Friday, November 28, 2014

Inflammation and me

A few weeks ago I had my evil toe infection and was on antibiotics which meant I was off  Methotrexate for three weeks. Methotrexate keeps my RA and its inflammation in check. But antibiotics and MX don't work together. Or if I feel I am getting a cold, I am not supposed to take my MX either.

So week one I felt like I was getting a cold so I skipped it. Week two my stupid toe started and I was on antibiotics so I skipped it. Week three I was still on antibiotics for my stupid toe so I skipped it. Then I had two weeks of my MX injections. Then I went for my regular blood work on Tuesday to check my blood for evil things related to RA and its treatment. No big deal.

Then Wednesday I am happily cooking away, having fun, enjoying myself, and I missed a phone call. I checked my voice mail a few minutes later to find one of  'those' messages.

"Hi this is Debbie from Dr. K's office calling about your blood work yesterday. Can you please call us when you can? We are here today till 430 and then back on Friday. Its not urgent (hah!) but please call."

Of course, I called immediately. I hate those messages with so much subtext behind them. Debbie answered and said she had the results of my blood work and wanted to talk to me about them.

Apparently my inflammation levels were up and she wanted to know if I was in the middle of a bad flare up. I said no, more of the usual but nothing bad. But then I told her I had been off MX for three weeks and only back on it for two weeks. She felt that would account for the increased levels but to be sure to keep my appointment with Dr K next week.

So its only inflammation but it would make sense that I have been feeling like crap. And yes I'll keep my appointment.

Thursday, November 27, 2014

Lung Cancer Doesnt Get Its Fair Share

Lung cancer affects half as many women as breast cancer does each year but kills twice as many women. And its five year survival rate is 16% or for Stage IV, 4%. To put it another way:

"An indiscriminate killer, lung cancer takes more lives annually than breast, prostate, colon and pancreatic cancers combined. The disease has not generally received the public attention or research dollars in proportion to its devastating lethality. Lung cancer receives just $1,442 in federal research funds per death, compared with $26,398 for breast cancer and $13,419 for prostate cancer according to an NIH study. Factor in private donations, and the funding gap becomes even more staggering."

Lung cancer is not the only one that is indiscriminate. All cancers are indiscriminate but its time that other cancers get the notice that go to the headline cancers - breast, pancreatic, and prostate. I call them headline cancers because they grab the headlines. But there are millions of Americans dealing with a lifetime in cancerland which is not the same as life without cancer.

November is lung cancer month. Did you even know that? You couldn't miss the pinkification of October..... Lung cancer, and other non-headline cancers, need their fair share of funding, research, and awareness.

Wednesday, November 26, 2014

I failed the unhealthy quiz!

So in my prowls around the internet, I came across a list/quiz of ten signs you are unhealthy. I thought, that MUST describe me. I was so happy to find out it did not describe me. Which means there are plenty of people who are less healthy than me out there. And here are the ten signs:
  1. Your sleep pattern is not what it should be.
  2. You have become an apple
  3. You suffer from fatigue
  4. Your urine is dark yellow
  5. You snore louder and more often
  6. You have to scratch all the time
  7. You get cracks in your lips at the corners.
  8. The quality of your skin is poor.
  9. You always have a cold or the flu.
  10. Your bowels are not regular.
Now I am not claiming that my sleep is perfect or I never get fatigued because I do. The list claims that one of the key reasons for fatigue are thyroid problems but since I don't have a thyroid that is a moot point for me. I also have RA and fibromyalgia which cause fatigue.

I also may not be the skinniest I have ever been but I don't suffer from the rest of these really at all. I also get plenty of exercise (believe it or not I do 60 minutes of cardio 3 times each week followed by weights and stretching).

But I digress. I am not all that healthy but I failed the unhealthy quiz!

Tuesday, November 25, 2014

Generic drug prices going up

Brand name prescription drug prices are sky rocketing. The silver lining for all of us patients is that generic drugs would become available at a much lower price. But now those prices are going up as well.

In the US, the government does not negotiate drug prices or mandate generic drug prices - which have been priced based on the cost of key ingredients - the smart way to do pricing instead of basing it on how much it is worth for the patients life (which is another blog post).

But now, a Senate panel is looking at generic prices and how much they have gone up in the past year. Hmmm..... I smell a rat.

Let me start by saying that I am a huge fan of generic drugs and most of my affordable prescriptions are generics. But my brand name prescriptions cost me anywhere from $35-$105/month. Ouch. And that's mail order prices. Which means I have to keep my chemo brain/fibro fog focus on refilling prescriptions before I run out.

I also am not a fan of too much government regulation. I do prefer when market forces run prices. While I am jealous of drug pricing overseas, I find it unfortunate that certain industries make their huge profits on the backs of American patients.

Now back to that rat that I smell.I suspect that something more is afoot than just market forces on the generic prices. Maybe some collusion somewhere. I don't know what that rat is but I am suspicious. Call me a concerned patient for now but I will keep digging around on this one.

Monday, November 24, 2014

I find it annoying!

Why, oh why, do we have to have stupid pink ribbons everywhere???? Seriously? I knit and crochet and have tables at craft shows locally in November and December each year. Yesterday I was at a show and there were pink ribbons up in the bathroom. Do we need them? Why?

Every craft show also seems to have someone who decides to plaster pink ribbons on at least half their crafts. I don't think I would mind it if they were equal opportunity ribbons for all the different types of cancer and not just the pink ones.

I don't mind the informative posters you see here and there, its just the stupid pink ribbons that annoy me.

Its not October any more. And I really find them annoying in October. Can't we just get rid of them all? The world doesn't need more pink (ribbons)!

Okay, its Monday morning and I am in a 'mood'. I don't have to work but have to take my father to the doctor today. I want to go to the gym first and a friend may stop by later and the house is a MESS!

And then tomorrow I take my father back to the hospital for another adventure. Meanwhile my husband is threatening to clean while I am gone. The problem with him cleaning is he throws everything he doesn't know what to do with in a bag or box and sticks it in the basement and then I hunt for it for six months as he has forgotten what he put where.

Then the Thanksgiving cooking starts.... which is the fun part.

Maybe I'll be cranky today. Don't tell anyone.

Sunday, November 23, 2014

Removing the 'crap shoot' aspect from RA treatment

Right now when you get diagnosed with rhuematoid arthritis this is the standard procedure:
  1. Start with prednisone and plaquenile or a sulfa drug. Prednisone is used to reduce current inflammation for a relatively short period of time. Plaquenile is an old leprosy (really) drug that was found to also treat RA. But it can take 3 months or more to see the benefit Me? I was allergic to both prednisone and plaquenile. 
  2. Oral methotrexate which can take 3 months or more to see the benefit. Methotrexate is the gold standard in treating RA but is also a very toxic chemotherapy drug where it is used in much larger doses. Me? It didn't work. My mother? After twenty years, she developed fibers in her lungs and went on oxygen for a while. Now she is off MX but her lungs are compromised.
  3. Injectable methotrexate. One shot every week, unless fighting a cold or anything. Immune system is severely compromised. But it may not work for everyone either.
  4. Biologics used in combination with methotrexate. But you can't take them if you had cancer. And after time, they may stop working so you need to switch to another injectable, expensive biologic.
  5. New round of RA drugs, including Xeljanz (which is being heavily marketed by Pfizer to me) which is another type of drug.
 With RA, you can only hope the drug they put you on will work. When one stops working, they try something new. When they give you a new drug, you have to wait 3-6 months to see if there is any benefit for you. As you wait, the disease progresses.

The goal of treatment is to put RA into remission and reduce flares of the disease. But this treat and wait system make treatment a total crap shoot as you don't know what will work. And you may wait for a long time to see if it will work.

It sucks.

Since I am allergic to prednisone and plaquenile and I had breast cancer, my treatment options are more limited than the average bear.

But now a rocket scientist has come up with a blood test that will  help take the 'trial and error' or 'crap shoot' process out of  RA treatment. Its about time.

Saturday, November 22, 2014

There is a huge lesson here for all of us

We all have a lesson to learn here. We need to learn to accept our lives for what they are instead of allowing parts of it to cause us stress or depression.

I have now read this article three times. Learning to Live with It: Becoming stress free.

The more I read it, the more it helps me think of my medically disastrous life. I have continuous problems where my health keeps throwing another disaster my way and I have to learn to cope each one. A cancer diagnosis was one - maybe a touch of PTSD with that? But what about an RA diagnosis? Making life more fun each time.

Every change requires adaptation to survive and learn to readapt to the new parts of your life. But we don't need to change the external forces in our life - whether a bad partner, but learn to change our life to cope in its new version.

But the goal of learning to live with, not necessarily to accept it, but to cope, survive and thrive. That has become my goal now. I will keep reading and maybe learn some more about this. Many lessons here.

Friday, November 21, 2014

It all caught up to me

Exhaustion that is. I have been riding this wave of feeling okay most of the time. This happens every so often. Wednesday I felt it a bit. I came in the door at 530 after getting my nails done (a post chemo personal preference - after destroying my nails in chemo, I appreciate them much more now) and felt a wave of exhaustion come over me. We did go out to dinner anyway. I figured I would be okay if I just went to bed after that.

Yesterday I was okay in the morning and made it through work, a couple errands and the grocery store. By the time I got home, I was tired and decided I needed to lie down for an hour before making dinner. An hour later I got up and told my husband it was left overs in the microwave for dinner and back to bed for me.

I was exhausted. I was more than exhausted. I slept all night. The alarm went off and I slept for another hour.

I am still tired but I think I can get through today and probably cook dinner.

This is what happens to me. I function normally and do normal non-energetic things. Then all of a sudden I am completely wiped out. Exhausted.

Tomorrow I hope to sleep late. Maybe even get that crucial 12 hours of sleep. Thank you fibromyalgia and rheumatoid arthritis for doing this to me.

Thursday, November 20, 2014

Vacation breasts?

Or even 24 hour breasts? Really? Yes, seriously. This is the latest in the fad for women. What happened to 'love your body the way you are'? Well thanks to this new doctor in New York, you can get 'instabreasts' which last 24 hours for a paltry $2500. Then in a couple of years you can get vacation breasts - that last 2-3 weeks.

Basically they inject silicone under your breasts and make them appear larger. Why, why, why? What about all the women who have had breast cancer and now just want to look and feel normal again?

There is one voice of reason in the video from a man who points out the idea that why are we messing with nature and having these invasive procedures? And if you had them done repeatedly,  would there be any long term implications?

Wednesday, November 19, 2014

The big scary headline

The latest big scary headline from the pharmaceutical industry says that it will cost $2.5 billion to bring a new drug to market. That's a lot of hype over a little factoid. And this kind of thing pisses me off. Increasing drug prices are an increasing part of medical costs in recent years.

First of all, yes that is a hell of a lot of money. There is no denying that. Second of all, its not as big as it sounds in terms of how they will recoup their money. For example.

If a new drug is developed that will treat a mere 10,000 people each year and costs $5000 per month (not an unexpected amount), it will take the drug companies 4.17 years to recoup their expenses. 10,000x$5,000x12=$600,000,000. $600,000,000x4.17=$2,500,000,000.

And this is why I really have no patience with the drama from the pharmaceutical industry:

"Development costs are one factor companies use in determining how much they will charge for newly approved prescription drugs. But they also weigh demand, the competitive market in their therapeutic areas, and the value they believe a treatment can provide to patients."

So if you thought the so-called 'death panels' were going to put a dollar value on human life, you don't need to worry because the pharma industry already did when they include the 'value they believe a treatment can provide to patients'.

But I do understand the value the pharmaceutical industry brings to medical advancement. I just have a problem with the dollar amounts and drama.

Tuesday, November 18, 2014

Snake oil or good treatment?

Every so often I become a skeptic, well maybe a bit more frequently, but sometimes I am just not sure what I think of new treatment options. And here is an example.

Women with dense breasts run a higher risk of breast cancer being detected later as opposed to sooner as the density makes it more difficult to detect tumors by mammography. So in Australia, there is a new treatment for women with dense breasts. It is an implantable tablet that is placed under the skin and lasts for about four months before they need to go through it again. It has two benefits - reducing breast density and to reduce perimenopausal symptoms. You can see a video on it here and visit their website for more information here.

But its hormones - testosterone and others. Its called T+Ai.... Me I am not a big fan of hormone treatments after what happened to women who were treated with them in the 1980s and 1990s and then found it lead to higher rates of breast cancer. I know testosterone is not a breast cancer hormone per se but I feel it would be messing with my body's balance too much. And if it reduces breast density it is making a permanent change in your body which can't be undone.

It sounds good and could help women be able to detect breast cancer sooner. But is it fear mongering? OMG, you have dense breasts and that means you will get breast cancer and die because it won't be detected early no matter what you do?!!!! Maybe for high risk women with dense breasts but not for huge groups of women.

So my jury, of one, is still out on this one. I am a skeptic.

Monday, November 17, 2014

Over treatment issues again

Electronic medical records do all kinds of helpful things. I remember going from doctor appointment to doctor appointment, lugging a six inch thick file. Now the doctors and nurses carry laptops or tablets and can look up information quicker to see when I last had a blood test or MRI.

Now the data is being mined to find out if Americans are getting their cholesterol blood tests, mammograms, and colonoscopies and all sorts of other helpful tests. But also to see if people are getting their tests too frequently.

And it turns out that some Americans are getting too many colonoscopies. Really? I mean who wants to have a camera 'there' too often? I am personally in the five year club for them. My husband was in the two year club but now is also in the five year club. But the average healthy person needs them every ten years, no more often.

If you are over fifty and never have had a colonoscopy, can I tell you two stories about people I know personally who waited too long? One is now stage IV colon cancer.

There are concerns with too frequent testing unless there is a compelling reason - higher costs and higher risks. Colonoscopies do come with risks as do any invasive peek inside you. And even if you do not pay out of pocket for a colonoscopies, there are costs incurred.

Medical over-treatment is a real problem. Antibiotics are given to treat viruses. This leads to antibiotic resistant germs. Choosing Wisely is an established project to help patients question tests or procedures that might actually be over treatment. Yes an ounce of prevention is worth a pound of cure. But too many ounces of prevention can quickly add up to the pound.

Sunday, November 16, 2014

Its not a tumor....

So life in cancerland is basically summed up by the one thought: "will it come back?"

As this child helpfully tells us in Kindergarten Cop, that is the one thing we can't get out of our heads.

Every ache and pain could be a something, meaning a bad something. We have to learn is how to balance that thought. Sometimes helpful people say wonderful, well meaning things like this to us which help raise our cancer-cootie-concern-level. Or sometimes a peak inside our insides in an MRI, PET or CT scan gives us bad news. At which point the cancerland roller coaster starts going up the really steep hill and becomes a whirling twisting ride until we hopefully can get back to the smaller hills.

No I am fine but this video popped up on my radar the other day and it makes a valid point.

Saturday, November 15, 2014

Bad news doesn't always mean bad news

Puma pharmaceutical's new drug, neratinib, did not perform as well as Herceptin in the latest clinical trials - by the definition of extending disease free survival.

However, bad news doesn't mean bad news when you look at the rest of the story.

"As expected, there was no statistically significant difference in progression-free survival and objective response rate for the paclitaxel plus neratinib arm compared to the paclitaxel plus trastuzumab arm," Auerbach said. "However ... while the development of other HER2-targeted drugs has produced a clinically meaningful benefit to patients with HER2 positive breast cancer, these drugs have had little impact on CNS metastases. As a result, we believe that there remains an unmet clinical need for reducing the incidence of CNS metastases, and the results of the NEfERTT study demonstrate that we may be able to provide this type of improvement with neratinib."

CNS metastases are Clinical Nervous System mets (I had to look that up). Which would really suck. So that means that while it did not extend disease free survival it did open a door to other advancements. So stay tuned, I guess, for the rest of the story. Or maybe this is just called progress.

Friday, November 14, 2014

Personalized cancer care is looking more like a crap shoot

All sorts of research is being done on personalized cancer care. But it looks like a crap shoot to me.

There have been some recent developments:

"This summer, a Mass. General team showed that it was possible to isolate rare tumor cells circulating in the blood and analyze them to understand how a patient’s cancer was changing. Other researchers have been working on developing mouse avatars, in which a patient’s tumor is grown in a lab animal in which new therapies can be tested."

This is pretty cool. But there are still problems. For example, researchers have been taking cancer tissue from patients who's cancer has returned and then bombard it with different therapies to see which ones work. The premise is then that the treatment will work in the patient.

"Researchers must show that the drug predictions that seem so promising in a dish actually work in patients. They also will need to deal with technological issues, such as the time it takes to grow patients’ tumor cells in a dish — between two and six months in the study, and not every attempt was successful."

Not only does the time to grow the tumor cells prolong the wait for treatment - which cancer patients with a recurrence do not have. But then there is no promise that the treatment will work.

So its a crap shoot. The patient has a choice - try the best treatment available now or wait two to six months to see if something better might be chosen from a petri dish? Does anyone have a different suggestion?

Or maybe 'more research is needed' as they always say.

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