Saturday, May 31, 2014

A day for me.

The last few weeks months of my life have been crazy. Too busy, too tired, too rushed. No time for me, sleep, food, gardening, knitting, seeing friends and all that kind of stuff. Today was about me. I had lots of things I should do - laundry for example, which is sort of happening but it is taking a very long time. There are also things I want to do - catch up with friends. Finally there are things I did do which I greatly enjoyed.

This morning I slept until 9am and felt rested. I find that if I get up earlier I am too tired and really need to sleep until 9 at least a couple days of the week. You say - why don't you go to bed earlier? I say I think 9 pm is a darn good bedtime. So yes sometimes I get around 11-12 hours of sleep (and it makes me a much happier person).

Then I decided I needed some time for me. I went to a whole bunch of yard sales to feed my inner crap shopper. I look them up on Craigs List and make a plan so I am not driving in a hundred different directions.

I ended up buying (are you ready?): a box window fan for $7 - brand new in the box, never used. A queen sized cotton blanket - brand new, original packaging for $5. Ten skeins of yarn for a total of $10 - several are some good quality yarn. Two boxes of cookie cutters that I will use for felting and a roll of fancy ribbon for making fascinators for $2. An entire brown paper bag of assorted lightbulbs for $1.

Then I went to the crafts store and for $8 bought enough to make 6 fascinators in varying shades of purple. Finally, I came home and ate lunch, did some gardening, processed more laundry, and rescued the neighbors dog from our basement (he tried to meet our cat unsuccessfully earlier), looked at more laundry.

Now I am sitting on my completely unmade bed, realizing that is is 245 in the afternoon and I have not gotten together with the friend I wanted to see because I took so much time for myself. But I feel like a better person for having taken time for me.

Before blogging I read a few other blogs and realized two things: Tomorrow is National Cancer Survivors' Day (feel free to join me in not giving a shit about it - for some reason I really don't care this year). And today is exactly seven years from my breast cancer diagnosis. And for some reason I don't really give a crap about it as well.

But I guess I am still here and that is what is really important. Go me!

PS What is a fascinator? Its one of those fancy hats on a headband that the princesses in England wear but are quite fashionable as an accessory for holidays and the Kentucky Derby.

Friday, May 30, 2014

Predicting breast cancer recurrence five to fifteen years out

When I was diagnosed with breast cancer seven years ago, I heard about the Oncotype Dx test, for which I was not eligible (for some stupid reason I can't remember) that would help decide whether chemotherapy was necessary. It has now been available for ten years and has been shown that it can help predict late recurrence of breast cancer - which is defined as five to fifteen years out from the initial diagnosis.

I think this is real progress in reining in cancer. [I wasn't going to use the word battle or war or anything like that. I had to think and settled on reining in.] This ties in with extending the use of tamoxifen for ten years to obtain better results.

"As recognized by ASCO's guideline update, recent studies have shown that extending tamoxifen treatment for 10 years is associated  with better outcomes, however, we still need better tools to identify who those patients are," said Norman Wolmark, M.D., chairman of the National Surgical Adjuvant Breast and Bowel Project (NSABP). "This study confirms that Oncotype DX can help better define who is at greatest risk for late recurrences and the potential to benefit from extended tamoxifen, as well as those who are at lower risk and will likely have less absolute benefit from extended tamoxifen and, thus, could be spared prolonged exposure and risk of long-term side effects." 

Now of course, I am still do not have the criteria to belong to that group that was in the study but it is nice to know that there is progress in knowing about who is more likely to have recurrence. This in turns allow them to be better followed to catch any recurrence early.

Thursday, May 29, 2014

Going for the heart strings, of course

There was a new study (because we need a new study so the researchers don't have to polish up their CVs -  that's resume for the non-technical) that says there are more and more ads for cancer treatments and cancer treatment centers. Their results showed that:

"A systematic content analysis of these ads found that the content is sharply directed at a would-be patient’s heartstrings:

  – 85% made emotional appeals to consumers
  – 61% used language about hope, extension of life, or a cure
  – 52% touted innovative, or advanced technology or treatments
  – 30% evoked fear by mentioned death, fear, or loss

Nearly half of the advertisements included patient testimonials, but only 15% included a disclaimer about patient outcome. No advertisements described the outcomes a “typical” patient may experience. Failure to disclose this information is a violation of a Federal Trade Commission mandate, the report notes."

Only 2% of the ads disclosed the risks and 5% disclosed the costs. Basically, they skipped right over the parts that say you might be throwing up as you are going bankrupt... but I digress.

Emotion based advertising is a key target in the advertising world. Feel their pain and you can make them open their wallets. But evoking fear of death is kind of creepy. If you don't try this, you WILL die!

"“Clinical advertisements that use emotional appeal uncoupled with information about indications, benefits, risks, or alternatives may lead patients to pursue care that is either unnecessary or unsupported by scientific evidence.”"

The researchers conclude by saying that further research is needed to see if this emotion based, direct to consumer advertising is contributing to the sky rocketing cancer care costs in recent years. (Job security.)  If it is promoting misinformation by omission of key information for consumers and playing on their emotions, its not a great use of the money.

My thought is all this advertising is clearly contributing to pharmaceutical company and medical center bottom lines through additional costs. Which in turn is bumping up their overhead. The kind of advertising that is done is not cheap. So maybe we should just get rid of it - just as we got rid of alcohol and tobacco advertising in the past and their costs would go down, and then our prices. But that would be a pipe dream on our part.

Wednesday, May 28, 2014

How much would you pay to heal yourself?

Current pharmaceutical pricing of new cancer drugs are sky rocketing. $100,000 for a new medication designed to extend life by months or weeks is crazy. Here is a very long article on cancer drug pricing and all the issues surrounding it. I say read it, its worth it to get a better understanding of the issues surrounding the high prices.

My few points are:
  • Pharma companies spend billions on research, required testing to meet FDA standards, and then can only expect to reap the benefits through the length of their patent which is ten years.
  • If they lowered prices, their share holders would be unhappy and less likely to fund additional research for new drugs which would result in fewer new drugs in the future even though the short term benefit of reduced pricing would benefit patients. But the shareholders would be happy.
  • In their research process, numerous discoveries do not make it FDA approval and are tossed, throwing out years of research and billions of lost costs.
  • And the most appalling: "The high cost of current cancer therapies is at least limited by the relatively small patient populations they treat.  Next generation immunotherapies, including CTLA-4, PD-1 (programmed cell death), and chimeric antigen receptor therapies (CARTs), appear to deliver much improved outcomes (in some cases including complete remissions) with limited side effects – and may also be used to treat many more cancer types and much larger patient populations than current therapies.  Given their inherent value to patients, they could easily command prices well in excess of $100,000 per course of treatment." Please reread that last sentence: Given their inherent value to patients, they could easily command prices well in excess of $100,000 per course of treatment.
I can accept that lots of research can end up in the trash bin if drugs do not perform as expected. I can buy that happy, rich, healthy share holders help companies stay on track. But I cannot and will not accept pricing based on the 'inherent value to patients'. That is basically saying that they are charging what they think a patient would pay.

This is like saying when you break a leg, how much would you pay to have it set and mending with pain under control? At the second of pain, you would probably pay $2000 for that first shot of morphine....

That's insane. Go get some morals and charge patients correctly.

Tuesday, May 27, 2014

Sexist biology

Research on mice and other animals has historically been done on male lab mice. Because the female lab mice's cycles might mess up the scientific research. Hmmm...

This one makes me think. If all medical research is done on males, of course it is going to be biased. Just like when all legislators are male, women's rights lag.

So why the controversy? This has been a long running problem. As a layperson I have been aware of this for a few paltry decades. But now it is hitting the forefront as feminist biology is interfering and causing a few ruffled feathers.

So here's my layperson take on this. If all research is done on male mice so the little bitty mouse girly cycles don't interfere with the results, why do they think they can extrapolate and start using their findings on female anythings - from mice to humans - without complications.

It is known that some medications have different effects on males and females (take Viagra for the obvious example). Also at the end of years/decades of expensive research, the drug companies say they still need more years/decades of expensive research because their research didn't cover all potential groups who might benefit from the drug.

I know its a lot more complicated than that but if the basics of the research start off skewed, aren't the results going to end up biased? Let's start with a level playing field here.

Sunday, May 25, 2014

Taking all the fun out.

Cancer has a way of taking all the fun out of life. They cut you up, they poison you, they burn you, and through all that they make you feel like crap. You are tired, trying not to throw up, weak, have the blahs, want to sleep and more. Then you finally start to feel better after treatment and want to return to a normal life.

Then they say don't drink because it can help increase your rate of recurrence. This is along with the advice of not to get fat because that can do the same thing...

It takes all the fun out of everything - don't get fat, don't drink, but you are fine. Big raspberry to that news!!!

Saturday, May 24, 2014

Retaining the sense of control

That sense of having some control over your situation goes a long way often - particularly in the decision making part of a cancer diagnosis. It sounds like common sense but for some reason we needed a study to prove it to the scientists (and because we need more studies to keep the scientists busy).

This was published in the recent issue of Cure Magazine (which if you have cancer and do not read it, you really should - online or paper copies on the mail are free). As part of the many stressors that accompany cancer, being part of the decision making process where you can learn the different options and their potential impacts and side effects. It gives the patient back some control over their situation.

Why didn't this happen sooner???

Friday, May 23, 2014

Changing doctors...

I am not one to doctor shop or doctor hop. But I did make a change to my doctors yesterday. I see a psychologist and psychiatrist for depression and anxiety - how is your brain after all sorts of medical crap.

The PhD had recommended I see an MD a few years ago and she recommended one who was not available. So I went with Dr S instead. I was not impressed. She has no people skills. I stuck with her because I felt that I should give her a fair chance. A few years later I am not impressed still. So I bit the bullet and consulted with the PhD on who to go with. Now I'll be seeing a Nurse Practitioner instead.... I don't really care as long as my meds interactions are monitored closely which is my real problem.

My only real doctor concern these days is that one of them might retire and I will be forced to make a change...

Thursday, May 22, 2014

This is stupid

Why are patients with Medicaid diagnosed with breast cancer later than those with other insurance? This is our national health insurance for those without other insurance and it does not provide screening mammograms or educate its patients on the need for them?

"Stage II breast cancer was more likely to be diagnosed in Medicaid patients than any other insurance designation, including self-pay. We suspect this is the result of lack of use of screening mammograms or lack of access to care altogether. Further research needs to be performed examining the time course of diagnosis in the advanced-stage population. Surveying patients diagnosed with advanced-stage breast cancer as to whether they were undergoing age-appropriate routine screening or if they had impediments to gaining access to medical care would reveal possible areas for improvement in the healthcare system. It would be interesting to examine the barriers to care according to insurance status as well."

Stupidity at its finest. In the 21st century no less.

Tuesday, May 20, 2014

Life expectancy thoughts

You get diagnosed with cancer and saving for retirement gets lower down the list of important things to do. Then you get diagnosed with cancer again and it really becomes less important and sometimes even slips into the category of  'why bother'.

But then you bounce back and start thinking long term again, slower than before, but still making plans seems worth while. Or should I just save my money and have a really huge party for my memorial service propped up in the corner in a casket?

Life expectancy charts are for other people because with a couple of cancer diagnoses and friends dying from cancer around you, your life expectancy is different.

That is the little chain of thoughts in my head.

Then I find out that rheumatoid arthritis no longer affects life expectancy as much as it once did but can put a damper on it.

Then I found an online life expectancy calculator. It does not ask how many times I have had cancer only if first degree relatives have had certain types of cancer. It says I have a 75% chance of making it to 83, a 50% chance of making it to 94 and a 25% chance of making it to 102. But since it does not take into account all my health issues, you may call me skeptical. 

So where does that leave me? I don't really know. I'm still here and I guess I am happy with that.

Monday, May 19, 2014

Right to try laws

I have mixed emotions on right to try laws. These are laws which hope to circumvent federal laws and get drug companies go make new and experimental drugs available to patients who are looking for that one last chance, when all other possibilities have been exhausted.

Colorado, Missouri, and Louisiana have already passed these laws due to strong social media programs.With right to try, the patient needs a prescription or recommendation from their doctor for th e new drug that they take straight to the drug company.

It sounds like a good idea for patients who are looking for that last chance. There are patients who have benefitted from these last chances but here are the issues:
  • the FDA already has a program for compassionate use where patients have to fill out s lengthy form that usually gets approved.
  • Drug companies who provide drugs under state law and ignore federal law run the risk of making the federal government a bit unhappy,
While streamlining the federal governments approval process may not be a bad idea, circumventing the federal government might not be the smartest idea. I think I would want to lobby my federal, not state, legislators to recognize that patients are smarter these days.

Sunday, May 18, 2014

Thoughts on obesity and cancer

Studies show (because we need another study) says that being obese influences caner patients outcomes. Basically, the fatter you are the more likely you are to die from your cancer. The rates were 16.9% vs. 21.5% in a recent study on breast cancer patients.

Well here is my problem: cancer treatments often cause weight gain (unless you are too nauseous to care about food - but then you can still gain weight). First there is the stress eating and depression eating caused by the trauma of a cancer diagnosis and its looming treatment. Then they pump you full of steroids at each infusion to reduce reactions to your chemo drugs which cause you to feel starving and give you that round moon face. Then the hormonal treatments for breast cancer more weight gain.

My fibromyalgia medication, Lyrica, is known to cause weight gain.

Do you see a pattern here?8

If obesity is going to be considered as much of an issue as to tobacco as a health risk, shouldn't more focus be placed on the side effects  of the treatments themselves? Shouldn't care be taken to prevent causing additional health risks while treating another ailment?

Is the benefit I get for taking Femara, hormonal breast cancer treatment, negated by the weight gain it causes?

Sometimes I wonder why I still take it. If I could lose some weight by going off it, would I be better off without it?

But then we realize that it is easy in most situations to put weight on but much harder to take it off. And with each new medication you gain another 10 pounds that just won't go away...

More research please.

Saturday, May 17, 2014

Having fun!!!

I am sorry for not blogging for a few days but I am visiting the town of Saint Peter, MN for a friend's wedding this afternoon.

I flew out from Boston on an uneventful flight (and they didn't lose my luggage) on Thursday. Since then we have been eating and drinking, as well as getting our nails done and other girly stuff. This morning is the big hair adventure where I will hang out and chat - my hair is pretty short these days so it does not need much. Then back here for the wedding itself.

But the big news is that yesterday I met another breast cancer blogger who I only knew online. We were cyber friends but now we met in real life, a rare occurrence in the blogosphere when people come from the four corners of the earth. So yesterday I had a drink with Teresa of the blog Spellbound by our own imperfect lives where she writes about her own breath cancer misadventures.

It is absolutely wonderful to meet other bloggers in real life. Every so often I get this opportunity and I try to grab it.

But it's time to get moving to get on with today's misadventures!! Congratulations A and J (you know who you are!) Best wishes for many years of happiness together.

Thursday, May 15, 2014

Go be inspired

Stephen Sutton died yesterday morning in his sleep at the age of 19 in the UK after being diagnosed with bowel cancer in September 2010. He had a Facebook page and a website with a blog and a bucket list (mostly completed) and you can follow his timeline to learn what he did.

He accomplished a lot in his short life including raise over 500,000 pounds for charity. He should be remembered as someone who did some pretty amazing things. Go read about him and be inspired to get moving in your life.

Wednesday, May 14, 2014

A Crazy Day

This morning I am up early and need to get out the door in the next ten minutes (but of course I stop to blog first). I am volunteering at the annual New England Direct Marketing Association's conference where I take care of the vendors and  help get them organized. Everyone else there hates dealing with the vendors because they ask so many questions but I have fun with it. But it will be a long day. Within an hour, I will be trying not to move tables around or climb under them to local  plugs.

My question is how many more years I can keep doing this. For people with a bad back and arthritis it is not the most user friendly day. I have been doing this for several years now as my health has gone downhill. So I am not sure how many more years I will be able to help them.

I then have to finish packing to go to a friend's wedding (you know who you are Judie and Anders). My husband has this crazy idea that I will be done packing in time to go out for a leisurely dinner. That's just nuts. I still haven't gotten my medications organized for four days a way...

I have decided that traveling by myself I will suck it up and pay Delta their extra $25 to check a bag, and really hope they don't lose it. So if I am going to check a bag, I can bring a big bag to fit everything in. I have no idea what dress I'll be wearing so I am bring four dresses (three with tags still on so I have the return option) to choose from once I get there. This means several pairs of shoes depending on the dress. You get it. All this equals the giant suitcase. This just another example of me trying to be a normal person... (You know what happens next - crabbiness.)

But I digress. It will be a crazy day today. I have no idea how much time I will have to pack this afternoon and how much my back will hurt but I have to get going. I am due there in fifteen minutes. I'll bring coffee.

Tuesday, May 13, 2014

Only perfect people need apply

It is a known fact that clinical trials are very selective when creating their selection criteria for who to include. (That is not a grammatical sentence but its early in the day here.) What I am trying to say is that if you do not fit their criteria, you will not be included. I have so many ailments, I have never been included in a clinical trial. They don't want me.

Hop on over the and see if you would fit their criteria for any. They are very specific. Basically they are trying to determine toxicity, dosage and more. An abbreviated version of the official government description of the different stages are:

"Phase 0: Exploratory study involving very limited human exposure to the drug, with no therapeutic or diagnostic goals (for example, screening studies, microdose studies).
Phase 1: Studies that are usually conducted with healthy volunteers and that emphasize safety. 

Phase 2: Studies that gather preliminary data on effectiveness (whether the drug works in people who have a certain disease or condition). 

Phase 3: Studies that gather more information about safety and effectiveness by studying different populations and different dosages and by using the drug in combination with other drugs.

Phase 4: Studies occurring after FDA has approved a drug for marketing. These including postmarket requirement and commitment studies that are required of or agreed to by the sponsor."

In Phase 2 and 3 trials, the most common ones we hear about and participate in, are where the drug manufacturers select their groups of patients who have the disease that they hope to treat. But they routinely exclude people with other issues who might not conflict with the trials or cause side effects that could be from the new drug or from the other issues. So you have to be perfect.

A growing problem is that with the aging population as the Boomer generation about to hit their 70s, older patients are being treated with new drugs that have not been tested on their age group.

"For at least 25 years, it’s been known that drugs that work one way in an otherwise healthy younger adult might not work the same way in the elderly. Many older adults are frail and might metabolize medications more slowly or suffer unforeseen drug interactions. Blood thinners, for example, might be riskier in someone with a tendency to fall. Medications to control blood pressure could be harder to dose appropriately in a patient with poor kidney function. In 1989, the FDA set guidelines encouraging drug companies to study how their drugs affect the elderly, with the goal that the population being studied prior to drug approval should resemble the population that would ultimately take the medications. But the guideline was not a mandate...." 

" in five trials excluded potential participants based on their age alone. In half of the remaining trials, patients were excluded from participating because of conditions that disproportionately affect older adults, such as cognitive dysfunction or limited physical activity. And only one quarter of the studies looked at outcomes that might be relevant to older adults, such as quality of life or physical function." 

So for all of us imperfect people out there, you can understand the issues here with multiple health issues, never mind age, which may cause us additional problems through treatment.

Monday, May 12, 2014

Healthline Best Breast Cancer Blogs of 2014

Once again, I am very honored to be included in Healthline's Best Breast Cancer Blogs of 2014. For some reason, this is what they think of me:

"Caroline's Breast Cancer Blog is not just the story of a woman’s battle with cancer and the health complications that accompany treatment. It’s also a running commentary on the ins and outs of an evolving health care industry. But rather than rant about FDA rules, health insurance, and mammogram guidelines, Caroline Ronten brings a reasoned tone to the conversation. She asks the questions many of us also ponder.

Ronten will make you feel for her as she grapples with health problems beyond cancer. But she’ll also make you think about just what fixes are needed to make health care better for everyone."

I didn't know anyone thought that I had a reasoned tone or was reasonable but I am pleased to hear it and very  happy to be included in this list again, as in the past 3 or 4 years (I think).

I was reading through their list of the best cancer blogs and realized that I follow many of them and think they are very good. My blog reading list has grown in recent years as I have added the other blogs on the list to my reading list. I highly recommend following the other 20 blogs on the list as they provide a lot of thoughts and issues and commentary across the full gamut of breast cancer and its surrounding issues.

Sunday, May 11, 2014

Before you die

Don't go with regrets. The top five regrets of the dying are (according to some survey or another):
  1. I wish I had the courage to live a life true to myself instead of what was expected of me
  2. I wish I didn't work so hard
  3. I wish I had the courage to express my feelings
  4. I wish I had stayed in touch with friends
  5. I wish I had let myself be happier
You may or may not agree with them all but the point is don't go with regrets. Its not a bucket list but more ways to be happier.

I think I am doing pretty well with these. I am not sure I will have these regrets but I want to make sure I don't have any regrets. I guess the point is to be happy in your life so you don't have regrets.

Saturday, May 10, 2014

How to be a bad patient

Doctors (and dentists) have their own pet peeves about patients. Of course, we can't all be the perfect patient but here are the best ways to piss off your local medical office:
  1. Show up late. Its often a medical emergency or patient issue which makes your doctor run late. But you are not helping if you wander in 45 minutes late and your doctor now has to fit you in because your time slot has passed.
  2. You ask unrelated questions to your doctor or their staff. If its not a medical problem, its not their problem.
  3. You lie about taking your medications. If you didn't take your medication for some reason, at least be honest about it. And if you didn't take your medication as directed and didn't get better, its not their fault.
  4. You self diagnose yourself and tell the doctor what you have. Some things are easy - you have a rash for example. You can see it. But don't tell your doctor you have a specific ailment unless it has been diagnosed. That is their job, not yours.
  5. You start asking questions at the end of the appointment after your conversation with them has ended. To help remember, bring a list of questions with you and highlight the most important ones so you cover them.
I didn't make up this list, I found it online. But seriously, its just a lot of common sense. 

I try to not do these things. I admit to be guilty of most of these at times. I am human. But I try not to be a bad patient. I have enough ailments so I usually am not a quick visit for them.

Friday, May 9, 2014

Using immune cells to reduce tumors

This sound interesting. Not stem cells, but the patient's own immune cells, were used to help to help fight cancer.

What they did is:

"Researchers at the National Cancer Institute sequenced the genome of her cancer and identified cells from her immune system that attacked a specific mutation in the malignant cells. Then they grew those immune cells in the laboratory and infused billions of them back into her bloodstream.

The tumors began “melting away,” said Dr. Steven A. Rosenberg, senior author of the article and chief of the surgery branch at the cancer institute."

Now the patient is not cured but her tumors are much smaller. She had an advanced and particularly deadly type of cancer in 2012 when she was approached to try this experiemental technique. Now just because it worked on one person, it does not mean its ready for prime time. But it does represent a new approach to cancer treatment. 

Thursday, May 8, 2014

Would I Explode?

I try to be a good patient, but sometimes I wonder if I ditched all my pills, would I explode or something?

The legacy of any cancer patient and anyone with chronic ailments is the pile of pills one must ingest daily. I am so sick of being tied to my pill box that I just wonder, what if I ditched them for a day, or two...? Would I ever go back?

I only take a few million, or so it seems:
  • One thyroid pill - due to thyroid cancer
  • One Femara (AI) to reduce breast cancer recurrence risk
  • Two Lyrica for fibromyalgia
  • One weekly injection for rheumatoid arthritis
  • Two folic acid to reduce side effects from the injection
  • Two leucovorin weekly to reduce side effects from the injection
  • One daily anti-inflammatory due to bad back
  • One weekly pain patch for bad back issues
  • 1.5 anti depressants due to the stress and anxiety caused by all these ailments
Plus, a daily multi vitamin, two fiber pills, two calcium pills, one Vitamin E, two Calcium with D, and the Glucosamine that I have to get more of because I ran out. And my twice daily eye drops for dry eyes (which are probably a side effect of some medication).

Is that enough? I think its way too much.

So I have been wondering, what if I went off my meds? Would I become a news headline? You know the kind that ends with ''....  a family member said they had stopped taking their medication before robbing the bank?"

So my chemobrain/fibro fog allowed me to forget to put on a new pain patch this week which I usually change on Mondays. We'll just say that my pain levels imploded this morning so I had to take another pill to see if I can get it under control as I wait for my pain patch.

I guess I may not explode or implode but I would probably be very uncomfortable... Damn.

Wednesday, May 7, 2014

How good is your health care?

Now that we have a national healthcare system in place, a recent study on the quality of healthcare available in the US, state by state. They looked at things like dental care and tooth loss, obesity, death rates, and more.

I am lucky/happy to live in Massachusetts which has many good hospitals and doctors and had a mandated healthcare system for nearly 10 years. I have always thought I have received good health care over the years.

I read through the article and was appalled on some level at the level of health care available in differing states in this day and age. But then I read through the full report (17 page pdf) and was generally impressed with the improvements in the past five years.

So overall, while some parts of the country still do not have access to quality medical care, improvement is visible.

Tuesday, May 6, 2014

The Cost of Cancer Care - or Big Pharma Is Getting Rich

Today's Boston Globe has an article on the "Sky-high drug prices test cancer patients". A few little pieces of information I drew from it:

"In the United States, a month’s supply of a brand-name cancer drug is now about $10,000, double what it was a decade ago, according to the report. The most expensive drug, at $117,648 for a course of treatment, is Bristol-Myers Squibb Co.’s Yervoy, the first drug to prolong survival in patients in advanced stages of the skin cancer melanoma...."

"...On average, an insured patient’s total outlay for a year’s cancer treatment is about $9,000, excluding any assistance programs, with the insurance company covering the remaining $115,000, according to Aitken. Patients receiving older cancer drugs available as generics would pay less.

The higher the patients’ costs, the more likely they are to drop out of treatment before finishing. For example, the report notes that when copayments for hormonal breast cancer treatment exceed $30, there is a 10 percentage point drop in the number of patients who complete therapy, compared with when the copay is $30 or less. For patients who stop therapy and resume it later, the combined patient and insurer costs can jump 50 percent."

$9000 per year is not chump change and the insurance company's share is a paltry $115,000 - so you wonder why insurance companies are feeling the crunch.

But then I found a little article on Pfizer and how generics are hurting Pfizer's profits:

"Despite sharply lower expenses and taxes, Pfizer Inc.’s first-quarter profit dropped 15 percent, due to generic rivals and an end to some promotion efforts with other drug makers. Shares fell as the company missed revenue expectations by $730 million, but narrowly beat profit estimates. Revenue at the New York giant has fallen since 2011 as cheap generics hurt sales of some off-patent drugs that once brought in billions annually, particularly the cholesterol fighter Lipitor, the top-selling drug ever, with peak revenue of nearly $13 billion."

But before you feel sorry for Pfizer at all, their reported net income for the first quarter of 2014 was $2,329,000,000 on $11,353,000,000 reported sales.

So I dug a little more on Pfizer and found this lovely section on the Value of Medicines for Oncology in their Press Kits and Downloads. So I started reading after many self accolades on their benefit to society and was appalled by this section on page 2:

"Based on the average cancer drug expenditure per patient from diagnosis until death over the past decade, an analysis showed that the cost of that added year of life – plus any further benefits to the individual’s quality of living – was about $6,500. Given that surveys indicate that most Americans would be willing to pay $100–$300 thousand to extend their lives by one year, $6,500 represents a bargain for society.

For decades, the U.S. public and private sectors have committed substantial resources toward cancer research, but the societal payoff has not been well-understood. One study estimated between 1988 and 2000, life expectancy for cancer patients increased by roughly four years, and the average willingness-to-pay for these survival gains was roughly $322,000. Improvements in cancer survival during this period created 23 million additional life-years and roughly $1.9 trillion of additional social value. The share of value flowing to patients has been rising over time. In terms of economic rates of return, R&D investments against cancer have been a success, particularly from the patient’s point of view."

So they are justifying their high prices of cancer drugs based on the fact that most Americans would be willing to pay huge sums to extend their lives by one year. A bargain for society? So they are getting rich on our wishes not to die? Please. I have no sympathy.

Monday, May 5, 2014

A very real problem

Drug resistant bacteria are now a real problem world wide. Think of the world before antibiotics where a simple cut could kill someone if it became infected. I find this very scary. As someone with multiple health issues, I am deeply concerned about getting a germ that can't be cured because it is antibiotic resistant.

The causes of this are multiple (from my layperson understanding):
  • Doctors over prescribing antiobiotics for ailments that do not require them.
  • Patients not taking entire doses of antibiotics so that the germs are not destroyed but adapt and become resistant to the antibiotic.
  • In the food industry, livestock is given antibiotics for some silly reason - this leads to low level exposure that help build resistance.
  • Discarded antibiotics end up in the water supply - this also leads to low level exposure that help build resistance. 
Now the problem is much more rampant. The World Health Organization recently released a report on this topic.

"Antimicrobial drugs are one of the foundations of modern health care something we all hope to rely on when we get sick with ailments including pneumonia, urinary tract or blood infections, diarrhea or sexually transmitted diseases, Fukuda says. These infections occur worldwide on a daily basis.
But because of overuse or misuse or improper use of existing treatments, the ability to fight these infections is getting harder and harder, he says.

In its first global report on antimicrobial resistance, released Wednesday, the WHO says " a post-antibiotic era in which common infections and minor injuries can kill is a very real possibility for the 21st century."..."

"Conservative estimates in the United States alone suggest 2 million people get antibiotic-resistant infections each year, and at least 23,000 die because current drugs no longer stop their infections."

This is the part that is most scary to me:

"Some people may wonder why they should worry. Fukuda says that anyone who gets a serious infection, develops cancer and needs chemotherapy or requires any kind of surgery could be in a bad situation with no drugs left to treat them. The same is true for premature babies or malnourished children.

After two cancers and eight surgeries, and penicillin allergies, am I going to end up this way?
"Bottom line," says Fukuda, "we should expect to see that there are going to be some people who have untreatable infections."

The WHO says there's a need for a global action plan, including:
– better use of vaccines; basic hand hygiene to reduce infections, such as washing hands; reduction of non-health uses of antimicrobial drugs;
– support of research that will lead to new and better diagnostic tests;
and better surveillance, to get a better overall global antimicrobial resistance."
A lot of this is up to the patient/consumer. We should not demand/expect antibiotics unless they are for an infection. If given them, we should use them properly and finish the entire dose. We need to demand meat that has been raised without antibiotics. We need to go back to the basics and wash our hands and take care of minor injuries before they become infected.

Its too scary a world for those of us with not the best health.

Sunday, May 4, 2014

The Weighty Question

Here I am feeling old and fat. I am fat. I know it. I wore a dress when we went out to dinner the other night and it made me look pregnant. I am too fat. I know I have to lose weight and believe me I am trying.

Here are the problems I have with losing weight:
  1. My newest medication, Lyrica, added 10 more pounds
  2. My hormonal breast cancer medication was good for another 10 pounds
  3. I can only exercise three days a week or am in pain and uncomfortable for a couple days
  4. I like food, I like to cook, and I like to eat
  5. I am an emotional eater and eat when stressed 
  6. And, last but not least, I work in an office which has a candy basket that is usually full, a snack tray full of tasty and fattening foods, and people bring in goodies a couple times a week. The last two are in full view of my desk and so going back to # 5 on a bad day at work, I am doomed.
I have been working on losing weight. But it is much harder to lose these days.  Having the stomach flu where I didn't have any appetite (or go to work) for 9 days, helped me start. I am down a few pounds that seem to be staying off but want to keep them off and take off more.

I can't live on lettuce. I do like salads and healthy food like Greek yogurt, home made granola, bananas, and other healthy foods. My husband is intent on losing weight as well. Tonight's dinner will be fish with vegetables and maybe some quinoa. Tomorrow night we will probably have fish again. That will be a good start.

I know losing weight will help with fibromyalgia, back pain, RA, and reduce cancer recurrence risk so there is lots of incentive, never mind the emotional side of not wanting to go up another clothes size, again.

The weighty question is it possible for me to lose weight by changing eating habits and food choices for the two of us long term? I certainly hope so. I have blogged about this several times over the years and the scale seems to keep going in the wrong direction. Maybe its time to throw out the scale.

Saturday, May 3, 2014

Back from our mini vacation

We had a great time. We stayed at a little beach front hotel on Cape Cod. The weather wasn't perfect but we enjoyed ourselves.  However my back is now giving me lots of pain so I will take it easy for a few days to see if it recovers.

Tomorrow I will go to the wake for a friend who just died from breast cancer. I had hoped to go visit her instead. I knew she wasn't well and under hospice care. She had been stage IV since January 2013 but treatment didn't seem to slow the cancer down. It will be very sad. She was only 55 and was first diagnosed about the same time is me.

Cancer really sucks sometimes.

Thursday, May 1, 2014

The Best Laid Plans

The best plans have a way of falling flat and causing anxiety and indecision. Today is our anniversary and we had planned a few days on the Cape to celebrate. My husband took yesterday off from work and I planned to work half a day, go to a doctor appointment and the hit the road around 3 to beat the worst of rush hour traffic. Well that didn't exactly work out.

My doctor wanted both blood work and an x-ray, of course. The blood lab was standing room only so I headed to x-ray which was very quick. The blood lab was standing room only still so I waited close to half an hour, when it usually is a five to ten minute deal. Finally I escaped and we got on the road after four which means traffic and the it started to rain as well. We arrived after six, checked in and got the notice that a lost key is a $50 fee.

Three trips to the car in the rain and we are missing a key. I put a leaky water bottle in a bag on the bed which manages to leak all through my bag -my knitting is wet, my pill box was drowned so I might be short a few pills for a day or two (but not the important ones) and the water soaked through the bedding into the mattress..... and its raining sideways so our ocean view is tempered by sheets of rain pouring down. The rain should stop shortly and we will proceed with our day.

One additional thing from yesterday is I spoke to my friend N who I blogged about last week,  B is home on hospice and not doing well at all. We plan to visit on Sunday to see her one last time but it maybe too late. I want to see her and told her I would bring her a beer. She laughed and said she would let us know if she wanted a beer or a glass of wine. I said her choice.

At this point if she wants to open a beer with friends and take a sip or just wet her lips with it, does it really matter? She probably hasn't had a beer in a while and no one has offered her one because she's on hospice and is clearly dying.... but hell if it was me, I would be very happy to have a glass of wine with friends if it was one of my last days on earth.

I just hope Sunday isn't too late. I will get a call if anything changes in the meantime... but of course the weather and cancer coordinate to mess up our plans for some time a way.

PS As always, a note to burglars we have a house sitter  in our absence.

I Started a New Blog

I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment. Howe...