My little world is feeling very aggravated this morning. First of all my damn laptop is having way too many technical issues. I have been working on it for days. It keeps running too slow. It is running a little faster but still has hiccups. I need to pull some more tricks out of my sleeve to fix it.
Also, my damn prescriptions are aggravating me. A few weeks ago, I had prescription issues when it took weeks to get one filled. Last Tuesday I called in another prescription and today I had to call again... I have 1, yes ONE, pill left. Which means I have until tomorrow at about 6 pm before I completely run out. Just damn aggravating.
Then I read in this morning's paper (yes I read the paper newspaper every day - the comics are better in the paper than online, and if you don't read the comics, life would be too boring) about how many unvaccinated children there are these days.
Who knew that most children do not get their vaccinations before their second birthday? Vaccinations are one of the greatest advances in modern medicine and people don't get their kids vaccinated. I don't get this. People who stop eating fast food to be healthier but then don't get their kids vaccinated? They would have their children's best interest at heart if they got the shots.
I just don't understand this. Its the same for people who go macrobiotic and skip going to the doctor. Maybe I'm just good and aggravated already before I read the paper
Dec 4, 2017
Nov 27, 2017
Inaccurate Medical Tests
With new medical research, medical 'tests' are springing up all over to test for genetic defects in unborn babies, best treatments for medical conditions, and risks of certain diseases, among other issues. The problem is not all these tests are accurate and are leading to unnecessary surgeries, putting patients on unneeded medications, and raising medical costs.
The problem is when tests are run at a single facility so the FDA is relying on manufacturer reported problems including deaths or injuries to patients.
"Diagnostic tests are now regulated differently depending on where they were developed and manufactured. Products that will be sold to multiple labs — “commercial test kits” — are typically subject to FDA review before they go on the market.
Manufacturers are supposed to inform the government if they learn that their products may have contributed to a death or a serious injury, and they may have to notify the government if they recall defective products.
But for tests manufactured and used within a single laboratory, the agency has not actively enforced regulatory requirements, even though doctors around the country may submit samples to that lab for testing."
The tests included here are the OncotypeDX for breast cancer recurrence risk and the CA-125 test for ovarian cancer. Using the CA-125 test as an example:
One blood test to help detect ovarian cancer was never shown to be effective, the report said, but was used anyway. False-positive tests may have led to “unnecessary surgery to remove healthy ovaries.”
According to the American Cancer Society:
"In studies of women at average risk of ovarian cancer, using TVUS and CA-125 for screening led to more testing and sometimes more surgeries, but did not lower the number of deaths caused by ovarian cancer. For that reason, no major medical or professional organization recommends the routine use of TVUS or the CA-125 blood test to screen for ovarian cancer."
There are also studies out looking at the validity of these two tests and others. The current administration as well as much of Congress is looking at ways to close loopholes and require additional testing and validation of the tests to ensure patients are not harmed or subject to unneeded treatments.
My doctors have never mentioned either of these two tests for me. I do not think they are used at the hospital where I am treated either. Sometimes I have wondered why these tests were not offered. But now I am happy I didn't make any decisions based on their results.
The problem is when tests are run at a single facility so the FDA is relying on manufacturer reported problems including deaths or injuries to patients.
"Diagnostic tests are now regulated differently depending on where they were developed and manufactured. Products that will be sold to multiple labs — “commercial test kits” — are typically subject to FDA review before they go on the market.
Manufacturers are supposed to inform the government if they learn that their products may have contributed to a death or a serious injury, and they may have to notify the government if they recall defective products.
But for tests manufactured and used within a single laboratory, the agency has not actively enforced regulatory requirements, even though doctors around the country may submit samples to that lab for testing."
The tests included here are the OncotypeDX for breast cancer recurrence risk and the CA-125 test for ovarian cancer. Using the CA-125 test as an example:
One blood test to help detect ovarian cancer was never shown to be effective, the report said, but was used anyway. False-positive tests may have led to “unnecessary surgery to remove healthy ovaries.”
According to the American Cancer Society:
"In studies of women at average risk of ovarian cancer, using TVUS and CA-125 for screening led to more testing and sometimes more surgeries, but did not lower the number of deaths caused by ovarian cancer. For that reason, no major medical or professional organization recommends the routine use of TVUS or the CA-125 blood test to screen for ovarian cancer."
There are also studies out looking at the validity of these two tests and others. The current administration as well as much of Congress is looking at ways to close loopholes and require additional testing and validation of the tests to ensure patients are not harmed or subject to unneeded treatments.
My doctors have never mentioned either of these two tests for me. I do not think they are used at the hospital where I am treated either. Sometimes I have wondered why these tests were not offered. But now I am happy I didn't make any decisions based on their results.
Nov 20, 2017
Can I be a person not a patient?
I often feel I spend a good portion of my life going from medical appointment to medical appointment. My calendar is full of doctor appointments, reminders to call different doctors, or notes on prescriptions.
My schedule is set for the rest of my life by medical appointments. Yesterday I wanted to go to the gym in the morning but had to wait until after the eye doctor for my dry eyes, which force me there twice a year. Those dry eyes, along with dry mouth, are a 'benefit' of my rheumatoid. Which is followed by a dentist appointment on Friday morning, which will also delay my getting to the gym. Or force me to get up early to go to the gym first.
I used to work with a woman who scheduled all her doctor appointments for the year in one week. I'm so jealous.
Normal people don't go to the doctor as often as I do. Their calendars are filled with friends, fun, and adventures. I get to go to the doctor.
My schedule is set for the rest of my life by medical appointments. Yesterday I wanted to go to the gym in the morning but had to wait until after the eye doctor for my dry eyes, which force me there twice a year. Those dry eyes, along with dry mouth, are a 'benefit' of my rheumatoid. Which is followed by a dentist appointment on Friday morning, which will also delay my getting to the gym. Or force me to get up early to go to the gym first.
I used to work with a woman who scheduled all her doctor appointments for the year in one week. I'm so jealous.
Normal people don't go to the doctor as often as I do. Their calendars are filled with friends, fun, and adventures. I get to go to the doctor.
Nov 13, 2017
Comparing notes
Yesterday I had lunch with a high school friend who has MS. She is the one person I know who can relate to many of my health issues. While she hasn't had cancer, she has had chemotherapy - it is used for MS as well as other ailments besides cancer. Its safe to say we can compare a lot of notes.
As we graduated from junior high and high school together, we both are 37 and holding. And our respective healths (I am not sure healths is a word but I'm using it) are in the toilet. We discussed exercise options - she is an avid hand cycler - and I go to the gym.
We also talked pain management and siblings. Pain management is big for both of us. Pain management while functioning like a normal human being is even more important. There is a fine line between the two. And siblings? Need I say more. We got to argue about who got the better handicapped parking space. I got there first and left her a closer van accessible space... that someone else took before she arrived.
I have many cancer friends these days but I don't know as many people with other chronic conditions. And my friends with rheumatoid don't seem to have anywhere as many symptoms as I do.
As we graduated from junior high and high school together, we both are 37 and holding. And our respective healths (I am not sure healths is a word but I'm using it) are in the toilet. We discussed exercise options - she is an avid hand cycler - and I go to the gym.
We also talked pain management and siblings. Pain management is big for both of us. Pain management while functioning like a normal human being is even more important. There is a fine line between the two. And siblings? Need I say more. We got to argue about who got the better handicapped parking space. I got there first and left her a closer van accessible space... that someone else took before she arrived.
I have many cancer friends these days but I don't know as many people with other chronic conditions. And my friends with rheumatoid don't seem to have anywhere as many symptoms as I do.
Nov 7, 2017
He's walking the walk, not just talking the talk
Here's an example of someone who is really walking the walk. A former NHL (Non Hodgkin Lymphoma) patient, Robert Bazemore, is now the CEO of Epizyme which is developing a drug targetting NHL (which is not just a hockey league for some with cancer).
This is huge to me. I greatly hope that this means the company will focus on the patients and not just on the bottom line. The article mentions that he did not mention his medical history when interviewing for the board but did reveal it after learning about the focus of the company.
As a cancer person it is very difficult not to let a disease define you and what you do. Often we keep it hidden from co-workers because we do not want to be labeled or thought of as being sick. This can be a huge detriment to one's career path. If others think we aren't physically up to a job or we might n need too much time off and would be a burden to the company and therefore would not get a job offer.
But now that we have a CEO, openly a cancer person, running a company which is developing a drug that might help him and others with his same cancer. I am a huge fan.
I wish more people could do this and society would not shame people for medical issues.
This is huge to me. I greatly hope that this means the company will focus on the patients and not just on the bottom line. The article mentions that he did not mention his medical history when interviewing for the board but did reveal it after learning about the focus of the company.
As a cancer person it is very difficult not to let a disease define you and what you do. Often we keep it hidden from co-workers because we do not want to be labeled or thought of as being sick. This can be a huge detriment to one's career path. If others think we aren't physically up to a job or we might n need too much time off and would be a burden to the company and therefore would not get a job offer.
But now that we have a CEO, openly a cancer person, running a company which is developing a drug that might help him and others with his same cancer. I am a huge fan.
I wish more people could do this and society would not shame people for medical issues.