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?

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.

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!

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.

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.

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?

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.