Chemo again or just semantics?

I have been emailing back and forth with a friend with whom I had lost touch. His wife had died a few years ago of pancreatic cancer.  I told him that I had RA which is why I haven't been around as much recently. He replied that he has a friend who is on methotrexate - which is a form of chemo  for their RA.

Eeek! I had not considered that Methotrexate was a form of chemo. I take it in pill form weekly so its not like I go for an infusion or anything. I looked it up on Scott Hamilton's Chemocare.com and found out its true.

The thought of being on chemo again had always freaked me out. I mean who wants a port, baldness, and nausea again? But they snuck it in on me. They said it was for RA treatment, they never mentioned chemo. So I guess its easier to cope.

My mother was on methotrexate, at a lower dose than me, for years, and we never considered it to be chemo.

Which brings up a point. If a drug is used to treat cancer, they call it chemotherapy. But if the same drug is used to treat something else, can't we just call it a medication for rheumatoid so I don't have to think I am on chemo again? Doesn't it come down to semantics here?

Another Giant Storm

I am very intrigued by how winter storms are now named. I did read some semi logical government rationale (is that an oxymoron - semi logical government rationale?) Nemo brought us a (whopping big) pile of snow. Q was somewhat mysterious - just like in a Bond film. Rocky is just rocking along with snow and rain. If we are already up to R and its only February, we might even run out of letters - what does the oh-so-smart government do then? Switch to the Greek alphabet?

All these giant storms could be doing lots of things:

• relieving drought in the south, central and western states. Maybe this will be a year where the rare desert flowers bloom again.
• a precursor of climate change where we get lots of giant (named) storms (until there are no more letters) which cause a lot of storm surges, erosion, power outages, structural damage and more trauma.
• signifying it might be a good time to sell your beach front property quick before the next storm wipes it out.

We live about 5 miles straight inland (as the crow flies) at about 150' above sea level. We joke that we might own beachfront property in a few years.

Today we are getting the remnants of Rocky as he rocks his way through New England. I believe that we are not due for another storm until next week. It will be nice to have a weekend where we aren't house bound due to the weather.

These big storms are hard for me. Due to lymphedema arm and arthritis body, I can't shovel snow. Or vacuum - but that doesn't really help in a snow storm. Its hard enough for me to clean off my car.

I will get through this giant rain storm and wait for some needed sun shine to appear.

We need to make a switch

I think we, as in my husband and I, should officially switch to the Mediterranean diet. There is more research (because the researchers need to keep busy) showing the benefits of it.

Good things in the Mediterranean diet are olive oil, tree nuts and peanuts, fresh fruits, vegetables, fatty fish and seafood, legumes, white meat, and wine with meals. This to avoid are soda, commercial bakery goods, sweets and pastries, spread fats, and red and processed meats.

Therein lies the problem. My husband is Mr. Steak and Potatoes.He would happily eat beef every night. I will have to work on this. And the other problem is I'm supposed to avoid alcohol due to my medications. So I wonder does it work if you don't drink?

Anyway, we should be healthier. I hope. And deflabbed. (That's my word for it.) Well its better than the grapefruit diet.

A Lull in the Action

Yes I am enjoying a lull in the action. The action of doctor appointments that is.

I have one (yes, one, singular, 1) doctor appointment in the entire month of March. I have one (again, one, 1, solo) doctor appointment in the entire month of April. And both of those are appointments with my therapist so the odds of my needing to change into one of those little gowns are extremely slim (and they make such a fashion statement).

What shall I do with my time? I mean besides keep up with my blog. I'll have so much free time!

Daily naps would be a good option. I can use that since I get so tired these days. More exercise Doubtful because I need a a day of rest between exercise. More time paying attention to the cat. I can unless he is sleeping. He's old and needs his 22 hours of naps per day. Quality time with my husband.

Maybe in my absence the hospital will renovate the ladies room in the lobby. It does need a bit of updating - probably because it is the most used room in the building.

But in the month of May, sadly, I have one of 'those' days where I have test, test, doctor appointment. I will blissfully ignore it between now and then. Ignorance is bliss in this case. Its also a case of avoidance.

Secrets of medical costs

Someone referred me to this article which I read with great interest. First I started with this video:

Then I read the article called the "Bitter Pill: Why Medical Costs are Killing Us"

FInally I watched the second video where the writer answers questions on reactions to this story:

So where does all this education leave me? I am not as smart as I thought I was.

All along I was blaming high medical costs on pharmaceutical manufacturers who were passing on the research costs long after they were paid to the patients through high drug payments. I was blaming insurance companies for high insurance premiums, denial of claims for stupid reasons, and general ignorance.

I did not know that hospitals are a big part of the problem with their secret lists, huge mark ups, and high profits - even if they are non profit. They hide behind the HIPAA laws on patient privacy to hide their 'chargemaster' list of billing amounts.

There is also the issue of the standard CYA tests ordered by doctors out of fear of lawsuits instead of best treatment for the patient. But that is another blog post.

My take away from these videos and article is that our health care system is more messed up than I previously thought. People are getting rich at the costs of the poorest people or the ones forced into bankruptcy due to medical bills. More action needs to be take in this area.

While the Healthcare Reform Act focuses on getting insurance and medical care for more American's, it does not go far enough in addressing the financial side of patient billing and who pockets the money at the end.

New Breast Cancer Drug but at What Cost

The FDA approved Kadcyla for late stage breast cancer treatment. This is a good thing. Its about time.  And it will save many women's lives.

But I have a real problem with the financials behind it. A month's treatment costs $9800 or $117,600 annually, which apparently is about twice the costs of Herceptin. These costs will mostly be covered by insurance - and we wonder why insurance premiums are going up.

Immunogen, who developed it, expects to receive a $10.5 million pay off plus royalties of 3-5% of the expected world wide sales of $2 billion (with a b). To my tiny math brain, that means they get $60,000,000 (that's 60 million if you are having problems with all the zeros).

It will be marketed by Genentech who I assume will take in the rest of the profit after coming up with snazzy packaging and fancy ads. I have no idea what Genetech's manufacturing and promotional costs will be but I am sure their profits will exceed that of Immunogen.

But that's okay because the insurance companies will probably cover most of it - which is why our medical costs keep increasing so rapidly.

Going back to when I blogged about pricing and how it is determined by marketing people, I am sure the whopping price tag was set by marketers (those evil people) who wanted it to be high end, represent a last chance for women to extend their lives, and if its expensive it must work really, really, really well.

But at least it is finally available for the women who need it who will gladly pay any price to extend their lives. Call me cynical, but maybe I am.

Fibro what?

So I was told last September that I have fibromyalgia by my rheumatologist. I had been referred to her by my pain management doctor who had been treating me for my back pain from degenerating disks. I also had pain in lots of other places that was getting worse over the years as opposed to better. His diagnosis to my rheumatologist was myofascial pain or fibromyalgia with possible rheumatoid arthritis.

Well the rheumatologist confirmed within ten minutes of meeting me that I had fibromyalgia. My pain doctor had put me on Savella, Lyrica, and Cymbalta at different times in the past to treat my pain. Those are the only medications approved to treat fibromyalgia. They are also used to treat other things which is why he tried them. None of them really worked for me.

Now there is a study done (because we needed another study) that Savella and Cymbalta don't really work for fibromyalgia and if they do the side effects can be pretty bad. And they don't do much for improving fatigue and quality of life. That is so helpful. Back to the drawing board to all you fibro medication researchers!

So what is fibromyalgia? In my none medical school terms, nerve pain is amplified and it makes you tired and cranky. Officially the symptoms are these:

1. "In 1990, the American College of Rheumatology (ACR) listed two primary criteria for the classification of fibromyalgia. 1) A history of widespread pain involving all four quadrants of the body (right side, left side, above waist, below waist) for a period of at least 3 months.
2. The second criteria from the ACR which points to fibromyalgia is, upon physical examination, the presence of pain in at least 11 of 18 tender points when touched or pressed with force amounting to the equivalent of 4 kg. or 9 lbs.
3. More recent data indicates that there may be an increased sensitivity to pain throughout the body, pain may be migratory (move around) or may exist as chronic regional pain. Most experts are said to believe fibromyalgia results from abnormal central nervous system function. Response to stress and psychobehavioral factors may also contribute to fibromyalgia.
4. Fibromyalgia primarily occurs in women of childbearing age. Children, the elderly, and men can also be affected. Besides the defining symptoms of pain and tenderness, there are many nondefining symptoms associated with fibromyalgia including:
• Fatigue, night sweats and sleep disturbances.
• Memory difficulties and cognitive difficulties.
• Tension or migraine headaches, temporomandibular joint syndrome, rib cage pain (noncardiac chest pain), chronic pelvic pain, plantar or heel pain.
• Fluctuations in weight, heat or cold intolerance, subjective feeling of weakness.
• Ear-nose-throat complaints, multiple chemical sensitivities and a wide array of allergic symptoms.
• Hearing, vision, and vestibular (balance) abnormalities.
• Heartburn, palpitations and irritable bowel syndrome.
• Evidence on echocardiogram of mitral valve prolapse, esophageal dysmotility (muscles of esophagus not working properly), neurologic conditions causing hypotension (low blood pressure) and syncope (fainting).
• Mood disorders such as depression and anxiety occur more commonly in people who have fibromyalgia. "

Of these I can say yes to 1, 2, 3, and 8 of the 9 bullets in number 4. I don't think I have the cardio issues.

But otherwise I am a very healthy person.