Overtreatment issues

There is new evidence that the risk of leukemia after breast cancer treatment is double what previously thought to be. It was stated at 0.25% but new research shows it is more like 0.5% and the risk continues for ten years, not slowing down after five. So the new advice is not to treat with stage 1 cancers with just in case chemotherapy or radiation give that the risk is doubled.

In addition, while the new recommendations for radiation are to cut back from the usual five to seven weeks to three weeks for early stage cancers, many doctors are not making the change. The benefits are in cost savings, fewer side effects, and improved quality of life for the patients. (From the patient's perspective (me) the biggest problem with radiation is having to go EVERY day for week upon week.) Many doctors and patients seem to have the reaction to do as much as possible in cancer treatment.

I realize that cancer treatment is of the slash, poison, and burn variety, even in this modern era. But it would be nice if the elusive 'them' would figure out ways to heal us without killing us off int he process. I feel like a cancer diagnosis is a challenge to both get through the diagnosis AND the treatment. Maybe we need a little more progress/research in this area.

Its a life, not a fight

Cancer is not a battle, or a war, or anything more than someone's life. Finally there is some research backing me up. New research says that calling cancer a fight can be negative for the patient. Yes, negative.

War connotations lead to feelings of failure. The blame gets put on the patient. Who gets the guilt and sense of failure if they face further progressions in their cancer - which is completely beyond their control. Guilt and failure do not lead to happy people who are willing to take care of themselves and adopt healthy lifestyles. They lead to depression and more.

President Nixon declared a war on cancer. The American Cancer Society calls us survivors from the point of diagnosis. But they are wrong. It is not a battle or a war. It is a life.

So take that battle, war or whatever it is out of the equation. Stop telling us we are survivors.

All I survived is a boatload of doctor appointments. Nothing more, nothing less. I try to stay positive but do not try to shift any blame onto me.

Pain control vs opiate management

I am a huge fan of opiates and other pain relief medications. I never used to be. I am also concerned about addiction issues. And if someone got hold of my personal (legal) stash, I would be seriously concerned. My pain meds include several with 'street value'. I would not want to be someone who unknowingly contributed to the local substance abuse problem.

There is a new invention out there for those of us with chronic pain. These are transdermal pain patches which contain varying doses of an opiate - Butrans patches. They have worked very well for me. I started a few years ago about when they first came out at 5mcg/hour and then eventually went up to 10 mcg/hour. You change the patch every seven days and in the meantime, lots of pain relief.

I know people who it has worked for, but also I know some who couldn't tolerate side effects. Like all medications, it is not for all. The best part for me is my feeble brain doesn't need to remember to take a pill to stay ahead of the majority of my pain.

But I digress. There is a real problem with opiate addiction in the US. As a result, the government has cracked down on their availability and has created databases to confirm patients aren't doctor shopping to get multiple prescriptions. This is why I can only get a month's supply of patches with each prescription. Each monthly prescription costs $105. If I could get the 3 month supply, as in the past, the price would be $105 for three months, not one.

This is an example of the problem has been created by more restrictions to the accessibility of these drugs to prevent abuse by the few. Which creates hurdles for those in pain to get the relief they need.

I'll call this progress but the advocacy groups, the regulators, doctors, and the pharmaceutical manufacturers need to continue to work together to help curb the abusers while allowing those in need to get the treatment they require.

The placard question

I have had a somewhat long term debate with myself of whether I should get a handicapped parking placard. Some days finding a parking place and having to walk long ways - with full grocery carts, etc - get very tiresome and painful. RA and fibromyalgia can be a nasty combination. When one isn't hurting the other is.

Last year my primary care doctor told me I don't want to go down that route. I am not sure what she is thinking. Other than the fact that she is very healthy and in her 30s. I think my rheumatologist would be much more likely to sign the form if I asked her. She is more aware of my mobility issues.

I have already taken the safest parking space at work - this is a perk when you work for a small company and every uses the same space every day. When one woman retired a couple of years ago, it only took me one icy day to decide I was taking her space right next to the front door. Its also helpful when I leave my phone or lunch in the car.

But its not the same at the grocery store or the doctor's office where I park in the giant garage and go up to the top to park near the elevators/stairs. The thing about the placard is you don't need to use it if you don't want. If I'm having a good day, maybe I'll take a distant space. But there are times when my husband leaves me at the door to go park the car and then get the car.

Most days I am okay but some days I am not. I am tired and just need to finish what I need and get home and lie down. Those are the days where a placard would be helpful. Sometimes I look at people who park in the handicapped spaces with a tinge of jealousy. Other days I enjoy the walk from the far recesses. Some people look handicapped - canes, limps, oxygen, etc - and some don't - like me. Not all handicaps are visible.

And then there is this woman in Australia who got yelled at by some crabby man because she had a placard and didn't look handicapped. Just because you don't look like you need the space doesn't mean you don't need it. Appearances can be deceiving.

And am I too young to  need one of those damn placards? Would it put me in the old fart category already? I may have the medical records of a 90 year old.

Progress with a certain degree of ickiness

Would you walk around with wires sticking out of the top of your head which is covered in bandages? I am not as concerned about how I look but the idea of wires sticking out of my head. And you have to change the transducers every three or four days. Hence the ick factor.

Glioblastomas are nasty brain tumors, the type that killed Senator Ted Kennedy. They are not easily treatable. These new devices use electromagnetic fields to control the tumor cells.

"The sophisticated system involves covering a shaved scalp with insulated electrical transducers, which transform electricity into electromagnetic energy. The transducer devices are affixed to the skin with wide overlapping bandages, giving the appearance of a high-tech shower cap. 

Electromagnetic fields — generated from electricity produced via a 6-pound battery pack that patients carry on their backs — pass through the skull and brain tissue, and target rapidly reproducing tumor cells, disrupting their delicate process of cell division.

The electromagnetic fields don’t damage the brain’s healthy neurons and anatomical structures because those structures are not undergoing cell division. The fields exert force on proteins — which become electrically charged when the tumor cell is in the process of dividing — and that halts the cell division and destroys the cancer cells."

So you have to carry around a six pound battery pack. That alone would slow me down with my bad back. The other problem is it costs, brace yourself, $21,000 each month. And currently Medicare and many insurers won't pay for it.

However the manufacturer expects, but is not guaranteed, FDA approval in the next year or so. But there is no guarantee of any insurance coverage in the future. To me there is the ick factor and the idea of big brother watching what you are thinking through your brain cells...

It is possible that things can go in the right direction

In 2007, when I was in chemo, nausea was my constant friend. It didn't stop me from eating, in fact I did gain weight during chemo. It disappeared after chemo.

A few weeks ago, my rheumatologist put me on sulfasalazine to help with my rheumatoid arthritis. Its just like chemo again in that it makes me feel nauseous all over again. I have felt nauseous again and again since I started taking a few weeks ago. This nausea made me actually do some research on it even though I did listen to my doctor who said nausea could happen.

So I looked it up on drugs.com and there it is under side effects that may go

"Some sulfasalazine side effects may not need any medical attention. As your body gets used to the medicine these side effects may disappear. Your health care professional may be able to help you prevent or reduce these side effects, but do check with them if any of the following side effects continue, or if you are concerned about them:

More common

• Abdominal or stomach pain or upset
• decreased weight

Less common

• Welts

Less common or rare

• Discoloration of the skin or urine
• hair loss or thinning of the hair
• swelling or inflammation of the mouth"

Did you see it? The second bullet in the first series of bullets. Decreased weight. How sneaky? How cool? Every other medication has caused weight gain. This one causes weight loss. Now I am happy.

Its a holiday

We all need a  holiday once in a while. A holiday is a day to enjoy. Its Christmas and for the religious, they may include services in their day. For the non religious, services will probably be omitted. But for all we should take a day to include friends and family and food. Some will head to the movie theaters. Some will head to a Chinese restaurant.

As an official US holiday, we should take the time to enjoy ourselves. The news just listed a bunch of restaurants which are open today. Anyone who has to work, should have been given it as an option and not a requirement to keep their job.

Shopping? Absolutely not. Its not a day to rush out and spend money on things we don't need. I grew up in Massachusetts where on Sundays as a child, nothing was open except the drug store and corner store for a few hours. You could not go shopping if you wanted to. So we didn't. We enjoyed ourselves with friends and family.

Today, take a moment to enjoy yourself with out spending a cent. And with out going to a mall. Take a few minutes hours to enjoy what you have. Relax, don't think about work, and enjoy.

And appreciate your health.

My time span

These days, every day I have an expiration time. This means at no point past that point in time should I attempt to do anything more than knit, read, or watch TV. This time frame means that every day I need to plan out  my day and not spend more time than I should at any point. Every week I sit down and plan out my little time periods so I can get through my days and what I need to get done..

Today my day is planned. Being lazy until 10 am when we will go get the last necessary items for Christmas dinner, make two pies, precook the squash, sort out dishes to use tomorrow, and take a nap while my husband sets the table and cleans up the kitchen.

Tomorrow is Christmas and guests are expected at 2pm to eat at 3pm. I have to put a ham and scalloped potatoes in the oven around 115 and then pick up relatives. We will make the green salad ahead and cook the green beans and heat squash at the last minute. After everyone leaves, which I assume will be by 8pm, I can go to bed early after we run the dishwasher.

Don't I lead an exciting life? This is life with RA and fibromyalgia. For more thoughts on what life with RA go read this.

Since my diagnosis  just over two years ago, my days are shorter and shorter but I hope to make them better and better but doing what I want to and not the stuff I don't want.

They made a bad rule

Back in 2012, all sorts of doctors were saying there are too many medical tests, standards, and treatments going on for all sorts of disease. There hundreds of recommendations from the official medical societies - Pediatrics, Oncology,o etc. At the time, I agreed with them for the most part. One of them in particular - stop over prescribing antibiotics.

But another one, I am not so sure. I consider it a bad rule. This rule is stop Imaging for Metastases in Early Stage Breast Cancers. They were not people who had walked the walk before they made that rule.

Allow me to use examples here. I have a friend who was found to have a relatively early stage II breast cancer except for the metastases to her liver which made her stage IV. She received the full gamut of chemo and had her liver ablated a couple of times. She is doing fine. But what if they hadn't found the liver metastases? She would be long gone by now.

The claim is over treatment and over imaging raise costs and are unnecessary for most early stage women. But if they can figure out whose cancer has spread and whose has not spread without imaging, then I am happy to accept the change. Until then, women who need the imaging should continue to get it.

Go make some other rules and stop being surprised that doctors who treating these concerned patients are looking out for their patients best interest.

Cancer doesn't have a holiday

If you have cancer and its Christmas, its not as fun. Holidays are supposed to be the time of families, friends, food, and celebrating, and depending on which holiday, gifts. But cancer doesn't take holidays. You can't take a day off from cancer. You can stick it in the back of your brain for a bit but it always comes out, some how.
If you are in treatment, you can try to participate in holidays. But chances are you won't have much fun. The year I was in treatment, I don't remember Thanksgiving as being that significant. But I don't think I did much cooking as usual because I felt like crap. Then Christmas wasn't much fun either because I had just had another lumpectomy because of a suspicious area.... I remember being tired and not doing much shopping or cooking. I don't even remember what I did for my birthday that year except I believe I had a Taxol infusion and none of the nurses noticed the date.

If you are post treatment, you can celebrate another year of being around to enjoy it but it may be more difficult to celebrate. Depression is common after cancer as is PTSD, so it just might not be as fun as it used to be. Financially you might be able to be as generous as you were before cancer - many cancer patients can't work after treatment or take a step back from their career during treatment. And then there are the medical bills that take a crimp out of their wallet. Physically you may not be able to travel as much or participate in as many activities because of limits to your mobility or stamina.

If you know someone who is coping with cancer, take a moment out of the holidays to reach out to them to say hello, give them a call, or send a message.

Me, how am I celebrating this year? A cancer friend is coming over this afternoon to enjoy a bottle of red wine which aged for a decade in her wine cabinet. Christmas Eve I will cook and then go out for Chinese food with my family. Christmas Day there will be eight of us for dinner - until I run out of steam and have to go to bed. Next week will be more family to enjoy. My diet will wait until then. And I will have to nap a lot.

In the meantime, I have to go for blood work tomorrow and get organized for a doctor appointment shortly after the new year. And I have to go get a copy of the receipt for my eye glasses so I can request a reimbursement from the insurance company. And I have a doctor appointment tomorrow.

See, cancer people don't get holidays. We squish them in between medical crap. But we are still here.

Advice from a long, long time ago

Well back in 1981, I was told I had cancer the first time (and stop trying to figure out how old I am - I am 37 this year, I will be 37 next year, and was 37 last year.). I was the good patient. I went to see my doctors and had all the fun tests after surgery and learned to take my thyroid pills regularly (except today when I cant remember if I took it or not - most aggravating).

Then all of a sudden my doctor said 'You should be fine. Live a healthy life style, don't take risks, each right, and get plenty of sleep'. WHAT????? But I'm still in college. I don't want to live a healthy life style. I want to go to bars, dance to live music, stay out late, eat dessert for breakfast and breakfast for dinner and live on beer, coffee, and TAB (remember TAB?)

So after ruminating on this comprehensive advice for a few months, I decided that although I had been told I had cancer and would have a life of being dependent on a little bottle of pills, I was going to live my life on my terms. I wasn't necessarily going to play in traffic but I was going to do what I wanted.

I did do things like 18 months after cancer treatment, I went to Europe for six months to study. I survived that - being away from doctors and living my life as I wanted. I finished college, got a real job, started a career, and all that. I didn't implode. I had fun. And I am still here.

I may have had cancer again and my health may not be so great in a lot of ways, but I'm doing what I want for the most part and having fun. I don't think a cancer diagnosis, or two, should take all the fun out of life.

So my advice for the post cancer life is do what you want, don't play in traffic, and have fun.

After all this Kadylca doesn't work

Last spring I blogged about the price of Kadylca, a new drug from Roche to treat breast cancer. The UK's NHS decided not to approve it because of the cost, a paltry $150,000 per patient.

Now there is a new trial done by Roche that was the bearer of bad news.

"Roche's late-stage study in women with previously untreated advanced HER2-positive breast cancer showed three of its approved treatments -- Herceptin, Perjeta and Kadcyla -- helped patients live longer without their disease worsening.

But the two treatment arms containing Kadcyla did not prove superior, undermining expectations that Kadcyla could become the new standard of care for treating many women."

So Roche has a big problem. They spent millions on a drug that doesn't work. Now their shares are down significantly as a result. They also found out a new Alzheimer's drug doesn't work either.

I have heard from people I know who took Kadylca that it worked for them so maybe it works for some people. 

I know I have blogged about the high cost of drugs, including this one. And this shows a prime reason for them. How much money over how many years did Roche spend to develop Kadylka? And it must have had some good results in early trials to keep the development going. And now their shares took a hit which devalues the company as well.

So now they have to start over with something new. Which will probably cost even more. 

I am not saying this justifies the high cost of new drugs as I think the pharma industry is rife with expenses which could be cut - salaries, packaging, marketing. I think if they reorganized their pay structure and took a look at some real cost cutting measures, I might be less negative.

Food for thyroid thought

In 1981, I had my thyroid removed. I have no idea what my thryoid numbers were then. I don't even know how much tracking they did of thyroid numbers anyway. I have never really understood thyroid numbers anyway. I know if your numbers are too high, you need to take take more to make them go lower.

Now this doctor explains (to smarter brains than me) about old levels (pre-surgery) and new numbers. I need to talk to my doctor. I have no idea what my old numbers were. I have no idea if they are buried in my medical records or just never recorded. And if they are buried in my medical records from 1981 they might as well have never been recorded because they are in a paper file in the medical archives which are in some 'other' building at the hospital and take a long laborious process to be retrieved.

This is a prime example of how the medical world  has changed in the past 30+ years. Back then, when I was young and had no idea about medical crap, we listened to our doctors and believed what they said. We didn't do any research because we believed what they told us. If we had questions, we might find a second opinion but probably not.

And also I have changed. At that young age (and if you want to know how old I am this year I am 37, last year I was 37, and next year I will be 37), I didn't really care about what doctors said because I was healthy damnit and in college and didn't really think about what it was like to be sick more than a cold.

But I digress. I need to print out that article and bring it with me to my next endocrinologist appointment which is sometime early in 2015. And I should probably make a note to myself on my calendar to remind myself to ask the doctor about it.

How to survive cancer

So with a cancer diagnosis, not only are you instantly plunged into cancerland on the roller coaster from hell, your life is changed.

I found two recent blog posts on Ten Things to Expect When You Have Cancer and Ten Tips from a 26 Year Breast Cancer Survivor to be helpful. Even though I resent that some people think we need every internet article to be a list of tips instead of essay format.

But then I wonder wouldn't it be nice if we didn't need these articles if cancer treatment experienced the breakthroughs I blogged about yesterday. That would be very nice.

Right now cancer treatment is horrible. Surgery, poisoning with chemotherapy and burned with radiation. What if cancer treatment didn't need to be so horrible and treatment was no worse than that for other treatable diseases? What if treatment was not as disfiguring and as hard to endure?

What if surviving cancer was an expectation and not the exception?

The future of cancer is amazing

Watch it here. (I can't get the code to center it correctly.)
I was amazed to watch this video from 60 Minutes a week or so ag. I wouldn't mind if it became true. I mean one of the patients in the video talks about how cancer research is on the edge of a huge breakthrough - the prediction is that in five years, what is standard cancer treatment will seem prehistoric. Another major point is that Dr Soon-Shiong wants to reclassify cancer - instead of by the body part where it is found to by the type of the mutation that is in the cancer.

Of course there are naysayers on this and people who think that it may be too far fetched or whatever.

From the perspective of the patient on this, if cancer could be treated without such drastic, poisonous methods, I am all for it. But I will say that although this video shows breakthroughs in research it does not show how it would be incorporated into existing medical treatment.

For example, would drastic surgery still be required to remove the cancer? Surgery which removes entire body parts is one of the worst part of cancer treatment - on you can't keep that part any more because it has cancer cooties in it.... That would be a big help.

But I digress. This video is worth the watch. It gave me hope.

Never share prescriptions

This is a prime example of why to never share prescription medications. A young woman in California took an antibiotic from a friend and ended up with a horrible reaction and is hospitalized with an allergic reaction that took a very nasty turn.

Two comments to note: First of all the friend had an antibiotic left from a previous cold. She should have taken all the antibiotic and not stopped it. Second of all, NEVER SHARE PRESCRIPTIONS!

I have seen and heard this countless times. A friend gets her Ativan from her sister. She also gets some pain meds from her. I think she should just go to the doctor and get her own prescriptions but she doesn't want to take the time. I have been on retreats where one woman wanted to see if she could get an Ativan from anyone, complete strangers met that afternoon. Someone offered one to her. Really? Bring your own.

Another additional problem with the habit of sharing prescriptions is making sure they do not end up being abused by others.

I can tell you that I have had allergic reactions to new prescriptions. Every time I get a new drug now, I read the allergic reaction list on what to look for. What happened to the woman in California is unfortunate and a warning to others not to share.

Would you test your own mice?

This is the latest in cancer testing. Pick your cancer treatment by getting your own mice to test with your own tumor tissue to see what might be the best treatment option for you.

Yes seriously. If you have a spare $30,000 you too can test on your own mice. It seems crazy. But people are trying it and swearing by it. Basically a piece of their tumor tissue is sent to a lab where they inject it into mice and try some different treatments to see which responds best.

In addition to the expense, there are no guarantee its going to work. The tumor tissue is grafted under the skin of the mice so its not the same environment of a human breast or lung. It takes several months to wait for the mice and patients might need to begin treatment before then. Finally immunotherapies can't be tested as the mice have impaired immune systems.

However there is hope:

""Even if it turns out these have real value," they're likely to be eclipsed by newer advances, such as ways to grow tumor cells in a lab dish that take only a few weeks..."

And I feel bad for the mice....

The age range

There has been the on going controversy on when to start annual mammograms for all women - is it 40? Is it 50? Many go with age 40 but some don't. And its another debate.

But there is the other end of the scale - when to stop yearly mammograms. Breast cancer becomes more common in women as we age. The older you are the more likely you are to be diagnosed with breast cancer. Its a known fact. But when do we stop screening women for breast cancer? (There is the same conversation about colonoscopies on when is too old.) Currently the advice is stop at age 75.

Seriously. I had never really known this. As we age, we become less healthy and less able to tolerate cancer treatment. Its pretty nasty.

A friend's great aunt was diagnosed with colon cancer at age 98. She was too fragile to stand treatment. My aunt was diagnosed with early stage breast cancer at age 76. She had a lumpectomy, radiation and is on an aromatase inhibitor (I'm not sure which one). If she was younger, they might have recommended chemotherapy.

Another side of this issue is the increasing costs on medicare for continued mammograms for women over 75. Yale did a recent study on this. Part of the increase is due to the switch from the cheaper older film mammograms to the new digital ones (from $73 to $115). But also the continued mammograms after age 75.

One side says the stress and anxiety for older women along with the costs are reasons enough for stopping them.

""Clinicians and patients need to start thinking about the bang they are getting for their buck," said Dr. Anees Chagpar, director of the Breast Center – Smilow Cancer Hospital at Yale-New Haven, and a co-author of the study. "We must be cognizant of our use of technology and healthcare dollars."

"Our country and health system have finally recognized that this aggressive and dramatic rise in health care costs is not sustainable," said Dr. Cary Gross, director of the Cancer Outcomes, Public Policy, and Effectiveness Research Center at Yale Cancer Center and one of the study's lead authors. "We need to make choices about how to prioritize our healthcare spending.""


The other side says that as long as women are healthy, they should continue to have them.

""Women should get an annual mammogram as long as they are healthy, and age should not be the discriminator," said Gruen. "Breast cancer is the enemy. We should not politicize things (such as screening mammography) that have been shown to save lives.""

So the age range for mammograms is somewhere around 40-75. If you get breast cancer before age 40 and after age 75, you may be SOL. Let's take the politics out of this and stop 'prioritizing' crap and look at the health of women as the real concern.

Breakthroughs and costs

Several drug companies are poised to bring significant breakthroughs in cancer treatment. One woman is referenced as going from stage IV lung cancer, a deadly place to be, to being cancer free after several months of treatment.

And here's the but. Who can afford $100,000/patient/year/drug. And if the drugs are used in combination that number could be $300,000/patient/year. No one can afford that. And we can't ask the insurance companies to pay that much. They would be bankrupt - as well as all the patients.

Put it this way, ten  years of treatment is $1,000,000 per drug. So every ten years, a pharma company is a million dollars richer.

So what are we to do?

The world is changing. We are getting to a place where a cure for cancer is closer to a reality. However the pharma industry's business plans bring us expensive cures. While we need the cure for cancer, we need a new business model which allows for affordable treatments.

As the world changes, the industries concerned need to change as well. These industries are health insurance, pharma manufacturers, and individual patients. Yes we all need to change and adapt to the new world where a cure for cancer is a reality and not a dream

How the hell did that happen?

I have a very responsible system for my medical bills. Every couple of months I call and say I want to pay all balances over 30 days old and put them on a credit card that I pay off regularly. I used to pay bills each month as they came in. Then I would get refunds from the hospital all the time. So I gave up on that system.

For the record this week when I went to the doctor they said I didn't need to pay my co-pay because I had a credit balance.

So to my surprise, yesterday I got a statement showing a balance going back to February which had a note that it would go to collections if not paid asap. So I called this morning and paid three outstanding bills, one each from January, February, and March. The January one had just gone to collections. I asked about that since I knew it took about six months until the insurance company decided what they would pay. I was told basically they look at the visit date and not the date it was actually billed before deciding to send things to collections.

How helpful. I have never had anything in collections before. How mortifying. And why couldn't I pay all these bills last time I called in October?

After cancer treatment is just as important

You get a cancer diagnosis and then they tell you how they want to slash, poison and burn your body to get rid of the cancer. But they rarely discuss the issues of life with your dismantled body after treatment.

I had no idea what I was getting into when at 19 I had my thyroid removed. I didn't understand for the rest of my life, I would need to take a little bottle of pills with me. Or that after breast cancer treatment, I would have surgery scars embossed into my skin thanks to radiation shortly after. Never mind neuropathy and chemo brain. And we can't forget our friends PTSD, anxiety, and depression, among others.

So when you are preparing for your cancer treatment, you also need to take the time to think about the long term and late effects, as they are known. These can include secondary cancers, infertility, and heart, bone and lung problems. Yeah, right. The first response to 'you have cancer' is something along the lines of 'get it out of me!'. No one wants to wait and weigh the benefits of do we get rid of the cancer or do we worry about the long term effects, if the first cancer doesn't kill you in the meantime?

That's not happening. Now that we know that patients can live and thrive for decades after treatment, perhaps we need cancer treatments which are do not leave long lasting physical scars. I know now there are oral cancer treatments where daily pills can remove the cancer but also bring strong side effects. They are a step in the right direction but we aren't there yet. Life after cancer is just as important as life before cancer. We want to be able to enjoy it too.

More research is needed please.

A Non-Answer

A new study came out on Monday regarding additional breast screening for women with dense breasts. The problem is that mammograms are not very good at detecting cancer's in dense tissue. But just adding an ultrasound is not the answer.

""What's not clear is what a woman who's told her breasts are dense should do next, if anything. Some of the laws suggest extra screening may be in order.

Not so fast, a team of scientists reported Monday. They modeled what would happen if women with dense breasts routinely received an ultrasound exam after every mammogram, and calculated such a policy would cost a lot, in extra tests and false alarms, for a small benefit.

For every 10,000 women who got supplemental screening between the ages of 50 and 74, three to four breast cancer deaths would be prevented - but 3,500 cancer-free women would undergo needless biopsies, the study concluded."

Obviously just because you may have dense breasts, you could be at higher risk for breast cancer but it doesn't mean you will get breast cancer. Your real risk of getting breast cancer depends on several other issues including family members' medical history, etc.

"Monday's study "reaffirms that we don't know exactly what the right thing to do is when a woman has dense breasts," said Dr. Otis Brawley, chief medical officer for the American Cancer Society.
Simply finding more tumors won't necessarily save lives, cautioned Brawley, who worries that "we're legislating something that we don't totally understand."

The American College of Obstetricians and Gynecologists doesn't recommend routine additional testing in women who have no symptoms or other risk factors.

UCSF's Kerlikowske said the real issue in deciding whether any woman needs extra screening - from an ultrasound to a more expensive MRI - is her overall risk of breast cancer."

The things that are clear to me are that first of all more research is clearly needed AND an additional screening of some sort is needed. We aren't there yet. This study was progress but it gave us a non-answer.

I know exactly where I was

I know exactly where I was when I was told I had cancer each time. The first time I was lying in the post op area of the hospital and the surgeon came in to tell me the news. The second time, nearly 26 years later, I was sitting on our bed holding my husband's hand when the surgeon called.

It doesn't matter how many years apart it was. The effect is still the same. The words 'you have cancer' are just as, not scary, not terrifying, maybe intimidating is the best word. I think I was more intimidated than terrified. Its a big scary diagnosis.

The first time I was completely caught off guard. I was 19. No one had ever muttered the word cancer to me before surgery. Goiter was the word I heard. The second time I was a bit more aware. There had been some mutterings about not looking very good, etc. But I was still in denial after the diagnosis.

Those moments never leave you.

A day in bed?

So maybe I did a bit too much this weekend. I had a table at a craft show on Saturday where I had to bring my stuff in from my car, up five steps and down a long hall. Then set up everything, stand for six hours, break everything down, and get it back out to my car with the help from a nice gentleman from the church.

Then on Sunday, I had a private craft show at home (if you didn't get your invitation it means I don't really know you) which entailed me getting up at 430 am and cleaning the kitchen, rearranging furniture with help from my husband, moving boxes around and getting comments from my husband that I should stop doing that before I made my back hurt, making mulled wine and tasting it to improve it and mostly being on my feet all afternoon.

Today I decided it would not be a good day for me to go to work - since its now 915am and I am still in bed. I promise I will get to the gym and the grocery store today. But I have between now and 5pm to get that done.

My feet hurt. My back hurts. I am tired. But I had fun both days. And tomorrow there will be some big rain storm and I will drive on the highway to get to work with a bunch of idiots in zero visibility.

Just because I am as healthy as a horse (on the way to the glue factory), having fun two days in a row, requires me to take it easy for at least a day after. Such is life. I am still here and that's what is really important.

What would you do?

Here's the scenario. You had cancer once and chemotherapy almost killed you so you swore you would never do it again. You get a new cancer or a recurrence and the oncologist recommends more chemotherapy. Would you do it?

This is the case of a friend of a friend. Apparently the first rounds of chemo nearly killed her by causing life threatening diarrhea for weeks. Her doctors told her a week or so ago, its back and want her to restart chemotherapy. She said no.

My friend told me this story as she is trying to find her so she can talk to her. I can completely understand the situation.

My first inclination would probably be to refuse more chemo if I had nearly died the first time. It might take a lot of convincing to get me to try it again. I would want to know what would the doctors be able to do to help prevent of the situation. I mean would I rather die from diarrhea or from cancer? I'm being real here.

Us cancer people may make what others consider weird decisions and discussions. We have already faced a potentially deadly diagnosis. Sometimes the treatment is pretty nasty. I mean its the slash, poison and burn - surgery, chemo, and radiation. Its no fun. You feel like crap. You lose your hair. You deal with radiation burns on sensitive body parts.You may be alive during treatment but you certainly aren't living.

I know I would have second thoughts and look for options that wouldn't be as harsh. What would you do?

The faces of cancer

So the picture of a Stage IV cancer patient shows a pale, hairless, skinny person shrunk down in their chair or wheelchair. Strike that image from your head and meet Fancy Nancy. She is in her 70s and has had cancer three times - currently dealing with metastases from her stomach and breast cancers. I ran into her yesterday after my doctor appointment in the hospital lobby. Does she look like a Stage IV cancer patient?

I wish we could all look so good. She had a fashionable head scarf with her Jackie O shades, ruffled scarf and fingerless gloves. She also was rocking leggings with black leather knee high boots. And she had a big smile pasted on her face because she was having fun with life.

As I took her picture she asked me if she should wave...

Be Part of the Patient's Voice

The FDA has actually started listening to the voices of patients. Yes they have actually attempted to reach the 20th Century (not quite ready for prime time or the 21st C but we can call it progress).

I was pleasantly surprised to read this article on how the FDA has actually reconsidered decisions to pull drugs off the market as a result of patients and caregivers lending their voices. So you can do it too. Don't be afraid to write to a pharma company and the FDA if you disagree with a decision. The one note of caution is that often drugs are pulled due to side effects. So you may benefit from the treatment but beware the potentially nasty side effects.

Me, I think hyou can tell I never fail to speak my mind!


In addition, the article contained this incredibly helpful schematic FDA's approval process.

The Big Bad Breast Cancer Cells

New research (because we always need more research) has discovered that a certain trio of cells are necessary for breast cancer to spread. This is important. It can lead to better tests for determining which breast cancer patients will spread and to better anticancer therapies.

And:

"In earlier studies involving animal models and human cancer cell lines, researchers found that breast cancer spreads when three specific cells are in direct contact: an endothelial cell (a type of cell that lines the blood vessels), a perivascular macrophage (a type of immune cell found near blood vessels), and a tumor cell that produces high levels of Mena, a protein that enhances a cancer cell's ability to spread. Where these three cells come in contact is where tumor cells can enter blood vessels--a site called a tumor microenvironment of metastasis, or TMEM. Tumors with high numbers of TMEM sites (i.e., they have a high TMEM "score") were more likely to metastasize than were tumors with lower TMEM scores. In addition, the researchers found that cancer tissues high in a form of Mena called MenaINV were especially likely to metastasize. (MenaINV refers to the invasive form of Mena.)"

But:

"Those studies revealed new insights into how cancer might spread, but they didn't necessarily show what is happening in patients," said study leader Maja Oktay, M.D., Ph.D., associate professor of pathology..."

This all leads to some progress but not enough. The best part of this is that it could help women with metastatic cancer.

""These results confirm that TMEM sites and MenaINV are essential for the spread of breast cancer in humans," said Dr. Oktay. "They also imply that MenaINV expression and TMEM score measure related aspects of a commonly used mechanism that human breast cancers use to metastasize."

Dr. Oktay noted that "the outcome for patients with metastatic breast cancer hasn't improved in the past 30 years despite the development of targeted therapies. It's critically important to learn more about the metastatic process so we can develop new ways to predict whether cancer will spread and identify new treatments.""

But I can live with all this for now.

The elusive breast cancer vaccine

A few years back I blogged about curing mice in pursuit of a breast cancer vaccine. Then three years ago, I blogged about progress in this vaccine plan. More than four years from my first post, here I can post about the first clinical trials on a breast cancer vaccine.

But before the celebratory parade starts, a few notes of caution. This vaccine will not work on all patients. It will only be effective on patients who's tumor produces mammaglobin-A.

And while progress has been made since the first mice curing trials, this trial was a small phase 1 clinical trial involving 14 metastatic women. These women did experience some benefit from it and the hope is that healthier women who's immune system is not as compromised after years of chemotherapy and hormonal treatment will show more benefit.

So we can call this progress but after waiting since June of 2010, we still need more research and more waiting.

Don't confuse me!

I have a looming appointment with my rheumatologist this week (which I finally put on my calendar this morning) to talk about how I am feeling. We might even change my medication, I don't know.

Then there is an article on '5 Signs Your RA Treatment Isn't Working'. (Why do we need to have articles that are 5 signs... or 10 reasons.... or 15 best...?) Now I am confused. The five signs:

1. Your Disease Activity Score Rises
2. You Don't Feel Well
3. You Develop Antibodies
4. Your Polyglutamate Levels Are High
5. Your Blood Shows Signs of Inflammation

I don't feel well and my blood shows signs of inflammation. But I have no idea what the other three mean, what they are and if I have them. Now I am confused. I thought I was fairly well educated on my RA but I guess I am not.

Now I know what my questions will be for my doctor on Thursday.

Why should care needed at a second cancer diagnosis need to be debated?

Last week or so the British Parliament debated whether additional care is needed for patients undergoing a second breast cancer diagnosis. Why should this be any  different than any other cancer diagnosis?

As far as I am concerned, if a patient is diagnosed with a second cancer, it doesn't matter if its the same cancer or a new cancer, the patient needs to have access to all available resources. Why should this even be a discussion? Well it seems that in the UK National Health Service, the patient with the secondary cancer doesn't usually get access to the clinical nurse specialist that was available at their first diagnosis.

When you are faced with a big diagnosis such as cancer, it is important to have as many resources as possible. And it should be up to the patient to decide which resources they want to utilize - and that may be later as opposed to sooner. however the resources should be there. Please do not make the decision for the patient and let them make it for themselves.

Progress in Breast Cancer Treatment Shows in Recurrence Rates

A new study looked at survival of moderate or advanced breast cancer patients between the 1980s and 2000s. During those two decades new treatments and advancements, greatly decreased the recurrence rates.

I read the attached and two areas were of great interest. During that time Herceptin was made available and Her2 positive cancers became much easier to treat. Also, estrogen driven cancers used to have a consistentlyhigh recurrence rate but now it is much lower.

While the rate changes vary, overall the recurrence rate has fallen by 50% in those twenty years. This makes me wonder what can happen in the next twenty years in terms of cancer treatment progress.

While breast cancer is the most common cancer among women, we must not forget about other cancers and their recurrence rates.

But in the meantime, I will call this progress.

Inflammation and me

A few weeks ago I had my evil toe infection and was on antibiotics which meant I was off  Methotrexate for three weeks. Methotrexate keeps my RA and its inflammation in check. But antibiotics and MX don't work together. Or if I feel I am getting a cold, I am not supposed to take my MX either.

So week one I felt like I was getting a cold so I skipped it. Week two my stupid toe started and I was on antibiotics so I skipped it. Week three I was still on antibiotics for my stupid toe so I skipped it. Then I had two weeks of my MX injections. Then I went for my regular blood work on Tuesday to check my blood for evil things related to RA and its treatment. No big deal.

Then Wednesday I am happily cooking away, having fun, enjoying myself, and I missed a phone call. I checked my voice mail a few minutes later to find one of  'those' messages.

"Hi this is Debbie from Dr. K's office calling about your blood work yesterday. Can you please call us when you can? We are here today till 430 and then back on Friday. Its not urgent (hah!) but please call."

Of course, I called immediately. I hate those messages with so much subtext behind them. Debbie answered and said she had the results of my blood work and wanted to talk to me about them.

Apparently my inflammation levels were up and she wanted to know if I was in the middle of a bad flare up. I said no, more of the usual but nothing bad. But then I told her I had been off MX for three weeks and only back on it for two weeks. She felt that would account for the increased levels but to be sure to keep my appointment with Dr K next week.

So its only inflammation but it would make sense that I have been feeling like crap. And yes I'll keep my appointment.

Lung Cancer Doesnt Get Its Fair Share

Lung cancer affects half as many women as breast cancer does each year but kills twice as many women. And its five year survival rate is 16% or for Stage IV, 4%. To put it another way:

"An indiscriminate killer, lung cancer takes more lives annually than breast, prostate, colon and pancreatic cancers combined. The disease has not generally received the public attention or research dollars in proportion to its devastating lethality. Lung cancer receives just $1,442 in federal research funds per death, compared with $26,398 for breast cancer and $13,419 for prostate cancer according to an NIH study. Factor in private donations, and the funding gap becomes even more staggering."

Lung cancer is not the only one that is indiscriminate. All cancers are indiscriminate but its time that other cancers get the notice that go to the headline cancers - breast, pancreatic, and prostate. I call them headline cancers because they grab the headlines. But there are millions of Americans dealing with a lifetime in cancerland which is not the same as life without cancer.

November is lung cancer month. Did you even know that? You couldn't miss the pinkification of October..... Lung cancer, and other non-headline cancers, need their fair share of funding, research, and awareness.

I failed the unhealthy quiz!

So in my prowls around the internet, I came across a list/quiz of ten signs you are unhealthy. I thought, that MUST describe me. I was so happy to find out it did not describe me. Which means there are plenty of people who are less healthy than me out there. And here are the ten signs:

1. Your sleep pattern is not what it should be.
2. You have become an apple
3. You suffer from fatigue
4. Your urine is dark yellow
5. You snore louder and more often
6. You have to scratch all the time
7. You get cracks in your lips at the corners.
8. The quality of your skin is poor.
9. You always have a cold or the flu.
10. Your bowels are not regular.

Now I am not claiming that my sleep is perfect or I never get fatigued because I do. The list claims that one of the key reasons for fatigue are thyroid problems but since I don't have a thyroid that is a moot point for me. I also have RA and fibromyalgia which cause fatigue.

I also may not be the skinniest I have ever been but I don't suffer from the rest of these really at all. I also get plenty of exercise (believe it or not I do 60 minutes of cardio 3 times each week followed by weights and stretching).

But I digress. I am not all that healthy but I failed the unhealthy quiz!

Generic drug prices going up

Brand name prescription drug prices are sky rocketing. The silver lining for all of us patients is that generic drugs would become available at a much lower price. But now those prices are going up as well.

In the US, the government does not negotiate drug prices or mandate generic drug prices - which have been priced based on the cost of key ingredients - the smart way to do pricing instead of basing it on how much it is worth for the patients life (which is another blog post).

But now, a Senate panel is looking at generic prices and how much they have gone up in the past year. Hmmm..... I smell a rat.

Let me start by saying that I am a huge fan of generic drugs and most of my affordable prescriptions are generics. But my brand name prescriptions cost me anywhere from $35-$105/month. Ouch. And that's mail order prices. Which means I have to keep my chemo brain/fibro fog focus on refilling prescriptions before I run out.

I also am not a fan of too much government regulation. I do prefer when market forces run prices. While I am jealous of drug pricing overseas, I find it unfortunate that certain industries make their huge profits on the backs of American patients.

Now back to that rat that I smell.I suspect that something more is afoot than just market forces on the generic prices. Maybe some collusion somewhere. I don't know what that rat is but I am suspicious. Call me a concerned patient for now but I will keep digging around on this one.

I find it annoying!

Why, oh why, do we have to have stupid pink ribbons everywhere???? Seriously? I knit and crochet and have tables at craft shows locally in November and December each year. Yesterday I was at a show and there were pink ribbons up in the bathroom. Do we need them? Why?

Every craft show also seems to have someone who decides to plaster pink ribbons on at least half their crafts. I don't think I would mind it if they were equal opportunity ribbons for all the different types of cancer and not just the pink ones.

I don't mind the informative posters you see here and there, its just the stupid pink ribbons that annoy me.

Its not October any more. And I really find them annoying in October. Can't we just get rid of them all? The world doesn't need more pink (ribbons)!

Okay, its Monday morning and I am in a 'mood'. I don't have to work but have to take my father to the doctor today. I want to go to the gym first and a friend may stop by later and the house is a MESS!

And then tomorrow I take my father back to the hospital for another adventure. Meanwhile my husband is threatening to clean while I am gone. The problem with him cleaning is he throws everything he doesn't know what to do with in a bag or box and sticks it in the basement and then I hunt for it for six months as he has forgotten what he put where.

Then the Thanksgiving cooking starts.... which is the fun part.

Maybe I'll be cranky today. Don't tell anyone.

Removing the 'crap shoot' aspect from RA treatment

Right now when you get diagnosed with rhuematoid arthritis this is the standard procedure:

1. Start with prednisone and plaquenile or a sulfa drug. Prednisone is used to reduce current inflammation for a relatively short period of time. Plaquenile is an old leprosy (really) drug that was found to also treat RA. But it can take 3 months or more to see the benefit Me? I was allergic to both prednisone and plaquenile. 
2. Oral methotrexate which can take 3 months or more to see the benefit. Methotrexate is the gold standard in treating RA but is also a very toxic chemotherapy drug where it is used in much larger doses. Me? It didn't work. My mother? After twenty years, she developed fibers in her lungs and went on oxygen for a while. Now she is off MX but her lungs are compromised.
3. Injectable methotrexate. One shot every week, unless fighting a cold or anything. Immune system is severely compromised. But it may not work for everyone either.
4. Biologics used in combination with methotrexate. But you can't take them if you had cancer. And after time, they may stop working so you need to switch to another injectable, expensive biologic.
5. New round of RA drugs, including Xeljanz (which is being heavily marketed by Pfizer to me) which is another type of drug.

 With RA, you can only hope the drug they put you on will work. When one stops working, they try something new. When they give you a new drug, you have to wait 3-6 months to see if there is any benefit for you. As you wait, the disease progresses.

The goal of treatment is to put RA into remission and reduce flares of the disease. But this treat and wait system make treatment a total crap shoot as you don't know what will work. And you may wait for a long time to see if it will work.

It sucks.

Since I am allergic to prednisone and plaquenile and I had breast cancer, my treatment options are more limited than the average bear.

But now a rocket scientist has come up with a blood test that will  help take the 'trial and error' or 'crap shoot' process out of  RA treatment. Its about time.

There is a huge lesson here for all of us

We all have a lesson to learn here. We need to learn to accept our lives for what they are instead of allowing parts of it to cause us stress or depression.

I have now read this article three times. Learning to Live with It: Becoming stress free.

The more I read it, the more it helps me think of my medically disastrous life. I have continuous problems where my health keeps throwing another disaster my way and I have to learn to cope each one. A cancer diagnosis was one - maybe a touch of PTSD with that? But what about an RA diagnosis? Making life more fun each time.

Every change requires adaptation to survive and learn to readapt to the new parts of your life. But we don't need to change the external forces in our life - whether a bad partner, but learn to change our life to cope in its new version.

But the goal of learning to live with, not necessarily to accept it, but to cope, survive and thrive. That has become my goal now. I will keep reading and maybe learn some more about this. Many lessons here.

It all caught up to me

Exhaustion that is. I have been riding this wave of feeling okay most of the time. This happens every so often. Wednesday I felt it a bit. I came in the door at 530 after getting my nails done (a post chemo personal preference - after destroying my nails in chemo, I appreciate them much more now) and felt a wave of exhaustion come over me. We did go out to dinner anyway. I figured I would be okay if I just went to bed after that.

Yesterday I was okay in the morning and made it through work, a couple errands and the grocery store. By the time I got home, I was tired and decided I needed to lie down for an hour before making dinner. An hour later I got up and told my husband it was left overs in the microwave for dinner and back to bed for me.

I was exhausted. I was more than exhausted. I slept all night. The alarm went off and I slept for another hour.

I am still tired but I think I can get through today and probably cook dinner.

This is what happens to me. I function normally and do normal non-energetic things. Then all of a sudden I am completely wiped out. Exhausted.

Tomorrow I hope to sleep late. Maybe even get that crucial 12 hours of sleep. Thank you fibromyalgia and rheumatoid arthritis for doing this to me.

Vacation breasts?

Or even 24 hour breasts? Really? Yes, seriously. This is the latest in the fad for women. What happened to 'love your body the way you are'? Well thanks to this new doctor in New York, you can get 'instabreasts' which last 24 hours for a paltry $2500. Then in a couple of years you can get vacation breasts - that last 2-3 weeks.


Basically they inject silicone under your breasts and make them appear larger. Why, why, why? What about all the women who have had breast cancer and now just want to look and feel normal again?

There is one voice of reason in the video from a man who points out the idea that why are we messing with nature and having these invasive procedures? And if you had them done repeatedly,  would there be any long term implications?

The big scary headline

The latest big scary headline from the pharmaceutical industry says that it will cost $2.5 billion to bring a new drug to market. That's a lot of hype over a little factoid. And this kind of thing pisses me off. Increasing drug prices are an increasing part of medical costs in recent years.

First of all, yes that is a hell of a lot of money. There is no denying that. Second of all, its not as big as it sounds in terms of how they will recoup their money. For example.

If a new drug is developed that will treat a mere 10,000 people each year and costs $5000 per month (not an unexpected amount), it will take the drug companies 4.17 years to recoup their expenses. 10,000x$5,000x12=$600,000,000. $600,000,000x4.17=$2,500,000,000.

And this is why I really have no patience with the drama from the pharmaceutical industry:

"Development costs are one factor companies use in determining how much they will charge for newly approved prescription drugs. But they also weigh demand, the competitive market in their therapeutic areas, and the value they believe a treatment can provide to patients."

So if you thought the so-called 'death panels' were going to put a dollar value on human life, you don't need to worry because the pharma industry already did when they include the 'value they believe a treatment can provide to patients'.

But I do understand the value the pharmaceutical industry brings to medical advancement. I just have a problem with the dollar amounts and drama.

Snake oil or good treatment?

Every so often I become a skeptic, well maybe a bit more frequently, but sometimes I am just not sure what I think of new treatment options. And here is an example.

Women with dense breasts run a higher risk of breast cancer being detected later as opposed to sooner as the density makes it more difficult to detect tumors by mammography. So in Australia, there is a new treatment for women with dense breasts. It is an implantable tablet that is placed under the skin and lasts for about four months before they need to go through it again. It has two benefits - reducing breast density and to reduce perimenopausal symptoms. You can see a video on it here and visit their website for more information here.

But its hormones - testosterone and others. Its called T+Ai.... Me I am not a big fan of hormone treatments after what happened to women who were treated with them in the 1980s and 1990s and then found it lead to higher rates of breast cancer. I know testosterone is not a breast cancer hormone per se but I feel it would be messing with my body's balance too much. And if it reduces breast density it is making a permanent change in your body which can't be undone.

It sounds good and could help women be able to detect breast cancer sooner. But is it fear mongering? OMG, you have dense breasts and that means you will get breast cancer and die because it won't be detected early no matter what you do?!!!! Maybe for high risk women with dense breasts but not for huge groups of women.

So my jury, of one, is still out on this one. I am a skeptic.

Over treatment issues again

Electronic medical records do all kinds of helpful things. I remember going from doctor appointment to doctor appointment, lugging a six inch thick file. Now the doctors and nurses carry laptops or tablets and can look up information quicker to see when I last had a blood test or MRI.

Now the data is being mined to find out if Americans are getting their cholesterol blood tests, mammograms, and colonoscopies and all sorts of other helpful tests. But also to see if people are getting their tests too frequently.

And it turns out that some Americans are getting too many colonoscopies. Really? I mean who wants to have a camera 'there' too often? I am personally in the five year club for them. My husband was in the two year club but now is also in the five year club. But the average healthy person needs them every ten years, no more often.

If you are over fifty and never have had a colonoscopy, can I tell you two stories about people I know personally who waited too long? One is now stage IV colon cancer.

There are concerns with too frequent testing unless there is a compelling reason - higher costs and higher risks. Colonoscopies do come with risks as do any invasive peek inside you. And even if you do not pay out of pocket for a colonoscopies, there are costs incurred.

Medical over-treatment is a real problem. Antibiotics are given to treat viruses. This leads to antibiotic resistant germs. Choosing Wisely is an established project to help patients question tests or procedures that might actually be over treatment. Yes an ounce of prevention is worth a pound of cure. But too many ounces of prevention can quickly add up to the pound.

Its not a tumor....

So life in cancerland is basically summed up by the one thought: "will it come back?"

As this child helpfully tells us in Kindergarten Cop, that is the one thing we can't get out of our heads.

Every ache and pain could be a something, meaning a bad something. We have to learn is how to balance that thought. Sometimes helpful people say wonderful, well meaning things like this to us which help raise our cancer-cootie-concern-level. Or sometimes a peak inside our insides in an MRI, PET or CT scan gives us bad news. At which point the cancerland roller coaster starts going up the really steep hill and becomes a whirling twisting ride until we hopefully can get back to the smaller hills.

No I am fine but this video popped up on my radar the other day and it makes a valid point.

Bad news doesn't always mean bad news

Puma pharmaceutical's new drug, neratinib, did not perform as well as Herceptin in the latest clinical trials - by the definition of extending disease free survival.

However, bad news doesn't mean bad news when you look at the rest of the story.

"As expected, there was no statistically significant difference in progression-free survival and objective response rate for the paclitaxel plus neratinib arm compared to the paclitaxel plus trastuzumab arm," Auerbach said. "However ... while the development of other HER2-targeted drugs has produced a clinically meaningful benefit to patients with HER2 positive breast cancer, these drugs have had little impact on CNS metastases. As a result, we believe that there remains an unmet clinical need for reducing the incidence of CNS metastases, and the results of the NEfERTT study demonstrate that we may be able to provide this type of improvement with neratinib."

CNS metastases are Clinical Nervous System mets (I had to look that up). Which would really suck. So that means that while it did not extend disease free survival it did open a door to other advancements. So stay tuned, I guess, for the rest of the story. Or maybe this is just called progress.

Personalized cancer care is looking more like a crap shoot

All sorts of research is being done on personalized cancer care. But it looks like a crap shoot to me.

There have been some recent developments:

"This summer, a Mass. General team showed that it was possible to isolate rare tumor cells circulating in the blood and analyze them to understand how a patient’s cancer was changing. Other researchers have been working on developing mouse avatars, in which a patient’s tumor is grown in a lab animal in which new therapies can be tested."

This is pretty cool. But there are still problems. For example, researchers have been taking cancer tissue from patients who's cancer has returned and then bombard it with different therapies to see which ones work. The premise is then that the treatment will work in the patient.

"Researchers must show that the drug predictions that seem so promising in a dish actually work in patients. They also will need to deal with technological issues, such as the time it takes to grow patients’ tumor cells in a dish — between two and six months in the study, and not every attempt was successful."

Not only does the time to grow the tumor cells prolong the wait for treatment - which cancer patients with a recurrence do not have. But then there is no promise that the treatment will work.

So its a crap shoot. The patient has a choice - try the best treatment available now or wait two to six months to see if something better might be chosen from a petri dish? Does anyone have a different suggestion?

Or maybe 'more research is needed' as they always say.

Cats Help Researchers Develop Treatment for Breast Cancer

A couple of years after my breast cancer diagnosis, a friend called and told me her cat, Abby, had been diagnosed with breast cancer. Abby was fairly young, about 6 (the cat, not the friend) and she felt lumps on her stomach when picking her up. She took her to the vet and was told the not so good diagnosis.

For cats, there is no chemo or radiation. They basically can  have a surgery that can best be thought of as a kitty mastectomy and that's about it. For Abby, even after the surgery, she lasted less than a  year before it became obvious that the cancer had spread and was causing her lots of pain and very difficult decision was made.

That was my first knowledge of feline breast cancer. And then I did some research and found out it is a fairly common killer of female cats.

But now, cats are being used to help find a breast cancer treatment. Cats are more closely related to humans than mice. I don't even know if mice get breast cancer. Usually for clinical trials they are bred to have certain conditions so they are more appropriate for the potential trials.

The cats get an injection before surgery and then again a month later. They are then monitored to see if there is a recurrence - which is usually what kills them now. The hope is they will live longer, healthier lives.

So in my (tiny, non-medical, chemo impaired, fibro fogged) mind, it would make sense to do research for breast cancer on animals that actually get the disease in hopes of curing them as well as humans. I am not in favor of animal testing as a rule but in this case, they are hoping to cure the cats from something for which there is no current cure.

I am a cat lover and am typing this while being supervised by my 20 year old cat. I would hope this would be a treatment for them and us.

Putting emotion into our medical decisions

Have you ever gone to the doctor and insisted that you needed a specific test or treatment? You were so wrapped up in the emotions of moment and the ailment that you were not being rational.

You aren't alone. Emotion often leads us to choose unwisely. An example of this is the mammogram decision. Why have one? What if the result is bad? (This is the reason I will never go to a psychic.) Who wants to get bad news. And then the worst, what if the bad result is wrong and its actually nothing. That would be a false positive.

But apparently women do not think about the risk of false positive when they have mammograms.

"American women face conflicting advice about whether to be screened for breast cancer, at what age and how often. The decisions they make are often more strongly influenced by fear or a friend’s experience than by a thorough understanding of the benefits and risks of mammography."

But before we have any test or procedure, we need to be sure we educate ourselves on the possible outcomes and potential problems. In the case of breast cancer, it can be anything from a false positive to over treatment of a cancer. We just need to know first and make a smart decision.

Lessons from famous cancer people

Just because someone is rich and famous and survives cancer, it doesn't mean they can invent a new way to cure cancer. There are a few I would like to mention here. I have nothing against these women at all but am concerned about the weight their name carries and how many followers they have simply because of their fame.

Suzanne Somers - she has a book out on chemo free treatment of cancer based on interviews with doctors. I'm sorry but there is no way to globally dismiss or prescribe any type of cancer treatment without a one-on-one conversation.

Farrah Fawcett declined conventional, FDA approved cancer treatment which would have required major surgery and resulted in needing a colostomy bag for life and went to Germany for a different treatment. Which unfortunately was painful and did not work in the long run. This reminds me of the families who went to Mexico for Laetril treatments in the 1970s. If its not approved here, there may be a good reason for it. And running overseas may not be a good idea.

In a recent article in AARP, long time friends, Melissa Ethridge and Sheryl Crowe talk about their cancer treatment successes. While I found the article interesting, I was not too thrilled with the last image:

Melissa 'turned off' her BRCA gene by eating better. And Sheryl meditates so that her cells function at a higher level.  I'm sorry but you can't turn a gene off. Its part of you. And maybe meditation helps you but it doesn't mean it can cure cancer. Being healthy can help you reduce your risk of cancer but don't think daily meditation will keep you healthy.

I can go on. These four women are ones who first came to mind. If you are rich and famous you have access to the best care and the best types of supplemental treatments from personalized workouts, professional chefs, and expensive organic food and personal doctors. But that doesn't mean your treatment is going to work for anyone else. And please be clear on that to your fans and followers.

Practice makes perfect

Down under, ovarian cancer research is going to be based on the model for researching breast cancer - many subtypes, etc. Ovarian cancer is much rarer and has much higher fatality rates. The biggest problem with ovarian is it is often not detected until it is later stage. Their is no 'mammogram' for ovarian cancer for screening for high risk women.

"Ovarian Cancer Australia has announced a landmark national action plan, following in the footsteps of breast cancer researchers.

They hope the plan will see the same gains in survival rates and treatment options that similar strategies have made for other cancers.

The plan aims to diversify clinical trials and tailor treatment to specific subgroups of the disease that have only recently been discovered.

"What we know about ovarian cancer now is there are many more subgroups than we previously thought - that's come from understanding the gene wiring of the cancers," researcher Professor Clare Scott said.

An initial investment of $1 million between Ovarian Cancer Australia and the Peter McCallum Cancer Centre has been put towards establishing new clinical trials that target the unique molecular characteristics of each cancer subgroup."

So after practicing cancer research for decades, the advancements are going to be applied to ovarian cancer as well. Its about time.

Its Not a Contest

Its not a contest to see who has the biggest list of ailments or who is the healthiest. A few weeks ago, while at the gym, I met a woman who was in the breast cancer club - we recognized our lymphedema sleeves, which leads to conversations, how long has it been (15 years or so for her). We chatted a bit about the benefits of our gym for dilapidated people. She said she has Parkinsons and they worked very well with her. I said they had been so good with me working through my RA and fibromyalgia and her reply was 'okay, you win'.

I thought to myself, no it isn't a contest and I don't think I wanted her diagnosis either. She had tremors visibly. 

Why did she think it was a contest? I have no idea. Maybe then she could think of me as someone in worse shape so she could feel better about herself? I have no idea.

Yes you may call me crazy

So what things are bad for my dilapidated body? Standing, lifting, spending long periods of time walking around, etc.

And what have I done? Back in 2007 during chemo, a friend told me I needed a hobby so I relearned how to knit and crochet. Voila, I became addicted and have a giant yarn stash. So I started selling my scarves and such at local craft shows.

I started in 2012 with one show, last year with 5 or so, this year I think I have 8. Or maybe its 9. In addition to knitting, I have started making hair pieces and clips reusing old clip on earrings. (I hope someone likes them besides me.)

What am I thinking? My back hurts this morning already before I am leaving. I will be standing on a hard floor all day, after bending, lifting, and carrying for a couple hours. I am sure I will be in 'perfect' condition by the end of the show.

And then I need to stop by the outlet mall and buy a pair of new sneakers. (Another non-friendly back activity).

Tomorrow, it will be a repeat. Except this show will be 15 minutes from home instead of 45 minutes.

Monday I will do a lot of sitting around and taking pain meds and icing my back.

All of this is self inflicted so you may feel free to call me crazy.

But craft shows allow me to have a creative outlet who's benefits have been researched and noted - knitting can be as beneficial as meditating - and raise a little cash to buy more yarn. And knit more.

Poked and prodded

Yesterday I had a dermatology annual skin check. This is a real conversation:

"How long has this mole been two colored?"

"I have no idea, its on my butt and I can't see it."

We did get a snicker out of that one and she laughed at herself. But the mole is no longer as it has been scraped off. And its a little sore and its on my butt. So this will be a fun day.

I also was a little daring. I had a wart appear on my left arm. My left lymphedema arm. My left lymphedema arm which cannot have needles or pressure or cutting or anything. I thought I was going to be stuck with the damn thing for life.

But the dermatology NP thought that since burning it off wouldn't be a problem because its  surface thing. I thought another second or two and said fine, go for it.

Right now my arm feels fine. I may wear a sleeve for a day or two just in case. I usually do not wear a compression sleeve except when working out or flying.

Then for more fun and games, I am going back to the doctor this morning for another look at my toe to see if I need more antibiotics or not. The first thing they do is squish the part that hurts. Ow.

Healing and methotrexate

These days a little thing can do me in for a few days or even weeks. I have had a cold that started last week and lingered into this week. I assume its the same one as opposed to a new cold (or the flu or Ebola). But I am slowly getting better.

I was a good girl and did not take my methotrexate last week - it compromises my immune system and I am supposed to skip it if even a tiny bit sick. I went to the doctor on Saturday for an infected toe. Not an ingrown toenail but an infection along the side of my toe. I have been on antibiotics since then. So this week I also skipped my methotrexate. Again.

Per my doctors since I have been on MX for so long, a certain level has built up in my system. But if I keep skipping it, how long until my levels start going down and my RA starts acting up?

For now, a little cold can turn into a lot more. I just wish I could get heal like a normal person.

More faces of cancer

There are more faces of cancer. First is the lovely story of this young woman who got married before both her parents died of cancer. They made it to walk her down the aisle before dying. The young woman started taking their pictures as they went through cancer treatmetn together. An amazing series.

Cancer has too many faces. I wish it would go away.

Dosage changes

Last year or maybe earlier this year, I have chemobrain and I can't remember exactly when, the oncologists in the US got together for a big event which they called a conference. They did get a lot of work done and came up with some new recommendations for changes in cancer treatments. One of these was to state that it is better for women with a breast cancer diagnosis to be on Tamoxifen, Femara, or the other AIs for ten years instead of five.

Well someone forgot to tell the FDA this so they FDA says five years and the oncologists all say ten years. But the FDA makes the rules so the oncologists have to bring it up to speed. One woman in Michigan has started an awareness effort to this end.

But it does raise an interesting thought. When a drug is initially approved by the FDA, the approval includes dose sizes, length of treatment, etc. Then additional research is done, whether it is on children instead of adults, or for a different ailment, the FDA needs to change its guidelines so an  amended approval is needed. I am sure there is some fancy process for this involving expensive lawyers drawing up paperwork as well as lots of research time but I have no idea what it is.

In this case, the oncologists came up with their new recommendations and now some one has to get the FDA up to speed so we can all be less confused.

A life changing experience

I am not writing this as a fundraising plea but to tell about a life changing experience. We all may need these sometimes.

There are breast cancer retreats, support groups, pink groups, pink girls, and I can go on and on and on. But occasionally one comes along which is a life changing experience for the participants. A good example of that is Casting for Recovery. It teaches women with breast cancer a new skill, provides psychosocial and medical support, and after a three day all expense paid weekend, have a life changing experience. Read this story about a woman in Oregon and her experience on the retreat. 

When I first heard about Casting for Recovery, I thought how cool is that. I'll have to sign up and I did. Then when I was driving to the retreat stuck in Cape traffic on an August Friday afternoon, I thought to myself: 'What am I doing? Going away for the weekend with a bunch of strangers. How did I get myself into this one?' And I came up with a plan. I was going to have gall bladder surgery a month later. I decided if it was awful, I could always fake a gall bladder attack and leave.

By the end of the weekend, I had new friends, reached a new level of acceptance with my medical history, and relearned some childhood fly fishing skills. It was a life changing experience for me.

Swimming along

With all my physical ailments, numerous well intentioned people have suggested swimming and water aerobics for me. My response is 'um, no'. I don't like swimming. In fact I hate swimming. I hate swimming laps to be specific.

I think this goes back to my childhood (as all strong feelings do). I grew up in a neighborhood with a community swimming pool. Once you passed the swimming test (2 laps, tread water for one minute I think) and were over the ripe old age of 8 or so, you could go to the pool unsupervised by parents all day. (This was the 1960s where children went outside all day long without a leash.)

We would ride our bikes (past the big bad scary dog who would chase us) every day the sun shined to swim and hangout at the pool all day long. We played Marco Polo, dared each other to go down the slide head first, learned water ballet, and generally had fun. We would leave after the ice cream truck came around 3pm and ride our bikes home.

At some point, we were all encouraged to join the swim team. They were encouraging us to channel our energy into lap swimming. We started to swim laps every day, over and over again. The thrill of the pool quickly turned into the boredom of lap swimming. We were then too old to play Marco Polo all day and had all gone down the slide headfirst on our backs. And they made us swim laps.

At summer camp, I even passed junior lifesaving. I learned more water ballet. But they didn't make us swim laps.

To this day,  I don't like swimming laps. I am not a water aerobics person. That would mean being there at a specific time which I can never do because my schedule varies so much.

I do like floating around a nice warm lake or ocean with a little float. I can swim if I want to but rarely feel the urge. And now there is a new study that says it doesn't matter for fibromyalgia if you do land or water based activities. I can just apply that to all my other ailments and can happily avoid swimming laps.

Attitudes are everything

Through the medical roller coaster of a cancer person's life, what is the one thing that gets you through it all? Your attitude.

That's easy to say. Some days, my attitude can seriously be slipping. for some silly reason it can be affected by those minor things like pain and distress levels.

So how am I doing? Middle of the road someplace. Exhaustion yesterday which lead me to stay home from my aunt's 80th birthday party. Annoying not-ingrown-but-still-infected toenail that has me on antibiotics and off methotrexate. And if it does not respond to the antibiotics, they will have to cut it open... Ick. And my back is killing me.

But none of this is cancer so I will stick a cheery smile on my face and suck it up while I dream up some yummy dinner that will preoccupy me this afternoon.