That was a mistake

Last week I blogged about not taking my pills. I skipped them. That was a mistake. I made the decision two nights ago not to take my pills before going to bed. Then I decided again last night not to. I have since learned that was a big mistake.

Yesterday I had a fair amount of pain which I just pretended was from overdoing things at the gym on Friday. Then I woke up in the middle of the night and a lot of things hurt. So I have learned my lessons.

1. My pills do work.
2. I was kind of stupid to push my limits like that.

But now I know that my doctors do know they are talking about and that I do really have a lot of things wrong with me. Damn. I guess I will have to take it easy today.

But at least I know.

Heck yeah

Are we ready for pharmaceutical company price wars? Heck yeah! There has been a lot of 'hoohah' going on pricing with pharmaceutical companies, especially for Gilead's hepatitis C drugs which came in at a shocking $84,000 per treatment course. Which was later upped to $90K plus for second treatment option.

Now Merck has stepped into the hep C market with a new drug which is only a paltry $54,600 treatment for a 12 week course of treatment. Wowza!!! That's so much more affordable.

Of course Gilead says Merck's treatment isn't as good (of course). [And their CEO just stepped down because of the pricing crisis.] But the stock analysts are rooting for Merck on this one so we will just have to wait and see who wins this one.

But maybe instead of focusing on the big companies we should talk about the benefits to the patients. But the big news:

"One industry consultant, Roger Longman of Read Endpoints, a research firm that tracks reimbursement issues, believes that Merck’s pricing may be sufficiently tempting for benefits managers. That’s because its new treatment carries a lower list price than the Harvoni list prices, regardless of whether patients take that treatment for eight or 12 weeks, depending upon their strain of the virus.

“Essentially, what Merck has done is undercut Harvoni” in most patient populations, he explained. “And remember that Merck will also offer rebates. So they’re giving themselves some room to make it still more attractive for pharmacy benefits managers, some of which may have contracts that allow them to switch drugs if there’s a dramatic price difference from a new product.”"

So maybe there is hope for the patients after all.

That 'Here We Go Again' Feeling

As a professional patient, at some point when faced with a diagnosis instead of panicking, you get that 'here we go again' feeling. You skip the whole stress and panic stuff and go straight to the 'how the hell are we going to fix this now'?

Honestly I do get stressed about bad medical news but I skip the panic crap and go to the 'here we go again' level. Its sort of like you become deadened to the stress of more medical crap. And it quickly is only crap.

Its sort of becoming brain dead or numbed to yet another medical disaster. They just seem to lose their impact.

Sometimes I feel like I only realize the real impact of what the doctor said to me when someone says to me 'that must really suck' or something to that effect. This is why I have therapists and other support people to help me digest all the medical crap.

I mean how much more can a person take? You told me I had cancer twice, two chronic incurable ailments, and one body falling apart syndrome that can't be cured. What else could there be? I will remain calm..... As long as I can.

Maybe I'm doing better

So people ask me how I am doing. Or if I miss a phone call they want to make sure I am okay. But maybe I am doing better. We moved and I get to live on a single floor most of the time. I retired and have more time to get things done.

However I still run out of energy, regularly, maybe even every day. Well, not every day, just a fair amount of time. A few errands and then I need a nap. So unpacking is going slowly.

I have had two days back to back of lots of errands and I ran out of energy both days. Last night we had pizza delivered because I was too tired to cook and then I fell asleep on the sofa. (I hate when I fall asleep on the sofa because then I have to get up and get in bed to go back to sleep and I never feel rested after that.)

Today I have some phone calls and one errand. I will take it easy and get plenty of rest. This may mean less unpacking but I think its more important to get some rest. And I am behind on my Lifetime movies on the DVR....

I do think we have a better quality of life here. The news from yesterday's local police report included: "At 12:35 p.m., an injured squirrel was reported." Not that I had concerns for my personal safety where we lived before but if local crime includes an injured squirrel, I think its a safer place to be. And the cats would be happy to check on the injured squirrel for the police.

Bed Shopping

The one thing I definitely wanted in our new house is a new bed. We have been talking about getting a new bed for a while anyway and as my health continues to be oh-so-wonderful I really want a new power bed - the kind that you can raise your head and feet.

Yesterday I made my second educational expedition to the furniture store to learn about options. I had gone last fall to find out about options for split foundation and king vs. queen size. Now I know how furniture fits in our new bedroom and wanted to learn some more.

I think I now know what I want for a power base - I want the fancy one with the anti-snore feature. That's where you can raise the head of the bed a tiny bit and quiet the snorer - which is one or the other of us, depending on who you ask. Its not that expensive and there are many much more expensive ones.

One feature included in the fancy power bases is that they can provide a light massage. But fibromyalgia can make you hyper sensitive in many ways including to vibration. I might just need to block the massage feature. But if I can get a better night's sleep, I'm all for it.

The next step is to get my husband to the store with me so we can figure out which mattress we want. I claim its for my health and getting a good night's sleep and therefore a justifiable expense. But there is a bit of hesitation in our house as to should we spend the money. But its for my health!

Ten Year Cancer Survival Rates

Finally, the first long awaited ten year cancer survival rate study has been completed. In Japan, a group of scientist followed cancer patients diagnosed between 1999 and 2002 for ten years. The results were interesting (in general but also for all us cancer people who have been waiting for this kind of study). Here is the bulk of the results.

"1. Survival rates depend on cancer type
Firstly, the type of cancer a patient was diagnosed with largely determined their chance of survival. Among cancer types studied, patients with thyroid cancer had the best chance of being alive 10 years later at 90.9%. Breast cancer, the most commonly diagnosed cancer within the United States, was another standout with a survival rate of 80.4% after 10 years, dipping from a survival rate of 88.7% at the five-year mark. Other generally high marks included uterine and cervical cancers, with 10-year survival rates above 70%, and stomach cancer, with a 10-year survival rate of 69%.

On the flipside, certain cancer types offered very poor long-term survival potential. Cancers of the esophagus, bile duct, and gallbladder all had 10-year survival rates below 30%, and liver cancer survival rates dipped from 32.2% at the five-year mark to just 15.3% at the 10-year mark. As is the case with nearly all broad cancer studies, the difficult-to-treat pancreatic cancer took the dreadful title of lowest 10-year survival rate at just 4.9%.

2. Recurrence rates appear to differ dramatically
Secondly, I believe the data speaks to the idea that certain cancers are far more prone to recurrence, or perhaps secondary cancers, than others.

For example, stomach cancers only saw a very minimal drop-off of 1.9% between the five-year and 10-year results. The implication is that recurrence rates are probably low for this indication. Conversely, liver cancer witnessed a nearly 17% drop-off in survival rates, implying that recurrence rates are considerably higher....

3. Progress is being made

..."Cancer treatment is improving, and the 10-year survival rate of those getting treated now will be even higher."

As a whole, the 10-year survival rate for all cancers was 58.2%, with an obvious trend that showed earlier-stage cancers offered a higher survival potential than late-stage cancers. Specifically, cancers discovered in stage 1 had a five-year survival rate of 90.1% and a 10-year survival rate of 86.3%. In stage 4, survival drops dramatically to just 17.4% at five years and 12.2% at 10 years. Still, without pharmaceutical, diagnostic, and device innovation, I would anticipate both figures being even lower."

I was very happy to read this. I just don't understand why no one else has bothered to run this kind of study. 

Disease combinations = confusion and lack of support

When you get a disease, you learn about the symptoms, treatment, and when you will feel better. Add a second ailment and things get confusing. I was told I had rheumatoid arthritis and fibromyalgia about the same time. And I have osteoarthritis too.

I was also told it can be hard to tell which ailment is causing which pain. I can tell sometimes - when a ribbon of pain rushes across my back, that's fibromyalgia. When my knees grind as I walk down the hall, that's osteo. When my fingers decide not to cooperate, that's rheumatoid. When I need a nap, that can be fibromyalgia and/or rheumatoid.

But then I look for support - medical and emotional. The medical support is usually fairly good but then sometimes I get told 'you need to ask your doctor for that other ailment about that'.

And emotionally, I dig around to find people like me. I have found a support group for those with chronic pain but its not that convenient for me. I found a fibromyalgia support group and don't really like how its run. (Its run well, but its just not run in a way that works for me.) I was just told about a new support group for people with chronic illnesses (and told that unfortunately I am eligible for that one too) that I may try.

I have also looked around for medical resources and bloggers who are like me. I frequently find medical articles and studies on one ailment but not on people with more than one. I know most medical research is done focused on one ailment but there must be more people like me. I haven't found any really.

I did find a study that states that if you have breast cancer or thyroid cancer your risk is double (or so) for the other one. I know of two people (besides me) who have had both.

My complaint I think (if its really a complaint) is that the medical world is not set up for people with multiple ailments. Its really designed for one ailment at a time. If your treatment changes you need to wait for that medication to kick in before you can go on to the next ailment. This can takes months. Most RA treatments take three to six months before their impact is felt. So that leaves me stuck in pain or cranky. Or just confused and isolated.