Friday, September 19, 2014

The Pessimistic Side of Curing Cancer

Two blog posts caught my eye this week on the problems with finding a cure for cancer. There is lots of hoohaa going on with we can cure cancer. There is even the deadline(?) of 2020 to find a cure for breast cancer. But here is a look at the other side of finding a cure for cancer.

The first article is on "Coming Together to Fight Cancer" that lists the five issues involved:
  1. Cancer is not one disease. Its many diseases. 
  2. There is a lot of effort going into treatment - chemotherapy, surgery, and radiation. Those are not cures. And a lot of the diagnostic advances (CT/PET scans) are also cancer causing tools.
  3. Modern life styles are contributing to cancer rate increases - 10 fold in the last century.
  4. There is not a lot of political will behind it. Politicians only care about the things that get them votes. They may say they support curing cancer, but is there budgetary support behind those words?
  5. Apathy. Those touched by cancer range from rabidly vigilant to fairly laid back on their stance on finding a cure for cancer. But the lack of action prevails.
The next article refers to cancer as "An Unstoppable Killer: New Research Shows Cancer Cant Be Eradicated". Think of it this way. Cancer cells have been known to form going back millennia on the simplest of beings. So if they form on very simple organisms, could they be part of the intrinsic basis of life? If so, can we cure cancer without destroying some of the very basics of life? There is a lot more detail in the article itself so please read it.

Now all that being said, what can we do if we can't eradicate cancer? We can help lower the rates of cancer by returning to simpler lifestyles without chemicals, synthetic food made of chemicals, no tobacco use, more exercise, etc.

What if we tried that? In Australia, there used to be soaring rates of skin cancer. Now there has been a dramatic decline. Why? They started promoting sun screen use, put shades over public pools, encourage people to wear hats etc. That doesn't sound hard does it? A few little changes can make a big difference.

Remember the big hole in the ozone? With the decline in use of aerosols and pollution reductions with the Clean Air Act, the ozone hole is in showing signs of repair.(I read it somewhere this week but of course I cant find it now.)

So lifestyle changes may be able to help decrease cancer rates. If we can't cure it, maybe we need to focus  on decreasing its presence.
So instead of spending billions on expensive medications that might extend a patients life by up to six months, what if those billions were spent on promoting healthier lifestyles and

Thursday, September 18, 2014

Celebrating more birthdays

The American Cancer Society has/had a campaign on celebrating more birthdays. Really its just another way of saying 'another year on the right side of the daisies'. I'm all for it.

There have been times in my life where I would think 'if I make it to X, I'll do Y'. I was going to have a party 20 years out from my first cancer diagnosis, then 25 years out. It still hasn't happened.

But it was thrown off course with a second cancer diagnosis 25.75 years after the first. Is that right? I'm doing math in my head early in the day so I'm not sure. But I think it is after counting on my fingers a few times.

That means I had 25 years of more birthdays in cancerland. Followed by 7 years of more birthdays in double cancerland. (We are not hoping for triple cancerland.)

What is the significance? I'm not sure. I am at a time in my life where I feel I hear about more and more friends who do not make it. Last weekend an old high school friend who I haven't seen in decades died in his sleep at age 52. And he had no apparent health issues. How sad.

But now I am celebrating more birthdays and enjoying it. If you must know I am 37 again. And I'm still here.

Wednesday, September 17, 2014

Life in pain

Recently the National Pain Report did a survey on women in pain. I was one of the 2400 some participants... You can read the results here if you wish.

I have a few takeaways from the survey:
  • If you aren't happy with your doctor, for example they tell you your pain is all in your head, it might be time to find a new doctor.
  • If you have problems with the side effects from your pain medication (constipation is common with opioids, for example), it might be time to find a new medication. I am on an opioid pain patch and do not have constipation issues (if you must know) but I get a lot of pain relief with it.
  • It is nice to know I am not alone with multiple pain issues
  • Women do feel pain differently then men.

But then it is sad to know that women still feel discriminated by the medical system.

But we are all still here....

Tuesday, September 16, 2014

Why don't we all have cancer?

As a cancer person, do you ever have those 'why me?' conversations with yourself? Well apparently everyone should really be having the conversations with themselves of 'why not me?'

I found this video on twitter, thanks to Matthew Zachary of Stupid Cancer. Its nine minutes of worthwhile watching. The host is a fairly interesting presenter.

So what did you think? Why don't we all have cancer?

Monday, September 15, 2014

Germs, germs, germs, and more germs

Germs are everywhere. We need the good germs to build our immune systems. I am not a germaphobe..... You will not find me using hand sanitizer unless there are absolutely no other choices. I do practice the basics. I wash my hands regularly and especially when cooking, before and after the gym, after using the bathroom and all that. But 100% germ killers aren't good. They kill the good and bad germs.

 With my immune system I am told that I should avoid sick people and blah-blah-blah. I ignore that part and live my life. I refuse to live under a rock. I go out in public. I don't hang out with people with a cold.

But there are a few germs which concern me. The flu so I get a flu shot. Maybe I'll get a pneumonia shot as well. I also have gotten the booster for whooping cough and the others. I am concerned that if Ebola got here, we would have problems. That disease that is affecting children all over the Midwest is not a good thing.

We need to have ways to get rid of the bad germs but keep the good germs in life.

Sunday, September 14, 2014

Meanwhile back at the rheumatologists office

Monday I went to see the rheumatologist's nurse practitioner for the first time. She has the best decorated exam room.

And she has a whole wardrobe in the bottom drawer of her file cabinet. I can't wait to see her next outfit.

But I digress. Because of the mystery cysts/nodules on my elbow the NP asked me if I wanted to try switching from methotrexate to something else.... in case the bumps are rheumatoid nodules caused by methotrexate. She offered me Xeljanz. I opted to wait until we know what they are before making a change. Changing one medication often requires changing multiple medications for me so I do not quickly jump on that bandwagon.

I went to my before the birds MRI on Friday and should get the results tomorrow. Yesterday I also got the x-ray results on my elbow which say "Mild soft tissue thickening over the olecranon, consider bursitis." How helpful. But the NP made a note saying we will know more after the MRI results.

In the meantime, I decided to do a little research on Xeljanz as a treatment option. It costs a paltry $25 per day at the regular pharmacy or you can do the math - one hell of a lot each year. The mail order pharmacy should bring that down to $105/month which is much better but still. As a comparison, Methotrexate costs me $8.70 for about four months of drugs and needles.

Then yesterday in the mail, I received a box. From Pfizer???? What did they want? It was almost big enough to hold a bottle of wine (wishful thinking). I opened it up and found:

 Now I think I know what the Xeljanz capsules will look like.... And inside the giant pill was:

  • Ready for a change booklet - questions to ask your doctor
  • Your body was made for better things than RA - a hefty brochure containing the prescribing safety information
  • A lovely letter congratulating me for taking the first step in considering a change in medication
  • A day by day RA symptom tracker complete with little colored post it notes (Made in China) to use to mark each day's efforts
  • A co-pay savings card. With a maximum of $8000 in coverage each year - or the card to suck people in to switching.

Well, now my little marketing brain kicks in. Some how, I am on a list of people who said they are taking methotrexate for RA - I probably took some online survey or something.... I don't really care how they got my name and address. And then the marketing people said "let's send all these RA methotrexate people information on switching to our expensive new drug."

Then they dreamed up this lovely box and giant red and white capsule to fill with expensive marketing tools. My educated guess as amarketing person that it cost about $8 to print everything and get it in the mail, which is expensive as marketing premiums go, but nothing compared to the billions they make every year.

But its a waste for me - except for the co-pay savings card - as I do not base my decisions on marketing crap from big companies but on what my doctors suggest. And I want my MRI results before doing anything.

Friday, September 12, 2014

Up before the birds

This morning I got up at the perky cheerful hour of 430am. And it was intentional. Why you say? Because I had an MRI of my elbow.

I always take the weird time MRIs. MRI machines need to run continuously because it takes too long to shut them down and bring them back up again. There are always appointments available in the middle of the night or on holidays. I once had an MRI on Easter Sunday. Easter isn't a big deal for us so I didn't mind.

I digress. This morning I was up before the birds. It was dark and quiet when I went out my door. The sun was just beginning to come up but I didn't get to see the sunrise. It was dark when I got there with just a hint of the coming day.

So anyway, I bet you are dying to hear about my elbow. This is the same elbow that had tennis elbow a couple years ago that came back again. I wear a splint often on my right hand because of the tennis elbow and arthritis. Recently I discovered I had a bunch of cysts on my elbow. My PCP and rheumatologist said to keep a eye on them and let them know if they get bigger or hurt.

Of course they got bigger and hurt, especially when they get squished. Note to self, don't squish the  whatevertheyares or they hurt for hours. But we don't know what they are. They could be cysts. They could be rheumatoid nodules as a side effect of my methotrexate. But cysts and nodules don't hurt when squished.

So the mystery looms. I had an x-ray earlier this week and had the MRI this morning. We should know results next week. This may mean changing my RA treatment... But if you have had breasts cancer you can't have a lot of the newer biologics. So the fun continues.

Now I might need to go to bed early to make up for getting up so early.

My husband thinks I should get to  name my  new ailment because its probably something weird. And with everything I have I should get to name something after me...

Thursday, September 11, 2014

So what do you want to do with the rest of your life?

Cancer diagnoses interfere with long term planning on many levels. For a while I wasn't sure I would be around for retiring. My husband and I have relatively vague plans to pay off the house and then retire sooner as opposed to later but probably not for a while yet.

Last night I went out with an old friend from junior high. She got out of college and got a job where her father worked for a year or two. She has been there for more than years and plans on retiring in a few more. Her husband has stage IV colon cancer and she doesn't want to have worked through the last years of his life. They have even met with a financial planner to discuss this.

Her big plans are to take a year off - something she hasn't ever done, even when her child was born - and do nothing. She hopes to eventually maybe volunteer at a food pantry, go back to work part time, or come up with a hobby to keep her busy. They want to downsize their main house and keep their vacation house and split their time between the two. She has plans for the rest of her life.

What do I want to do with the rest of my life? Stop going to the (damn) doctors. Stop being in pain. Feeling better. Retiring quietly to garden and knit with my husband (he won't be knitting) someplace where we can sit on the porch and admire the view. Too bad I don't have any details on this yet. Maybe its time to start planning.

Wednesday, September 10, 2014

A bit of overkill?

When is it a bit too much??? There is a new study out (of course another study - just what we needed) where the author calls for across the board BRCA testing. Yes really. Go read it here. And you can read what Dr Love thinks about this here.

My thoughts are now I know why people want to live off the grid without government interference. This really goes a bit too far.

I know breast cancer is a bad thing. The BRCA genes are responsible for somewhere around 25-30% of all hereditary breast and ovarian cancers and 5-10% of all breast cancers. So of the 250,000 or so breast cancer diagnoses each year in the US, this might lead to detecting 12,500-25,000 cases of breast cancer early.

I honestly don't see the benefit of testing millions of Americans to 25,000 cases annually. I know the cases add up and each person gets tested once so its not that clear but I do not see the cost/benefit ratio here. As Dr Love points out, who is going to pay for all this? The Affordable Care Act would probably want the insurance companies to pick up the tab - and you know the cost of that test is going to hit your premiums somewhere/somehow. And since men can carry the BRCA gene and get breast cancer, they would need to be tested as well.

And if you test positive for the gene you can take preventative measures such as tamoxifen and mastectomies but there is no guarantee you can prevent yourself from getting cancer. You can only reduce your risk.

I think the current system of looking at family history and then making educated decisions on a one-on-one basis with each person's doctor is better. Because if you look at the numbers the other way, 90-95% of the cases of breast cancer diagnosed each year are not due to the BRCA gene.

Before we go for across the board testing for anything, we need to look at the incidence of the disease being screened and the cost benefit ration. Breast cancer isn't contagious as so many think.

Tuesday, September 9, 2014

This is going in the wrong direction

Australia's Federal Court has allowed companies to patent genes. This is contrary to what recently happened in the US Supreme Court. Why? I say, why? What were they thinking?

The only piece of logic I can find here is this:

"Director of Advocacy at Cancer Council Australia, Paul Grogan, said that, if the ruling was an interpretation of the law, then the law needed to change.

"In 2008, Australian women were only protected from an attempted commercial monopoly over the BRCA1 and BRCA2 tests because the company that threatened to take those tests away from public laboratories withdrew its patent claims voluntarily," he said.

"There was nothing in the law to protect healthcare consumers ... and there still isn't.

He said Australia might now end up finding US companies enforcing patents here that they could not enforce in their home country after a Supreme Court ruling there that overturned the gene patents."

It is also expected to bring companies to Australia where they can patent human genes. 
I agree it may be time to change the laws.

Monday, September 8, 2014

Raising cancer awareness

One rap video at a time....

He's 19 and should be a UCLA freshman instead of sitting in a hospital room with a chemo pole. Between treatments he created a rap song to show the every day life of a cancer patient which he hopes JayZ will hear and help him raise awareness about cancer.

I can verify it sucks to be 19 and diagnosed with cancer. Go for it Thomas.

Sunday, September 7, 2014

I still hate tofu

I really dislike tofu. I mean if its cut up in a bowl of hot and sour soup that's fine. But I never order tofu in restaurants. Also due to the ongoing debate about soy and breast cancer, I am find standing my ground on not eating tofu.

And now there is more research to show that soy is bad for women in treatment with breast cancer.

"Adding soy to your diet in the form of milk or tofu, pictured, could speed up the rate at which breast cancer cells spread in those women already diagnosed with the disease, scientists have warned. 

The findings led them to conclude the soy protein could potentially accelerate the progression of the disease." 

The study was done on women who had been diagnosed with breast cancer and before lumpectomy or mastectomy.

"Jacqueline Bromberg, co-author of the study, said: 'Although the genes were being expressed, it is not clear that this will translate into actual tumour growth.

'But the concern is that there may be the potential.
'Only 20 per cent of those patients who took the soy had really high levels of the genistein metabolite.'
She said the reasons behind the disparity are unclear, adding that there is no way to predict who would have this reaction after consuming soy."

So there is no way of knowing if you have the reaction after consuming soy. so that keeps me off the tofu diet.

You can read more about this study here.

Saturday, September 6, 2014

A very good book

As a cancer person, I am very skeptical of  'cancer' books. After thyroid cancer, it took me years before I could pick up a book about a young person with a life threatening disease or health condition. I remember throwing books that I had been enjoying across the room when I discovered that the story was about their health issue.

Then after breast cancer, I was eager to read my first graphic novel. I can't remember the title but it was about a woman with breast cancer's autobiography as her breast cancer returned and then she died...

So I am very skeptical to say the least.

Earlier this week a Bookbub email wandered into my inbox and offered me a deal on a new book about a woman dealing with breast cancer metastases. I hesitated. I closed the email. I thought about it. I went back later on and said its only $0.99 or maybe even $1.99 and bought it. Then I waited a couple days before reading it, still hesitant.

Then I read it. It was great. Its not long but worth the read. Its funny, sad, happy, depressing, optimistic, scary, compassionate, and a great read.

"In the Mirror" by Kaira Rouda. Go find it. Unfortunately the library doesn't have any more of her books so I might have to resort to the bookstore (eek)!

Friday, September 5, 2014

A day at the hospital

Over the past two days I have spent several hours at the hospital (not for me). Sometimes I drive other people there.

It was a bit of visiting cancerland on Wednesday as I was in the infusion area. One of the nurses asked me if it was weird to be back there and brought flashbacks. I said not really as its been long enough. And that is true. I am okay with it and it doesn't bring huge flashbacks. As long as I am not the one in the big chair with the IV in my arm.

Yesterday I was getting us tea in the cafeteria, there was a woman in front of me in line wearing a pink and white striped shirt, with a pink baseball hat over her bald head. She was clearly ready for Pinktober. And comfortable showing the world her ailment.

While waiting in the radiology department, we all got a snicker as a man walked out of the dressing room and brought his shirt and shoes to his wife. I could understand the shirt but not the shoes. Why walk in stocking feet in the hospital? Icky.

Later, in the lobby there was a woman in dressed in a hospital gown at the ATM machine with her IV pole. She was clearly a patient who went out for a walk to get some cash so she could go shopping at the gift shop. (Mental note to self, bring debit card for shopping at next inpatient stay.)

I made some small joke about taking an IV pole out for a daily walk as she went by. She replied with "they don't talk back and you can take them anywhere". Very true.

Enough hospitals for this week. I think all my appointments start next week. Crap.

Thursday, September 4, 2014


That would be a very nice salary wouldn't it? I wouldn't mind it myself. But its not a salary. Its the cost of a new drug to treat Gaucher's Disease from Genzyme.

Now scrape yourself off the floor for a second. Gaucher's disease is fairly rare. It is a genetic condition where if both parents are carriers there is a good chance their child will either have it or be a carrier. As it is genetic, there is no cure. But $310K/year? That's crazy.

"The cost of Cerdelga is not unusual for rare disease drugs that qualify for tax credits and patent extensions under the federal Orphan Drug Act, which covers treatments for diseases afflicting fewer than 200,000 patients. Gaucher affects only about 2,000 people in the United States, some of whom are on medications from competing drug firms. It affects fewer than 10,000 people worldwide."...

Okay so they cannot expect to earn that much back as there is a very small potential market for it. But if they get 1000 patients on it, that would be $310,000,000 annually in income.... No small potatoes there.

"“Gaucher is among the rarest of the rare diseases,” said Genzyme spokeswoman Lori Gorski. “The health care system already has been taking care of people with Gaucher disease. This is not a new burden on the system. This gives patients and physicians the ability to choose the therapy that is best for their circumstances without consideration of the price.”"

So previous drugs were just as expensive. Wouldn't a benefit be to make a lower cost drug?

"“It poses a challenge because a lot of these drugs are really breakthroughs and they’re drugs you want patients to have access to,” said Brendan Buck, vice president for America’s Health Insurance Plans, a trade group. “But they’re coming with increasingly high price tags that could become unsustainable for health plans, Medicaid, Medicare, and private businesses.”"

Breakthrough drugs are great but great big price tags are not great.

"Gorski acknowledged the manufacturing cost of the Cerdelga pill is less than that of biotech drugs such as Cerezyme, which are produced through an organic process in giant vats called bioreactors. But she said other factors come into play in pricing a drug, such as development costs, the clinical value it brings to patients, and the rarity of the condition."

The clinical value it brings to the patients. Hmmm... How much the companies think a patient will pay. That's the key. I can understand if its treating a very rare condition making a small potential market as I mentioned above. But by taking into consideration the clinical value, aren't they putting a dollar value on the patient's life?

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