Thursday, December 18, 2014

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?

Wednesday, December 17, 2014

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.


Tuesday, December 16, 2014

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.

Monday, December 15, 2014

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....

Sunday, December 14, 2014

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.

Saturday, December 13, 2014

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

Friday, December 12, 2014

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?

Thursday, December 11, 2014

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.

Wednesday, December 10, 2014

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.

Tuesday, December 9, 2014

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.

Monday, December 8, 2014

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.

Sunday, December 7, 2014

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?

Friday, December 5, 2014

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...

Thursday, December 4, 2014

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.



Wednesday, December 3, 2014

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.

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