Stephen Sutton died yesterday morning in his sleep at the age of 19 in the UK after being diagnosed with bowel cancer in September 2010. He had a Facebook page and a website with a blog and a bucket list (mostly completed) and you can follow his timeline to learn what he did.
He accomplished a lot in his short life including raise over 500,000 pounds for charity. He should be remembered as someone who did some pretty amazing things. Go read about him and be inspired to get moving in your life.
Thursday, May 15, 2014
Wednesday, May 14, 2014
A Crazy Day
This morning I am up early and need to get out the door in the next ten minutes (but of course I stop to blog first). I am volunteering at the annual New England Direct Marketing Association's conference where I take care of the vendors and help get them organized. Everyone else there hates dealing with the vendors because they ask so many questions but I have fun with it. But it will be a long day. Within an hour, I will be trying not to move tables around or climb under them to local plugs.
My question is how many more years I can keep doing this. For people with a bad back and arthritis it is not the most user friendly day. I have been doing this for several years now as my health has gone downhill. So I am not sure how many more years I will be able to help them.
I then have to finish packing to go to a friend's wedding (you know who you are Judie and Anders). My husband has this crazy idea that I will be done packing in time to go out for a leisurely dinner. That's just nuts. I still haven't gotten my medications organized for four days a way...
I have decided that traveling by myself I will suck it up and pay Delta their extra $25 to check a bag, and really hope they don't lose it. So if I am going to check a bag, I can bring a big bag to fit everything in. I have no idea what dress I'll be wearing so I am bring four dresses (three with tags still on so I have the return option) to choose from once I get there. This means several pairs of shoes depending on the dress. You get it. All this equals the giant suitcase. This just another example of me trying to be a normal person... (You know what happens next - crabbiness.)
But I digress. It will be a crazy day today. I have no idea how much time I will have to pack this afternoon and how much my back will hurt but I have to get going. I am due there in fifteen minutes. I'll bring coffee.
My question is how many more years I can keep doing this. For people with a bad back and arthritis it is not the most user friendly day. I have been doing this for several years now as my health has gone downhill. So I am not sure how many more years I will be able to help them.
I then have to finish packing to go to a friend's wedding (you know who you are Judie and Anders). My husband has this crazy idea that I will be done packing in time to go out for a leisurely dinner. That's just nuts. I still haven't gotten my medications organized for four days a way...
I have decided that traveling by myself I will suck it up and pay Delta their extra $25 to check a bag, and really hope they don't lose it. So if I am going to check a bag, I can bring a big bag to fit everything in. I have no idea what dress I'll be wearing so I am bring four dresses (three with tags still on so I have the return option) to choose from once I get there. This means several pairs of shoes depending on the dress. You get it. All this equals the giant suitcase. This just another example of me trying to be a normal person... (You know what happens next - crabbiness.)
But I digress. It will be a crazy day today. I have no idea how much time I will have to pack this afternoon and how much my back will hurt but I have to get going. I am due there in fifteen minutes. I'll bring coffee.
Tuesday, May 13, 2014
Only perfect people need apply
It is a known fact that clinical trials are very selective when creating their selection criteria for who to include. (That is not a grammatical sentence but its early in the day here.) What I am trying to say is that if you do not fit their criteria, you will not be included. I have so many ailments, I have never been included in a clinical trial. They don't want me.
Hop on over the clinicaltrials.gov and see if you would fit their criteria for any. They are very specific. Basically they are trying to determine toxicity, dosage and more. An abbreviated version of the official government description of the different stages are:
"Phase 0: Exploratory study involving very limited human exposure to the drug, with no therapeutic or diagnostic goals (for example, screening studies, microdose studies).
Phase 1: Studies that are usually conducted with healthy volunteers and that emphasize safety.
Phase 2: Studies that gather preliminary data on effectiveness (whether the drug works in people who have a certain disease or condition).
Phase 3: Studies that gather more information about safety and effectiveness by studying different populations and different dosages and by using the drug in combination with other drugs.
Phase 4: Studies occurring after FDA has approved a drug for marketing. These including postmarket requirement and commitment studies that are required of or agreed to by the sponsor."
In Phase 2 and 3 trials, the most common ones we hear about and participate in, are where the drug manufacturers select their groups of patients who have the disease that they hope to treat. But they routinely exclude people with other issues who might not conflict with the trials or cause side effects that could be from the new drug or from the other issues. So you have to be perfect.
A growing problem is that with the aging population as the Boomer generation about to hit their 70s, older patients are being treated with new drugs that have not been tested on their age group.
"For at least 25 years, it’s been known that drugs that work one way in an otherwise healthy younger adult might not work the same way in the elderly. Many older adults are frail and might metabolize medications more slowly or suffer unforeseen drug interactions. Blood thinners, for example, might be riskier in someone with a tendency to fall. Medications to control blood pressure could be harder to dose appropriately in a patient with poor kidney function. In 1989, the FDA set guidelines encouraging drug companies to study how their drugs affect the elderly, with the goal that the population being studied prior to drug approval should resemble the population that would ultimately take the medications. But the guideline was not a mandate...."
"...one in five trials excluded potential participants based on their age alone. In half of the remaining trials, patients were excluded from participating because of conditions that disproportionately affect older adults, such as cognitive dysfunction or limited physical activity. And only one quarter of the studies looked at outcomes that might be relevant to older adults, such as quality of life or physical function."
So for all of us imperfect people out there, you can understand the issues here with multiple health issues, never mind age, which may cause us additional problems through treatment.
Hop on over the clinicaltrials.gov and see if you would fit their criteria for any. They are very specific. Basically they are trying to determine toxicity, dosage and more. An abbreviated version of the official government description of the different stages are:
"Phase 0: Exploratory study involving very limited human exposure to the drug, with no therapeutic or diagnostic goals (for example, screening studies, microdose studies).
Phase 1: Studies that are usually conducted with healthy volunteers and that emphasize safety.
Phase 2: Studies that gather preliminary data on effectiveness (whether the drug works in people who have a certain disease or condition).
Phase 3: Studies that gather more information about safety and effectiveness by studying different populations and different dosages and by using the drug in combination with other drugs.
Phase 4: Studies occurring after FDA has approved a drug for marketing. These including postmarket requirement and commitment studies that are required of or agreed to by the sponsor."
In Phase 2 and 3 trials, the most common ones we hear about and participate in, are where the drug manufacturers select their groups of patients who have the disease that they hope to treat. But they routinely exclude people with other issues who might not conflict with the trials or cause side effects that could be from the new drug or from the other issues. So you have to be perfect.
A growing problem is that with the aging population as the Boomer generation about to hit their 70s, older patients are being treated with new drugs that have not been tested on their age group.
"For at least 25 years, it’s been known that drugs that work one way in an otherwise healthy younger adult might not work the same way in the elderly. Many older adults are frail and might metabolize medications more slowly or suffer unforeseen drug interactions. Blood thinners, for example, might be riskier in someone with a tendency to fall. Medications to control blood pressure could be harder to dose appropriately in a patient with poor kidney function. In 1989, the FDA set guidelines encouraging drug companies to study how their drugs affect the elderly, with the goal that the population being studied prior to drug approval should resemble the population that would ultimately take the medications. But the guideline was not a mandate...."
"...one in five trials excluded potential participants based on their age alone. In half of the remaining trials, patients were excluded from participating because of conditions that disproportionately affect older adults, such as cognitive dysfunction or limited physical activity. And only one quarter of the studies looked at outcomes that might be relevant to older adults, such as quality of life or physical function."
So for all of us imperfect people out there, you can understand the issues here with multiple health issues, never mind age, which may cause us additional problems through treatment.
Monday, May 12, 2014
Healthline Best Breast Cancer Blogs of 2014
Once again, I am very honored to be included in Healthline's Best Breast Cancer Blogs of 2014. For some reason, this is what they think of me:
"Caroline's Breast Cancer Blog is not just the story of a woman’s battle with cancer and the health complications that accompany treatment. It’s also a running commentary on the ins and outs of an evolving health care industry. But rather than rant about FDA rules, health insurance, and mammogram guidelines, Caroline Ronten brings a reasoned tone to the conversation. She asks the questions many of us also ponder.
Ronten will make you feel for her as she grapples with health problems beyond cancer. But she’ll also make you think about just what fixes are needed to make health care better for everyone."
I didn't know anyone thought that I had a reasoned tone or was reasonable but I am pleased to hear it and very happy to be included in this list again, as in the past 3 or 4 years (I think).
I was reading through their list of the best cancer blogs and realized that I follow many of them and think they are very good. My blog reading list has grown in recent years as I have added the other blogs on the list to my reading list. I highly recommend following the other 20 blogs on the list as they provide a lot of thoughts and issues and commentary across the full gamut of breast cancer and its surrounding issues.
"Caroline's Breast Cancer Blog is not just the story of a woman’s battle with cancer and the health complications that accompany treatment. It’s also a running commentary on the ins and outs of an evolving health care industry. But rather than rant about FDA rules, health insurance, and mammogram guidelines, Caroline Ronten brings a reasoned tone to the conversation. She asks the questions many of us also ponder.
Ronten will make you feel for her as she grapples with health problems beyond cancer. But she’ll also make you think about just what fixes are needed to make health care better for everyone."
I didn't know anyone thought that I had a reasoned tone or was reasonable but I am pleased to hear it and very happy to be included in this list again, as in the past 3 or 4 years (I think).
I was reading through their list of the best cancer blogs and realized that I follow many of them and think they are very good. My blog reading list has grown in recent years as I have added the other blogs on the list to my reading list. I highly recommend following the other 20 blogs on the list as they provide a lot of thoughts and issues and commentary across the full gamut of breast cancer and its surrounding issues.
Sunday, May 11, 2014
Before you die
Don't go with regrets. The top five regrets of the dying are (according to some survey or another):
I think I am doing pretty well with these. I am not sure I will have these regrets but I want to make sure I don't have any regrets. I guess the point is to be happy in your life so you don't have regrets.
- I wish I had the courage to live a life true to myself instead of what was expected of me
- I wish I didn't work so hard
- I wish I had the courage to express my feelings
- I wish I had stayed in touch with friends
- I wish I had let myself be happier
I think I am doing pretty well with these. I am not sure I will have these regrets but I want to make sure I don't have any regrets. I guess the point is to be happy in your life so you don't have regrets.
Saturday, May 10, 2014
How to be a bad patient
Doctors (and dentists) have their own pet peeves about patients. Of course, we can't all be the perfect patient but here are the best ways to piss off your local medical office:
I try to not do these things. I admit to be guilty of most of these at times. I am human. But I try not to be a bad patient. I have enough ailments so I usually am not a quick visit for them.
- Show up late. Its often a medical emergency or patient issue which makes your doctor run late. But you are not helping if you wander in 45 minutes late and your doctor now has to fit you in because your time slot has passed.
- You ask unrelated questions to your doctor or their staff. If its not a medical problem, its not their problem.
- You lie about taking your medications. If you didn't take your medication for some reason, at least be honest about it. And if you didn't take your medication as directed and didn't get better, its not their fault.
- You self diagnose yourself and tell the doctor what you have. Some things are easy - you have a rash for example. You can see it. But don't tell your doctor you have a specific ailment unless it has been diagnosed. That is their job, not yours.
- You start asking questions at the end of the appointment after your conversation with them has ended. To help remember, bring a list of questions with you and highlight the most important ones so you cover them.
I try to not do these things. I admit to be guilty of most of these at times. I am human. But I try not to be a bad patient. I have enough ailments so I usually am not a quick visit for them.
Friday, May 9, 2014
Using immune cells to reduce tumors
This sound interesting. Not stem cells, but the patient's own immune cells, were used to help to help fight cancer.
What they did is:
"Researchers at the National Cancer Institute sequenced the genome of her cancer and identified cells from her immune system that attacked a specific mutation in the malignant cells. Then they grew those immune cells in the laboratory and infused billions of them back into her bloodstream.
The tumors began “melting away,” said Dr. Steven A. Rosenberg, senior author of the article and chief of the surgery branch at the cancer institute."
Now the patient is not cured but her tumors are much smaller. She had an advanced and particularly deadly type of cancer in 2012 when she was approached to try this experiemental technique. Now just because it worked on one person, it does not mean its ready for prime time. But it does represent a new approach to cancer treatment.
What they did is:
"Researchers at the National Cancer Institute sequenced the genome of her cancer and identified cells from her immune system that attacked a specific mutation in the malignant cells. Then they grew those immune cells in the laboratory and infused billions of them back into her bloodstream.
The tumors began “melting away,” said Dr. Steven A. Rosenberg, senior author of the article and chief of the surgery branch at the cancer institute."
Now the patient is not cured but her tumors are much smaller. She had an advanced and particularly deadly type of cancer in 2012 when she was approached to try this experiemental technique. Now just because it worked on one person, it does not mean its ready for prime time. But it does represent a new approach to cancer treatment.
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