Sleep Deprived

I have had this 'dumb a$$' CPAP machine for 12 days now. I hate it. I hate the little mask over my nose that squishes it even though I have loosened up the strap as much as I can.

I hate the way the hose from the mask to the machine comes from the back of my head so I can't sleep on my back without the pillow under my shoulders and neck so the hose is off the pillow so it doesn't stick into my head.

I hate the little online app that is like big brother and tracks how long I use it, if the mask is sealing, how many apnea 'incidents' I have each hour and how many times I take it off and on each night. It also has a little scoring system that tracks all this information and makes you feel like a loser because you can't quite sleep right with it on.

Now I need a nap because I didn't get enough sleep last night. Again.

This machine is supposed to make it so I can sleep better, not sleep less.

But I will suffer in silence until Friday when I go to the CPAP clinic to see about a different mask. I asked them if I should bring the mask I really hate with me. They laughed, and said yes.

Rant over. I am just frustrated and tired.

And after 10" of lovely winter whiteness in the form of snow on Thursday, we got another 5" last night, and are due for another 8-16"+ on Monday. Which means I am trapped at home. Again. Grrr.

ASCO 2016

Next Friday, June 3, ASCO 2016 starts and runs through the weekend. So what? ASCO is the American Society of Clinical Oncology and each year at their annual meeting, all sorts of new research is announced and made available to the public. Usually I realize that ASCO is going on when its almost over so I am sort of proud of myself that for once I figured it out before it started.

What does this mean to the average cancer person? Not much unless you want to find out about the latest in cancer research. Personally I try to keep up on all the advances that relate to me. I recommend it to others to go through.

You can follow the information on asco.org. Some of the biggest advances actually are available in the news as they can be that significant.

My 2 cents for the day.

Gene editing to cure cancer

Okay, I admit I know about the 'genome project' but have basically ignored it because I did not understand much about it. And I still don't understand much about it. But because of what was learned about genomes and genes, there have been advances in what can now be done to treat cancer and other diseases.

So there is a little girl in England who was diagnosed with ALL (Acute Lymphoblastic Leukemia) shortly after her birth that was very aggressive and recurred seven weeks after treatment ended. They ran out of treatment options and as a last ditch effort, they used a gene editing tool to save her life. Since the treatment four months ago, she is doing well and is at home with her parents.

I don't really understand it well enough to explain it all. But you can read about it here.

Its too soon to tell if this is actually the cure that was hoped for and what the long term effects will be. There is  no way of telling if this could some day work for more children with cancer.

What I do find interesting is that this represents a big advancement in cancer treatment and represents the first steps in what the future could be.

What if there was no more chemo?

We have heard this one before where doctors do something to your T cells so they kill off the cancer cells. But we have always heard the infamous 'but more research is needed'. Well how about this?



The took a teenager's T cells and engineered them and put them back in his system and now he shows no signs of cancer. I'm all for this type of treatment. Getting rid of the poison part of the slash, poison, burn of traditional cancer treatment.

For more thoughts on medical advances that are blazing the way for the future read this.

Now from the professional cancer patient's take on this. I think it sounds great. But, and there is a big fat 'but' here, this was done on a young, relatively healthy teenager with leukemia. How would that impact me the thyroid/breast cancer with multiple other ailments? Probably not so much. I have not found a single clinical trial for which I would be eligible for any of my ailments. The reason for this is I have so many other ailments, no clinical trial wants me.However I do not think this would be any help to me if I was ever diagnosed with a similar cancer because my immune system is a disaster from rheumatoid and its treatment.

So I am pleased that this advancement has happened and may be blazing the way for 'cures' for some more cancers for some people. But I still don't have the warm fuzzies on what it could do for me.

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...

Medical advances come at a cost

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

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

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

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

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

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

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

Stem cells anyone

I am not a biochemist or anything, nor am I a medical professional. So I do not pretend to understand everything about this kind of scientific stuff. But I do realize this is a major breakthrough.

Someone discovered how to make stem cells cheaply and easily.

The genial 63-year-old anesthesiologist who left stem cell scientists shaking their heads in wonder and puzzlement last week, with the discovery that a simple acid bath could be used to generate powerful stem cells, doesn’t even have a PhD.

I read about this earlier this week when I read this article that said it was essentially a 30 minute acid bath and voila, stem cells.

From the little I know, I still consider this big news.

But also it shows how research can go in the wrong direction for years and for billions of dollars. Not just for stem cells but for anything. It just took a new pair of eyes to figure out what other people had been trying to figure out for so long.

Now we need more progress....

Test Dilemma

This week a new recommendation came out that people at high risk for lung cancer - particularly current or previous heavy smokers - should be screened for lung cancer with CT scans. This is another way that cancer can be detected at an earlier more treatable stage.

'Great,' we say. On the surface this seems like a good idea - catch a cancer early on and save more lives. Advanced testing options which have become relatively more accessible and affordable over the years have opened up testing options for millions.

But, and there is a big fat BUT here, does the additional screening add false positives which equal expense and stress for the patient? This is the same argument for women who have had breast cancer that they all should have MRIs in addition to mammograms each year to screen for recurrence.

All this wonderful new testing does great things. They find things that are something 'bad' and catch it early. They also find things that are big enough to see but too small to do anything about. And where does that leave the patient?

Medical advances are great but sometimes the advances exceed the capabilities that are required to diagnose and treat the findings.

This does not even touch on the issue of over testing and the emotional toll. Whether a positive or negative result, the testing experience is an emotional roller coaster ride for the patients. False positives and false negatives are realities in the results. Non test is 100% fallible so these do take place.

Me, personally, I am a big fan of the lets waiting and watching at this point. Unless I have symptoms I am not bounding off to see the doctor. I don't want more tests. I am happy this way.

New doesn't always mean better

Back in 2007 when I was diagnosed with breast cancer, all the patient boards were talking about this new kind of radiation called 'Mammosite' or brachytherapy. The advantage to it was you went twice a day for one week as opposed to once a day for 8 weeks. I asked my radiation oncologist and she said it was not yet available where I was treated. I was a tiny bit disappointed but figured I could suck it up and cope with daily visits for near 8 weeks. (The biggest pain about radiation treatment is having to go EVERY day for weeks.)

A few years later, I went to a cancer treatment conference at the same hospital and they said they were just beginning to offer this mammosite radiation to selected patients and explained the procedure how beads were inserted during surgery, etc. I felt a faint tinge of regret that I hadn't had the newer treatment type. It was newer so it must be better? Right?

Wrong. Now after it has been used for five years and on more than 50,000 women a clearer picture is emerging..

1. The outcome for patients is not necessarily better for women who have mammosite radiation than regular full breast radiation.
2. There is a much higher rate of side effects with mammosite radiation - 35% vs. 18% for regular radiation.
3. Mammosite radiation costs twice as much as traditional radiation.

Hmmm.... So newer isn't necessarily better. This doesn't mean that mammosite shouldn't be an option and maybe teh shorter treatment period will benefit some women. I think I'm happy with the course of treatment I had.

Often times there are treatment advances and cancer patients look back with regret 'why couldn't that treatment hve been available when I was being treated?' Not this time. No regrets for me.

Stronger cancer drugs

There is a new type of cancer drug being investigated. They are called carboranes:

"Over the past decade, we have seen an increasing interest in using carboranes in drug design," said Mark W. Lee Jr., assistant professor of chemistry in College of Arts and Science. "Carboranes are clusters of three elements — boron, carbon and hydrogen. Carboranes don't fight cancer directly, but they aid in the ability of a drug to bind more tightly to its target, creating a more potent mechanism for destroying the cancer cells.

In the study, Lee and his research team used carboranes to build new drugs designed to shut off a cancer cell's energy production, which is vital for the cell's survival. All cells produce energy through complex, multi-step processes. The key to an effective drug is targeting the process that cancer cells depend on more than healthy cells. By increasing the binding strength of a drug, a smaller dose is required, minimizing side effects and increasing the effectiveness of the therapy. With carboranes, Lee found that the drug is able to bind 10 times more powerfully.
"The reason why these drugs bind stronger to their target is because carboranes exploit a unique and very strong form of hydrogen bonding, the strongest form of interactions for drugs," Lee said."

They have been tested on breast, lung and colon cancer and are very successful. They are also being tested on other forms of cancer. What is significant about their strength is that you can take a smaller dose which will have a stronger effect but will have fewer side effects. I'm all for fewer side effects in life.

Of course more research is needed so it won't be around anytime soon. But I still call this a significant advance.

ASCO recap

The ASCO conference wrapped up this week. I did blog about it a week or so ago and now Cure Magazine has a special issue out on the latest from it. Its full of advances which is exciting to read. You should go read them yourself ifyou are interested but basically I can sum it up as 'Progress' with a capital P.

Yes there is a lot of research going on out there (because we need lots of research studies) and sometimes it seems like advances are announced but nothing really changes because 'more research is needed' or whatever reason. I think when you see a lot of research together, its different. The impact is much more significant. We need that.

Clinical trials and long term after effects

So yesterday, after my deeply profound post on the long term affect effects of chemo, I went to a conference for people living with cancer. I sat through a couple of sessions on the state of cancer care and its future which were very interesting.

They were talking about new treatments coming out - for example additional treatments other than Herceptin for those who are Her2 positive. There were also some discussions on radiation treatment advances and how the new 3D and IMRT machines allow for more precise delivery of radiation - hence sparing nearby body parts which do not need to be scorched.

There was some conversation of things that are in clinical trials should be available soon or are even in the first round of human trials. So I started thinking about why are there no clinical trials for us longer term people? There was a clinical trial I wanted to participate in - for the recurrence vaccine. While I am not a fan of needles, I would be happy to get a series of shots if it could reduce my chance of recurrence. Then I found out it was only for people who were less than two years out from treatment so I was not eligible.

I understand that they want to have precise groups of volunteers in clinical trials which meet a specific set of criteria so they are comparing apples to apples with fewest possible interferences. These become very small groups. But it seems once you are through treatment, there are no trials available. And that seems wrong.

We are still people coping with a cancer diagnosis and once we get through treatment, we are excluded from research. No one seems to care about the long term effects. Too may potential variables which could interfere with a trial have entered our lives so no one wants to do any research with us. But we still count.

Another treatment 'advancement'

The latest suggestion for breast surgery is to use ultrasound guidance during surgery to improve odds for clean margins and therefore local or regional recurrences and the requirement for a second surgery. This sounds good. It is based on a small European study but is now suggested as being the newest standard of treatment.

Well that is just ducky. I mean who wouldn't want an advancement in treatment. But (and of course there is a big but here), I have a few questions on this:

1. When would this become the standard of treatment? Does the FDA have to approve it? Probably not, but probably the Surgeon's Standard Board Association or whatever they are called - the people who set the surgical standards. So this will probably take a while. Hospitals would need to adopt the standard and then individual surgeons would need to be trained -  how do you hold the ultrasound thingy and cut into someone? Even if its held by someone else, isn't it be held on top of the thing the doctor is trying to remove? Maybe its a good idea I'm not a surgeon. (Not that I am any better off as being the patient.)
2. While this has the potential for saving some lives,  is there an increased cost involved? Do all hospital surgery rooms have the right kind of ultrasound machines for this or do new machines need to be purchased? In the age of eyes on increasing medical costs, increased expenses go under the microscope. While I am not trying to put a value on an individual's life but we have to consider this. If hospitals need to purchase more ultrasound machines for this surgery, could that money be better used by them for hiring more nurses to provide better care or a different machine for another use? Yes in an ideal world, hospitals would all have all the money, personnel, and machines they need - but we live in reality, not an ideal place.
3. This was based on a TINY study of 124 patients and one group of surgeons? Is this representative of all patients and all surgeons? Maybe more studies are needed - or at least at more than one hospital.

I am a tad skeptical but would welcome the progress - and just hope I would never need it.

XRCC2

Do you know the secret handshake that tells you what this is? Hmmm.... I'm not sure if I can tell you. Do you have the clearance? Pinky swear you are okay to know?

Its another breast cancer gene that was recently discovered by Australian researchers. This is very important. The BRCA genes only account for 10-20% of all breast cancer diagnoses. Another gene may not account for as many but it is the next step in discovering more genetic mutations which lead to breast cancer and other cancers.

The significance of this breakthrough is due to the latest type of gene sequencing - called 'massively parallel technology'. Now that's a mouthful. But if it works and creates progress, I don't care how many big words they use.

I also hope that with the discovery of another gene, Myriad Genetics, which thinks they 'own' the BRCA genes, will
lose their ability to 'keep' their gene.

Going for clean margins

Clean margins are the goal in cancer surgery. Clean margins does not mean there is no doodling on the margins of your book. Clean margins mean there is a distance between the edge of the incision and any signs of cancer. Often times they are not discovered until after surgery at the biopsy and require additional surgery. Which is no fun - who wants a second surgery? Not me, thank you.

So someone has discovered a way to solve this problem. But then, it has been discovered. When will it be put to use in my hospital so that if I require more surgeries I can benefit from it.

I like to hear about medical advances but I always wonder if/when I will ever benefit from it. Grrr.

News of the day

Random news that piqued my interest this morning:

1. Three Quebec mammography clinics missed 109 cases of breast cancer - primarily due to one radiologist who has since retired. I am glad I did not go there. But also this is just an example that errors can occur everywhere and if we are not happy with results or have questions, we should get a second opinion or ask our questions until we get the answers we need.
   
2. A giant leap in personalized medicine occurred as two Boston area teams compiled a giant encyclopedia   "...that predict the vulnerability of hundreds of different subtypes of cancer to dozens of drugs. The massive catalogs, which were made freely available online Wednesday, are an important step toward the routine personalizing of cancer care, in which patients will receive treatments tailored to the specific genetic changes that influence a tumor’s response to drug regimens."
   
   This is sounds cool and sounds like lots of progress but its more than my tiny brain can comprehend. I'll just let someone else summarize it for me. If I could find the encyclopedia I might attempt to look at it.
   
3. Its time for all of us to start growing wild tomatillos - which are a native weed - which has been discovered to contain medical properties.
   "So far, the researchers have demonstrated 14 compounds found in the plant can fight numerous cancers and tumors without any apparent side effects or toxicity—namely: melanomas, thyroid cancer, head and neck squamous cell cancer, breast cancer, glioblastoma brain tumors, and certain leukemias. Other studies suggest these same molecules may combat both esophageal cancers and pancreatic cancers." I'll ditch the flower garden and lawn and grow some weeds instead.

Now I am off to work for the day to ponder these latest advances.

Yoo hoo, its about the patients

Its not about the money, its not about the money, its not about the money, its not about the money, its not about the money....

I can go on and on in an effort to pretend that all those cancer advances are about the patients and not about the money. But I know I am only pretending:

• I do realize that businesses are out to make money.
• I do believe that insurance was once intended to help people and not be about the money and people getting rich. 
• I do believe that medical advances can be very expensive to develop.
• I do try to believe that the health care industry - from doctors and nurses to health insurance to drug and device manufacturers - at some level does really care about the patients.

But I have a real problem when I read about people who:

• Can't afford their insurance premiums because they are so high due to their health issues
• Can't afford their co-payments because they are in the thousands for a single round of chemo
• Co-payments are so uneven that one patient pays a couple of dollars and another patient pays a few thousand for the same medication
• Hospitals look for ways to make more money and then claim its in the best interest of the patient - hospitals have patients come in for an injection because they can make more money than if they taught the patient how to self administer.
• Medical bills are a leading cause of bankruptcies.

"“Patients have to pay more for their premiums, more for their copayments, more for their deductibles. It’s become harder to afford what we have, and what we have is becoming not only more costly but also complex,’’ said Dr. Michael Hassett, a cancer specialist and policy researcher at Dana-Farber Cancer Institute in Boston.

Insurers also are being squeezed by laws that require coverage and restrict premiums. And the burden is growing on Medicare, which in some cases pays for treatments and tests not shown to benefit patients.

Why have costs escalated so much? To some extent, it is the price of success.

Cancer deaths have been declining in America since the early 1990s. Two out of 3 people now live at least five years after a cancer diagnosis, up from 1 of 2 in the ’70s, says the American Society of Clinical Oncology."

Sorry. I don't believe its the price of success. Yes I believe that medical advances probably do cost more but I also believe some people are getting really rich. And that some people are forced to make a decision between feeding themselves and their families and getting much needed medical treatment.

Too creepy for me

I am not sure I am ready for the latest in medical technology. Its just creepy. First how does an implanted chip that automatically releases doses of medication either timed release, when wirelessly told to by your doctor, or when something triggers the dose. What happened to taking an aspirin when you get a headache? Or is this for stupid people who don't remember their medications? I use the high tech weekly pill box to manage my medications. And if they implant this thing - the size of a domino (which sounds huge) - they need to repeat the implant when it runs out. No way. Not me. (Chills running down my spine at that one.)

Or if that isn't creepy enough, how about little robots made from your own DNA that are roaming around your body on demand with instructions to kill off or reprogram diseased cells. Why am I thinking of borgs right now? 'Resistance is futile, you will be assimilated.' This is just too creepy for me.

I am waiting for medical advances to solve all my medical ailments but I am not sure I am ready for implants and robots inside me. Icky-poo!

Another one of those thingies

Its a thingy. Actually its a benign breast lump. I have had two. One when I was 22 and one at the end of chemo. Both times, 'with my medical history they had to be sure' and they were taken out. Once they were gone, I never gave them much thought. I mean, benign and removed, what more is there to think?

Well, now I find out that there are two kinds of them - simple which are nothing and complex which can indicate a higher risk of getting breast cancer. Now the problem is I have no idea if I had simple or complex ones. I think it will be relatively easy to get the results of the biopsy from the later one but not from the one in 1984. So what do I do now? Pretend it didn't happen and has no bearing on my current and future health? Decide that even if it was complex and I have already had breast cancer it doesn't really matter?

It is very frustrating when later medical advances allow them to tell us more about previous medical tests, procedures, and other fun medical 'adventures'. There should be a way to take your old test results and reanalyze them easily to figure out their impact. Frustrating.

In the meantime they are just thingies that we can ignore so they don't stress us out.