Sunday, May 31, 2015

The looming precipice

There is a looming precipice here for the biotech industry. Its the pricing precipice. There is an article on this in today's Boston Globe. The three main issues for the industry are:
  1. There are no biosimilars (think generics) to help bring down the costs. And the biotech companies have been fighting them with  multiple lawsuits to prevent them.
  2. Salaries have caught up with pharmaceutical companies.
  3. Prices have started to make headlines.
'Tony Dodek, associate chief medical officer at Blue Cross Blue Shield of Massachusetts, says high-priced “specialty drugs” represent just 1 percent of the prescriptions handed to Blue Cross’ members, but 25 percent of the insurer’s spending on drugs, a share that is rising rapidly. “That’s not sustainable,” Dodek says.'

'While we are seeing a profusion of breakthrough treatments..., the price is often determined by asking, “What’s the highest price I can charge and get away with,” said Alison Taunton-Rigby, a former biotech executive who serves on several corporate and nonprofit boards. Speaking at a recent industry conference, Taunton-Rigby said, “It’s an attitude we need to talk about. I think we actually have a black mark against us as an industry.”'

'Many in the industry will complain that they need these high prices to justify the millions of dollars burned bringing a new drug to market, and attract new investment to cultivate the next generation of drugs. But the industry needs to consider ways to trade short-term “profit maximization” for its own long-term vibrancy.'

The biotech industry has been producing drugs which save lives but also cost more than the average house for a course of treatment. With a house, you can get a mortgage with a prescription, you and your insurance company will go broke. An example of the new Hepatitis C drug which costs $84,000 for a 7 month course which cures 90% of the patients. That's cheap compared to a $175,000 liver transplant.

A new drug to come out later this year for Cystic Fibrosis will cost over $300,000 per year. That would be the same as buying a new house every year. Who can afford that?

Saturday, May 30, 2015

Will I be what is expected?

Later today I am getting together with some old friends, from high school. One of them I got together with a couple of months ago, the others I haven't seen in decades. Will I be what they expect? I have no idea.

In recent years, I have skipped telling people about my cancer crap right away. I just say I have rheumatoid arthritis and fibromyalgia - and some people do not understand those implications.

I have found that I skip telling people about cancer until I know them better. There is no reason to. And sometimes they run away. A few years ago I reconnected with an old friend and she wanted to get together until I said 'breast cancer'. And I never heard from her again.

My health has changed me in many ways. Internally both physically and emotionally, externally just physically only. I have lots of physical limitations - no twisting, lifting, carrying, shoveling, raking, vacuuming, biking, skiing, and lots of other things. I have some emotional issues such as depression and anxiety. Who wouldn't with my health? I have nothing to be depressed or anxious about? Hahahahahahahahaha.

Anyway, what will they expect me to look like and be? I have no idea. I guess I will just have to wait and see. Its been a long time since we used to go shopping at the mall on Friday nights to check out guys.

Friday, May 29, 2015

No I don't care

Sunday is my cancerversary. I don't really care. At all. What would I be celebrating? Still being here after breast cancer. Not really. I probably should celebrate my 34th cancerversary from thyroid cancer. But I don't either. I have considered that one but never have done much.

I can understand why some people want to celebrate being around after their lives were turned upside down. I have a friend who is I believe 8 years out from stage IIIC lymphoma. I have another friend who will be 34 or so years out from stage IV ovarian cancer. Those probably deserve more celebrating but I am not even sure either of them do.

What I do prefer is to celebrate my 37th birthday (again - I was 29 for a long time but have since switched to 37) this year. My life is not defined by my health but by me. In fact, I cannot let my life be defined by my health. I am so much more than that.

Thursday, May 28, 2015

Genetic Testing's Downside

Finally someone did a study about a lot of genetic tests. And the results were not that good.

Allow me to state that I have never been a fan of genetic tests. I am not someone who is going to go out and have any genetic tests, any more than I am going to get my palm read or see a fortune teller. I have no desire whatsoever to find out what could be in store for me. I have enough going on currently without worrying about the future as well.

The thing about genetic tests is they tell you if you have a gene mutation or variant that could show an  increased or decreased risk for something. Some of the things could be minor, like getting gray hair younger (like my siblings) or a propensity for wrinkles. Some things could be major, like cancer or a heart condition.

Genetic tests tell you what you could have happen. But they do not tell you what the risk is. The only way to know the risk is for test results compared to other test results and their health issues. The data must be shared. But not all labs share their data.

"...  not all gene mutations, or variants, are equal. Some raise risk a lot, others just a little, and some not at all. Most are of unknown significance - a quandary for doctors and patients alike. And most variants are uncommon, making it even tougher to figure out which ones matter and how much.

To solve these mysteries and give patients better information, the U.S. government several years ago helped form and fund ClinVar, a database for researchers around the world to pool gene findings, coded to keep patients' identities confidential. More than 300 labs contribute to it, including universities such as Harvard and Emory and some private companies such as Ambry Genetics and GeneDX."


"...So far, the project has tracked more than 172,000 variants in nearly 23,000 genes, a small portion of the millions known to exist but some of the more common ones that have been identified.

More than 118,000 of these variants have an effect on the risk for a disease - and 11 percent have been analyzed by more than one lab so results can be compared. In 17 percent of those cases, labs interpreted the findings differently, as either raising the risk of a disease, having no effect on it or having an unknown effect.

At least 415 gene variants now have different interpretations that could sway a medical decision, such as whether to have healthy breasts or ovaries removed to lower the risk of cancer, or to get a medical device such as an implanted defibrillator to cut the risk of sudden cardiac death."

The first problem is not all labs interpret the results the same way and then the problem of what to do about them surfaces. Data sharing will help with these problems as more data is shared and compared.

Wednesday, May 27, 2015

Aging or health issues

Today I volunteer at a local conference. I have to be there shortly so need to leave asap (and its 6:13 AM as I write this). Its an annual conference for my professional life. I have volunteered there for several years. Maybe 7, maybe 9? I can't remember any more.

But this will be the last year. Getting up so early is now difficult for me. And being on my feet for a few hours isn't going to work either. Usually I stay for most of the conference but this year, I'll probably head home after the morning keynote speech.

Yesterday I had a doctor's appointment as a follow up for a test where I had not so good results. The doctor said some of the issues I experience could just be part of aging. But I have more tests to confirm this.

So my question for myself is aging part of my problems these days or are my limitations due to health issues? I always blame my health issues for any problems I have and not aging. I don't consider myself as old, but I could join AARP at this point. The majority of my health diagnoses have been accompanied by 'you are too young for this'. Maybe my age is catching up to my health.

Tuesday, May 26, 2015

The imperfect mammogram

Sometimes I start to think, which can be a dangerous proposition and something that my husband believes I should not do too frequently. One thought that has wandered through my brain is that we make assumptions about mammograms and other medical tests and procedures. I also found an article that agrees with me.

To give a little history, I had a benign fibroadenoma at the age of 23, which was three years after my thyroid cancer, and have had mammograms since then. Fibroadenomas are benign and common in younger women but can put a woman at 1.5 or 2x the risk of breast cancer later on. (A little factoid I just learned and wish I had known decades ago.)

But after decades of mammograms, and breast cancer and a later fibroadenoma at the end of chemo, I can tell you I never felt they so wonderful or perfect. My first fibroadenoma was found by me and confirmed by a mammogram (my first). My breast cancer was found by a mammogram. My second fibroadenoma was found by an MRI and grew during chemo.

There has been a lot of disagreement, false information, arguments, stories about mammograms saving lives, and more in recent years. Komen says mammograms save lives (as her sister wanted - but that's another story). The AMA, ACS, and other groups have their own opinions.

But lets take a step back, as this writer describes, and think about the real mammogram numbers and results. Some cancers are missed on mammograms. Sometimes mammograms find benign conditions. These can lead to more testing or procedures or even over treatment.

First, no medical procedure, test, surgery or whatever is perfect. There is always a margin of error. Strep tests are good 99% of the time, flu shots don't prevent all cases of the flu, any surgery could have complications. Second, as patients we make assumptions that a medical whatever is going to save us. A doctor will come along and be able to save us from whatever. They do their best but research is always on going to learn more.

Screening for cancer can save lives but none of the tests I know of are perfect. A high number on a test can be a sign of cancer but it could be caused by something else. I am all for cancer screenings but we can't rely on them completely. We need to accept that medicine is not perfect but it is all we have.

Monday, May 25, 2015

A weekend away

I took advantage of the long weekend and went camping with my husband and my brother and his four kids. I resisted the urge to bring technology with me and only brought my phone, and then killed the battery. So I was low tech.

Now we are back. I have 190 !!!!!!!!!!!!!!! emails downloading as I type and am facing piles of laundry. (And a nasty bowl of spinach that I left in the microwave instead of bringing it along to reheat for Friday night's dinner). It was nice to get away and hang out with my nieces and nephews.

But I am glad to be home so I can sleep in a real bed and then, damn, I have to go to work tomorrow and have a doctor appointment. Triple damn.

Friday, May 22, 2015

Damn those pesky blood tests

Yesterday my plan was to go to my therapist and then get some blood work done for my rheumatologist. The hospital switched to a new software program with a new patient interface. I like the interface because I can see all my upcoming appointments and test results and all sorts of fun stuff.

When I saw my rheumatologist earlier this month we agreed to switch around my meds which meant more blood tests. I had made a note of getting my blood work done yesterday but realized I never got any notification on my planned blood work. I decided I should call to find out if they were really scheduled. And they weren't. But because I called, they were happy to put them in the computer.

So I went for my blood work after my new therapist urged me yet again to go to a different support group on how to relax more. This morning I got the result. And they suck. To be honest.

This means my plan to switch away from methotrexate and the forever and ever colds may not work. Damn those pesky blood tests. Damn.

Thursday, May 21, 2015

I have nothing to blog about today

But I feel compelled to because I blog every day. I have received many questions over the years of blogging (almost 8) on how can I find something to blog about every day. Well today I didn't. Sorry. It happens.

Wednesday, May 20, 2015

What if life didn't revolve around cancer

Maybe you healthy people out there can weigh in here. I look at my email inbox, my Twitter and Facebook feeds, and everything I touch it seems, and they are all full of cancer, fibromyalgia, and rheumatoid arthritis. I feel like I live in a world full of cancer, fibro and RA.
But don't other people live in a world outside of cancer, fibro, and RA? Everyone has different stuff filling their life. My stuff seems to be focused on my health.



All the blue stuff on the right is my health. What if I didn't have all that blue stuff to fill my life? Maybe I could do other things. Travel, adventures, hiking, a full time job, and not go to the doctor? That would be a nice life.


Tuesday, May 19, 2015

Pharmacies decide when you can get your prescriptions

Yesterday I went to the pharmacy to pick up two refills for me and get my husband's prescription filled. No such luck. I got one prescription refilled. The other one is too soon according to the pharmacist. And my husband's was also too soon. As I was actually speaking with the pharmacist who I have spoken with several times in the past (because I am a frequent flyer at the local pharmacy), I decided to ask more questions.

I found out that most national chain pharmacies make their own rules as to when you can pick up a prescription. At Walgreen's, where I was, and at CVS, you can only pick up some prescriptions, of medications subject to abuse, the day before or the day they are needed. Rite Aid, I was told, allow you to pick it up two days prior. You can't pick them up sooner. And if you are going on vacation and want to pick up a prescription early you need to show a plane ticket or something. This isn't a law or anything this is a rule the chains have developed.

Really? How non-customer focused! This is a huge example of poor customer service. From the store's point of view, the customer has to come back to the store for each prescription (unless they can be perfectly timed to be picked up together) and potentially purchase other items.

But from the customer's point of view, with poor health probably, multiple store visits at the company's convenience are not so good. I have options here. I can switch my prescriptions to mail order where they are more lenient on prescription dates as they have to allow for shipping time.

I completely understand the issue of substance abuse, fake prescriptions and all that. But this is a bit too strict in my eyes. I can understand if its a new prescription or a new customer should be made to wait. An existing customer who gets their prescriptions filled regularly should not have to deal with this.

I have always believed that it was the insurance companies and laws that were the basis for determining when you could pick up your prescription. Not stupid company policies. Sorry I am not a fan of these. Maybe its time to write to the corporate offices to complain.

Monday, May 18, 2015

All those "Don'ts"

Normal people (I assume because I haven't been normal in a really long time - at least physically, mentally may be another story) go to the doctor or dentist and get all sorts of advice. Floss, brush, eat healthy, blah, blah, blah.

Me I go to the doctor or dentist or other medical professional and get a list of don'ts.
  • Don't lift anything over 15 lbs. (For the rest of your life)
  • Don't twist your back (Ditto)
  • Don't use a treadmill (Ditto again)
  • Don't drink alcohol (because of your meds)
  • Don't stop exercising (because you may never be able to start again)
  • Don't rake, shovel, vacuum, sweep, or anything like that.
  • Don't forget your eye drops twice a day or more often
  • Don't forget your dry mouth rinse
  • Don't forget your special tooth paste
  • Don't forget your new prescriptions
And I'm sure there are more but its too early in the day for my brain to work correctly. These are followed by the lovely tips such as 'eat healthy', 'get plenty of rest', 'take care of yourself', 'floss' (because what dentist hasn't told you to floss), and 'here are some more tests for you'....
I just get frustrated by the limitations in my life. Why can't I just be normal and do all the things I want to do. Museums would be nice but that involves long walks and standing around. Two things I don't do well. And before you suggest it, I'm not ready for a wheelchair anytime soon. I like walking on the beach but now am limited to packed sand at low tide. And I can't go as far as I would like.

They say a cancer diagnosis leads to PTSD and depression often accompanies an RA diagnosis. So how's my mood? I have drugs for that. And therapy. And a lot of frustration.

Sunday, May 17, 2015

Transition

I miss our cat. I missing having a cat. I like have a warm fuzzy kitty to snuggle with as I sit around and recover from whatever my latest overexertion has been.
My husband has told me not to say things like 'we are thinking about getting a cat' because then we are instantly offered one, or two or three... This has already happened.

I grew up with cats. I lived without cats for a long time because I didn't live where cats were allowed. I met my husband and he came with a cat. We bought a house and the cat ruled until mid-April. It was a very difficult time when we had to put him down but he was not doing well at all. But he was a great comfort to me when I had health issues.

I admit to looking at pet adoption websites. My husband thinks I might go out and adopt a cat without him. I would never do that but I like the idea of keeping him on edge. We have made a deal that we will get two cats (he wants) or three cats (I want) at the end of the summer when our travels are done for the year.

Shere Khan left some large paws to fill. He would bring us his captured mice from the kitchen. Or the time he walked into our next door neighbors house and went upstairs and slept on the bed in the master bedroom. Or he would go visit the neighbors for treats and snacks. Or he would walk around another neighbor's house and their dog would go nuts inside. These are all true stories. (He really did go into our neighbor's house and sleep in the master bedroom.)

But I am plotting to what cat I would want to adopt. Double paws, short hair, larger sized sound good so far. As my health declines, having a cat has been more important. I want to be greeted at the door and have someone to snuggle when I have a bad day. But I will be patient, and plot for the ideal cat.

Saturday, May 16, 2015

Not so restful sleep

I have lots of problems sleeping. Its tough to have ailments which cause both fatigue and insomnia. So being the good patient that I am, I spoke with my doctors about getting some sleep aids. I was prescribed one and given the caution that it can cause weird dreams. And it does. Yowza!

I get the weirdest dreams with places I have lived piled up on top of each other, with different friends, family members, pets, etc all mixed in together. I wake up feeling all agitated. I cut the dose to half a pill. Then I tried adding some anti anxiety meds, which leave me in need of a nap.

This clearly isn't working. I wake up having slept but with a knot in my stomach. I need a new plan here.

So back to the damn doctor I go. As if I need another doctor appointment.

Friday, May 15, 2015

Choosing the advice to follow

I get a lot of advice on how to be healthy. And I find even more in the media. So my problem is which pieces of advice to follow and which to ignore. I finally have made a decision. I will only follow the advice I like.

For example, if advice includes eating more dark chocolate, count me in. But if it says eat more tofu, no way. This morning alone I have seen advice to drink more coffee to protect against breast cancer recurrence, vegetarians should eat more fish to prevent colon cancer, and cereal is a superfood.

I am not a vegetarian but we do eat fish at least once a week. I am drinking coffee as I blog. I did try some instant oatmeal (not something I usually eat) this morning but apparently it had been in the pantry too long and is now in the trash. I am having Icelandic yogurt and a banana instead.

I get so much advice, I feel overwhelmed at times. I get too much advice. Every doctor gives me advice. Friends give me advice. The media gives me advice. I give up. I think I am smart enough to make my own decisions now and will continue to listen to new medical advice but am done trying to follow it all.

Thursday, May 14, 2015

Times have changed

I am not a Mad Men fan. It just has never had much appeal. We are now facing the last episode this coming Sunday and then it will go off the air. I have been intrigued about the thought of so accurate representation of life in the mid-late 1960's. But I have never bothered to watch it.

I found something online yesterday which talked about last Sunday's episode where Betty goes to the doctor after a fall for rib pain only to learn she has advanced lung cancer. But the doctor won't tell her until her husband arrives. The Huffington Post reviewed the show and spoke to the CMO of the ACS:

"According to Dr. Otis Brawley, chief medical officer of the American Cancer Society, the portrayal of Betty's care was almost entirely spot-on: A woman diagnosed with lung cancer in 1970 would have been given the patronizing care that Betty received. Though not a fan of the show, Brawley watched the episode and explained it was par for the course back when “cancer” was a generally whispered or unspoken word, and the medical community was generally patronizing to women as well as cancer patients.

“I can tell you that there was misogyny in medicine, and I can tell you there was actually a time in the United States when it was common not to tell people they had cancer, but they told the family,” Brawley told The Huffington Post. "I can tell you that there was a time when many people did not even say the word ‘cancer’ or simply used the words ‘Big C.’""

He adds that the reason it was so patronizing was that there was little if anything that could be done. At that time, there were a few chemotherapy options but lots of discussion on if they even were helpful.

I remember when Betty Ford announced publicly she had breast cancer. She and Shirley Temple Black were the first to make this announcement publicly and helped break down the barriers to make cancer spoken, not whispered. Less than a decade after that, I had my first cancer diagnosis in 1981. A few years ago, I met a woman who was diagnosed with thyroid cancer around 1980, and her parents never even told her about the diagnosis.

I am so glad times have changed. We may not have a cure for cancer but we can at least talk about it.

PS extra points to everyone who can watch that gif for more than a couple repetitions without getting the beginnings of a headache or getting dizzy.

Wednesday, May 13, 2015

What's in a name?

Who ever said that? I can't remember but it doesn't really matter. However WHO is now looking at names for some diseases that stir media hype, bias, and fear. Mad cow? The words alone make me think of the bicycle scene in "Butch Cassidy and the Sundance Kid" where Paul Newman gets to see the whites of his eyes.

Asian bird flu doesn't make me think of the Far East but of the Chinese ducks that were in a favorite story from childhood.  West Nile virus makes me think of the Egypt and wonder if it came from crocodiles.

WHO wants names of diseases to reflect what they are not where they are from or found. They want references to diseases not to include types of animals, places, people, or cultures or occupations. Some other names under attack are Alzheimers and Lou Gehrigs and Lyme disease. I am sure you can think of more.

The problem with these fancy names is the panic and bias that ensues in the public as a result. Who wants to go to Asia if you can get the Asian bird flu? Or Egypt if you can get West Nile? Or Lyme, CT if you can get Lyme disease? Swine flu means you don't want to eat pork or go visit a farm.

These name makes it easier for people to relate to and the hype and fear to ensue. If the new flu is called H1N1 or 2016 highly transmissible flu, would you stop eating chicken or pork?

"As the WHO announcement stated, scientists as well as national authorities and the media should take care early on to give a name that is more responsible and accurate."  

Tuesday, May 12, 2015

When do we start feeling old?

Cancer diagnoses have never made me feel old but lots of other things do.
  • Having clothing longer than my co-workers have lived
  • Being older than my bosses
  • Being older than my doctors by a decade or so
  • Referring to young people as the younger generation when discussing clothing styles and tattoo preferences.
  • Remembering the good old days when you could get bleacher tickets to the Red Sox to sit on benches for just a couple of bucks.
  • Remembering black and white TV with three channels, five ice cream cones for a dollar, movies for a dollar.
  • Remembering when computers were for dorks and geeks.
Being told I am too young to have all these ailments does not make me feel old. It makes me appreciate being so young.

Monday, May 11, 2015

Strategizing

I think I am finally figuring out how to manage my own health. Call me slow but I am finally getting there. I try to be a good patient. I take my (huge pile of) pills every day and show up for appointments and all that. Sometimes I even try to take a step back and look at the gigantic huge big picture of my overall health.

I am trying to be even more proactive about my health. I know there are on going issues that I need to tackle - lose weight, keep eating healthy, and getting regular exercise. But I am also aware of many other issues that I need to work on. Primarily coping with the side effects of my medications and treatments. That's a big one.

I take methotrexate (MTX) for my rheumatoid. It is also a chemo drug but in lower doses it is used to treat RA and other ailments. One side effect is that it keeps my immune system so low that I keep getting sick. I have had at least two bad colds already this year that caused a week or more absence for work. I am also on two prescriptions for other side effects.

I decided I need to cut MTX out of my life so I talked to my rheumatologist last week about getting off of it. So for the next 8 weeks I am cutting back on it and increasing another prescription which has fewer side effects and shouldn't have as much effect on my immune system. We will see in 8 weeks if I have more RA problems. And if I don't get another bad cold.

I need to strategize (Is that a word? Spell check says not but I'm using it as it makes sense to me.) some more about my health.

I know losing weight would be a big help to me. But I can't exercise more so I guess I need to eat less. I have more upcoming doctor appointments and I have to do some thinking about changes that I might want to make.

Sunday, May 10, 2015

Which support group?

I am a huge fan of support groups. With my first cancer diagnosis (thyroid) in 1981, cancer support groups were for old people, not for college students. (And back then cancer was whispered, not shouted.) With my second cancer diagnosis (breast), I immediately joined a support group (because I was not going to let cancer suck more years of my life). I actually attended two different breast cancer support groups over several years. They were great for me and provided a lot of emotional support group.

I also tried attending a chronic pain support group a few years ago. It was okay, but not very convenient for me and I didn't instantly connect with anyone. It was a big group as well with a range of ailments and ages.

Now I have a new therapist and she suggested I join their new fibromyalgia support group. I am a bit iffy on that. I think my hesitance comes from the fact that my health issues are not as focused on fibromyalgia or any single ailment.

As my blog has changed over recent year, my health has changed as well. I do not have a single focus for my health now. I have multiple ailments with multiple concerns.

I don't only focus on my annual mammogram and follow up with my oncologist any more. I focus on my annual mammogram and follow up with my oncologist and my rheumatologist appointments and my pain management appointments and my endocrinologist appointments and all my related tests and scans.

I need a support group for people with breast and thyroid cancer and fibromylagia and rheumatoid arthritis and bad backs and lymphedema and chronic pain and fatigue. I don't think there are any of those. This is why I have a therapist so I have a personal support group. I think that's the best I can do.

Saturday, May 9, 2015

Fish cancer

This is just icky. Fish caught with cancerous tumors on them. I would never want to eat them, swim in the water with them, or eat anything else which came out of that water. Icky poo!

'...we find young-of-year and now adult bass with sores, lesions and more recently a cancerous tumor, all of which continue to negatively impact population levels and recreational fishing," ...

"If we do not act to address the water quality issues in the Susquehanna River, Pennsylvania risks losing what is left of what was once considered a world-class smallmouth bass fishery,"...'

And

'...there was no evidence that cancerous growths in fish are a health hazard to humans. But she warned that people should avoid eating "fish that have visible signs of sores and lesions."'

Eating cancerous food sounds absolutely disgusting. But to me this really is a sign of a real environmental problem. If fish are getting cancer in the water, what impact is it having on people and other animals and birds in the area? I would be greatly concerned about my own personal health if I lived nearby.

Friday, May 8, 2015

Chemo brain starts with diagnosis

There has been a fair amount of research on chemobrain in recent years - yes its real. but new research shows that it starts at cancer diagnosis with the resulting PTSD. So basically you don't have to have chemo to have chemo brain. You just have to have the diagnosis.

So chemo brain or cognitive function disorder comes from stress. I definitely understand this. The new research did explore other possibilities in that cancer could impact certain thingies in the brain. But I'm sticking with stress.

You know if you are in a stressful time period or situation, your brain starts to run a mile a minute and you can't remember anything. I think we all remember where we were when we heard those words 'you have cancer', but then do we remember much else from the next few moments? And then we all start to panic on some level 'am I going to die?'. Then our brains dissolve further.

The ensuing days, weeks and months are full of stress as we try to control our panic and figure out how to handle our treatment as we make decisions - surgery, chemo, and more. Our brains keep melting. Then the chemo drugs start to have an impact on more brain cells. By the end of it all, we feel we can't remember anything.

I think for me my brain further went to mush with the onset of fibro fog, but I can't remember.

Thursday, May 7, 2015

Muddling through life

My life is not that exciting. I am not that exciting a person, period. I can actually be pretty boring. I spend a fair amount of time reading, knitting or watching TV - partly because I need downtime to keep going through the week before I get too tired out. I harbor my energy until something exciting comes along.

My one exciting event that occurs regularly are doctor appointments where we play "what's wrong with Caroline now". This week, for example, I have two doctor appointments - Monday I had my rheumatologist, Friday I have the eye doctor. I think I have at least one doctor appointment next week. How exciting. Not really. Just leaning towards a bit stressful.

Unless someone is an epic tweeter or celebrity, I don't think most of us live exciting lives. This is fine with me because I just want to be a normal person who muddles through life. That's much better than being a patient, because that gets too stressful.


Wednesday, May 6, 2015

Price increases? Really?

Aha, so I found another dirty little secret of the pharma industry. When sales volume goes down, they raise prices to make up the difference.

"The 9.9% hike in Enbrel's list price pushed through by Amgen on May 1 illustrates once more how biotech and drug companies profit by raising the cost of their older medicines to offset falling prescription volume. Enbrel doesn't work any better for rheumatoid arthritis patients today than the drug did when first approved in 1989 -- but its does cost a lot more.

The same Enbrel with a list price of $10,000 per year in 1989 now costs almost $42,000 per year. Inflation only accounts for about one-third of Enbrel's price increase.

Amgen relies on regular price hikes to maintain sales growth of its older drugs, which are being used by fewer patients. ...Enbrel sales grew 13% to just over $1.1 billion in the first quarter, but only because Amgen raised the price of the drug 19% to offset a 2% drop in prescription volume.
The most recent uptick in Enbrel's list price follows two similar price increases last November (7.9%) and June (6.9%).... 

Abbvie also raised the price of Humira, a competing rheumatoid arthritis drug, by 9.9% on April 1. (And Amgen's hike matched that exactly one month later. Interesting.) Humira's patents in the U.S. and Europe expire in 2016 and 2018, respectively, paving the way for the approval and commercial launch of cheaper "biosimilar" versions.

The roll-out of less expensive but equally effective treatments for rheumatoid arthritis patients is likely to put a dent in revenue generated by Amgen and Abbvie. But until that day of reckoning comes, the prices of Enbrel and Humira will surely march higher."

How sneaky. I should try that. As I cut back my work hours because of my health, I should demand more per hour to compensate. I am sure my boss would like that. Not!
A shell filled beach on Sanibel, near our condo.

Tuesday, May 5, 2015

This is mild RA?

Egad! Yesterday I had a follow up appointment with my rheumatologist. One of the many questions I had for her was what did she consider my RA to be - mild, moderate, or severe. I was somewhat surprised to hear her say - it was mild. Really? I feel like crap and have several areas of my body that have pain and swelling as well as some other issues.

I have to admit that RA is not my only ailment that causes aches and pains. I do have a couple others. And since I was diagnosed with RA and fibromyalgia at the same time so I am not sure which pains are attributable to one or the other and then there is all that osteoarthritis crap too.

On the plus side both my rheumatologist and the physical therapist at the gym yesterday told me they thought I was doing very well managing my health and my range of motion was good.

But that doesn't mean I feel that well all the time. So today I took a pain pill already and am headed out the door for another day.

Another vacation picture. Maybe I'll keep posting them until I bore everyone.

Monday, May 4, 2015

I shall have to remember all this 'advice'

I constantly see this type of advice - how to boost, help or other tips for your underactive thyroid or slow thyroid.
  • Eat nutritious food
  • Cut down on bad fats
  • Limit cholesterol
  • Increase fiber
  • Exercise

Is this different from any other set of medical tips for anything other ailment? No. Well sometimes they do add things like no alcohol or take your vitamins. So why is this news worthy? They do also add in this case to avoid iodine rich foods.

I just get really aggravated by these thyroid tips on how to rev up your metabolism or your slow thyroid. I have no thyroid which is different. Well actually I have a tiny little piece of thyroid left which does squat. But there are never any tips for those of us who are thyroid free essentially. That would be more helpful. The only tip we ever get is to take our pills the same way every day, preferably on an empty stomach. Grr.

Sunday, May 3, 2015

I blew out my flip flop

Yes it really happened. We went to Sanibel Island for a week which is why I haven't been blogging about me much. And the first day we got there we went down to the beach in our flip flops and stood in the surf and I really did blow out my flip flop.

It was a wonderful relaxing time. And our tenth anniversary. Since we got married, my health has tanked. Let's review the last ten years of my health:

2005 - Massive internal infection due to necrosing fibroids which led to hospitalization and a few months later a hysterectomy.
2006 - I was fairly healthy, for a year.
2007 - Breast cancer diagnosis in May followed by two surgeries, chemo, and ending the year just before Christmas with another lumpectomy.
2008 - Radiation and gall bladder surgery. And my back started causing a lot of pain.
2009 - Back MRI and diagnosis of degenerating disks
2010 - Lymphedema started and treatment for my back. A badly sprained ankle with a chipped tibia and other longer term issues.
2011 - Back treatments and injections began. And I got tennis elbow and developed Raynaud's.
2012 - PT for my tennis elbow and more back injections and procedures. And diagnosis of RA and fibromylagia.
2013 - Osteoarthritis in both knees with synvisc injections. All sorts of fun with RA issues.
2014 - More RA issues, a few colds caused by low immune system. Dry eye issues from RA
2015 - So far only two colds including an ear infection, more lymphedema, and some evil dental work.

But we are still happily married and we are still speaking to each other.. My husband does put up with me and all my ailments.

Saturday, May 2, 2015

This just makes me mad

As I said about being a poor patient, this really just makes me mad.

Gilead's hepatitis drug, newly released in fall 2014, has lead to record sales. Their sales in the first quarter of 2015 were $4.55 billion (with a b, not an m) alone and their total sales were over $12 billion which lead them to a profit of over $4 billion as well. That's a hell of a lot of money. And the retail price for their lovely new Hepatitis C drug, Harvoni, which is so affordable, is $95,000 per patient. That is not a typo.

While some say it is affordable, it really isn't. The state of California, for example, can't afford it.

This really just makes me mad. Here we have a pharma company which created a life saving drug and then they price it so outrageously that its unaffordable. And they are so profitable at the same time that it is really difficult to accept the price of this drug. Oh sure the insurance companies will pay for it (great - that will just end up in your premiums) and they have programs to help you pay, but why don't they just make it more affordable to begin with.

What really irks me about this whole issue of high priced drugs is that when the Affordable Care Act was being implemented there were lots of worries that the government would some how put a price on the value of a human life. We don't have to do that because the government is not putting a price on our lives, the pharma companies are.

Okay, I just needed to vent a bit.

Friday, May 1, 2015

Dense Breast Tissue and Laws

I feel conflicted about this one. There are new state laws enforcing that women with dense breast tissue must be notified by their medical providers. Okay, that's great but then what do they do?

Yes there have been women diagnosed with breast cancer which was not seen on mammograms but that is a small number. Advocates for this law want to help women be in more control of their healthcare. Advocates against it are concerned about overdiagnosis and additional costs - particularly in states where insurance companies are required to pay for ultrasounds after clean mammograms.

And doctors have said they don't have the tools to do much with the information.

"New ways of classifying dense breast tissue could put even more women in the category of receiving dense breast notifications, said Dr. Priscilla Slanetz, who recently wrote a New England Journal of Medicine article questioning the effectiveness of dense breast notification laws.

One reason she wrote the article, she said, was "in our state [Massachusetts] very few of our primary care providers have any knowledge about breast density and strengths and limitations of these different tests" for supplemental screening.

The same may hold true in California, where a small survey of primary care doctors found that only half of them had heard of the state's 2013 dense breast notification law and many felt they didn't have enough education to address what breast density meant for their patients.

On this point, both supporters and critics of the laws agree: doctors need better tools to help their patients identify their individual cancer risks."

Okay, so now we have people who want to have these laws but we do not have a way to deal with the information. How helpful.