Wednesday, July 31, 2013

Long term risks of cancer treatment

A recent study revealed that most of the survivors of childhood cancers, end up with life long health problems. I find this a bit scary. It shows that cancer treatment can cause long term health issues. Yes what was standard treatment up to 48 years ago, the length of time from the longest survivor's treatment, certainly is not standard today.

Cancer treatment has been likened to a slash and burn. Cut out what can be found and then burn it with radiation and then go after it systemically with chemotherapy. It must leave long term issues as it is such a harsh system of treatment.

But how are we going to be in 40 years? Will our cancer treatments impact our potential longevity? But what about those of us who have had cancer treatments? Because we survived treatment are we then putting our future health at risk? What didn't kill us, may not have made us stronger but the treatment may kill us in the end.

Perhaps more research is needed.

Tuesday, July 30, 2013

Lets redefine cancer

The question has arisen as to how to redefine cancer. A scientific panel states we are using a 19th century definition in the 21st century. The issue is should some precancerous conditions be redefined with out the use of the words cancer or carcinoma.

"In one example, they say that some premalignant conditions, such as one that affects the breast called ductal carcinoma in situ — which many doctors agree is not cancer — should be renamed to exclude the word carcinoma.

That way, patients are less frightened and less likely to seek what may be unneeded and potentially harmful treatments that can include the surgical removal of the breast.


The group, which includes some of the top scientists in cancer research, also suggested that many lesions detected during breast, prostate, thyroid, lung, and other cancer screenings should not be called cancer at all but instead should be reclassified as IDLE conditions, which stands for “indolent lesions of epithelial origin.”

Although it is clear that some or all of the changes may not happen for years, and that some cancer experts will profoundly disagree, the report from such a prominent group with the clear backing of the National Cancer Institute intensifies and broadens the debate and will probably change the national conversation about cancer, its definition, its treatment, and future research.

“We need a 21st-century definition of cancer instead of a 19th-century definition of cancer, which is what we’ve been using,” said Dr. Otis W. Brawley, the chief medical officer for the American Cancer Society, who was not directly involved in the report.

The impetus behind the call for change is a growing concern among doctors, scientists, and advocates for patients that hundreds of thousands of men and women are undergoing needless and sometimes disfiguring and harmful treatments for premalignant and cancerous lesions that grow so slowly they are unlikely to ever cause harm.
The advent of highly sensitive screening technology in recent years has increased the likelihood of finding these incidentalomas — the name given to incidental findings detected during medical scans that most likely would never cause a problem.
However, once doctors and patients are aware a lesion exists, they typically feel compelled to biopsy, treat, and remove it, often at great physical and psychological pain and risk to the patient."

So is it cancer or not? Or is an incidentaloma?

I think there is some validity to the argument. Medical science has advanced to the extent that a precancerous diagnosis usually is not a deadly diagnosis any more. The conditions can usually be treated and the patient may require additional follow up in the future but can assume they will live a long and healthy life.

I am not trying to minimize the importance of diagnosis and treatment of any of these conditions. But perhaps its time for the words to change.

Monday, July 29, 2013

Privacy

Somehow a change has happened. All of a sudden, I have many fewer doctor appointments. I saw my rheumatologist a couple of weeks ago. I see my therapist in mid August and then nothing until October when I see my rheumatologist and dermatologist.

How did that happen? When I get my appointment list from the hospital, it goes through next July and has an empty space on it. It maxes out at 10 appointments so I have less than ten scheduled. I do know a couple are missing.

My endocrinologist and my surgeon follow ups should happen in January and May respectively are not yet on the list. For some reason, those departments don't schedule until less than three months out. I also know I need to schedule a follow up with my back pain doctor for late fall sometime as well. And I have to go in for blood work every two months as well. I have dentist appointments too but they aren't the same.

I do know a few of my doctors have switched me to annual follow ups instead of six months. That helps. I don't know what happened to all my other appointments. I really don't mind NOT going to the doctor. In fact I will enjoy it.

One aspect I will really enjoy is not having my body examined again and again. I do not need to be poked and prodded, have my vitals and weight checked again and again. I am fine.

I do feel like I am regaining a sense of privacy in hot being examined so extensively and frequently. Its my body and I am entitled to some privacy about it. I have missed that.

Sunday, July 28, 2013

Rich pharma companies, poor patients.

Pharmaceutical companies are getting rich on the backs of their patients. Don't believe me? Here's some proof.

First we have an article from New Jersey on how Roche's profits are up 10% and its revenues are up 4% on profits from its breast cancer drugs. The company is now focusing on cancer drugs and hopes to find more high profit drugs as generics come available for drugs such as Herceptin.  By the way, their cancer drugs cost between $70,000 and $100,000+ annually per patient.

If you ask a pharma company you get the standard lines: 'no one pays those prices', 'they are covered by insurance', 'we do have programs for those who are uninsured to help with the costs'.

But my point is why are they pricing them so high in the first place? List prices do not reflect costs, they usually reflect positioning. A price tag of $90,000/year reflects exclusivity. 'It must be good if it costs so much.'

Do you see the problem here? As other pharmaceutical companies, Roche is supposedly pricing its drugs so high to compensate for their high research and development costs. But look how profitable they are. This is a graph of their 2012 sales from their website:


And then here are are the sales from individual products:

(These numbers are in billions (with a b, not an m) Swiss francs which are currently worth $0.93.) Paltry profits of $16 billion on sales of $44 billion? That's pretty damn profitable if you ask me. Mabthera is an RA drug, Herceptin, Tarceva, Avastin, Xeloda are for cancer, Pegasys for Hepatitis C, and Lucentis is a diabetes drug.)

Also of note is the fact that Roche has negotiated with other countries to slash prices of the drugs there - I found examples in South Africa, India, and European countries. So the other countries - read the 'rich' US - gets to pay the big bucks? How not fair!

I'm sorry but I don't feel sorry for the pharmaceutical industry and how their research costs cause them to price drugs so high. But if their profits are so high and their employees are paid so highly, why are the patients bearing the brunt of the costs?

[I will note here that I am not targeting Roche for any reason. I came across the article from NJ.com on their profits in cancer drugs which I read and then did a little more research. I could probably write a similar article on other large pharma companies as well.]

Saturday, July 27, 2013

Can we undo my surgery please?

When I had my breast cancer surgery the sentinel node was tested and came back with microscopic traces of cancer. It was then deemed necessary to have an Axillary Node Dissection where they take out a lot of lymph nodes in your arm pit to see the possibilities that the cancer has spread further in your body. Mine came back negative. But the damage was done.

When that many lymph nodes (20 in my case) are taken, the lymph system in your arm in permanently compromised and the risk of lymphedema is greatly increased. That would be my problem.

Now there is a new study (because the researchers needed to keep working), that says that if the sentinel node is positive, the better outcome for a patient is to have axillary node radiation instead of an axillary node dissection. There appears to be the same or lower risk of recurrence and the risk of lymphedema is substantially reduced.

This is clearly in the category of now they tell me. Damn. I have lymphedema which complicates my life - and has no cure.

I guess this is what research is all about - figuring out how to improve treatment so that they can prevent complications and reduce risks from previous treatment standards.

Friday, July 26, 2013

Winter weather in summer

Part of having RA and fibromyalgia is adapting to cold weather. Why am I blogging about this in July? Because here in Boston in July its a tropical 66 degrees. Yesterday's high was 69 with heavy rain. Today it might hit that same temperature again with more rain, mist, and clouds today.

How does this feel? Achy, sore, creaky, tired. Its July, its summertime. I'm supposed to be feeling better because its a nicer time of year. But between being off methotrexate and the 'tropical' weather, I am borderline cranky.

Thursday, July 25, 2013

It is complicated

When diagnosed with a new ailment, I try to educate myself on what it is, what to expect, and how it works as much as I can. I don't go to medical school or anything but I do a lot of reading,  listening and asking questions.

I think I feel more comfortable with ailments when I understand them and can comprehend how they are affecting my body and my well being. Its helpful to me to know what is common vs what is unexpected and requires further attention.

At my RA diagnosis, I thought I knew a fair amount about it because my mother has had it for decades. But apparently I did not. It has been a learning curve. I finally thought, 8 months after diagnosis, that I was getting some where.

Then yesterday a friend sent me a link to a series of two articles in the New York Times which are questions answered by a rheumatologist on RA and its treatment. Then I found out how much more I didn't know. I read the comments at the end and found there is still even more I need to know about.

You can call me slow but I probably have decades where I can continue to learn about it even more.

If you want to educate your self on RA, here are parts one and two.

Wednesday, July 24, 2013

I'm learning

You may call me slow sometimes but I am learning. Some medications when you start taking them  have a relatively quick impact on you. You take a tylenol and your fever usually goes down and pain subsides within an hour. Antibiotics often make you feel better with in 24-48  hours.

Rheumatoid medications are different. They can take months, as in 3-6 months.

When I was diagnosed with RA last fall, I was immediately put on prednisone and plaquenile and we quickly learned I was allergic to both. I was then switched to oral Methotrexate (MTX). The dose was upped to the maximum in January. I started to feel a little  better, I thought. But not better enough so I was switched to injection MTX in April.

I have felt some improvement but could not be completely sure. My back pain was making it difficult to 'feel better' because I was always in pain from something.

After I had my back treatment at the end of June, I thought my back was better but immediately got a double ear infection and was too sick to care about body aches and pains as I lay on the couch and watched Lifetime movies and bad reality TV.

Since I was put on antibiotics for two weeks, I had to go off my MTX. Its been three weeks since my last treatment.

Over the past week I have been feeling more and more tired with more and more aches and pains. Yesterday I was ready for a nap at 9am and my wrists were killing me.

Last night I started doing a little research to find out from Dr Google how soon after finishing antibiotics is it safe to restart MTX. After reading a lot of answers online I realized two things:
  1. I was feeling awful because my RA has been acting up because I haven't been taking my MTX.
  2. Methotrexate was working to help my RA.
Tonight I will go back on MTX and hope I start feeling better soon. I hope it doesn't take months to feel the effects again.

My rheumatologist told me if you have been on MTX for ye ars and go off it fo a few weeks for antibiotics, its not that big a deal because your blood levels are high enough. But since I have only been on it since April,  I would probably feel the lack of it. She was right.

I am learning, slowly. I will suck it up, wear my wrist splint, and take my pain meds.

Tuesday, July 23, 2013

A bit scary

I don't mean to target the pharmaceutical industry but I do have problems with the costs of medications which is why I always read the articles about them. Then the articles intrigue me and I start blogging about them.

Last week I saw one on how Glaxo SmithKline executives were being detained in China - charged with bribery. This is not the first time that this has happened and probably not the last as well.

Then this morning's news adds to that to say that GSK may have not been using good business practices in managing their clinical trials in China. They even admit that some of their executives might have broken the law. And business practices of other pharmaceutical companies will be examined.

Its one thing to pay a lot of money for medications because of the rationale that their research costs are so high. But its another thing all together if they are not working within the law and using questionable handling of clinical trials. Possibly even not reporting the results of animal testing.

Now I feel so much better. The really expensive drugs may not have been put through all the clinical trials that are required. How comforting. Short cuts always come back to get you in the end. But from the patient perspective, it is a bit scary.

Monday, July 22, 2013

How long?

When I was diagnosed with breast cancer, someone told me it is a year out of your life and then you get back to some sort of normal.

Another blogger this morning announced that after two years of blogging about her Hodgkins Disease she is moving on to blog about social media and other things. Her cancer adventure has slid into the background of her life - right on schedule as she had been told when she was diagnosed.

The wise people who tell us the deadlines on our diseases are not doctors or medical specialists but usually other patients reflecting on their experience and what they have been told by other patients.

So how do you put a schedule on a cancer diagnosis? My life, six years out from diagnosis two, is a never ending stream of doctor appointments. Well yes I did develop additional, non cancer ailments - bad back, rheumatoid, fibromyalgia, but at every doctor appointment there is still a little cancer hanging in the room. Maybe if I could go back to annual physicals I would be more relaxed about it.

I just don't think I can ever put a date on the end of cancer stress. The little cancer roller coaster rides through my life like the little train that could. I don't see an end of the line for it.

Maybe I am a bit pessimistic these days but I am tired. I just woke up and still need a nap. The nap is the fibro/RA speaking to me. I do need to go to the grocery store and want to go for a walk in this nice weather.

But I would like to kick that little cancer train out of my life....

Sunday, July 21, 2013

End of life issues

Modern medicine has progressed to the point that often death comes only after you are 'unplugged' so to speak. We keep our hopes up that time will be far in the future. We plan the way we want to go with our living wills, health care proxies, etc. But I do often wonder how do doctors and health care professionals decide when it does not do any good.

I am being morbid here? I don't think so. I read two articles recently that caused me to do some thinking (which I know can be dangerous but not morbid). 

The first one discusses dying connected to a machine. Do you want to die tethered to a machine? I do not thank you. I do not want to die connected to any machine which might be the least bit uncomfortable.

There is also the issue of what could be called 'futile' care. When does caregiving stop having a benefit? When are doctors continuing to treat patients when there is no benefit? There must be a fine line where the body is too weak or sick to respond to treatment or there simply are no more treatments available. Once that line is crossed, anything more than palliative care is futile. Even keeping someone on a machine could be futile if its merely keeping their lungs breathing and heart pumping.

The article talks about building trust between doctors and patients. But this also should include patients families so they understand that there is nothing left to be done.



Saturday, July 20, 2013

Life in cancer land

Life in cancer land is never normal. Every little thingy becomes suspicious and requires further testing. It doesn't matter if it has any relation to previous ailments or is new or not but you always get the 'because of your history we need to be sure...' line.

I was talking with a friend about it this morning. There is a nasty level in the diagnostic process that is called 'big enough to see but too small to do anything about it'. It is almost as bad as the 'there are too many thingies to think about surgery' but not really.

Basically its a sh*thole that cancer people live in suspended animation for days, weeks, months or even years. Going from scan to scan and living with a constant level of scanxiety.

Finally the outcome becomes one of two options:
  • It grew big enough to deal with it some how - surgery, radiation, etc.
  • It was decided it is stable and will require future supervision but less frequently.

Personally I have a bunch of the second option - tested beyond belief and now we are hoping they are stable and checking less frequently. But they all started as something that was big enough to see but too small to do anything about which was  no fun.

And how does the cancer person adapt to this not so happy roller coaster? Well that is the question of the year. You can try to sleep at night and the little 'what if' gremlins start dancing around your head. Or you can ignore it but sometimes a sinking feeling shows up in the pit of your stomach.

That is the real cancer roller coaster or how life in cancer land really is. In case you were wondering.

Friday, July 19, 2013

I hate hot weather

I am melting. I hate hot weather as I said. I am a New Englander, 85 is too hot in my opinion. 25 is a nice winter day. I am counting the minutes until Sunday when it is supposed to top out at 75. Instead of the 100 which is due today.

I want to go to the beach today. My cold is lurking in the background again. I stopped taking decongestants the other day but they were keeping me up at night so I stopped. Now I am all congested again. My ears are more clogged again.

I think I just need a vacation.

Too bad that's not happening for another month.

Thursday, July 18, 2013

On getting bad news

No one likes to get bad news. There are more jokes out there about good news vs. bad news. I am talking about getting bad medical news.

Some people never want to hear the bad news. I have a friend who when she received her breast cancer diagnosis, told her doctors she didn't want to know anything else - staging, tumor size, node involvement, nothing. It was her way of coping. A few years later she did get the details when she was ready for them.

It is my understanding that doctors often get this request - not to tell any bad news. But what is the definition of what is bad vs. what is good? There are more jokes about this as well (but I have chemobrain/RA fog and my brain can't remember them right now).

Its all relative. Take the example of a cancer patient who goes for a chest x-ray which shows a 2 cm tumor. To most people that would be bad news. But if the tumor used to be 4 cm and has shrunk as a result of treatment, 2 cm is good news.

Using the example in the article I referenced, what if the patient needs the bad news to make decisions regarding their treatment. Are they going to blindly follow the suggestions of their medical team? Some people do this anyway but wouldn't it be smarter to be fully informed?

Sometimes my life feels like it is a stream of bad medical news. This is why I have a therapist, well one of the many reasons. I am never the patient who has clear medical tests and they always want to be sure...

Its the coping with the bad news that is the hard part. This is probably why some people say they don't want the bad news. That way they don't have to cope. Ignorance can be bliss.

Wednesday, July 17, 2013

Boomerang day

Yesterday morning my plan was to go meet with my new rhematologist, then to work, and then to attempt the gym again. Life never goes as planned.

I could barely drag myself out of bed as I was so tired. I went to see my rheumatologist who is new to me. She is very nice and had a bunch of good suggestions. She was also very good at explaining things to me. I think this will work out in the long run. I go back and see her in three months.

My problem is I have been on injection methotrexate for barely three months and am now skipping doses because I am on antibiotics. With methotrexate, you need to build up a certain blood level to get the most medicinal effects from it. If you have been on it for a few years and need to go off it for a few weeks, its no big deal as your blood levels are ample. But if you are like me and only on it for a short period of time, I will lose some of the benefit I have built up and may have issues in the meantime. I can't go back on it until the middle of next week.

Then I got my blood work done and left to go to work. No big deal. After leaving the hospital, I called my PCP's office to see what it took to get a note for the airline because I can't fly this weekend as planned - both ears are clogged. I was on hold driving to work (with headset) at 1015am. Finally, someone came back on the phone and said can you come in at 1115am? Otherwise, it would be Thursday afternoon.

So I made a (legal) U-turn, made a quick stop at Target, and went back to the hospital to see my PCP's nurse practitioner. I got my note for the airline and finally got to work at 1215 pm. That was a lot of driving.

I did get to the gym but only for a short workout.

Today's goal is for a calmer day with less driving.

Tuesday, July 16, 2013

Optimism in the face of cancer

When one is diagnosed with cancer, all sorts of things flash in our brains - rail thin bald people, iv poles, scars, doctors, hospitals, hospices. All sorts of things loom in our future - medical tests, things that pinch, chemotherapy, and ugly hospital gowns with a draft in the back.

One of the key players in any cancer journey is the oncologist. Oncologists provide hope, direction, leadership and optimism. They offer treatment protocols to heal us, they provide solutions to treatment side effects, they provide answers to our questions.

They do offer optimism as I said. I read this article on an oncologist and his views of optimism a few days ago and have been thinking about it, mulling it through my brain.

What is optimism for an oncologist faced with a patient with advanced cancer? A few weeks/months of symptom free existence? They know what they are providing - a chance at a little longer.

As a patient our desire for optimism is a little different. I know someone who is a stage IV ovarian cancer person of over 30 years and still going strong. I had another friend who was a stage IV breast cancer person for more than 17 years. Those are the optimistic numbers a patient might take comfort in. But is that what an oncologist offers us? Not really.  They measure time in weeks and months, taken in stages until the next round of tests to check for progression.

Is stage IV cancer existence a happy one? Not really. From what I have seen is it is a long adventure in the chemo for life program with changing treatment protocols, CT scans with no concern for lifetime exposure rates, and regular blood work done on burnt out blood vessels.

A patient upon first cancer diagnosis gradually learns to be as optimistic as they can based on their own medical journey. Some are much easier than others. But an optimistic oncologist always provides the guidance. We might just wish they too were looking at years instead of weeks and months.

Monday, July 15, 2013

Friendships and Cancer or other Ailments

This is an ever popular topic in the cancer blogsphere - friends and cancer (or other ailments). More specifically the friends who either:
  • run for the  hills
  • become a doctor instantly and tell you what treatment you need
  • think you will be dead in a month

But then there are the real friends who stick around when you are coping and help as they can.

AARP suggests saying a heartfelt 'I'm sorry' upon hearing someone is ill. I'm not so sure I would appreciate that as much as something more along the lines of 'well that really sucks'. But their other suggestions are good.

Then there is 'A Field Guide to the Wildlife of Cancer' which narrows down the categories to:
  • Preachers
  • Clueless
  • Angels
  • Bolters
  • Fellow Travelers
I find there are too many preachers, clueless, and bolters out there. And far too many fellow travelers as well, but that's a different post.It doesn't matter if its cancer you are talking about, this applies to just about any serious life changing ailment.

Some times I get so tired of some people I stop telling them about my ailments or newest medical adventure because its just stressful to keep hearing the same crap from the preachers, clueless, and bolters (if you can find them).

Sunday, July 14, 2013

Oral Parity or Time to Write Your Congressman

Does anyone know what that means? When I first  heard it, I needed an explanation. Oral means something to do with your mouth. Parity is something about evenness or equality (I am so smart I came up with that myself).

So what is oral parity? Its about health insurance paying for oral medications the same way they pay for in hospital infusions and other medical treatments.

You get the basics. You go to the doctor and get an IV or a shot and you pay a copay and go home. Or you go pick up your prescription and if you are lucky its a generic and costs somewhere less than $20.

But if its a brand name drug with no generic available or a new brand name drug which is considered to be a premium or Tier 37.8 (or whatever term the insurance company wants to call it to make you understand its EXPENSIVE). That means your co-pay will be something that puts a significant dent in your wallet. My copays max out at 35% of the cost. I have gotten the $100+/month prescriptions and am on one now. If I go through mail order, its a paltry $95 per month.

I think I have blogged about this before but it is increasing in importance. Currently 1/4 of all cancer drugs in development are planned as oral medications. So if a new cancer drug costs $100,000 per year and a patient needs to pay 35% of that? You can do the math.

The results is doctors are less likely to prescribe the expensive oral drugs or patients go bankrupt or just don't fill their prescriptions. To get affordable cancer care, a patient needs to get an IV infusion which is stressful, time consuming, and probably not the most advanced treatment available.

For the third time, a bill is going through Congress:

"The Cancer Drug Coverage Parity Act of 2013 (HR 1801) seeks to amend the Employee Retirement Income Security Act of 1974, the Public Health Service Act, and the Internal Revenue Code of 1986 "to require group and individual health insurance coverage and group health plans to provide for coverage of oral anticancer drugs on terms no less favorable than the coverage provided for anticancer medications administered by a health care provider." Companion legislation must be introduced and passed in the Senate before the bill can become law."

You know how agreeable Congress is these days. Maybe its time to write your Congressman/woman.

Saturday, July 13, 2013

This didn't take long

The Supreme Court announcement last month probably surprised no one more than Myriad Genetics who had 'patented' the BRCA genes. But is anyone surprised that less than 30 days later they have already sued two competitors who have rolled out BRCA tests?

That's right, lose your patents, your lawyers are bored so its time to start litigation. What a productive use waste of money.

Please, I am sure since the genes were first discovered others have figured out how to test them. Maybe Myriad should come up with ways to test for some of the other myriad of genes out there? (Or was that a really bad play on words?)

Friday, July 12, 2013

Spiraling cancer costs

I find the costs of all medical care, particularly end of life care and cancer care, to be increasing exponentially. Researchers come up with new medications based on smaller and smaller groups of patients. Drug manufacturers charge more and more in an effort to 'recoup' their research costs.

Doctors understand this financial burden and are more and more beginning to take action and have discussions on this. I found this article very interesting and worth the read or the view (both in video and text).

One point that they made is that new drugs may help 20% of a population but if all are treated with the drug in an effort to reach the 20%, wouldn't it make more sense to figure out how to treat just the 20% instead of wasting the treatment essentially on patients who would not benefit and would suffer the side effects?

Another point is follow up PET scans for cancer patients. If these expensive tests are reduced, we can save millions. Or follow up for other post cancer patients, find ways to get the same quality of life at a lower overall cost.

In another article, ASCO members highlight the Top Five List Identifies Opportunities to Improve Quality and Value in Cancer Care. They make recommendations on reducing some testing and some treatments. I think we have a tendency with cancer to throw everything we can at it but are learning that more isn't always better.

So it looks like doctors are taking action on how to help reduce the costs. Now we need to get other parts of the medical care system to do the same.

Thursday, July 11, 2013

Okay I learned a few things

I have had this stupid evil cold since Friday afternoon, June 28. It came to me courtesy of my husband. This is a normal event, one family member gets exposed to germs and brings them home to share with other family members.

My theory on colds has always been to take good care of myself and basically ignore them unless I become fairly sick. Rarely does a cold send me to bed for more than a couple of extra naps. I have never had a problem with this theory. Ignorance keeps the colds away.

This worked for decades.

Not any more.

In  the past 24 hours I have learned:
- when you start to feel sick, stop RA drugs
- when you start to feel sick, call your PCP, not after a week or 10 days as I normally would
- colds more easily turn into pneumonia when you have RA both due to the disease and due to the medication.

Today I am home in bed sick again/still whatever. If you are keeping count this is day 14. Normal colds evolve and slowly get better. Evil RA colds, stick around and get worse. My sore throat is gone but my cough is not and my ears are clogged.

I am on antibiotics that I started yesterday morning and if I don't feel better by Saturday I am supposed to go to the walk in clinic. Next Tuesday I see my new rheumatologist and will probably learn more about the common cold with rheumatoid.

The only good side to all this is that the scale seems to be going in the right direction even though I have been eating ice cream every day.

Wednesday, July 10, 2013

The real problem is not the patient's

This is crazy. The breast cancer patients covered by Britain's National Health Service will not have Afinitor made available to them - because of the cost. And Novartis' reply? A blow for the patients.

Sorry I am not buying this one. It is a problem for the patients. But the real problem is for the manufacturer.

The UK gave it a cost of 68,000 pounds (>$100,000)/QALY (Quality Adjusted Life Year). Now the QALY is a fancy term but you get the basic idea.

The real problem is the manufacturer is putting all their costs on the backs of the patients again.

I just don't have a lot of sympathy for an industry which is doing quite well full of high salaries, perks, funded research and more. Then they hire all their lawyers and put together all the fancy promotion and packaging and try to justify the high prices they want.

I think it should never be the patient's problem but should go back to the originator - which is the manufacturer here.

Tuesday, July 9, 2013

More numbers again

Yesterday afternoon I went for a six month follow up with my oncologist. I realized in the morning that I should have some questions to ask her. I mean why see an oncologist if you have no concerns? So I had to think.

After some deep thought I came up with issue number one - what about staying on Femara longer? New research has shown that longer is better in terms of preventing recurrence of breast cancer. I did not see her in person on my last visit to her office as she had the flu but I had spoken to her afterwards.

Then I decided I needed the big question answered. What is my prognosis for recurrence? I did ask my previous oncologist this once right after treatment ended, before he moved on to research. But that was five years ago and I haven't asked for an update. Why not? It is a big question but I figured I should know. Why have I gone through all this treatment and follow up anyway?

After pondering this for a few hours, I decided this was it. When I met with her, we discussed me and Femara first. The real issue is that I am handling it well - particularly my bone density has been stable which is a big criteria. Its one thing to prevent cancer recurrence but another thing to give you osteoporosis in the meantime. But my bone density is stable so its a go.

The added benefit of additional years of  Femara is seen in the ensuing years. So if I take Femara from 2010-2015, I will continue to see the benefit in 2015-2020. I can live with that.

My next question I think was a bit of a surprise for my oncologist but I did ask her what is my likelihood of recurrence. She said its probably less than 10% at this point based on my diagnosis specifics and treatment. I thought that wasn't bad.

But I immediately went home and looked up breast cancer statistics and see how I compared. A normal 50 year old woman has a 2.38% chance of getting breast cancer in the next ten years. But I have already skewed the odds that say a 40 year old woman has a 1.47% chance of getting breast cancer by age 50.

So its all a bunch of numbers but I can't let them mean much to me.

But the best news is I don't have to go back and see her again for a year.

Monday, July 8, 2013

Carpe Diem vs. The Future

An oncologist advises his stage four patients to 'Carpe Diem' or 'Seize the Day'. This is good advice for anyone: don't just sit there, do something. Or get off your butt or any of a multitude of other definitions.

I like an optimistic oncologist. I am going to see mine today and don't expect any real doom and gloom. Optimism is always good but the patient's thoughts need to be considered as well. The oncologist thinks the patient is doing well as they cope with cancer treatment but at stage IV its not a disease that is going to go away and will in fact eventually probably do them in. The future takes a different tone.

An early bird does catch the worm because life isn't coming to you if you don't make the most of it. I try to make the most of my life. I really do. I mean sometimes I can be the biggest procrastinator and firmly believe the road to hell is paved with good intentions. But I do try to take advantage of life and do what makes me feel best.


Then throw in a stage four, or any cancer diagnosis, and the future always looks a little bit different than before. And the silly questions, if I have cancer why am I saving for retirement? Or will I be here to trade in my suburban sedan in a few more years, or should I start using it for off road adventures? Is it time to write and complete my bucket list?

Once you receive that cancer diagnosis, you get an oncologist. Once you meet your oncologist, they need to be optimistic. So carpe diem. And look to the future.

Sunday, July 7, 2013

A cancer database

The proverbial 'they' always talk about cancer patients and success stories either in generalities full of percentages with lots of big words - 37% of patients with diagnosis A tend to show positive responses to treatment protocol Q while 82% show positive responses to protocol ZB37. Then you hear stories about individuals who had this outcome or that one.

But what if it could all be consolidated into a big pie where it could be dissected and analyzed? Then the data could be  better understand and prognoses could be better predicted. Patients might even handle treatment better. Who would have thunk? Individualized medicine could be better understood and more wide spread. Cancer research will become easier and faster.

Public Health England is going to do exactly that - develop a huge public cancer database. I think this is a great idea. Statistical analysis aside (as well as statistical paralysis) it would provide so much information about existing patients that the benefits are unimaginable.

Now England is a much smaller country than the US with approximately 350,000 new tumors diagnosed each year so its is more manageable. In the US, the number is 1.6 million so it would be that much more difficult.

Saturday, July 6, 2013

Oh CRAP, I did do that!

I am not a creative person at all. I can draw stick figures, barely. At one point I was in 4H and Girl Scouts and learned to sew, knit, crochet, embroider, and needlepoint. I might have won a 4H ribbon or two but they were given to all entries. That phase of my life changed around Junior High when I moved on to more esoteric pursuits - boys, figure skating, etc.

A few decades later, my brother and sister in law started having children. She, my sister in law, is a very crafty person. I enlisted her help in picking out yarn and a pattern to make a baby blanket for her second child - my nephew who is now 14 and nearly 6' tall. That baby blanket was never finished and now would only be of use to him for his children in another 15 years or so. It is now in a bag somewhere....

Then I got married, life got chaotic, I got cancer and I guess I was annoying my friends so much while I was home dealing with chemo, that one of them, Judie, said to me 'you need a hobby'. I agreed, calling friends while they are at work, reading bad novels, and watching bad reality television wasn't going to get me through chemo any easier.

I went back to crochet. I got some yarn and a few crochet hooks. Then I got more yarn, some knitting needles. I discovered the evil benefits of the sale section of yarn stores. Everyone in my family got a scarf for Christmas that year. Then all my friends got a scarf for their birthday.

Then I discovered I am addicted to yarn and knitting and crocheting. I have bags of finished products. I have more bags of UFOs (unfinished objects). I have even more bags of yarn (an unofficial member of SABLE - Stash Acquired Beyond Life Expectancy). I have switched to larger projects to slow down my production as I have enough scarves and cowls knit for a couple seasons of holiday craft shows.

I am finishing a knit crazy child's blanket where I will sew together a multitude of triangles and finish with a pale yellow edge. I am just starting a patchwork blanket for our bed which will be in squares of the same yarn knit in different patterns sewn together. This should take me most of the rest of the summer.

I like knitting and crocheting - its relaxing and non-fattening. 

Some where along the line I would often see information on creative arts classes to help people with cancer heal and cope. I would say that is so not me as I only draw stick figures. Besides I am not someone who feels the need to scrap book, decorate my house with handmade 'what-nots' (or dust collectors). I am not creative. I don't need those classes.

Slowly it has dawned on me. CRAP, I did do that. I did use creative arts to help heal and cope. And I didn't need a class for it. I just need more yarn stores for more yarn to fuel my addiction and increase my stash.

Friday, July 5, 2013

Tellling the honest answer

So you run into to someone you know and haven't seen in a long time. They greet you and say 'how are you? You reply 'fine, and you?'. Or should you answer honestly? They say honesty is the best policy but if it makes someone stop in their tracks, fall over in shock, or run for the hills screaming, is that really the case?

I mean if I gave the honest answer to that question I could say 'well, after two cancer diagnoses, rheumatoid, fibromyalgia, and degenerating disks in my back, I'm feeling just fine'. I think that's a little too much information. Maybe I should stick with the high points, 'I have been happily married for eight years and we bought a house we like.'

Or there is always the ever so polite which reveals absolutely nothing, 'just fine, how are you?' But if they are/were a true friend, wouldn't you want to tell them a little more? But then you find out they weren't the friend you thought they were and you never hear from them again? Yes that happens, more frequently than you might think.

The same can be said of living the ups and downs post cancer. Your doctor always wants 'to be sure, because your more medical history, blah, blah, blah'. So you live from appointment to appointment waiting for those little magical moments where they say its not a cancer related thing. Sometimes there are little detours down the devious side paths of procedures and tests where you might 'feel a pinch' - both physically and emotionally.

So how much do you disclose to everyone? Do you tell everyone about each little test and 'medical adventure' so they can support you and help you through it? Or do you keep it quiet and wait until you know more. But then you may be hiding at home with your scanxiety and pretending everything is fine?

Its a fine line to negotiate. The well meaning people may be suffocating you with their good intentions. They call and ask how you are doing so you tell them fine even if its not so good. Just to avoid the suffocation. Or you think they might be heading for the hills and you don't want to push them away.

I feel like I often end up keeping everything quiet and pretending I am healthy as a horse.

Right now, I am just fine. I am getting over a cold that won't go away and I refuse to disclose any more.

Thursday, July 4, 2013

A lttle negativity

Today is the Fourth of July and (unless you are still fighting a damn cold) most Americans will be enjoying barbecues, fireworks, the beach, and having all sorts of fun.

Then the media has to come along like a wet blanket. First we have, How To Avoid Getting Cancer From Your BBQ. After the doom and gloom headline, the real answer comes buried way down. "If you’re grilling and following the proper safety tips, the risk of getting cancer from grilling food is very low."

So first the fear and then the honest truth.

Then we  have the fact that there are carcinogens in Pepsi. I don't think I have had a Pepsi myself in decades. Who still drinks that much soda any more? And who ever thought Pepsi was a healthy beverage?
But I digress. Just more of the media being a wet blanket.

Yes they are ominous warnings. Cancer risk is nothing to minimize but let's keep risks to real levels and not over stress them. The media times their stories to make sure that they get the most coverage because its a time of year when more and more will be barbecuing or drinking soda. These would get less coverage in January simply because its cold and there is less barbecuing and more hot chocolate.

Happy July 4th to you all, just watch out for your carcinogen intake and out of line negativity.

Wednesday, July 3, 2013

Looking for new news

I receive several billion regular updates on advances in the treatment of breast cancer, thyroid cancer, rheumatoid arthritis, fibromyalgia and back pain, among other ailments. Every so often something pops up and grabs my attention or even the headlines on new advances that show some real significance.

But they always speak of small studies and that more research is needed. And then we never seem to hear the results of anything only that more research is needed. And nothing seems to ever help me positively. All I have gotten so far is to learn that I need to stay on Femara an extra five years. But no miracle cure.

After six years of this obsession with cancer research, I feel like there is not much new. Maybe its the lack of the significant breakthroughs that impact me positively. Maybe its frustration with my health's continued downhill slide.

There has been so much promising research but we never seem to see the results. A significant part of this I think is do we remember five years ago when they said this looks good because of this but it needs more research. Now the research is done but we can't connect it because its been too long.

There should be away to easily connect all of this so we can see the long term progress.

Tuesday, July 2, 2013

Your medical records

In recent years, medical records have become more and more available to the patient. Some medical facilities make them available on line. Others offer them at the end of each doctor visit.

I have tried to read translate my medical records. It is not as easy as you think. If it says 'patient denies... '  that just means you said you didn't have whatever they asked you about. They are also full of vague 'doctorisms' that are not as clear to the average patient. That is fine by me.

They are full of the doctor's opinion about what is going on with me. This means they are full of the thoughts and opinions of people who went ot medical school to unravel my medical mysteries. They could probably write theses on my medical uniqueness at this point. And my unique ways - for instance if I find a 'something' its guaranteed to be a 'nothing'. But if a test finds 'something'  its guaranteed to be a 'bad thing'.

But I digress.

A medical record is a pile of doctor notes, test results, procedures, diagnoses, treatment plans, and professional medical opinions.

There is the thought process that patients should find out whats in their medical records. I agree with this. I do get copies of test results. I have been known to ask what is in my records and disagree with it.

But I am not sure I think I should be able to edit my medical record as if it was a Wiki. A medical record should stand as the medical professionals' version of me. It is sort of a reference list of my medical history (blah, blah, blah) and should be what it is and nothing else.

I could add a separate list of information which becomes the patient's side of it. I mean if the doctor said I seemed to tolerate a procedure well. I could happily record in my version that I was uncomfortable and basically it was a very sucky experience. From the doctor's point of view, I might have been uncomfortable but it wasn't a walk in the park as most medical adventures are.

I am an advocate for my health but I also respect that medical professionals went to school for their training and are working with in their professional detachment to keep the emotions out of it. I am full of emotions about me.

Which reminds me, next week I need to go pick up copies of my latest test results to make sure I keep up with  my latest.

Monday, July 1, 2013

This annoys me

This really annoys me to no end. I get all sosrts of emails about cancer, people with cancer, research on cancer, and 'exciting' news about cancer fundraisers and other things.

Recently in these emails, there have been
  • cancer sufferers
  • cancer victims
  • cancer survivors.

Since when with people with cancer become sufferers and victims? I detest the word survivor as well but sufferers and victims? Really?

These were included in the titles of actual news articles. The reporters need a bit of sensitivity training I think.