When you are diagnosed with cancer, you are faced with the World of Oncology. Inside that world lies the answers to your questions and how to keep you alive. As you go through diagnosis and treatment, you get to educate yourself on your illness and what's involved in getting through it.
Oncologists have to go to medical school to learn all this crap. Us patients get the express pass and learn it much faster and more intimately. Doctor's say 'may cause nausea and hair loss'. We know it means we will watch our hair fall out as we shop for a wig and try to keep something in our stomachs. We learn what the truth really is and how to translate their words. A year into treatment, we are pretty educated in 'oncology' and can help others.
My father was diagnosed with cancer in 2013, I got to be his entry into the Great Oncology Wall. He was diagnosed with Waldenstrom's lymphoma, a very indolent type, which is only treated when symptomatic. He was symptomatic so he started chemotherapy which ended up destroying his immune system.
Through all of his treatment my father used me as his source of information. Where to find good information on his disease and its treatment? (and, no, Wikipedia is not a good source of medical information.) At every proposed test or medical misadventure, he would call me and ask me if I had had it and what was it like.
When his veins were destroyed through chemo, he had to get a port.When he got his port, his next question was 'when do I get it out?'. The doctors wouldn't say anything. Finally, I said 'after you don't need it for six months, you can ask your doctor about getting it out'. He pondered that and was fine.
In May 2017 he was diagnosed with pancreatic cancer. He asked me to come to all his appointments so I could 'translate'. I would bring my list of questions that I thought we needed answers for. He didn't always agree with me but I still go the answers. I thought we should ask the oncologist 'what are the chances that this chemo protocol will work?' when he insisted there must be more chemo options and wanted to continue to try treatment. He didn't like negative answers to that.
He also cracked jokes all the time with the nurses and doctors. He criticized my wheelchair driving abilities but I complained he was the one who taught me to drive. He also would introduce me to his doctors as his daughter with more ailments.
Last fall he stopped asking me to go to his oncology appointments because I agreed more with the oncologist than with him about continuing treatment. But after three CT scans showing continued tumor growth (he would call it 'they are going forth and multiplying'), he finally asked me to take him to his fourth CT scan and following oncology appointment again. He was starting to feel weak and confessed that because of the number of meds he had to take as he was allergic to the CT contrast he wasn't supposed to drive himself. (He had selective hearing for medical advice he didn't like.)
Before his appointment, I had a discussion with him about what the oncologist might say about what the CT scan might find. We talked about quality of life and maybe it might be better without the dragging down of chemo might be better. Because I asked my pushy questions, and agreed with the oncologist that there really weren't more options for him, he agreed to stop chemo. It was a whirlwind and I think he was pleased. It meant less doctor appointments which were beginning to tire him.
But it also meant that we moved on to his next stage in his cancer journey, when the hospice nurses showed up and could answer many more questions honestly than I was able. But he kept his sense of humor to the end.
For the past year I have not written about my father's cancer. It wasn't my story to tell. But now I am able to share and write through some of my stress. I will continue to write to help me cope better.
Showing posts with label cancer treatment. Show all posts
Showing posts with label cancer treatment. Show all posts
Saturday, March 24, 2018
Sunday, January 7, 2018
Cancer Cure?
No there is not a cancer cure. We need to keep remembering that. We are told by our doctors that there is no evidence of disease or some thing along those lines - which just boils down to "we are not capable of finding it yet". If your doctor tells you that you are cured, please find a new one asap.
In this day and age should there be a new definition of cured of cancer? I'm not sure. I have friends who tell me they are cured. I try to figure out what they are talking about. Seriously, where did this cured business come from? I want to question their position on this but in some ways do not want to know.
"Upon completion of treatment, one of only two scenarios exist. Either all cancer cells are annihilated by surgery, chemo or radiation never to return or some of the little cells escaped and plan to mount a future counteroffensive. The trouble is that technical limitations thwart our ability to measure small volumes of cancer cells. Blood work, imaging like PET scans and CT scans or physical exams are simply too crude at present to predict, always and accurately, whether cancer will recur. And so, like Schrodinger’s cat experiment, a quiet cat placed in an opaque box is assumed to be both alive and dead at the same time. You just don’t know. Likewise, cancer cells after treatment are assumed dead, but we go on testing to discover any signs that the disease may have returned. CT scans. Blood work. Physical exams. Ad nauseum. Only time will tell."
So as good patients we go to our doctors for years and do what they say. But we know we are not cured.
"A couple caveats here. First, we generally observe patients for five years. After that point, for most diseases, the curves are flat, meaning that we anticipate few further cancer deaths. Thus, the doctor’s five-year survival is equivalent to a layperson’s “cure.” So when docs uncomfortably utter the word “cure," it’s usually after five years from diagnosis. At that time, we generally feel confident that the disease is gone. Secondly, these are dry boring statistical models. So we know where the group will plot out. Each individual patient, however, that’s another story.
Early on, we don’t know, with any certainty, who will be cured. That’s where the term “remission” comes in: when there’s no sign of any cancer, but it is still too early to tell. When the clock strikes 12 on the fifth anniversary of your diagnosis, voila, “remission” magically transforms to “cure.” Sort of like a reverse Cinderella moment.
And thirdly, and perhaps most importantly in a time of rapidly evolving treatments, all published data is at least five years out of date because you have to wait that that long to collect the data following the treatment performed. Treatment options change a lot during five years."
"Finally, outliers exist. Unfortunately, patients with early-stage disease can recur and die and those with late-stage disease can outlive their predicted expiration date."
In this day and age should there be a new definition of cured of cancer? I'm not sure. I have friends who tell me they are cured. I try to figure out what they are talking about. Seriously, where did this cured business come from? I want to question their position on this but in some ways do not want to know.
"Upon completion of treatment, one of only two scenarios exist. Either all cancer cells are annihilated by surgery, chemo or radiation never to return or some of the little cells escaped and plan to mount a future counteroffensive. The trouble is that technical limitations thwart our ability to measure small volumes of cancer cells. Blood work, imaging like PET scans and CT scans or physical exams are simply too crude at present to predict, always and accurately, whether cancer will recur. And so, like Schrodinger’s cat experiment, a quiet cat placed in an opaque box is assumed to be both alive and dead at the same time. You just don’t know. Likewise, cancer cells after treatment are assumed dead, but we go on testing to discover any signs that the disease may have returned. CT scans. Blood work. Physical exams. Ad nauseum. Only time will tell."
So as good patients we go to our doctors for years and do what they say. But we know we are not cured.
"A couple caveats here. First, we generally observe patients for five years. After that point, for most diseases, the curves are flat, meaning that we anticipate few further cancer deaths. Thus, the doctor’s five-year survival is equivalent to a layperson’s “cure.” So when docs uncomfortably utter the word “cure," it’s usually after five years from diagnosis. At that time, we generally feel confident that the disease is gone. Secondly, these are dry boring statistical models. So we know where the group will plot out. Each individual patient, however, that’s another story.
Early on, we don’t know, with any certainty, who will be cured. That’s where the term “remission” comes in: when there’s no sign of any cancer, but it is still too early to tell. When the clock strikes 12 on the fifth anniversary of your diagnosis, voila, “remission” magically transforms to “cure.” Sort of like a reverse Cinderella moment.
And thirdly, and perhaps most importantly in a time of rapidly evolving treatments, all published data is at least five years out of date because you have to wait that that long to collect the data following the treatment performed. Treatment options change a lot during five years."
Five years out are we cured? No we are not. So we stop going to our doctors and promise to come back if anything changes.
And even though we know all of the above, there are still a few more caveats.
"Finally, outliers exist. Unfortunately, patients with early-stage disease can recur and die and those with late-stage disease can outlive their predicted expiration date."
So what do we do? We are supposed to live life as if we are cured. We are supposed to like our new normal. But we are not cured and at this point have no chance of being cured. We can just be happy with remission free survival and no evidence of disease. But not a cure.
Monday, December 25, 2017
Favorites During Chemo
When you are starting chemo, you are warned not to eat your favorite foods during chemo because if chemo makes them taste bad you will never be able to enjoy them again. It's also true of activities that you are able to enjoy doing during chemo.
When I was in chemo, I spent a lot of quality time watching bad tv with the cat sitting next to me. The cat would sit next to me all the time. Watching tv was okay because I could barely focus and could watch the same movies over and over again. They were peripherals.
I still have not eaten one shrimp or scallions. If I smelled scallions during chemo I would have to leave the room because of the smell. I used to love shrimp and don't really remember eating them much during chemo, but I can't stand them these days.
During chemo, I started knitting and crocheting. This has since lead to weaving and an unhealthy stash of yarn. I don't crochet as muss I used to but I definitely knit and weave. I enjoy them. I find it relaxing. I also enjoy finding colors and texture that work together, or figuring out a new pattern.
But then when knitting or weaving, if I start to think about how I got involved in them again it makes me sad and think about chemo again, and cancer and go back down that cancer road again. Which really sucks in some ways.
But I try to make myself forget all about it and push it out of my brain so I can enjoy myself doing the things I like. Cancer can really suck!
When I was in chemo, I spent a lot of quality time watching bad tv with the cat sitting next to me. The cat would sit next to me all the time. Watching tv was okay because I could barely focus and could watch the same movies over and over again. They were peripherals.
I still have not eaten one shrimp or scallions. If I smelled scallions during chemo I would have to leave the room because of the smell. I used to love shrimp and don't really remember eating them much during chemo, but I can't stand them these days.
During chemo, I started knitting and crocheting. This has since lead to weaving and an unhealthy stash of yarn. I don't crochet as muss I used to but I definitely knit and weave. I enjoy them. I find it relaxing. I also enjoy finding colors and texture that work together, or figuring out a new pattern.
But then when knitting or weaving, if I start to think about how I got involved in them again it makes me sad and think about chemo again, and cancer and go back down that cancer road again. Which really sucks in some ways.
But I try to make myself forget all about it and push it out of my brain so I can enjoy myself doing the things I like. Cancer can really suck!
Friday, December 22, 2017
The Young Adult Ignored Cancer Patients
This is one of my pet peeves. Children with cancer have their mature, sane parents advocating for them. Adults with cancer can advocate for themselves.
The young adults - 15 to 30s - often don't find the same support or resources. First they are still trying to figure out who they are and what they will do with their life. Second, they are learning to be independent and should be focusing on their education and careers, not going to chemotherapy. There is hope now that online resources can help fill the gaps for the patients and maybe for the doctors as well.
"In addition, they will probably go on to live long lives and the harsh realities of their cancer treatment can leave them fundamentally changed forever. Issues such as infertility, cardiac damage, or even damaged blood vessels from infusions can further complicate their lives forever.
Teen and young adult cancer patients may live a long time, so it's "important to pay more attention to the quality of their survival -- and not just to their survival," Grundy says.
In other words, long-term side effects from their treatments, such as infertility, need to be avoided if possible or, when unavoidable, must be managed. A weaker heart caused by chemotherapy is not the same for an elderly adult who has only a decade left to live as it might be for someone with decades to go.
According to Grundy, the inspiration for singling out this demographic for special care can be found in a graph of US data from the 1980s and 1990s, showing improvement in survival among different age groups."
All age groups show improvement in cancer survival rates between 1975 and 1997 except young adults - where the rates were lesser or even decreased, for 30-34 year olds.
""In children and older adults, there had been substantial improvement in survival, but where the least amount of improvement had occurred was in this gap between ages 15 and 39," said Grundy, who is also an expert in pediatric, adolescent and young adult oncology with the Canadian Partnership Against Cancer.
Why worse improvement in survival for those patients?
"First of all, they get different cancers [usually] than either older or younger patients," he said. And even when teen and young adult patients get more familiar cancers, like breast cancer, it's usually in a more aggressive form.
There's also "a knowledge gap," Grundy said. "Most clinical trials are either in children, or they're in adults."
Clinical studies, which test medications for safety, dosage and effectiveness, have shown that children can tolerate more intense doses of chemotherapy than adults, he explained. Since people older than 40 are 98% of all adult cancer patients, they make up the overwhelming majority of adult clinical trials.
This means oncologists may be unsure what dose to give a teen or young adult, Grundy says."
In the meantime, it is important for patients to find the support to help them get through cancer. I learned this at my first diagnosis at age 19, when there was no internet or other cancer patients to talk to. By my second diagnosis at 45 I dove in social media to find other cancer people like me.
My points here are for young adult cancer patients:
The young adults - 15 to 30s - often don't find the same support or resources. First they are still trying to figure out who they are and what they will do with their life. Second, they are learning to be independent and should be focusing on their education and careers, not going to chemotherapy. There is hope now that online resources can help fill the gaps for the patients and maybe for the doctors as well.
"In addition, they will probably go on to live long lives and the harsh realities of their cancer treatment can leave them fundamentally changed forever. Issues such as infertility, cardiac damage, or even damaged blood vessels from infusions can further complicate their lives forever.
Teen and young adult cancer patients may live a long time, so it's "important to pay more attention to the quality of their survival -- and not just to their survival," Grundy says.
In other words, long-term side effects from their treatments, such as infertility, need to be avoided if possible or, when unavoidable, must be managed. A weaker heart caused by chemotherapy is not the same for an elderly adult who has only a decade left to live as it might be for someone with decades to go.
According to Grundy, the inspiration for singling out this demographic for special care can be found in a graph of US data from the 1980s and 1990s, showing improvement in survival among different age groups."
All age groups show improvement in cancer survival rates between 1975 and 1997 except young adults - where the rates were lesser or even decreased, for 30-34 year olds.
""In children and older adults, there had been substantial improvement in survival, but where the least amount of improvement had occurred was in this gap between ages 15 and 39," said Grundy, who is also an expert in pediatric, adolescent and young adult oncology with the Canadian Partnership Against Cancer.
Why worse improvement in survival for those patients?
"First of all, they get different cancers [usually] than either older or younger patients," he said. And even when teen and young adult patients get more familiar cancers, like breast cancer, it's usually in a more aggressive form.
There's also "a knowledge gap," Grundy said. "Most clinical trials are either in children, or they're in adults."
Clinical studies, which test medications for safety, dosage and effectiveness, have shown that children can tolerate more intense doses of chemotherapy than adults, he explained. Since people older than 40 are 98% of all adult cancer patients, they make up the overwhelming majority of adult clinical trials.
This means oncologists may be unsure what dose to give a teen or young adult, Grundy says."
In the meantime, it is important for patients to find the support to help them get through cancer. I learned this at my first diagnosis at age 19, when there was no internet or other cancer patients to talk to. By my second diagnosis at 45 I dove in social media to find other cancer people like me.
My points here are for young adult cancer patients:
- You are not alone. Go to social media and find other people who are coping. In addition to
- Your doctors may not be used to cancer patients your age so speak up, ask questions, ask about side effects.
- Draft a friend, spouse, family member to be your cancer buddy to take with you to doctor appointments to help you digest what you learn at each appointment.
- Take things one step at a time. Educate yourself in stages. Don't worry about radiation until you get through chemotherapy. Don't worry about chemotherapy until get through surgery.
And if you have cancer and need a shoulder to lean on, try me. Leave me a message with contact info or find me on Facebook.
In addition to all the social media resources in the article, my favorite one is Stupidcancer.org.
Thursday, December 21, 2017
San Antonio Breast Cancer Symposium
I have found there are two key conferences to follow to keep up with the latest cancer news annually. First of all, each June there is the annual ASCO (American Society of Clinical Oncologists) conference held around the country. As oncologists come together and the outcome produces a slew of new research news for all types of cancer translated into normal English.
Second, is the annual San Antonio Breast Cancer Symposium held in early/mid-December each year in San Antonio TX. That was just held and so much news was just released. There was so much new news that you should go read it all yourself if you want to stay up on the latest.
As with any professional conference, this is when a group of professionals who are scattered across the country, and the rest of the world, get together and find out about new research, get ideas for more research, and compare notes. The benefit to us cancer people is huuuuggggge.
So go read.
Second, is the annual San Antonio Breast Cancer Symposium held in early/mid-December each year in San Antonio TX. That was just held and so much news was just released. There was so much new news that you should go read it all yourself if you want to stay up on the latest.
As with any professional conference, this is when a group of professionals who are scattered across the country, and the rest of the world, get together and find out about new research, get ideas for more research, and compare notes. The benefit to us cancer people is huuuuggggge.
So go read.
Tuesday, October 10, 2017
The Road Through Chemo
Everyone's road through chemotherapy is a bit unique. We all face our demons of nausea, fatigue, hair loss, and emotional ups and downs differently. We struggle through. And then we somehow make it
I am always interested in hearing about other's chemo misadventures. Stephen Blyth wrote about his chemo story in the Boston Globe. He begins with the advice from the National Cancer Institute:
"The National Cancer Institute tries to be helpful: “At some point during chemotherapy, you may feel: Anxious; Depressed; Afraid; Angry; Frustrated; Helpless; Lonely. It is normal to have a wide range of feelings while going through chemotherapy. After all, living with cancer and getting treatment can be stressful.”
These words made me want to yell. Do they not understand? It is not remotely normal to see only bleakness, to be continuously angst-ridden, and to lack the spirit even to say good night to my precious daughters.
“Many people find that light exercise, such as walking, riding a bike and doing yoga, helps them feel better.” This advice enraged me: The very idea of exercise was laughable. Each night I would resolve to walk round the block tomorrow. But in the morning I would lie unable to rise, unable to sleep, taunted by piles of unread, unreadable books by my bed. 2.30 p.m. 5 p.m. A shuffle downstairs for a bowl of cereal, the act of eating an unexpected respite, then back to bed. My wife was unwavering in the face of such misery: You will feel better, it will all be OK. I knew she believed this, but I did not."
I am always interested in hearing about other's chemo misadventures. Stephen Blyth wrote about his chemo story in the Boston Globe. He begins with the advice from the National Cancer Institute:
"The National Cancer Institute tries to be helpful: “At some point during chemotherapy, you may feel: Anxious; Depressed; Afraid; Angry; Frustrated; Helpless; Lonely. It is normal to have a wide range of feelings while going through chemotherapy. After all, living with cancer and getting treatment can be stressful.”
These words made me want to yell. Do they not understand? It is not remotely normal to see only bleakness, to be continuously angst-ridden, and to lack the spirit even to say good night to my precious daughters.
“Many people find that light exercise, such as walking, riding a bike and doing yoga, helps them feel better.” This advice enraged me: The very idea of exercise was laughable. Each night I would resolve to walk round the block tomorrow. But in the morning I would lie unable to rise, unable to sleep, taunted by piles of unread, unreadable books by my bed. 2.30 p.m. 5 p.m. A shuffle downstairs for a bowl of cereal, the act of eating an unexpected respite, then back to bed. My wife was unwavering in the face of such misery: You will feel better, it will all be OK. I knew she believed this, but I did not."
He clearly starts faced with the fact that much of the advice for cancer patients comes from people who do not have a clue. Clearly the advice from NCI is in that category. This is one of the things that all cancer patients learn - people who haven't walked the walk, are unable to talk to the talk. They do not have a clue.
But as you read through his story you see how he learns to get through it. He gets a good social worker who gives him advice and supports him as he goes through his infusion. Her advice is one task a week - send one email. That makes things manageable. I can relate. I could do one thing a week while in chemo.
He learned that it is normal to deal with the emotional side of chemo. He meets a new friend along the way who told him when he went through chemo for lymphoma, he struggled as well emotionally. "“I found the nonphysical effects of chemo the hardest. Psychologically I fell apart.” I felt another flash of self-compassion. So it’s OK to be like this. I had been given a lifeline."
Finally he makes it through. His brain starts to clear, he is returning to life. I cannot say returning to normal because you can't. I just really like his descriptions of his chemo adventure. He put into words what I could not - the ups and downs of cancer.
Thursday, September 21, 2017
Complications After Cancer Linger
My least favorite phrase is 'with your medical history we need to be sure'. I have been hearing it since my first cancer diagnosis. Even though my two cancers, thyroid and breast, are not what are considered the most horrible kinds, they both could recur and kill me anytime they want.
What it has meant over the year is that I have always been sent for more tests than anyone else. I need more blood tests and scans than anyone else. Now as I have developed more ailment such as RA, its harder to treat. One of the costs of my cancer treatment is osteopenia - in a family full of women with osteoporosis, all of a sudden I am much higher risk for it. And the list goes on.
All this makes me cranky and causes many more doctor appointments. My appointment on Tuesday was number 51 for the year. How many of them were for ailments or for side effects or post treatment ailments? I do not want to count. I just hate going to doctors at this point.
After cancer, your life isn't the same. You are going to have more complication related follow ups because of it. You do not get to walk away from cancer. It follows you everywhere, forever.
What it has meant over the year is that I have always been sent for more tests than anyone else. I need more blood tests and scans than anyone else. Now as I have developed more ailment such as RA, its harder to treat. One of the costs of my cancer treatment is osteopenia - in a family full of women with osteoporosis, all of a sudden I am much higher risk for it. And the list goes on.
All this makes me cranky and causes many more doctor appointments. My appointment on Tuesday was number 51 for the year. How many of them were for ailments or for side effects or post treatment ailments? I do not want to count. I just hate going to doctors at this point.
After cancer, your life isn't the same. You are going to have more complication related follow ups because of it. You do not get to walk away from cancer. It follows you everywhere, forever.
Friday, August 18, 2017
What About Our Brains?
So cancer didn't kill us. Our cancer treatment didn't kill us. But our brains no longer function as well as they did before.
At my knitting group at a cancer support center we routinely forget each other's names.... and claim chemo brain.
I think there are several causes of chemo brain. The biggest and most important one is the so called 'cognitive dysfunction' as a result of the lovely chemicals they pour into us during treatment. There is a lot of information on this as well as the awareness (finally) of the need to do something about this.
I strongly believe that another cause of chemobrain is the stress and ensuing PTSD that causes us to have lapses in our memories as well.
This raises the issue that while a cancer diagnosis and treatment is harsh on our bodies and on our minds, there needs to be a concerted effort (and more research) on how to improve post treatment care and how to prevent more issues for patients.
From a patient's point of view, a cancer diagnosis should not be a life changing event. I can be a life affecting event but it should not alter you forever - either emotionally or physically.
There are many ailments out there without cures but then why is 'cancer' the only word which is so scary? We need to take the fear out cancer and the injuries out of its treatment. This would help our brains a great deal.
At my knitting group at a cancer support center we routinely forget each other's names.... and claim chemo brain.
I think there are several causes of chemo brain. The biggest and most important one is the so called 'cognitive dysfunction' as a result of the lovely chemicals they pour into us during treatment. There is a lot of information on this as well as the awareness (finally) of the need to do something about this.
I strongly believe that another cause of chemobrain is the stress and ensuing PTSD that causes us to have lapses in our memories as well.
This raises the issue that while a cancer diagnosis and treatment is harsh on our bodies and on our minds, there needs to be a concerted effort (and more research) on how to improve post treatment care and how to prevent more issues for patients.
From a patient's point of view, a cancer diagnosis should not be a life changing event. I can be a life affecting event but it should not alter you forever - either emotionally or physically.
There are many ailments out there without cures but then why is 'cancer' the only word which is so scary? We need to take the fear out cancer and the injuries out of its treatment. This would help our brains a great deal.
Monday, July 3, 2017
The Truth, The Whole Truth, Nothing But The Truth
The truth about cancer treatment is very complicated. The treatment options are very deep, strong, and harsh even. They are just drastic. Because they are so drastic, they can very well cause a lot of post treatment effects - i.e., side effects. The information on side effects is not a list, but a mountain.
Yes we want the truth. Oncologists I think waffle on how much information to provide to their patients about their treatment options when faced with their treatment options. I can tell you its a lot of information to take in and absorb - and probably not everyone is ready for that. And our doctors are unsure how much information each patient can handle at that time.
Our oncologists can give us all sorts of great information - recurrence rates, risk reduction (what the heck is that?), side effects (only a few), and how you are going to be a better and newer more normal person after all. and then, after treatment, you start to feel crappy. You are not the same. You are tired. You might be depressed even. But why? Because you didn't get the whole truth before.
At each oncologist appointment, we leave the room with a brain overflowing with information and we try to grasp everything that we are told. We are probably clutching a few brochures covering our treatment and/or diagnosis.
Did we remember everything? Probably not. Because it was too much information all at once. Even if we bring a helper to make sure all our questions are asked and their answers are written down, we still may not have gotten it all.
But as patients, we need the truth, the whole truth, and nothing but the truth.
"Cancer treatment can be life-saving. It can also be life-changing—and not in that wonderful, fluffy, “positive thinking” way that extols the virtues of enduring hardship. Newly diagnosed patients need to be given the facts, fairly presented, so that they are not blindsided if, instead of getting better and better after their treatments, they slowly get worse and worse. This can be considered a fair trade-off for the chance to live longer…but, like the chance of getting lymphedema or a secondary cancer, it needs to be a risk you take with your eyes wide open."
Just tell us like it is please.
Yes we want the truth. Oncologists I think waffle on how much information to provide to their patients about their treatment options when faced with their treatment options. I can tell you its a lot of information to take in and absorb - and probably not everyone is ready for that. And our doctors are unsure how much information each patient can handle at that time.
Our oncologists can give us all sorts of great information - recurrence rates, risk reduction (what the heck is that?), side effects (only a few), and how you are going to be a better and newer more normal person after all. and then, after treatment, you start to feel crappy. You are not the same. You are tired. You might be depressed even. But why? Because you didn't get the whole truth before.
At each oncologist appointment, we leave the room with a brain overflowing with information and we try to grasp everything that we are told. We are probably clutching a few brochures covering our treatment and/or diagnosis.
Did we remember everything? Probably not. Because it was too much information all at once. Even if we bring a helper to make sure all our questions are asked and their answers are written down, we still may not have gotten it all.
But as patients, we need the truth, the whole truth, and nothing but the truth.
"Cancer treatment can be life-saving. It can also be life-changing—and not in that wonderful, fluffy, “positive thinking” way that extols the virtues of enduring hardship. Newly diagnosed patients need to be given the facts, fairly presented, so that they are not blindsided if, instead of getting better and better after their treatments, they slowly get worse and worse. This can be considered a fair trade-off for the chance to live longer…but, like the chance of getting lymphedema or a secondary cancer, it needs to be a risk you take with your eyes wide open."
Just tell us like it is please.
Wednesday, June 7, 2017
Decision Making
Back in junior high I think, we had a class where we were instructed for the next class to make a list of all the decisions we had made in that 24 hour period. I thought I did it right and came into class the next day with a list of three decisions I had made. I quickly learned how wrong I was.
Another student stood up with his list and it was long - it listed everything from deciding when to leave the classroom the day before, which way to turn in the hallway, whether to got his locker or not, etc.
How wrong was I? Phenomenally. And it was a big learning lesson for me as well.
We make decisions constantly. What to eat for breakfast, when to get out of bed, what to wear, when to shower, what to eat. We make most decisions fairly easily because they are habits or because they are fairly simple. Do I want eggs for breakfast or a yogurt and fruit?
But when we come to medical decisions, they can get very complicated. The first ones are usually easy - does that hurt enough and for long enough that I should call my doctor? Which doctor to call? Then they can quickly get complicated. Surgery? Post treatment options?
For cancer, you can throw in all those fun decisions - chemotherapy, radiation, immunotherapy, and more. Part of the decision making process can include not just whether to try some of the treatment options but how difficult will they be to survive them. Also what about your quality of life during treatment?
We constantly make decisions. Some are just harder than others. We just need to decide what is most important to us at that time and then make our decision.
Another student stood up with his list and it was long - it listed everything from deciding when to leave the classroom the day before, which way to turn in the hallway, whether to got his locker or not, etc.
How wrong was I? Phenomenally. And it was a big learning lesson for me as well.
We make decisions constantly. What to eat for breakfast, when to get out of bed, what to wear, when to shower, what to eat. We make most decisions fairly easily because they are habits or because they are fairly simple. Do I want eggs for breakfast or a yogurt and fruit?
But when we come to medical decisions, they can get very complicated. The first ones are usually easy - does that hurt enough and for long enough that I should call my doctor? Which doctor to call? Then they can quickly get complicated. Surgery? Post treatment options?
For cancer, you can throw in all those fun decisions - chemotherapy, radiation, immunotherapy, and more. Part of the decision making process can include not just whether to try some of the treatment options but how difficult will they be to survive them. Also what about your quality of life during treatment?
We constantly make decisions. Some are just harder than others. We just need to decide what is most important to us at that time and then make our decision.
Sunday, June 4, 2017
More on Olivia
I am beginning to think I am her fan or something as this is my third post about her.... but once again I am blogging about Olivia Newton John and her cancer recurrence. I have another problem with her and her recurrence. This is it in her statement about what her plans are for recurrence:
"I decided on my direction of therapies after consultation with my doctors and natural therapists..."
Her plan is to focus on radiation and natural therapies.... I don't have a problem with natural therapies but I do have a problem with their use without additional medical therapies.
I used to work with a woman who was diagnosed with breast cancer and after her surgeries she decided to use graviola as her treatment, skipping other treatment options. She had a recurrence a couple of years later.....
Honestly after what I have been through I have a healthy respect for Western medicine, Asian medicine, and other modalities such as yoga, acupuncture, reiki, and more. I would not just natural treatments because I think they need to be combined with other treatments. If natural remedies solved everything, other medicines would never have needed to be developed.
I also realize its not my body in question but I can still disagree with her treatment plans.
"I decided on my direction of therapies after consultation with my doctors and natural therapists..."
Her plan is to focus on radiation and natural therapies.... I don't have a problem with natural therapies but I do have a problem with their use without additional medical therapies.
I used to work with a woman who was diagnosed with breast cancer and after her surgeries she decided to use graviola as her treatment, skipping other treatment options. She had a recurrence a couple of years later.....
Honestly after what I have been through I have a healthy respect for Western medicine, Asian medicine, and other modalities such as yoga, acupuncture, reiki, and more. I would not just natural treatments because I think they need to be combined with other treatments. If natural remedies solved everything, other medicines would never have needed to be developed.
I also realize its not my body in question but I can still disagree with her treatment plans.
Saturday, June 3, 2017
Going Back To That Recurrence Thing
With cancer, this is what we all want to know. Will it come back?
The other day, I blogged about cancer recurrences and being on the hook. Of course with Olivia Newton John's twenty five year later cancer recurrence, the media is now full of cancer recurrence information.
Before I start, I need to state that anyone who says they have cancer and then say they are cured after treatment are idiots. You are not cured after a cancer diagnosis, you only can exhibit 'no evidence of disease' or NED. While there have been many cancer treatment advances in recent years, there is still no cure. Why do you think you need to keep going back to your surgeon or oncologist? They want to keep monitoring you....
So anyway, the media is now giving us lots more details on cancer treatments and recurrences. This will continue until the next big news flash that will displace it. There is a nice long article on cancer and recurrence on CBS now where they interview Dr Deanna Attai of UCLA and Dr Andrews at Hofstra Norwell School of Medicine.
""I would say breast cancer – a lot of these cancers – have become more of a chronic illness than a terminal illness. A patient may do well with bone metastasis. They may need ongoing treatment for the next five to 10 years, but it doesn't mean it's a terminal sentence. With radiation, thankfully, our techniques and technologies have improved. It all depends on how big the area is and the critical structures that have been affected," said Andrews....
Attai said a recurrence diagnosis can be very emotional for a woman.
"It's different for every patient so I do not want to generalize, but some common themes I see are that many women never truly get over having breast cancer. It's always something that's with them. Many women are changed by their experience, but the further out you get, the breast cancer takes more of a back seat. And we tell them to go back and live your life. A recurrence often brings back all the emotions and then some from when they were first diagnosed. And especially if it comes back somewhere else in the body," said Attai.
She said the first question is always, "How long do I have to live?"
Once the cancer has shown that it's gotten outside of the breast to other parts of body, she said there's the potential of dying from the disease, but she tells patients that tests can help identify what's going on and they can discuss treatment options and their effectiveness.
"We stress that we do have a lot of newer agents and many women are certainly living longer. But there's no question that women living with metastatic disease, at least right now, we can't say we can cure patients. We're much better at keeping the disease under control, gaining a remission now, but at this time, metastatic breast cancer is considered incurable. I think we will get to the point with newer, targeted agents, to talk about long term remission," Attai said."
The other day, I blogged about cancer recurrences and being on the hook. Of course with Olivia Newton John's twenty five year later cancer recurrence, the media is now full of cancer recurrence information.
Before I start, I need to state that anyone who says they have cancer and then say they are cured after treatment are idiots. You are not cured after a cancer diagnosis, you only can exhibit 'no evidence of disease' or NED. While there have been many cancer treatment advances in recent years, there is still no cure. Why do you think you need to keep going back to your surgeon or oncologist? They want to keep monitoring you....
So anyway, the media is now giving us lots more details on cancer treatments and recurrences. This will continue until the next big news flash that will displace it. There is a nice long article on cancer and recurrence on CBS now where they interview Dr Deanna Attai of UCLA and Dr Andrews at Hofstra Norwell School of Medicine.
""I would say breast cancer – a lot of these cancers – have become more of a chronic illness than a terminal illness. A patient may do well with bone metastasis. They may need ongoing treatment for the next five to 10 years, but it doesn't mean it's a terminal sentence. With radiation, thankfully, our techniques and technologies have improved. It all depends on how big the area is and the critical structures that have been affected," said Andrews....
Attai said a recurrence diagnosis can be very emotional for a woman.
"It's different for every patient so I do not want to generalize, but some common themes I see are that many women never truly get over having breast cancer. It's always something that's with them. Many women are changed by their experience, but the further out you get, the breast cancer takes more of a back seat. And we tell them to go back and live your life. A recurrence often brings back all the emotions and then some from when they were first diagnosed. And especially if it comes back somewhere else in the body," said Attai.
She said the first question is always, "How long do I have to live?"
Once the cancer has shown that it's gotten outside of the breast to other parts of body, she said there's the potential of dying from the disease, but she tells patients that tests can help identify what's going on and they can discuss treatment options and their effectiveness.
"We stress that we do have a lot of newer agents and many women are certainly living longer. But there's no question that women living with metastatic disease, at least right now, we can't say we can cure patients. We're much better at keeping the disease under control, gaining a remission now, but at this time, metastatic breast cancer is considered incurable. I think we will get to the point with newer, targeted agents, to talk about long term remission," Attai said."
Right now is a good time to be a cancer patient. There are lots of new treatments coming out. I have several friends who have been stage IV with breast cancer for more than a decade. Their quality of life is pretty damn good.
It doesn't matter how long ago you have had cancer, you need to remember that it still could return. I think you are at a higher risk of getting other cancers as well. Your body may be a temple but it could also have cooties hiding in the corners.
We need to remember we need to be alert to changes in our bodies for changes to talk to our doctors. Even if you call your doctor in a total panic because you could swear you have a new tumor that is going to kill you within a year (yes, I have done that and my doctors did not tell me I was crazy). Doctors do realize that patients are the ones who notice changes first so be sure to speak up.
In the meantime, don't go crazy, just stay alert.
Thursday, April 27, 2017
You Can't Put A Big Bow On A Cancer Diagnosis
When a cancer treatment commercial airs, the people are happy and smiling. The drug or medical center promises they will cure you and you will be back to yourself soon. They want you to believe that they will make it all better.
They are full of bullshit.
"Patients and families are bombarded with the news that the country is winning the war against cancer. The news media hypes research results to attract readers. Drug companies promise "a chance to live longer" to boost sales. Hospitals woo paying customers with ads that appeal to patients' fears and hopes.
"I'm starting to hear more and more that we are better than I think we really are," said Dr. Otis Brawley, chief medical officer at the American Cancer Society. "We're starting to believe our own bullshit."
The consequences are real -- and they can be deadly. Patients and their families have bought into treatments that either don't work, cost a fortune or cause life-threatening side effects.
"We have a lot of patients who spend their families into bankruptcy getting a hyped therapy that [many] know is worthless," Brawley said. Some choose a medicine that "has a lot of hype around it and unfortunately lose their chance for a cure."
Cancer doesn't come with a pretty bow on it (or a stupid ribbon). Basically cancer is nasty. Its a date with death unless you get lucky.
Current advertising wants you to believe they can cure your cancer and keep you smiling. They make all sorts of promises. But those promises are vague. they can extend your life.
But they do not tell you how long - either the medical centers or the pharmaceutical manufacturers - and it could very well only be a couple of months. And those side effects that are printed in tiny type at the bottom of the ad? Well how about a lot of quality time in the bathroom with diarrhea, extreme pain, fever, chills, and shakes? They never tell you that part.
So perhaps there is a little 'fake news' in the commercials for these cancer treatment centers and the treatments themselves. And they do not even provide enough information for patients anyway.
With a cancer diagnosis, we need to not believe the hype and accept the facts while we find the best treatment options for us.
They are full of bullshit.
"Patients and families are bombarded with the news that the country is winning the war against cancer. The news media hypes research results to attract readers. Drug companies promise "a chance to live longer" to boost sales. Hospitals woo paying customers with ads that appeal to patients' fears and hopes.
"I'm starting to hear more and more that we are better than I think we really are," said Dr. Otis Brawley, chief medical officer at the American Cancer Society. "We're starting to believe our own bullshit."
The consequences are real -- and they can be deadly. Patients and their families have bought into treatments that either don't work, cost a fortune or cause life-threatening side effects.
"We have a lot of patients who spend their families into bankruptcy getting a hyped therapy that [many] know is worthless," Brawley said. Some choose a medicine that "has a lot of hype around it and unfortunately lose their chance for a cure."
Cancer doesn't come with a pretty bow on it (or a stupid ribbon). Basically cancer is nasty. Its a date with death unless you get lucky.
Current advertising wants you to believe they can cure your cancer and keep you smiling. They make all sorts of promises. But those promises are vague. they can extend your life.
But they do not tell you how long - either the medical centers or the pharmaceutical manufacturers - and it could very well only be a couple of months. And those side effects that are printed in tiny type at the bottom of the ad? Well how about a lot of quality time in the bathroom with diarrhea, extreme pain, fever, chills, and shakes? They never tell you that part.
So perhaps there is a little 'fake news' in the commercials for these cancer treatment centers and the treatments themselves. And they do not even provide enough information for patients anyway.
With a cancer diagnosis, we need to not believe the hype and accept the facts while we find the best treatment options for us.
Thursday, October 13, 2016
Pre-Treatment Education
So you get a crappy diagnosis, I have had a few, and you instantly want your body fixed! Quickly you rush to the surgeon and get the nastiness removed. With cancer, after surgery you usually get more fun with treatment such as chemo and radiation. Then pow, your body starts protesting and you instantly end up with multiple side effects, including ones that could cause permanent damage to your body and require additional surgeries.
This scenario is not that uncommon with breast cancer patients. Women want that thing out! They have surgeries and chemo and radiation. I have friends who ended up with problems with their mastectomies which required multiple more surgeries. Some have suffered through problems with the 'donation' site on their bodies where tissue was taken to create a 'foob' after a mastectomy. I have a friend with permanent cardiac damage as a result of chemotherapy. Me, and others, have lymphedema as a result.
The rush to surgery means lack of attention to potential side effects and body changes, both physical and emotional. Not enough attention is placed on the after effects. I have always thought that with both my breast cancer surgeries and treatment and many other medical procedures.
This morning I read over at Hen Backtalk and found a link to an article talking about what kinds of tests to request before treatment. While the doctor, author of the article, focuses on specific tests before breast cancer chemotherapy. But I believe this is true, I think this is a very valid point. Not enough focus is given to this part of the medical decision making process.
Doctors and other medical professionals usually can't give us all the details because they usually have not had the treatment protocol themselves. I think if you are facing a major medical decision, especially cancer treatment, find someone who has been through this themselves before making any decision. Cancer surgeries are usually focused on removing as much of the cancer as possible and getting clean margins. So with breast cancer, for example, you might end up very 'lopsided' due to the need to get the clean margins. You can't have enough information before major surgery.
This is where support groups and online forums can be so helpful. Don't be shy, get out there and ask your questions. Find someone who has gone through the procedure and decision process you are facing to learn about side effects and after effects in general. Education is always good.
This scenario is not that uncommon with breast cancer patients. Women want that thing out! They have surgeries and chemo and radiation. I have friends who ended up with problems with their mastectomies which required multiple more surgeries. Some have suffered through problems with the 'donation' site on their bodies where tissue was taken to create a 'foob' after a mastectomy. I have a friend with permanent cardiac damage as a result of chemotherapy. Me, and others, have lymphedema as a result.
The rush to surgery means lack of attention to potential side effects and body changes, both physical and emotional. Not enough attention is placed on the after effects. I have always thought that with both my breast cancer surgeries and treatment and many other medical procedures.
This morning I read over at Hen Backtalk and found a link to an article talking about what kinds of tests to request before treatment. While the doctor, author of the article, focuses on specific tests before breast cancer chemotherapy. But I believe this is true, I think this is a very valid point. Not enough focus is given to this part of the medical decision making process.
Doctors and other medical professionals usually can't give us all the details because they usually have not had the treatment protocol themselves. I think if you are facing a major medical decision, especially cancer treatment, find someone who has been through this themselves before making any decision. Cancer surgeries are usually focused on removing as much of the cancer as possible and getting clean margins. So with breast cancer, for example, you might end up very 'lopsided' due to the need to get the clean margins. You can't have enough information before major surgery.
This is where support groups and online forums can be so helpful. Don't be shy, get out there and ask your questions. Find someone who has gone through the procedure and decision process you are facing to learn about side effects and after effects in general. Education is always good.
Wednesday, June 1, 2016
Would You?
So if you had an incurable cancer and knew you were going to die in the next year, would you try unproven medications? By unproven I mean not yet FDA approved for use on humans so there is no way of knowing it wouldn't kill you sooner?
A young man, age 20, from Rhode Island is in this position. He has an inoperable tumor on his brain stem and a very bad prognosis. He found a renegade doctor who has been under review for a long time due to his previous unproven treatments. The patient is willing to see if he can contribute to help future patients. He started this doctor's treatment and then it was stopped by the FDA. Through a lawsuit he was able to restart the treatment.
"The FDA tries to protect patients from unproven remedies that might do more harm than good. But when a child has an incurable brain tumor, does the same cold calculus of risk and benefit apply?
“Neil wanted to be part of this research,” Wendy Fachon, Neil’s mother, told STAT. “What did he have to lose — his life?”
For his part, Neil said in an interview Tuesday that he has been focusing on staying upbeat, even amid the “crazy stress” of fighting the FDA for the right to try the infusions. “I’m thinking ‘What can I still do?’” he said. “I can hold my head up. I can keep the most positive spirit I can, and help my parents get through this the best they can. And that’s precisely what I intend to do.”"
So my question is would you, if you were in the same position? I am not sure I would. While I like the idea of helping others, if the treatment was so unproven that it might kill me sooner, I am not sure how I would handle the added stress. I am being honest here. One part of me says yes, the other part is saying not sure.
A young man, age 20, from Rhode Island is in this position. He has an inoperable tumor on his brain stem and a very bad prognosis. He found a renegade doctor who has been under review for a long time due to his previous unproven treatments. The patient is willing to see if he can contribute to help future patients. He started this doctor's treatment and then it was stopped by the FDA. Through a lawsuit he was able to restart the treatment.
"The FDA tries to protect patients from unproven remedies that might do more harm than good. But when a child has an incurable brain tumor, does the same cold calculus of risk and benefit apply?
“Neil wanted to be part of this research,” Wendy Fachon, Neil’s mother, told STAT. “What did he have to lose — his life?”
For his part, Neil said in an interview Tuesday that he has been focusing on staying upbeat, even amid the “crazy stress” of fighting the FDA for the right to try the infusions. “I’m thinking ‘What can I still do?’” he said. “I can hold my head up. I can keep the most positive spirit I can, and help my parents get through this the best they can. And that’s precisely what I intend to do.”"
So my question is would you, if you were in the same position? I am not sure I would. While I like the idea of helping others, if the treatment was so unproven that it might kill me sooner, I am not sure how I would handle the added stress. I am being honest here. One part of me says yes, the other part is saying not sure.
Wednesday, April 20, 2016
There is a really big gap between patient needs and research advancements
At a recent conference, Dr Piccart-Gebhart asked the question of how the highly fragmented breast cancer research is meeting patient's needs. This raises a very good point.
We know there is all sorts of medical research going on right now. It covers many different areas in gene expression, tumor micro environment and more, and for each type of breast cancer that exists. But does it answer these questions, as noted in the articlets?
"Patients with advanced-stage HER2-positive breast cancer tend to want answers to the following questions:
We know there is all sorts of medical research going on right now. It covers many different areas in gene expression, tumor micro environment and more, and for each type of breast cancer that exists. But does it answer these questions, as noted in the articlets?
"Patients with advanced-stage HER2-positive breast cancer tend to want answers to the following questions:
- Can I live for many more years with the disease?
- Can I be sure that the chosen therapy will truly help me?
- Can I stay away from therapies with marked side effects for long periods of time?..."
- Can I be sure that my long-term treatment will help me?
- Can I do as well with a simpler or a shorter treatment?
- Can I forgo aggressive chemotherapy?"
The article I mention above had an doctor and consultant to Roche-Genentech answering the questions for HER2+ patients. I am not a doctor.
Usually when I ask my doctors about a new advancement that sounds like it might work for me, I am told that yes its new but needs more research before they can be sure... Well how can I tell? I don't have the training to understand all this medical stuff. It would be nice if research was presented in a way us patients could understand and how it ties into other research and what it means for the patient. This is a really big gap.
Usually when I ask my doctors about a new advancement that sounds like it might work for me, I am told that yes its new but needs more research before they can be sure... Well how can I tell? I don't have the training to understand all this medical stuff. It would be nice if research was presented in a way us patients could understand and how it ties into other research and what it means for the patient. This is a really big gap.
Wednesday, April 13, 2016
Side Effects
You get an ailment, maybe cancer, and they come up with all these drugs, surgeries, procedures and more to 'cure' you. Eventually you start to feel better and get to that 'new normal' crap they tell you about. And then something starts to not be right with your body and you go back to the doctor and find out your oh-so-wonderful cancer treatment has left you with a side effect that might kill you on its own.
I know people who this has happened to. My sister in law's sister was treated with radiation to her chest in her teens for Hodgkin's and ended up dying of breast cancer at 47. A woman at the gym, her daughter just had a very serious heart attack at the age of 53 as a result of her treatment for Hodgkin's as well. A friend has heart damage as the result of her breast cancer chemotherapy. And I can go on.
My rheumatologist is considering switching my treatment combination for my RA but is concerned about side effects that could potentially cause life long problems for me. I also need a yearly chest x-ray, which is standard procedure for those on one of my medications, to make sure I am not causing permanent damage to my lungs.
As medications get stronger to treat more and more ailments, their potential side effects can be deadly. One of the most important parts of clinical trials is balancing the potential side effects from a specific dose, with out killing the patient.
They cure you from one disease and end up killing you from something else as a result in the long run. Does this seem right? It does not to me. I am not very happy about this. But what options do I have?
There are people who say they cured themselves through some diet change, a secret potion found on an island in the South Pacific, or becoming a raw paleo vegan or something. None of those options appeal to me. I do my best to take care of me but I also try to live my life the way I want.
I do take my Western medicine and hope the side effects will not kill me in the long run. This is the part of the system that needs to be changed.
I know people who this has happened to. My sister in law's sister was treated with radiation to her chest in her teens for Hodgkin's and ended up dying of breast cancer at 47. A woman at the gym, her daughter just had a very serious heart attack at the age of 53 as a result of her treatment for Hodgkin's as well. A friend has heart damage as the result of her breast cancer chemotherapy. And I can go on.
My rheumatologist is considering switching my treatment combination for my RA but is concerned about side effects that could potentially cause life long problems for me. I also need a yearly chest x-ray, which is standard procedure for those on one of my medications, to make sure I am not causing permanent damage to my lungs.
As medications get stronger to treat more and more ailments, their potential side effects can be deadly. One of the most important parts of clinical trials is balancing the potential side effects from a specific dose, with out killing the patient.
They cure you from one disease and end up killing you from something else as a result in the long run. Does this seem right? It does not to me. I am not very happy about this. But what options do I have?
There are people who say they cured themselves through some diet change, a secret potion found on an island in the South Pacific, or becoming a raw paleo vegan or something. None of those options appeal to me. I do my best to take care of me but I also try to live my life the way I want.
I do take my Western medicine and hope the side effects will not kill me in the long run. This is the part of the system that needs to be changed.
Wednesday, February 17, 2016
The 'cancer' spotlight
A woman wrote about random acts of kindness by strangers due to cancer recently in Cure Magazine online. Sorry I'm not interested. Unless you are sitting in the waiting room of the chemo infusion area with a similar look, don't bug me.
Okay, this just irritates me. You know when you were walking around with that chemo pallor with a hat or wig on and feel like crap and someone you don't know from a hole in the wall comes up and gives you unwanted advice or just tries to be extra nice. Its one thing to have someone open the door for you but another completely to want to talk or share their 'cancer' story. Or the treatment their second cousin's neighbor's dog walker's uncle's cancer treatment that you should try. Or that they died.
The biggest thing for me when I was in treatment was that I wanted to be treated like a regular person. Not a cancer person. I was not interested in broadcasting my ailments to anyone else. Or to be on the receiving end of unwanted information.
Call me grumpy but I never liked the spotlight.
Okay, this just irritates me. You know when you were walking around with that chemo pallor with a hat or wig on and feel like crap and someone you don't know from a hole in the wall comes up and gives you unwanted advice or just tries to be extra nice. Its one thing to have someone open the door for you but another completely to want to talk or share their 'cancer' story. Or the treatment their second cousin's neighbor's dog walker's uncle's cancer treatment that you should try. Or that they died.
The biggest thing for me when I was in treatment was that I wanted to be treated like a regular person. Not a cancer person. I was not interested in broadcasting my ailments to anyone else. Or to be on the receiving end of unwanted information.
Call me grumpy but I never liked the spotlight.
Monday, January 18, 2016
Nerve damage from cancer treatment
If cancer doesn't kill us, sometimes its treatment leaves us with many more problems. One of these is neuropathy. A new study was to be announced over the weekend at ASCO in San Francisco where several hundred women were studied after cancer treatment.
"At an average of six years after cancer diagnosis, 45 percent of them still had symptoms of nerve damage, such as loss of feeling in their hands and feet.
These symptoms were associated with much poorer physical functioning and difficulty doing daily tasks, such as cooking and shopping. The women with symptoms also had changes in their walking patterns and were nearly twice as likely to fall as those without such symptoms, the researchers discovered."
And the best part is:
"While there are no effective treatments for this side effect, rehabilitative exercise programs may preserve physical functioning and mobility in the presence of neuropathy to help prevent falls and resulting injuries..."
"At an average of six years after cancer diagnosis, 45 percent of them still had symptoms of nerve damage, such as loss of feeling in their hands and feet.
These symptoms were associated with much poorer physical functioning and difficulty doing daily tasks, such as cooking and shopping. The women with symptoms also had changes in their walking patterns and were nearly twice as likely to fall as those without such symptoms, the researchers discovered."
And the best part is:
I love the part about new effective treatments. Maybe we need cancer treatments with fewer side effects.
Tuesday, December 29, 2015
Traveling for cancer treatment
Yesterday while packing wasting time I was watching the local news. It included a story about a first grade teacher who has cancer and needs to go overseas for treatment. She has some kind of liver cancer and has run out of treatment options. In the video she says she is going to Germany for PRRT treatment which costs $100,000. As it is not yet FDA approved, she must pay out of pocket for it.
I was intrigued so I did a little research. The treatment she needs is PRRT or Peptide Receptor Radionuclide Therapy and is for people who have run out of treatment options with certain cancers. Sounds reasonable.
And of course I have a 'but' to go alone with this. The first article I found on it said there is a Level 3 Clinical Trial going on for it in the US and in certain parts of Europe. Then I went on clinicaltrials.gov and found more trials for it in the US, including ones for gastrointestinal tumors and lymphomas and more. I realize that to be eligible for a clinical trial you need to meet certain criteria. So maybe the teacher doesn't meet the requirements for one of the trials.
But if she can participate in a clinical trial, why does she need to pay for treatment? Wouldn't that make more sense than raising money herself (and through her students and other people she knows)?
I am not a big proponent of traveling overseas for treatment that does not yet have FDA approval. (Do you remember the people who went to Mexico for laetrile treatment in the 1970s?) Yes there is the thought that if you are told there are no more treatment options for you wouldn't you want to try anything? But maybe exploring more local options might be a good start.
I could be showing my cynical side again....
I was intrigued so I did a little research. The treatment she needs is PRRT or Peptide Receptor Radionuclide Therapy and is for people who have run out of treatment options with certain cancers. Sounds reasonable.
And of course I have a 'but' to go alone with this. The first article I found on it said there is a Level 3 Clinical Trial going on for it in the US and in certain parts of Europe. Then I went on clinicaltrials.gov and found more trials for it in the US, including ones for gastrointestinal tumors and lymphomas and more. I realize that to be eligible for a clinical trial you need to meet certain criteria. So maybe the teacher doesn't meet the requirements for one of the trials.
But if she can participate in a clinical trial, why does she need to pay for treatment? Wouldn't that make more sense than raising money herself (and through her students and other people she knows)?
I am not a big proponent of traveling overseas for treatment that does not yet have FDA approval. (Do you remember the people who went to Mexico for laetrile treatment in the 1970s?) Yes there is the thought that if you are told there are no more treatment options for you wouldn't you want to try anything? But maybe exploring more local options might be a good start.
I could be showing my cynical side again....
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I Started a New Blog
I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment. Howe...
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I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment. Howe...
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So after you get diagnosed with cancer, it seems like everyone you know has cancer because: You have met a lot of other people going throu...
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I love blogging and I love reading other people's blogs. But I have a few peeves (of which I cannot claim I have never committed) that j...