Wednesday, April 30, 2014

A trip down memory lane

Back in 1971-2, half of all cancer patients lived one year. Now, in the UK at least, half of all cancer 'sufferers' (how is that for a horrible term?) live for ten years. I would assume the rates are similar, or even better in the US. But even in digging around in the National Cancer Institute's website, I could find the data.

The actual quote is:

"The analysis showed that in 1971-2, 50% of people diagnosed with cancer died within a year. Now 50% survive for at least a decade - up from 24% in 1971-2.

But the findings, based on the outcomes for more than 7 million patients, also showed that for some cancers, survival rates were still very low.

For example, just 1% of pancreatic cancer patients and 5% of lung cancer patients can expect to survive for 10 years."

So there is good news and bad news mixed together. But it does show a huge improvement in cancer treatment and research.

The goal is to have it increase to 75% survival rate for ten years. Its not just treatment and research but also screening and earlier diagnosis which have come in to play.

So progress is good. It shows we how far we have come. But we also need to work on the vocabulary. Sufferers? Really?

Tuesday, April 29, 2014

Unemployment after chemotherapy

In May 2007, two weeks prior to my breast cancer diagnosis, I was laid off from my full time job. That is the last full time job I have worked. I was a rocket scientist and decided I could job hunt between surgeries and while going through chemo. I ended up returning to a part time job I had held before - lucky me, they had an opening.

Now it turns out I am not alone. New research (because we always need new research) shows that women who undergo chemotherapy for breast cancer are much more likely to become unemployed. (They didn't tell us about that little factoid when we were making treatment decisions.)

"Dr. Reshma Jagsi of the University of Michigan Health System and her colleagues studied 2,290 women in the Los Angeles and Detroit areas diagnosed with breast cancer between 2005 and 2007. They spoke with more than 1,500 of them four years later.

About 1,000 of the women were under 65 and interviewed both times, and of them, 76 percent had paid jobs before they were diagnosed.

The women who got chemo were less likely to still be working four years later, they reported in the journal Cancer. The researchers found that 38 percent of the women who got chemo were jobless four years later, versus 27 percent of the women who skipped chemo..."

"The findings don’t surprise breast cancer experts. “For the vast majority of patients, side effects are manageable and they can improve after, but some patients don’t feel fully functional for the long term,” said Dr. Jennifer Litton, a breast oncologist at MD Anderson Cancer Center in Houston."

In my case, I worked two part time jobs for a total of about 30 hours/week for a few years after chemo and radiation ended. Since my rheumatoid and fibromyalgia diagnoses I have cut back to one part time job for 15-18 hours/week. Sometimes that is even difficult.

Even with out RA and fibromyalgia, I am not sure I would be able to do my previous jobs again. As marketing director for a medium sized non profit, I was multi-tasking, putting out fires, and jumping through hoops as I hands on managed and over saw an on-and offline marketing plan. My brain is fried. I get tired. My chemobrain kicks in and I have no memory of what I did 10 minutes ago. I don't trust myself to do as much as I used to.

Now I do marketing for a small family owned business. When I took the job, we discussed the fact that it was clearly a step back for me career wise. I told them my life had changed in that I had gotten married and was looking for a job where I wasn't traveling, wasn't managing a bunch of people, and could go to work and go home. That has become even more real. 

Now I leave myself notes all over the place on what needs to be done because there is no way I could remember it all. I have flexibility to go to doctor appointments and for the days when I am too tired. I can manage my schedule around my health issues. And I don't have to worry that I might overextend myself because I can handle my little job.

This new research shows me that I am not alone and there are many other women out there who don't work or work in lesser jobs because of chemotherapy.

Monday, April 28, 2014

Sued for not disclosing cancer had returned?

What? But it is a sad state of affairs for Valerie Harper. She was starring in a play in New York City and her brain cancer returned. The playwright and several producers are mad that she didn't tell them until she was having problems on stage from the treatment. So they filed a lawsuit. Tough cookies you guys!

Now I assume she was under some kind of contract with all sorts of weird clauses that you usually do not see outside the entertainment world. But it is stated in law that medical issues are no business of the employer. But they are mad so they are suing her.

And where is their compassion? You may remember in January she disclosed that she had three months to live as result of her brain cancer. She is now cautiously optimistic.

Let me just say a few things about this as I am seriously ticked off:
  1. You are morons and being childlike. She was sick and couldn't perform.
  2. She has cancer and doesn't know how long she will life.
  3. Its none of your business that she had cancer before and she had no way of knowing that it would recur.
  4. Finally, don't you have any sense of compassion?
Twits!

Sunday, April 27, 2014

Wishes granted

"If wishes were horses, beggars would ride."

Just over 2 years ago, I blogged about Darlene Grant's video when she was dying of stage IV breast cancer and wanted the FDA to give permission for her to get Perjeta so she might live a little longer. Perjeta was not yet available and she needed special permission to get it.

When I blogged about it, my basis was that she was wishing for things that weren't there. There was no guarantee that it would work. Cancer patients are optimistic about potential treatments because sometimes it comes to grabbing at any straw that comes our way.

But I must say I am absolutely delighted to watch this video this morning. She got Perjeta and she is alive and well today. She has started a non profit to help breast cancer patients.

So while Darlene is clearly riding these days, she is not out of the woods yet. But she did get her wish and she is still here. She will be closely supervised for the rest of her life but looks to count her time in years and not in days as she did in 2012.

Saturday, April 26, 2014

Quick access to medical care

Do you see the nurse or the doctor (or the physician's assistant)? Back in the good old days, you went to the doctor and saw the doctor. A nurse might come in and take your vitals, bandage something up, or some other task that was below the doctor's capabilities. They were doctors and didn't do the basic stuff that would take away from their schedule.

Now you may see the doctor, the nurse, the nurse practitioner, or a physician's assistant or even someone else.... Does it make a difference? Not really. They all give out prescriptions, send you for tests, and diagnose and treat you. They all talk to each other if there are any questions.

Back when I was young and athletic in the 80's and 90's, I used to go skiing with Club Med in Colorado (an awesome vacation every year for seven years). One year, I was put in a group of skiers which included several doctors, a nurse, a few others, and me. It snowed overnight so we went skiing in the back bowls to enjoy the fresh powder. This entailed a hike up over a ridge in loose snow at about 14,000 feet (gasping for breath), over the head wall singly, and reconnect as a group with the instructor last to clean up any debris (skis, poles, hats, gloves, etc) to ski down for a mile or two, take another lift back up to ski down the front side of the mountain.

All went as planned. Each of us went over the head wall and into the loose powder (and you say 'why is she telling this story' - be quiet there is a point here) and across the flats. Last came the instructor, schussing across the flats, until his ski hit a rock just under a thin layer of powder where the wind had blown off the other foot or so of snow. He did your basic rolling fall with equipment going everywhere (similarly to 'the agony of defeat'). We started back to help pick up everything and give him a lot of sass for it.

All jokes ended when we saw the blood pouring out of his face. In a rather inaccessible place in the mountains, he caught a ski pole in his face and ended up with an 'Al Pacino Scarface' injury. The doctors stood and gaped and said they hadn't seen anything like that since internship. The nurse ran to his side and started yelling for clean tissues, napkins, bandanas, anything to apply pressure and stop the bleeding. The nurse knew what to do. She fixed him up and rode the chairlift back up with him and went with him to the clinic where he got five stitches in his face. The doctors went to lunch.

So on that sunny day on a ski slope on the backside of a mountain in Colorado, the nurse was the winner.

Now when I go to see my PCP or oncologist, I often see a nurse practitioner. When I see my pain doctor, sometimes I see his physician's assistant. Its not that big a deal. Particularly with my PCP, if I have a new ailment and need a visit as soon as possible, I'll get one of the nurse practitioners. I could wait a week before seeing my PCP or see the nurse practitioner. I'm happy with the sooner visit.

Think of this as well. Do you remember going to the dentist and the dentist cleaned your teeth? Now a hygienist cleans your teeth and a dentist does fillings and other nasty things with drills and pointy things. When I go to the eye doctor a technician checks my vision and glasses prescription and the ophthalmologist checks my corneas.

All this is for quicker medical care and more use of specialized training in different parts of the medical world. I'm all for it - I want the quicker access to medical care.

Friday, April 25, 2014

Preparation

I have to get prepared. For what you might ask? Doctor appointments. On Monday I meet with my pain management doctor. I need notes to ask him questions. If I show up with a list, he wants me to read him my questions and then he answers each one. If I do not remember my list, I sometimes feel rushed with him. He has a very efficient manner so, in his efficiency I sometimes do not get all my questions answered because I forget to ask them.

My questions for him will cover my (annoying) back pain. My lower back pain is caused by my degenerating disks. It only happens if I bend over or attempt gardening (which I love) or sweeping, shoveling or vacuuming (which are  optional activities in my life). The decision will be do we do more needle treatments or not. Probably not.

My upper back pain is caused by fibromyalgia and myofascial pain. We can do more needles and things but they can be very helpful. The problem is they make me uncomfortable for a few days and we are going away for our anniversary (and will have a house/cat sitter so burglars don't get any ideas).

On Wednesday I see my rheumatologist and I have a big list for her. What to do about numerous body parts and their aches and pains. Do we stay on the same medications or do we switch or add others? I don't like the idea of more medications but I also want less pain in my life. And sometimes the side effects (mouth sores) of my current medications make things like eating difficult. Not that I wouldn't mind eating less and losing weight but its the pain part that I dislike.

I need my list for both or my chemo brain/fibro fog/whatever will not allow me to recall a damn thing when I get there. My life is full of some many adventures isn't it?

Thursday, April 24, 2014

Yes that is too expensive

The UK's, NHS has said they won't pay for Roche's new Herceptin like drug called Kadcyla because they have deemed it too expensive for what it does. The cost is a paltry 90,000 pounds or just over $150,000 per patient and it extends a woman's  life with metastatic breast cancer a median of 5.8 months.

Currently there is the Cancer Drug Fund which  will pay for the drugs in the UK that are not covered by the NHS but that fund runs out in 2016. The decision is being criticized by Roche and some charities saying that the NHS has turned down too many breast cancer drugs recently. But I really think the cost is out of line.

No you cannot put a price on someone's life as I have stated before but this is a bit much. My complaint here is with Roche and other manufacturers who price their medications so high, and essentially put a price on a patient's life. The claim is that development for new drugs costs so much that the prices end up so high.

Roche's sales in 2013 were over $50 billion with profits of around $17 billion. So they can't use some of those few billions to pay for the development costs of other drugs? And the shareholders saw their dividends increase by 6% from 2012. I have zero sympathy here. But I am sure their shareholders  nd executives are happy.

And let me guess if they can't get this price overseas, they will charge the American patients the full price.

Wednesday, April 23, 2014

You can call me a wimp

Last night I got together with two friends - one of whom I haven't seen in over 30 years. We were laughing about the fact that when we last got together we were too young to drink in a bar legally. The other friend is one who I have kept in touch with pretty much all through the years. We both have RA but her's is much more under control than mine, or maybe my fibro and back pains make me more complicated.

We caught up on life and loves over the decades. My RA friend's husband is dealing with stage IV colon cancer and is in clinical trials because there is nothing much else left. Based on my other friend's reaction to that news, which was surprised, supportive, and dismayed, I was unsure about sharing all my health news. I said my health is horrible but I'm still here. I skipped the cancer parts.

Why was I hesitant? Because once burned, twice shy. I have been burned too many times but old friends who run from the word cancer. We already have plans to get together again so I'll wait and decide later.

But in the meantime, you can call me a wimp.

Tuesday, April 22, 2014

A stupid idea in my opinion

So would you wear a breast cancer sensing bra? Or even add a smart device to your bra that would be an early warning for breast cancer? I think this is stupid.

The premise is that self exam and mammogram compliance is not 100% that this way your bra or a gizmo attached to it can detect breast cancer early. Hmmm.... Nope. No way.

Personally I wouldn't wear one if you paid me. I think it plays to the insecurities of all women who are scared they might develop breast cancer.

The developers of this gizmo have raised $560,000. It has the CE mark so they will start selling them in Singapore. This brainstorm  is because the Singapore government gave away 10,000 mammograms but only 30% were used so they feel the need is there. So are women in Singapore who didn't bother to get a free mammogram going to wear a gizmo on their bra? I am not so sure.

It still needs to get through FDA trials here and will take a few years but I won't be buying one. Sorry. I think this is an idea that had good intentions, but not going anywhere.

Monday, April 21, 2014

Its Boston Strong Day

Here outside of Boston, it is Patriots Day, Boston Marathon Day, and one year since the explosions last spring. In the past year, the city and surrounding suburbs have gone throug a good deal of trauma where entire communities were told to shelter in place as the bombers were hunted. It was a very traumatic time.

Due to the explosions, hundreds of people lost their limbs - legs and arms - and lost their hearing or other permanent injuries. Four people were killed, three by the explosions, one shot by the bombers. A fifth fatality was announced last week as a police officer died while working out as a result of injuries sustained last year.

Today it is a perfect running day for the 118th Boston Marathon. It will start in the mid 40s and end around 60, with blue sky and lots of sunshine and a little sea breeze. I hope it is not marred by more terrorists.

Also it is Patriots Day where we celebrate the 239th anniversary of the start of the American Revolution. There will be celebration and reenactments of the first battles. These patriots show us we are still proud of our country and if we can keep the British at bay, we can also keep the terrorists away.

Its Boston Strong Day around here. We should all be proud.

Sunday, April 20, 2014

Sad phone call

This morning I had a call from a friend who is in my breast cancer circle, N. She called because another friend from the same circle, B, is in the hospital and being moved home in hospice care. We all knew this was coming. B has been slowly going down hill since being diagnosed with metastases in early 2013. It is sad.

We talked about another friend who died of breast cancer last year. At the time B told N that something about she knew she was next. The downside of having a network of breast cancer friends there are some who go to stage IV at and then eventually they slowly go. 

I know a lot of women who have breast, or another type of, cancer. They all understand what happens with cancer and its progression. Some I know in person, like B and N, others I may have met a time or too, like J who is one year out from a stage IV diagnosis after 15 years clean since her original diagnosis, and others who I only know online. However closely I know them or at what distance, we know these calls and emails happen.

It was a sad phone call this morning. I hope to visit B soon. N will tell me after she sees her today when she would be up for a visit. It is a sad situation which I know will be repeated again and again.It is sad but it is also part of the circle of life.

Saturday, April 19, 2014

Stability

The goal of most medical ailments is either stability or remission, where the ailment isn't getting worse or is actually improving. It is kind of a happy place where you almost get to feel normal again. But we know you can't go home again so normal is a relative term.

However, I had the opportunity to speak with the nurse at Accordant care yesterday. She is provided through my health insurance and is available for my support whenever I want. It has been a while since we did catch up so we had to review a lot. At the end of the conversation she said "you seem to be doing pretty well these days". I had to stop and think. But yes I am.

I mean other than my evil 9 day stomach flu, I haven't been hobbling around and my body has mostly cooperated when things that I wanted to do. I haven't tried to run a marathon or anything but I have been able to do most of the things I want and not end up in pain in bed for a few days. This is good. This means that both my fibromyalgia and RA are behaving themselves which means I can behave myself less and do more of the things I like to do.

All my other ailments, that cancer crap, seems to be behaving themselves as well.

Now I am not running a marathon, as I said, but I might want to climb a small mountain or something. Or maybe I'll settle for a big hill. Or even a long walk.

Friday, April 18, 2014

Marketing to the patients

I know pharmaceutical companies are trying to market direct to companies through their ads on TV which include the low voiced list of possible side effects and the single page ads in magazines followed by two pages of fine print. We have all see them. Now I am seeing something different.

Yesterday I received an email inviting me to a webinar fun by Pfizer on one of their new medications for RA:

"Exploring Rheumatoid Arthritis – A Live Studio Broadcast Event

Join us on Thursday, May 8, 2014.

If you’re one of the hundreds of thousands of adults living with moderate to severe rheumatoid arthritis, Pfizer is hosting the first live event designed to explore ways you can help treat your RA.
You will of course learn more about XELJANZ, first in a new class of oral treatment for RA.
Xeljanz is a prescription medicine called a Janus kinase (JAK) inhibitor. XELJANZ is used to treat adults with moderately to severely active rheumatoid arthritis in whom methotrexate did not work well. It is not known if XELJANZ is safe and effective in people with hepatitis B or C. XELJANZ is not for people with severe liver problems. It is not known if XELJANZ is safe and effective in children.
We’ll also listen to personal RA stories from patients being treated with XELJANZ, explore ways to change the conversation with your healthcare provider, and take a more active role in letting your healthcare provider know what's important to you.
May 8, 2014, could be an exciting opportunity to learn about rheumatoid arthritis and XELJANZ. Register for a live event or an online program now!"

Hmmm.... I thought. I am still thinking.They are promoting it as an educational event which of course will include information on Xeljanz. Do I want to attend? I am not sure. I would be happy to learn more about RA but not sure if I am interested in learning about a new medication.

And do I have moderate to severely active RA? And my methotrexate is working as far as I can tell. But its an interesting marketing tactic.

Thursday, April 17, 2014

Blood test for breast cancer

I find this exciting news. A new blood test has been developed which can show if breast cancer has spread and if it is responding to treatment.

It seems silly in this day and age that we can only find out if breast cancer, and many other cancers, have spread by waiting for symptoms and looking for signs in imaging tests. We have to wait for it to show up and cause problems. Doesn't that sound archaic? Get some leeches too...

Medical advances have come a long way in recent years. An operating room resembles a space ship cockpit in some ways. There are robotics and little head sets and all sorts of things. But we still have to wait for symptoms of cancer....

Wednesday, April 16, 2014

Self-management

So what does self management mean to you? In terms of your health conditions, if any? Last fall I took part in a survey on this very subject. I don't recall the survey itself but I was sent an email telling me that I did so I guess its true.

It was an Open Research Exchange by Patients Like Me. The survey was called "Perceived Medical Condition Self-Management Scale". They asked patients with a range of long term conditions - from RA to Crohn's and diabetes.

The questions covered topics from how often you take medications vs. how often you forget and not running out of pills before getting a refill. I was glad to see a lot of us are human and occasionally forget to take them.

Two take-aways for me are:
  • Self management hinges on being knowledgeable about your disease and being your own self advocate.
  • It also involves not just the physical aspects of the disease but the mental aspects as a coping mechanism.
Some interesting concepts here, worthy of some thought.

Tuesday, April 15, 2014

Some lessons to learn

We can learn some lessons here. In the US we are busy being annoyed with the new healthcare system or happy to use it. But we have it and have to learn to live with it or legislate it into something else.

I did not know this but Germany has a very similar health care system with the same issues - trying to reduce costs. We are busy thinking we are doing something new but we aren't. Except for a few differences, it already exists pretty much.

I am not saying the German system is perfect. But if you read about it, there are some key similarities.

My point is that while we are trying to reinvent the wheel we can learn from others who have already done so.

Monday, April 14, 2014

My goal this week is to go to work

In the past two weeks I have worked 12.5 hours. I usually work 15-18 hours/week so you can say I am a tad bit 'behind'. My job isn't the kind where I have these huge looming deadlines but one where I have a consistent pile of projects that I keep digging away to keep under control. So now all my projects are behind.

When I went out the door on Friday (and I NEVER work on Fridays - this gives you an idea of how far behind I am), I said to my boss, instead of telling him when I would be in next, that my goal was to go to work this week. He laughed. But it is very true.

I am going to work today on a Monday. I almost never work Mondays. My preferred work week is Tuesday, Wednesday and Thursday, from 8-2. A nice 18 hour work week. It gives me a four day weekend.

This weekend was a two day weekend. I hate two day weekends. I don't get enough rest. So today I am going to work for about four hours and then to the gym. I will be home around 2 I hope. Its supposed to be a beautiful spring day and I want to get out and enjoy it.

But I have to go to work this week.

I do have a secondary goal. I do not want to go to a medical facility this week. I have been driving both my parents to their appointments - my sister has been helping too. I have been at a medical facility approximately 3-4 times each week for the past month or so. This is between driving them and visiting my father. This has contributed to work rescheduling and working on Mondays and Fridays as well.

I need a break  from medical facilities.My brother is visiting this week. His role is that of chauffeur and deliverer to all medical appointments. My sister needs to get some work done on her car and this is her chance as well. Next week we will return to driving them after our break. I might even be caught up at work by then.

Sunday, April 13, 2014

Pain tolerance

Or am I a whiner? Recently I have taken both my parents to doctor appointments. I have actually not just driven them but actually talked to their doctors with them and about them. I have now know their blood pressure and all that and heard them answer the questions are you safe at home (yes) and what is your pain level today.

I have learned that my father doesn't have pain which makes sense because he has pneumonia. My mother has pain which has been a 6 since her vertebroplasty to fix a crushed vertebra, before then it was an 8 or 9. She also has rheumatoid arthritis and a bad back - with three other previously crushed vetebrae. This is the part that makes me think.

I also have rheumatoid, fibromyalgia, degenerating disks in my back, and lymphedema in my arm which sometimes likes to act up. When I go to the doctor, I say my pain level is usually around a 4, on a good day, it might even be a 2. Sometimes its a 6 or 7, and occasionally flares higher.

I know its just a number but am a whiner? I have more heavy duty pain drugs than my mother. Do I have them because I said my pain numbers were higher because I am a wimp?

When they ask you the question at the doctors office it is completely subjective. And my pain is fickle. Sometimes its there, and then its gone. Sometimes I feel fine and then I sit in a bad chair in the waiting room and I can barely move when I try to stand.

I recently read an article on WebMD on pain tolerance. "Pain tolerance is influenced by people's emotions, bodies, and lifestyles... Biological factors -- including genetics, injuries such as spinal cord damage, and chronic diseases such as diabetes that cause nerve damage -- also shape how we interpret pain...."

I know I need to lose weight which will help with pain tolerance and the pain itself. But the two people who contributed to my genetics seem to have a better handle on pain itself. Maybe they just gave me the wimpy genes.

Saturday, April 12, 2014

That took a while

I missed April Fool's Day this year because I slept through it. I had a stomach flu. Then I felt a tiny bit better. Then I started running a temperature up to 102.5. Then I stayed in bed for two days. Then I went to the doctor - that was on Monday. The verdict was I had a stomach flu that took me days to recover from.

The doctor took blood work and did a urine test to make sure I didn't develop anything else while recovering. Because of my immune system with RA and being on methotrexate, my body takes a really LONG time to recover from anything.

I didn't start feeling like myself and getting my appetite back until April 10. That would  be 9 days of being sick, having no energy or appetite and feeling like crap.

I am supposed to work 15-18 hours/week. I have worked a total of 12.5 hours in the past two weeks. When I left work on Friday, I said my goal for the coming week is to actually come to work.

I lead such an exciting life. And I'm blogging about it. And you are reading about it! I think I need something more exciting to write about.

Friday, April 11, 2014

I'm taxing my brain here

These Internet hackers have to stop! They are taxing my brain! The latest is the heartbleed virus or bug or whatever it is that is forcing all of us to change our Facebook, Google (which includes Blogger, Google plus, Youtube and all sorts of other places), Yahoo, and Wikipedia among others. This is very annoying.

To reset passwords, its not as easy these days as logging in and going to account settings and bingo you are done. First they want you to remember your old password - I have no idea. I set up everything so the computer remembers it for me. Then you need to come up with a secure password which meets their criteria of enough characters, but not too many, with capitalization, numbers, and 'special characters'. Sometimes they insist on sending you a text to verify you really are you. And the new password can't be anything you have used before.

Then you need to go around and update all your devices where you use these accounts. My laptop, tablet, nook, and phone to start.

Finally you need to remember the new password. Do you have a secure system for saving your passwords? Do you keep it in an unsecured document on your computer? Do you keep it in a bunch of little cards where they are written down and scribbled updates? Do you hide it in your address book?

I have no brain. So when the world converted to the digital age from the analog one. I kept my Rolodex. It contains a few addresses that I haven't transferred and my passwords. I feel this is a very secure system. If a burglar breaks in they have to decipher my handwriting and figure out which website each belongs to. I feel this is very secure. But it has its drawbacks.

I have to remember to update it. And that doesn't always happen. I have to walk over to it and update the information. I know that recently I opened a new credit card and set up an online account but I didn't write down my log in information. I am a loser. I'll have to remember it to pay my bill, or just reset it this month when I pay.... Just like I did last month.... And the month before...

But all of this is taxing my brain. I have no brain. This is a known fact. I can't remember shit. If you tell me something today, I can guarantee I won't remember it tomorrow. I have to go write down my new passwords now before I forget and my brain is overtaxed for the day.

Thursday, April 10, 2014

Compassionate Use of Medications

We have all seen the horror stories in the news 'My child will die with out this medication' or join Susie's Army on facebook to lobby the company to allow her to get their new drug to save her life. They seem like a good idea at the outset but not always.

This is called compassionate use of medications which is often allowed by the FDA and provided for by drug companies as they bring new drugs to the market. A drug isn't quite ready but the patient might actually benefit from it. It would be wonderful if the drug companies and the FDA could okay every request but it doesn't quite work that way.

First of all the FDA approval apparently is not the issue in many of these cases. The problem often comes from the companies themselves. If a company is getting a drug ready for market, they make enough of what they need for the next step in their clinical trials and allow for a little extra for these cases or whatever reason.

So they simply might not have any more doses to give out without going back into production - which can be VERY expensive. Think of making cupcakes for 24 people. All of a sudden you need 25 so you have to start all over again for a single cup cake. A lot of effort for a single cup cake.

Second of all, social media may not be a big help at all. Social media has created 'patient's armys' full of well intentioned people who do things like threaten the lives of the pharmaceutical executives. That doesn't exact endear the patients to the pharmaceutical companies.

This is a growing problem. New drugs seem like they are the solution for the patient but they still are not completely tested. Could they lead to more problems for the patient down the road?

There is lots more to this. Go read this article on Drugs for the Dying and see a few stories up close.

Wednesday, April 9, 2014

Medical advances come at a cost

We hear about these great new advances in medicine that are finally released on the market. Maybe its a new drug, a new test, a new device. It doesn't really matter. It is hailed as progress. But progress often comes at a cost - we are slowly learning.

When any medical advance comes with a price tag, the question is then who pays? It comes from one of two places - the patient's pocket through a higher payment or through the insurers pocket which really means all of us pay for it.

So new diabetes pumps were introduced that offer more features, blah, blah, blah. The medical device marketing companies promote them heavily to patients. Each one costs $2500 and has a planned obsolescence every three years. Insurance companies will replace them every four years.

Diabetes is not an inexpensive disease. Patients with insurance spend more than $4000 annually even with insurance. Another $20,000 plus is covered by insurance (or the rest of us). This is called progress.

What kills me about this in an age where recycle/reuse has become more and more important, why are companies introducing something that has a planned obsolescence in three years? Wouldn't it be better to create something that might be upgradable and would last ten years? Thus reducing costs for all of us.

So every time we hear about a new medical device, tests, medication or whatever, we need to ask ourselves - what is the cost? Being covered by insurance is not the right answer.

The real answer should be: the per patient cost per dose/year of coverage is $X so we can see the real cost. Transparency should be required for all new advances and all new developments in the pipeline should have a plan for end patient cost that is justifiable and medical devices should focus on long term use instead of planned obsolescence.

Tuesday, April 8, 2014

A Way to End the What Age for Mammograms Controversy?

Work with me here, what if everyone could agree on one option for the mammogram controversy? Wouldn't it make a lot more sense? I mean there has been so much ink about this single issue. On one hand is prevention and on the other is over diagnosis and false positives, with a lot of other data, crap, history, and arguments added on to each. So what is the real answer?

I believe JAMA has the right idea here. In the age of personalized medicine, why are we hung up on cross the board requirements? JAMA suggests that we "Stop One Size Fits All Mammography".

"A woman's decision to undergo mammography "should be individualized based on patients' risk profiles and preferences," concludes a systematic review of 50 years of breast cancer screening data, published in the April issue of JAMA.

How to best go about achieving that individualization is not entirely clear, but clinicians need to make an effort with the tools that are currently available, such as decision aids and risk models, 
suggest Lydia Pace, MD, MPH, and Nancy Keating, MD, MPH, both from Brigham and Women's Hospital in Boston, in their review."

Their argument is that a woman should be able to make a decision on mammography with their doctor based on their risk. The problem is that current science does not allow us to accurately estimate all women's risk of breast cancer. So the problem isn't with mammography but with the ability to predict breast cancer.

Before we jump ahead to that issue, let's stick with making mammography a personalized decision. I think this is a great idea. If someone has a high risk background, they should start mammograms earlier. If they do not have one, they should decide with their doctor when they should start them. Insurance companies should cover them regardless. There doesn't have to be a national rule on when they should be started.

Now switching to being able to predict breast cancer. We can't really. The BRCA genes allow us to predict women who are high risk but that does not cover all women who will get breast cancer, really less than 10% I believe. There can be other risk factors, family history, genetic background, and more.

Since we can't really tell who will or will not get breast cancer and may never be able to, we do need to use whatever screening methods we have. Until we have something better than mammography, it is our tool to use as best we can. But it should be the patient's choice and not the insurance company's.

Monday, April 7, 2014

So far good news but

Pfizer has developed a new drug called palbociclib (until it gets renamed by some team of marketing geniuses through some in depth market research and then gets a color, fancy packaging and more) that has provided some positive results in a small phase two clinical trial. I am not writing this  in terms of an overwhelmingly positive result because it isn't.

It is for one of the most common breast cancers - ER positive, Her2 negative - when they have become recurrent or metastatic. In some headlines the media has gotten hold of this and pumped up the results to be something else but we must remind ourselves of a couple of things before we run in circles thinking that it is that huge a game changer:
  • It was a clinical trial of 165 women.
  • Of those 165, many had their dose reduced because of side effects 13% dropped out of the study because of side effects.
  • But if you ask the doctor who ran the study, the drug was generally well tolerated.
A few more details. The drug delayed time before disease progression from 10.2 months to 20.2 months. Those who took the drug lived an average of 37.5 months compared to an average of 33.3 months in the control group - who received Femara (letrozole).

Breast cancer specialists who were not involved in the study are cautiously optimistic, as am I. It was not a blind study meaning that the doctors who ran it knew who received the new drug. And it was so small.

"A big question is whether Pfizer will be able to win approval of the drug based on this study. The Food and Drug Administration normally requires larger Phase 3 studies, but sometimes makes exceptions for drugs for cancers and other life-threatening illnesses.

If Pfizer can get early approval, the drug could probably reach the market next year. If the company must complete a Phase 3 study, which is already underway, approval might be delayed a couple of years, according to the ISI Group.

Garry Nicholson, president of Pfizer’s oncology division, told analysts on Sunday that the company “can envision the possibility” that the data from the Phase 2 trial would be sufficient for approval. He said the company had not gotten far enough in its discussions with the F.D.A. to be able to decide whether to seek approval now, however."

Pfizer wants the approval so they can start marketing it asap. And their investors aren't happy as it didn't live up to the initial expectations of  26.1 months vs. 7.5 months presented halfway through the trial. So now they have more pressure to get it on the market.

The FDA has previously given approval for drugs after Phase 2 trials but not always successfully? Avastin is a good example. It was approved for breast cancer after Phase 2 trials and then pulled from the market three years later, in 2011, because it showed it did not work after all. On the other hand, other companies have other breast cancer drugs in development.

So while I am happy to learn about this good news, I am hesitant because I firmly believe it needs more testing. This result is just too small to show us enough. Its not ready yet. We must have patience here.

Sunday, April 6, 2014

Neither rain, nor snow, nor sleet, nor hail, nor cancer....

Shall stop the blogger. But a pesky cold? Yes.

I have not been doing well this week. I had a nasty stomach flu for 24 hours on Tuesday and it has left me with a fever and generally crappiness (yes that is a technical term). I worked a grand total of 3 hours last week. Instead of my normal 15-18. I tried to go to the gym one day and was less than successful. I had planned to go away for a girls weekend and didn't.

Friday I got my nails done and that was it. Saturday I got out of bed for 30 minutes to prove that I could. Then I got back in bed and slept for the day. Today I got up, took as shower, ate some food and am now back in bed.

My father is convinced I got something when I was at the ER with him last weekend for 8 hours. I doubt it. But he wants nothing to do with me until I am better.

My husband is taking very good care of me. He makes me food. He brought me flowers (which the cat tried to eat twice and threw up twice). I hope for more ice cream today.....

The real problem I am left with is a temperature. I took it one dat last week and it was 99 and figured no big deal and ignored it. Then it started getting more interesting - up and down, from 98 to 102.5. So when do I call the doctor about a temperature?

I think normal people wait three days. My immune system is not normal and its been longer than 3 days so maybe I'll call tomorrow.

But I'll keep on blogging.

Friday, April 4, 2014

Some words of advice to those who don't want the world to know they have cancer

I started this post in mid-2009:

Over the years, I have collected my share of surgical scars - there were the ones that everyone could see and I didn't really care, like knee surgery, or the ones that were so old, like thyroid cancer, no one could see them.

Then breast cancer surgery made all sorts of fun scars. Like a giant port scar on my chest (which they cut into twice just to make sure it really shows) for insertion and removal. The one where they took out lymph nodes by my arm pit (that they also cut into twice so it really shows) once for sentinel node and once for axillary node to make sure there were no more cancer cooties and is visible with a tank top.

Then there is the lumpectomy scar, and the other lumpectomy scar, and the third lumpectomy scar which are usually covered at all times but receive radiation so they really show. Finally, there are the connect the dots on my abdomen from my hysterectomy and my four incisions for my gall bladder-ectomy.

In the midst of all the surgical fun and games, I stopped getting changed at the gym at those few intervals when I actually went. I didn't want everyone to see my scars. I was very careful not to let anyone see anything that might scream out 'SHE'S A CANCER PATIENT' so I made sure I remained clothed. Swimming in public is not an option really these days for similar reasons.

One night I had a brilliant idea and I said to my husband 'I'm going to get up tomorrow morning and go to the gym at 6 am'. Well this was a great idea at 8 pm but not at 6 am. Big surprise, it didn't happen. Then I got a brainstorm, why don't I leave work a little early and go to the gym on my way home before my hair cut. So I put together my bag of clothes and went off to work. I left work on time, didn't get stuck in traffic, and even got a decent parking space at the gym.

I went into the locker room to get changed, which was moderately full, and as I was half dressed, I remembered my connect the dots scar issues. I thought 'what if someone sees my scars????' so I resorted to the really mature 'get-dressed-as-fast-as-you-can-and-pretend-no-one-saw-a-thing'. I always believe in pretending things didn't happen and they don't matter. I know its not mature but it works for me.
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Now its 2014, someone had a blog post recently on surgical scars and showing them.I found this draft post and have done some thinking:
  • I am much less paranoid these days. I have decided that no one can tell if I am a cancer patient unless I tell them. 
  • I am much more relaxed these days. I can actually talk about having cancer with total strangers.
  • Finally, surgical scars are better thought of as badges of pride than of shame.
Now I get changed at the gym and even wear my lymphedema sleeve in public with out a care in the world. 

Time has allowed me to change how I feel. The old adage is true, time does heal all wounds... except sometimes that word 'all' should be changed to 'most'.

Thursday, April 3, 2014

New Guidelines for Life after Cancer

The Spring issue of Cure Magazine has an article on the new guidelines for life after cancer from the National Comprehensive Cancer Network. Sometimes I just want to say 'its about time'.

The article provides a nice overview and is a worthy read. But I do feel it is way late. Why does the medical profession feel so vertical? In the days of personalized medicine, isn't the patient's entire body supposed to be of concern? Each specialist only seems to deal with their little focus and not that of the entire patient.

A cancer diagnosis is not the same as a chicken pox diagnosis and leaves a life long impact. The new guidelines show a new way of thinking. If no one asks about it, how will it become known as an issue?

'To develop the new guidelines, the NCCN engaged experts in oncology from throughout the country. During the course of a year, they split into working groups—one for pain, for example, another for sleep issues—and reviewed the scientific literature on how to assess survivors’ problems and intervene in a meaningful way. Focus areas included:
  • Anxiety and depression
  • Cognitive dysfunction
  • Exercise
  • Fatigue
  • Immunizations and prevention of infections
  • Pain
  • Sexual dysfunction
  • Sleep disorders
The guidelines were then developed to give oncologists, primary care doctors, nurses, social workers and other healthcare providers an easy-to-follow structure. At the first level, providers might consider asking a few simple questions.

To check for anxiety and depression, for example, the provider might ask:
  • Do you often feel nervous or do you worry?
  • Do you often feel sad or depressed?
  • Have you lost interest in things you used to enjoy?'
It seems almost too logical and clearly in the category of "why didn't we think of this before?"

There is a lot of reliance on the primary care physician who is supposed to care about the whole patient. At this point, I see my primary care annually and see all the specialists more frequently. While they focus on their part, its only when I get to my PCP, that my whole body and being gets discussed. And last year due to scheduling issues, I saw her nurse practitioner, who is nice, but not the same. I do like having my annual physical with my PCP.

But back to the new guidelines. I think its time for me to start making a list of my issues that relate to the focus areas to make sure I am prepared for my appointment... In July.

Wednesday, April 2, 2014

Leading by example

You know when you go to your doctor and they tell you to eat a healthy diet and you stop at the cafeteria for lunch before your next appointment and they offer fried chicken and fries with a danish for dessert. Well now that is starting to change. The newest trend for hospitals is to become healthier themselves.

No more Dunkin Donuts in the hospital lobby for one. No more fried anything for most. This is part of a new initiative started in 2012 nationally to make hospitals healthier instead of contributing to chronic illness through unhealthy food options. This includes reducing red meat consumption and providing more vegetarian and fish options. Hospitals are also encouraged to try to source food locally. Some have even started rooftop gardens.

In addition, hospitals are taking steps to reduce waste, use of toxic chemicals, more efficient heating and cooling systems, safer chemicals in cleaning products, and increased recycling efforts.

I am very happy to hear this as this is a trend toward 'practicing what they preach' instead of 'do as I say, not as I do'.

I have noticed this at the local hospital where I go. They provide water stations through out the building where patients, visitors and staff can refill water bottles or provided paper cups. Recycling bins are evident. Food choices are leaning toward healthier choices and the cafeteria salad bar has expanded greatly. I had a yummy salad there the other day which was full of sunflower seeds and other healthy options.

This should be the way of the future. I would hope to see all these efforts visible at hospitals nationally and at other commercial and industrial buildings.

Tuesday, April 1, 2014

Stupid stomach flu or how having ailments complicates everything.

I woke up at 430 this morning running to the bathroom in one of the inglorious sprints that have happened to all of us. Eventually I returned to bed and informed my husband I was going nowhere today. And the delicate cat wanted to sit on my stomach.

My husband was concerned but went out the door and I went back to sleep until 830 where I struggled mightily to be functional and eventually called work to inform them I would not be available today. My coworker who answered the phone recommended warm flat ginger ale. That sounded very good. I did try some ginger tea but it just wasn't the same. I normally try to live on the BRAT diet when not feeling well but the tea did not sit in my stomach and I tried a tiny nibble of a banana with the same result.

Between bathroom sprints I came up with two things I needed - warm flat ginger ale and something OTC that I could take to stop my sprints - that hadn't expired in 2008 or 2009 which is what we had in the bathroom. Between dashes, I was returning to bed in my pjs.

With that decision made, the next one was 'can I really go to Walgreen's in my PJs with a fleece over them'? I made the executive decision that I wasn't THAT sick and did manage clean clothes.

Its approximately 200 yards from my front door to Walgreen's. But I drove. I stumbled around the store looking for  the digestive ailments aisle where there are two options - Immodium and Kaopectate. I tried reading the labels but there were all sorts of conflicting things on them

One said not to take without consulting a physician if you are on arthritis medications and the other said not to take if you have liver disease. I don't have liver disease but my liver numbers are closely supervised because of my other health ailments.

I went off to ask the pharmacist where I was told I can't take Kaopectate because it conflicts with my arthritis medication. And Imodium is not that good an idea because of liver issues that I can take it but the least dose possible.

One item down, I went to look for ginger ale. I checked the cold beverage section and it was full of Pepsi Cola products and Coca Cola products and a bunch of weird 'waters'. They didn't have any ginger ale. How can that be? I checked the shelves in the food and beverage section and none there either. I left astonished. Ginger ale is a healthful beverage for upset digestion systems.

Out in the parking lot, I thought where to next? The grocery store would have it but that was a whole mile and I really didn't think I want to deal with a big store. There is a smaller convenience store right up the road that might have it. If not, I was willing to bet that the liquor store had it for mixers.

The convenience store did have it. I grabbed three bottles and went to pay. $5.40 and I had no cash. The little sign said '$7.00 minimum on cards'. Crap. I thought about buying another but the owner had sympathy.

Home at last where I downed my child's portion of Imodium and opened my ginger ale to warm up and go flat during my next nap. After more naps, I am beginning to feel more human. The warm flat ginger ale seems to be staying in place.

I am exhausted. Why isn't my life ever easy?