she needed to pack her office and) had been busy packing up her desk. But the toner was due to arrive today and then she got an email saying it was back ordered so I guess she will be printing for all of us again tomorrow. And no I don't care if we all piss her off because she didn't order the damn toner a month ago.

Then I get to sit at my desk and get some work done. My boss stopped by and said he would see me next week. I said no I will be here Tuesday, Wednesday and Thursday because I have way too much to do. He was surprised because apparently its a slow work week and he didn't think I would have much to do. My work level does not correlate to how busy or slow sales are. I'm marketing and IT so I always have something to do.

And then the cats pulled a dead mouse out of the kitchen cabinets. It was in a trap and my husband hasn't been checking them as often as he should. I did not need to see a dead mouse when trying to cook dinner.

My plan is that today will be a better day. I will not have to put on my cranky pants and be a b***h to everyone again. I also think that my health recently has not been cooperative so that I tend to over react to everything. I also do really like my job and my boss. Usually he is very nice and understanding. Yesterday it was just too damn much!

Deep breath. It will be better. And I can always claim too much pain from something and need to leave work for the day.