We always hear about these new lifesaving drugs that are discovered and going through clinical trials. The good part of clinical trials is that they help other patients who get their diagnosis later on. It is also supposed to help the current patient who has a late stage disease for which there is no cure.
There is a scary side to clinical trials for these late stage patients. Will the new drug kill them or cause horrible side effects?
As patients we hear about clinical trials and how new drugs are always coming out and if we go on clinical trials they will help future patients. 'You are doing something good as well as trying to save your life.' That is the Rah-Rah-Take-One-For-The-Team attitude that pushes forth on the wave of clinical trials. You can do it! You are helping others!
But no one ever talks about the fact that the clinical trial drugs are very unproven, which are why they are in clinical trials, and not much is know about them. The official definition of a stage I clinical trial is:
"Phase I: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects."
So not much is know about its safety. Will it kill the patient? Will the side effects be horrible and weaken your body so you cannot handle other future medications?
I never really thought about this until I read this article, 'Breakthrough drugs are saving lives but wrenching souls', the other day.
Apr 23, 2018
Apr 16, 2018
Medical research and me
Finally a study for me, sort of. In a recent study, they found that women with breast cancer were more likely to be diagnosed with thyroid cancer in the five years following their initial diagnosis. And vice versa, with thyroid cancer, you are more likely to be diagnosed with breast cancer.
So I am not really in the study because my cancers were 26 years apart. But its nice to get some logic for my medical crap.
The more complicated explanation is:
"The authors wrote that those second primary tumors detected within 5 years of the initial primary diagnosis show “favorable histopathological findings and prognosis,” especially in TC patients subsequently diagnosed with BC, and thus close monitoring for BC may be beneficial.
“Although the increased incidence appears to be principally due to increased detection rates, the greater expression of estrogen receptor and progesterone receptor in BC in patients with co-existing TC suggests that a specific molecular pathogenesis might underlie this association,” they concluded."
So whatever a 'histopathological finding' is and 'molecular pathogenesis' might mean, there may be some kind of reasoning behind my cancers.
As a patient, I hear about studies and clinical trials and more and they never seem to relate to me very much. Because my medical history always is different from everyone else. Its nice to have a study that could explain some of my medical stuff.
I have always been the patient who was too young for cancer, not likely to have rheumatoid, etc. But since I got all them anyway, even though I 'wasn't supposed to', I often am outside all normal parameters.
So I am not really in the study because my cancers were 26 years apart. But its nice to get some logic for my medical crap.
The more complicated explanation is:
"The authors wrote that those second primary tumors detected within 5 years of the initial primary diagnosis show “favorable histopathological findings and prognosis,” especially in TC patients subsequently diagnosed with BC, and thus close monitoring for BC may be beneficial.
“Although the increased incidence appears to be principally due to increased detection rates, the greater expression of estrogen receptor and progesterone receptor in BC in patients with co-existing TC suggests that a specific molecular pathogenesis might underlie this association,” they concluded."
So whatever a 'histopathological finding' is and 'molecular pathogenesis' might mean, there may be some kind of reasoning behind my cancers.
As a patient, I hear about studies and clinical trials and more and they never seem to relate to me very much. Because my medical history always is different from everyone else. Its nice to have a study that could explain some of my medical stuff.
I have always been the patient who was too young for cancer, not likely to have rheumatoid, etc. But since I got all them anyway, even though I 'wasn't supposed to', I often am outside all normal parameters.
Apr 9, 2018
Gene editing to cure cancer
Okay, I admit I know about the 'genome project' but have basically ignored it because I did not understand much about it. And I still don't understand much about it. But because of what was learned about genomes and genes, there have been advances in what can now be done to treat cancer and other diseases.
So there is a little girl in England who was diagnosed with ALL (Acute Lymphoblastic Leukemia) shortly after her birth that was very aggressive and recurred seven weeks after treatment ended. They ran out of treatment options and as a last ditch effort, they used a gene editing tool to save her life. Since the treatment four months ago, she is doing well and is at home with her parents.
I don't really understand it well enough to explain it all. But you can read about it here.
Its too soon to tell if this is actually the cure that was hoped for and what the long term effects will be. There is no way of telling if this could some day work for more children with cancer.
What I do find interesting is that this represents a big advancement in cancer treatment and represents the first steps in what the future could be.
So there is a little girl in England who was diagnosed with ALL (Acute Lymphoblastic Leukemia) shortly after her birth that was very aggressive and recurred seven weeks after treatment ended. They ran out of treatment options and as a last ditch effort, they used a gene editing tool to save her life. Since the treatment four months ago, she is doing well and is at home with her parents.
I don't really understand it well enough to explain it all. But you can read about it here.
Its too soon to tell if this is actually the cure that was hoped for and what the long term effects will be. There is no way of telling if this could some day work for more children with cancer.
What I do find interesting is that this represents a big advancement in cancer treatment and represents the first steps in what the future could be.
Apr 3, 2018
PTSD
PTSD has been noted in people diagnosed with cancer. But unfortunately the main group of people who are diagnosed with PTSD are the soldiers who see and experience horrible things while serving our country. I know what I went through emotionally with two cancer diagnoses. I got myself lots of support to help me cope.
I can't imagine the veterans who come back after fighting overseas who are waiting for a diagnosis, never mind treatment. We are letting them down as individuals and as a country.
What if you were diagnosed with cancer and then couldn't get an appointment to see your doctor or anyone for months after? You were stuck in limbo with a horrible diagnosis and could do nothing for your treatment. The emotional roller coaster would be unimaginable. And add to that if you were already physically ill at the time of the diagnosis and couldn't get any care?
This is how I feel we treat our veterans. They come home from serving their country and can't get the care they need once discharged. They are stuck with a bureaucratic nightmare called the Veterans Administration which treats them horribly, has too small a budget, and not enough medical providers.
Today is Veteran's Day. Take a moment or ten or more, to thank a veteran and do something to help one or many. We owe it to them.
I can't imagine the veterans who come back after fighting overseas who are waiting for a diagnosis, never mind treatment. We are letting them down as individuals and as a country.
What if you were diagnosed with cancer and then couldn't get an appointment to see your doctor or anyone for months after? You were stuck in limbo with a horrible diagnosis and could do nothing for your treatment. The emotional roller coaster would be unimaginable. And add to that if you were already physically ill at the time of the diagnosis and couldn't get any care?
This is how I feel we treat our veterans. They come home from serving their country and can't get the care they need once discharged. They are stuck with a bureaucratic nightmare called the Veterans Administration which treats them horribly, has too small a budget, and not enough medical providers.
Today is Veteran's Day. Take a moment or ten or more, to thank a veteran and do something to help one or many. We owe it to them.
Apr 2, 2018
Medical reversals
We all hate them. These are when you received a medical treatment and find out months, years, or even decades later we find out from new research it wasn't helpful or could have even been harmful. We justify it to ourselves that it is because the medical world was using the best information available to them at the time and they had no way of knowing.
I have found this out for myself numerous times with my medical history. Treatments that I received are no longer accepted practice.
Now there are a couple of doctors out there who wrote a book on how we need to change these 'flip-flops' in clinical practice. They are actually called 'medical reversals' (not the most aggravating thing you can find out about your medical treatments). Here is a quote from the article:
"...hormone replacement therapy as being sort of the seminal reversal for doctors of his generation.
The thing that really was seminal for me was the routine use of stenting for stable coronary angina. It's a very costly and invasive procedure, and it continued to be done in a very widespread fashion. The evidence for it was always unclear and then in 2007 with the publication of the COURAGE trial, a lot of the evidence was contradicted."
We all remember HRT was found that it was later shown to actually increase the patient's risk for breast cancer.
"In every case of our book, we found an example of something that was perfectly logical, it was incredibly plausible, it made perfect biological sense, but it was broadly accepted without those definitive confirmatory studies to really prove it actually does what you think it does. And in the years that followed, people over time became a little bit more skeptical of it and eventually some brave investigators said hey, you know what? Let's sort this out once and for all. Let's put this to the test.
Their point is that we need a huge overhaul of our medical system to prevent these 'reversals'. I couldn't agree more. The old way of doing things, based on traditional ideas and ways of doing things, needs some change.
"...we do advocate for a complete overhaul. A couple of chapters talk about how doctors are trained and how academics should work. A couple of chapters talk about how drug and device regulation should work. A couple of chapters talk about what our professional responsibilities are."
They advocate for a lot of change which will take a good deal of time. I think this sounds like a great first step in identifying how we are now able to say, and should say more often 'more research is needed' and 'are we really doing this the right way?' I know I get frustrated when I hear about a medical breakthrough that might help me and then hear that more research is needed. But now I understand better why this is said.
I have found this out for myself numerous times with my medical history. Treatments that I received are no longer accepted practice.
Now there are a couple of doctors out there who wrote a book on how we need to change these 'flip-flops' in clinical practice. They are actually called 'medical reversals' (not the most aggravating thing you can find out about your medical treatments). Here is a quote from the article:
"...hormone replacement therapy as being sort of the seminal reversal for doctors of his generation.
The thing that really was seminal for me was the routine use of stenting for stable coronary angina. It's a very costly and invasive procedure, and it continued to be done in a very widespread fashion. The evidence for it was always unclear and then in 2007 with the publication of the COURAGE trial, a lot of the evidence was contradicted."
We all remember HRT was found that it was later shown to actually increase the patient's risk for breast cancer.
"In every case of our book, we found an example of something that was perfectly logical, it was incredibly plausible, it made perfect biological sense, but it was broadly accepted without those definitive confirmatory studies to really prove it actually does what you think it does. And in the years that followed, people over time became a little bit more skeptical of it and eventually some brave investigators said hey, you know what? Let's sort this out once and for all. Let's put this to the test.
Their point is that we need a huge overhaul of our medical system to prevent these 'reversals'. I couldn't agree more. The old way of doing things, based on traditional ideas and ways of doing things, needs some change.
"...we do advocate for a complete overhaul. A couple of chapters talk about how doctors are trained and how academics should work. A couple of chapters talk about how drug and device regulation should work. A couple of chapters talk about what our professional responsibilities are."
They advocate for a lot of change which will take a good deal of time. I think this sounds like a great first step in identifying how we are now able to say, and should say more often 'more research is needed' and 'are we really doing this the right way?' I know I get frustrated when I hear about a medical breakthrough that might help me and then hear that more research is needed. But now I understand better why this is said.