I've been reading this morning, I'm sorry. Over at Breast Cancer, But Doctor I Hate Pink, Ann blogged about being healthy enough for more chemo as she deals with progression of her metastatic breast cancer (and she is giving away a fitness watch). I started thinking (which can be a very bad thing) about the general yuckiness of chemotherapy and cancer treatment. I hated it. I don't know anyone who doesn't hate it. Its not fun. It makes you feel like crap, unable to eat, while 'curing' you.
Then I read about a nurse with metastatic breast cancer who opted not for cancer treatment but for palliative care. The more I read, the more I like the idea. If there is no cure, why are you spending so much time on trying to cure yourself? This route really appeals to me. She found a doctor who did not push traditional cancer treatment but went for palliative care. After five years since her diagnosis, this nurse is still feeling pretty good. And its much less expensive.
So if you had an incurable ailment where the only options were pretty nasty - radiation, chemo, surgery - and would weaken your body, why opt for trying to cure instead of making yourself feel as good as possible? Why go bankrupt when there isn't a cure? The bankruptcy isn't just your finances but your emotions and body too.
Apr 30, 2018
More 'wonderful' news for me
I have to stop reading the news, damn it. I have tried to wean myself off the news, particularly medical news, Then I stop feeling educated and start feeling like a stupid patient. And if I stopped reading all news I could skip all elections and their related stupidity and inanity. But I haven't been able to stop, so I keep reading medical news and sometimes I find all sorts of stuff I may or may not want to know.
So today I have all sorts of 'great' news' I am not sure I wanted to know, well some I do like and some I don't.
First let's start off with the news that in view of huge increase in thyroid cancer diagnoses, new recommendations are that small papillary thyroid cancers be left alone and not treated.
"An increase in thyroid cancer diagnoses has led to unnecessary biopsies and surgeries. New guidelines from the American Thyroid Association endorse close observation as a possible treatment option for many small papillary thyroid tumors rather than surgery. The guidelines also caution against biopsies for many small tumors and say that when surgery is required, partial — not total — removal of the thyroid should be considered."
After a total thyroidectomy, the usual treatment for any thyroid cancer, the patient is left without a thyroid and requires lifetime follow up and medication. Thyroid cancer is slow growing and some unlikely to ever cause problems for the patient. This isn't that bad and it does show more progress in thyroid cancer treatment - instead of the usual 'one size fits all' approach.
Second, patients who are diagnosed with thyroid cancer and breast cancer are tested for Cowden's syndrome, a genetic trait which is characterized by the diagnosis of several cancers.
"Approximately 1 in 200,000 people are affected by Cowden disease and those who have the disorder have about an 85% lifetime risk for breast cancer and a 35% lifetime risk for epithelial thyroid cancer. Cowden disease is also associated with elevated risks for uterine, kidney and colon cancers."
I was tested for Cowdens and told I did not have it. And was told that I could have another mutation for which a gene had not yet been discovered. Now "Researchers have discovered a new gene, SEC23B, associated with Cowden disease, an inherited disorder that increases risk for thyroid, breast, endometrial and other cancers." This is real progress in that more than one gene mutation can cause similar problems.
So maybe there is a gene for me which would explain my unhealthy body. A note about gene mutations is that they do not have to be inherited, they can mutate just for you.
I saved the best for last. Rheumatoid arthritis has been shown to shorten your lifespan. Yippee yahoo. I needed to know that.
"Rheumatoid arthritis may raise the risk of early death by as much as 40 percent, with heart and respiratory problems the most common contributors to a shortened life span, a new study suggests."
And did you know that some RA medications can cause respiratory problems? Since my diagnosis I am back to yearly chest x-rays.
See I really need to stop reading medical news. Its bad for my mental state, whatver that may be.
So today I have all sorts of 'great' news' I am not sure I wanted to know, well some I do like and some I don't.
First let's start off with the news that in view of huge increase in thyroid cancer diagnoses, new recommendations are that small papillary thyroid cancers be left alone and not treated.
"An increase in thyroid cancer diagnoses has led to unnecessary biopsies and surgeries. New guidelines from the American Thyroid Association endorse close observation as a possible treatment option for many small papillary thyroid tumors rather than surgery. The guidelines also caution against biopsies for many small tumors and say that when surgery is required, partial — not total — removal of the thyroid should be considered."
After a total thyroidectomy, the usual treatment for any thyroid cancer, the patient is left without a thyroid and requires lifetime follow up and medication. Thyroid cancer is slow growing and some unlikely to ever cause problems for the patient. This isn't that bad and it does show more progress in thyroid cancer treatment - instead of the usual 'one size fits all' approach.
Second, patients who are diagnosed with thyroid cancer and breast cancer are tested for Cowden's syndrome, a genetic trait which is characterized by the diagnosis of several cancers.
"Approximately 1 in 200,000 people are affected by Cowden disease and those who have the disorder have about an 85% lifetime risk for breast cancer and a 35% lifetime risk for epithelial thyroid cancer. Cowden disease is also associated with elevated risks for uterine, kidney and colon cancers."
I was tested for Cowdens and told I did not have it. And was told that I could have another mutation for which a gene had not yet been discovered. Now "Researchers have discovered a new gene, SEC23B, associated with Cowden disease, an inherited disorder that increases risk for thyroid, breast, endometrial and other cancers." This is real progress in that more than one gene mutation can cause similar problems.
So maybe there is a gene for me which would explain my unhealthy body. A note about gene mutations is that they do not have to be inherited, they can mutate just for you.
I saved the best for last. Rheumatoid arthritis has been shown to shorten your lifespan. Yippee yahoo. I needed to know that.
"Rheumatoid arthritis may raise the risk of early death by as much as 40 percent, with heart and respiratory problems the most common contributors to a shortened life span, a new study suggests."
And did you know that some RA medications can cause respiratory problems? Since my diagnosis I am back to yearly chest x-rays.
See I really need to stop reading medical news. Its bad for my mental state, whatver that may be.
Apr 23, 2018
Important but scary clinical trials
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.
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 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.