More about fibromyalgia.
One Minute Medical School on Fibromylagia, in case you were trying to figure out what it is.
By the way, I hate swimming so that's not happening.
I got promoted
I now have enough ailments, or an important one, that allowed my insurance company to nominate me to get extra personal care. AccordantCare, which is part of CVS somehow, provides an information library and personal contact with a nurse who helps with dealing with doctors, treatment plans, and just some one to call and talk to about health issues.
Due to my RA diagnosis and my insurance company's arrangement with them, I get this extra care. I think it could be helpful. In addition to the fact that my RA is still not under control, my rheumatologist is leaving and I am getting a new one, and its a relatively new diagnosis, I think I could use some help.
I feel sorry for the nurse who is going to call me thinking I just have RA. When I get done with her at the first call, going through my ailments, my prescriptions (I was in the category of more than 9 daily), and other issues, I think they might be a tiny bit overwhelmed. How quickly will these conversations turn into 'with your medical history, we need to be sure' conversations? (I hate that part.) I am sure that s/he will want to focus on RA which is fine but there is more to my health that just it.
I have a call scheduled with the nurse for a week from Monday so I'll wait and see how it goes. In the meantime, I will take my creaky body to the gym to see if I can get moving today.
Due to my RA diagnosis and my insurance company's arrangement with them, I get this extra care. I think it could be helpful. In addition to the fact that my RA is still not under control, my rheumatologist is leaving and I am getting a new one, and its a relatively new diagnosis, I think I could use some help.
I feel sorry for the nurse who is going to call me thinking I just have RA. When I get done with her at the first call, going through my ailments, my prescriptions (I was in the category of more than 9 daily), and other issues, I think they might be a tiny bit overwhelmed. How quickly will these conversations turn into 'with your medical history, we need to be sure' conversations? (I hate that part.) I am sure that s/he will want to focus on RA which is fine but there is more to my health that just it.
I have a call scheduled with the nurse for a week from Monday so I'll wait and see how it goes. In the meantime, I will take my creaky body to the gym to see if I can get moving today.
Further proof that thyroid cancer is not a good cancer
Robert Ebert died the other day of cancer. He had both papillary thyroid cancer and salivary gland cancer. I do not know which cancer was the one that got him in the end and does it really matter?
People go around saying thyroid cancer is a good cancer. Its not. It kills people.
People go around saying thyroid cancer is a good cancer. Its not. It kills people.
Here's a big oops!
A bunch of cancer patients in Canada received less than the specified dose of chemotherapy. Nearly 1200 patients in a group of medical centers and then 186 at another. Oopsy! They do not really say how it happened but its clearly a problem. Chemotherapy doses, I believe, are based on body weight. I think the dose you receive always starts on the higher side to see if its tolerated and then the oncologist can tweak it down.But if the oncologist does all their math and then the dose is too weak, that's a problem.
What is scary is this wasn't discovered until a pharmacy technician noticed it.
The hospitals say they have steps in place for handling chemotherapy drugs but they will work carefully to find out the source of the problem. I certainly hope they do.
While you are in chemo you assume you are getting th eright treatment. But what if the doctor is doing their best and some how your drugs were mislabeled. And what if you were overdosed the 3-20% that was the amount underdosed in this case? You might get pretty damn sick from it. At the very least your blood counts would tank.
Anyway, a big oops here. I hope someone learns a lesson and everyone is okay who got the wrong dose.
What is scary is this wasn't discovered until a pharmacy technician noticed it.
The hospitals say they have steps in place for handling chemotherapy drugs but they will work carefully to find out the source of the problem. I certainly hope they do.
While you are in chemo you assume you are getting th eright treatment. But what if the doctor is doing their best and some how your drugs were mislabeled. And what if you were overdosed the 3-20% that was the amount underdosed in this case? You might get pretty damn sick from it. At the very least your blood counts would tank.
Anyway, a big oops here. I hope someone learns a lesson and everyone is okay who got the wrong dose.
Put some cost pressure on the providers
Finally I think some pressure is being put on drug manufacturers to manage costs. There was a recent report out of the UK saying that the cost benefit analysis of everolimus, a new advanced breast cancer drug, led to the decision by the National Institute of Health and Clinical Excellence (NICE) to not recommend its use.
Then another study in the US shows that the cost of drugs for Hepatitis C and Rheumatoid Arthritis account for more than 50% of the costs to treat those patients.
"In the first study, researchers found that despite the overall decrease in Hep C specialty drug use from 2008 to 2011 (17.2 percent vs. 14.1 percent), the Hep C specialty pharmacy total cost of care compound annual growth rate (CAGR) was 15 percent from 2008 to 2011. Specialty drug costs accounted for 35 percent ($13,332 of $38,055) of the total cost of Hep C care in 2008 and was substantially higher at 52.6 percent in 2011 ($30,415 of $57,799), with a CAGR of 31.8 percent.
In the second study, researchers found that although RA drug use remained steady from 2008 to 2010 (34.6 percent vs. 35.4 percent), the total cost of care CAGR was 7.3 percent from 2008 to 2010. All other medical costs were $11,252 in 2008 and increased to $13,710 in 2010, with a CAGR of 10.4 percent. Combined RA medical and specialty drug costs accounted for $16,218 (54.7 percent) of $29,652 total cost of care in 2008. In 2010, total cost of care was slightly lower at 53.0 percent ($18,098 of $34,163), with a CAGR of 5.6 percent."
'"As the pipeline of expensive specialty drugs continues to grow, we need to stay alert to cost of care trends to make sure patients and plan sponsors receive the best value and can manage the increasing cost burden these treatments bring,"...'
We can't expect insurance companies to pick up the costs of these expensive drugs. Everolimus was priced at twice the amount of Herceptin. Nor can we expect patients to pick up increasing portions of the price. One of my drugs is $95/month co-pay.
This is an issue which warrants more investigation and pressure. Drug manufacturers have blamed research costs for their increasing product pricing. But has pressure been put back on them to reduce their costs in production of drugs. Perhaps they need to take a long hard look at their business practices. As more studies reveal the cost benefit discrepancies, somethings need to change. And it should not be at the expense of quality of life or of the lives of patients.
Then another study in the US shows that the cost of drugs for Hepatitis C and Rheumatoid Arthritis account for more than 50% of the costs to treat those patients.
"In the first study, researchers found that despite the overall decrease in Hep C specialty drug use from 2008 to 2011 (17.2 percent vs. 14.1 percent), the Hep C specialty pharmacy total cost of care compound annual growth rate (CAGR) was 15 percent from 2008 to 2011. Specialty drug costs accounted for 35 percent ($13,332 of $38,055) of the total cost of Hep C care in 2008 and was substantially higher at 52.6 percent in 2011 ($30,415 of $57,799), with a CAGR of 31.8 percent.
In the second study, researchers found that although RA drug use remained steady from 2008 to 2010 (34.6 percent vs. 35.4 percent), the total cost of care CAGR was 7.3 percent from 2008 to 2010. All other medical costs were $11,252 in 2008 and increased to $13,710 in 2010, with a CAGR of 10.4 percent. Combined RA medical and specialty drug costs accounted for $16,218 (54.7 percent) of $29,652 total cost of care in 2008. In 2010, total cost of care was slightly lower at 53.0 percent ($18,098 of $34,163), with a CAGR of 5.6 percent."
'"As the pipeline of expensive specialty drugs continues to grow, we need to stay alert to cost of care trends to make sure patients and plan sponsors receive the best value and can manage the increasing cost burden these treatments bring,"...'
We can't expect insurance companies to pick up the costs of these expensive drugs. Everolimus was priced at twice the amount of Herceptin. Nor can we expect patients to pick up increasing portions of the price. One of my drugs is $95/month co-pay.
This is an issue which warrants more investigation and pressure. Drug manufacturers have blamed research costs for their increasing product pricing. But has pressure been put back on them to reduce their costs in production of drugs. Perhaps they need to take a long hard look at their business practices. As more studies reveal the cost benefit discrepancies, somethings need to change. And it should not be at the expense of quality of life or of the lives of patients.
Cancer treatment in stealth mode
I find this fascinating. Stealth mode makes me think of spies, CIA, cold war, KGB, NSA, guerrilla warfare, covert operation and all that.
I found an article on Smithsonian.com, The War on Cancer Goes Stealth, which explains in detail what exactly they are doing - tricking cells, sneaking past the sentries, etc. I know it needs more testing and many researchers will be busy with this for a long time but treatments targeting individual cancer cells so patients can avoid chemotherapy and enjoy a good quality of life.
Here is a TED talk explaining it more with links to more talks on it here.
This intrigues me to no end. And convinces me I should have paid more attention in biology and chemistry (physics not so much) so I could understand it better. And it shows hope for a new wave of treatment that are not as harmful to the patient.
My only concerns are - how soon will this happen and how much will it cost?
Want vs can
As I have been cutting back in my life, I have run into some misunderstandings. There are people who think that I am not doing as many things in my life due to the fact that I don't want to. But the reality is that I cant do everything I used to do.
I used to go for a daily walk. Yesterday I went for a walk because it hit 60 degrees (finally) on one of my favorite routes through the conservation land that I used to do easily. When I came home and had to lie down for a bit and was hobbling around for the rest of the day and almost bailed on cooking dinner.
I was at a meeting recently and someone said something about me not wanting to do everything I used to do for the group. They were wrong, I really can't. I think they look at me and think I look the same as I did six months ago but I am not.
Looks can be deceiving. Just because I do not look different, doesn't mean I don't feel differently. I am on more medications, in more pain, have less energy, and have much more difficulty in getting around. I am not a slacker but I just can't do everything I used to.
So before you look at me and tell me that I don't want to do something or I just need to suck it up and do everything I used to do, take a minute to think from my side and don't assume that I'm lazy.
I used to go for a daily walk. Yesterday I went for a walk because it hit 60 degrees (finally) on one of my favorite routes through the conservation land that I used to do easily. When I came home and had to lie down for a bit and was hobbling around for the rest of the day and almost bailed on cooking dinner.
I was at a meeting recently and someone said something about me not wanting to do everything I used to do for the group. They were wrong, I really can't. I think they look at me and think I look the same as I did six months ago but I am not.
Looks can be deceiving. Just because I do not look different, doesn't mean I don't feel differently. I am on more medications, in more pain, have less energy, and have much more difficulty in getting around. I am not a slacker but I just can't do everything I used to.
So before you look at me and tell me that I don't want to do something or I just need to suck it up and do everything I used to do, take a minute to think from my side and don't assume that I'm lazy.
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