Here's an interesting clip from TEDTalks describing a new treatment for brain and trunk cancers that has just completed clinical trials. In trials, GBM4 patients whose cancer had recurred after they'd received surgery, radiation and chemo wore this device instead of taking another round of traditional treatment. While it did not extend their life expectancy beyond that of the control group, it kept them alive just as well but without any side effects. No nausea, no fatigue, no chemo fog... just a silly robot hat. A small price to pay.
Bill Doyle cites one patient (whose results appear to be atypical), who was given three months to live. Within one year of using TTF treatment, he no longer showed any enhancement on his MRI. Five years after starting his treatment, he's still alive, without side-effects and well enough to go to work.
From what I understand, the treatment involves wearing a device over the afflicted region. It is totally non-invasive, and uses an electrical field to suppress cell reproduction. Even though it's been proven to work on its own, Doyle says studies are ongoing on how to best use it in conjunction with other treatments. Rather than replace chemotherapy and radiation, it could dramatically improve their effectiveness.
These are some exciting times, my friends.
Tuesday, January 31, 2012
Monday, January 23, 2012
The Slippery Slope
Well, not exactly a slope, really.
This morning as I walked to my car I stepped on some black ice and slipped. There was nothing around on which I could steady myself. Nothing firm of which I could take hold. Just me, and the blacktop, and my fleeting equilibrium.
I didn't fall. I caught my balance the old fashioned way, that intricate and instinctive feat of coordination that allows us to thrust our center of gravity back in line with our bodies and remain upright. This isn't the first time I'd slipped and managed not to fall, nor would it have been the first time I'd slipped and ended up on the ground. It was the first time I'd done either since my operation, and so I immediately recalled my first meeting with Dr. C. That was the one where he was genuinely surprised that I was so stable on my feet after all I'd been through.
I started to wonder how things could have played out. What if I'd fallen? I'd probably have fallen backward. Would the jarring motion of the impact have done anything? What if I'd hit my head? I would have hit the back, rather than the weakened front where I had my resection. What would I do if I felt fine? Would I pick myself up and go to work? What would I do if I didn't feel fine? Should I have gone to the hospital either way? Is that who I am now? The sort of person who can't even deal with a fall on his own? All of my various neurologists asked me if I'd ever fallen and it seemed like such a ridiculous question, akin to asking if I'd ever sneezed. Of course I had. What of it?
But I kept coming back to Dr. C.'s reaction, and the implication that I was unusually stable. Were I more typical, would I have been able to catch myself like that? Or if I want to get philosophical (possibly spiritual?) about it, was I supposed to fall? Was I supposed to spend today in the hospital? Was I supposed to be forever changed and further disabled? Was I supposed to die today?
Hell of a thought for a Monday.
My past self would have taken the fall, picked himself up and gone about his life. I admit that had I fallen, I likely would have done the same even if I didn't feel quite right, in the hopes that the feeling would go away on its own over time. I know the real warning signs to watch for, don't I?
None of that mattered because I didn't fall. I got into my car and I drove to work, albeit with a little extra care having confirmed that the roads were icy. I felt good having reaffirmed that I was still capable of such a complex automatic response, but unsettled about what may have happened were I not. Chances are, there will come a day when I slip and fall. I wonder, what choices shall I make on that day, and how shall they serve me?
Laura, if you're reading this and didn't see my response to your comment, I'd be happy to answer any questions you might have. You can reach me at knightlyqblowguns(at)hotmail(dot)com.
This morning as I walked to my car I stepped on some black ice and slipped. There was nothing around on which I could steady myself. Nothing firm of which I could take hold. Just me, and the blacktop, and my fleeting equilibrium.
I didn't fall. I caught my balance the old fashioned way, that intricate and instinctive feat of coordination that allows us to thrust our center of gravity back in line with our bodies and remain upright. This isn't the first time I'd slipped and managed not to fall, nor would it have been the first time I'd slipped and ended up on the ground. It was the first time I'd done either since my operation, and so I immediately recalled my first meeting with Dr. C. That was the one where he was genuinely surprised that I was so stable on my feet after all I'd been through.
I started to wonder how things could have played out. What if I'd fallen? I'd probably have fallen backward. Would the jarring motion of the impact have done anything? What if I'd hit my head? I would have hit the back, rather than the weakened front where I had my resection. What would I do if I felt fine? Would I pick myself up and go to work? What would I do if I didn't feel fine? Should I have gone to the hospital either way? Is that who I am now? The sort of person who can't even deal with a fall on his own? All of my various neurologists asked me if I'd ever fallen and it seemed like such a ridiculous question, akin to asking if I'd ever sneezed. Of course I had. What of it?
But I kept coming back to Dr. C.'s reaction, and the implication that I was unusually stable. Were I more typical, would I have been able to catch myself like that? Or if I want to get philosophical (possibly spiritual?) about it, was I supposed to fall? Was I supposed to spend today in the hospital? Was I supposed to be forever changed and further disabled? Was I supposed to die today?
Hell of a thought for a Monday.
My past self would have taken the fall, picked himself up and gone about his life. I admit that had I fallen, I likely would have done the same even if I didn't feel quite right, in the hopes that the feeling would go away on its own over time. I know the real warning signs to watch for, don't I?
None of that mattered because I didn't fall. I got into my car and I drove to work, albeit with a little extra care having confirmed that the roads were icy. I felt good having reaffirmed that I was still capable of such a complex automatic response, but unsettled about what may have happened were I not. Chances are, there will come a day when I slip and fall. I wonder, what choices shall I make on that day, and how shall they serve me?
Laura, if you're reading this and didn't see my response to your comment, I'd be happy to answer any questions you might have. You can reach me at knightlyqblowguns(at)hotmail(dot)com.
Friday, January 13, 2012
Maintenance
There are two things that particularly suck about this stage of cancer treatment. Aside from the whole "having cancer" thing, that is.
First, very little is actually happening. I see Dr. C. once a month. Ever other month it's MRI time. Generally speaking, there's nothing to report. It's like watering a plant. Plant still alive? OK, great, don't forget to water it again later.
Second, I have to wonder if every slight ailment or discomfort is some horrible disease or metastasis, and it's not hypochondria because I do have brain cancer, which is a horrible, potentially metastatic disease. It usually doesn't spread to other parts of the body but "usually" is not "never," and 29-year-olds "usually" don't have brain cancer in the first place.
Case in point, that little pain I mentioned a while back, the one I feel under ribs. It hasn't gone away. At first I thought it might be due to the chemotherapy, as unexplained pains are a common side effect and I've had two sets of X-rays taken of my torso, one by an oncologist and one by a pulmonologist. Neither saw anything of concern. ...except I feel something that concerns me. There's something causing this. Lately I can feel something pressing on my ribs when I stretch, and I wonder if the right side of my abdomen isn't just a little bit distended along my flank. It could be my mind playing tricks on me. Or it could be another tumor. Or maybe a blood clot. Or an organ swollen for a more benign reason.
That side has always been a little odd. I lost some weight in college and when I took a deep breath I could feel something rubbing against the bottom of my ribcage, like it would naturally fall on one side but my inflated lungs would push it to the other. I still get that sensation sometimes. Sometimes it would "catch," and I'd get a stabbing pain if I tried to inhale too deeply. I always thought that was normal, like a "stitch" that some people get. It would always go away on its own pretty quickly, as if it were a muscle cramp. Who knows, maybe that's what it was. Maybe it was unrelated.
But I take solace in one simple fact: my bloodwork is rock solid. Nearly perfect. Not just in terms of platelet count and the like, but on my CBC I fall directly in the center of normal on all readings save one, which is still within normal bounds. Were something impeding the function of any of my gastrointestinal organs, that would show up in my blood. The question is, would all of it show up in a standard CBC? After all, they can't tell everything from that little test strip.
Maybe I'll ask for a full course next time I see Dr. C., just to be sure. Either way, I'm going to get to the bottom of this. I can feel something there, regardless of what the X-rays show. I don't know if it's swelling, or a cyst, or a tumor or what, but I need to figure out what it is, and take care of it if it's going to be a problem.
I got lucky when the neck thing turned out to be nothing but a cheap mattress. I hope my luck holds out.
First, very little is actually happening. I see Dr. C. once a month. Ever other month it's MRI time. Generally speaking, there's nothing to report. It's like watering a plant. Plant still alive? OK, great, don't forget to water it again later.
Second, I have to wonder if every slight ailment or discomfort is some horrible disease or metastasis, and it's not hypochondria because I do have brain cancer, which is a horrible, potentially metastatic disease. It usually doesn't spread to other parts of the body but "usually" is not "never," and 29-year-olds "usually" don't have brain cancer in the first place.
Case in point, that little pain I mentioned a while back, the one I feel under ribs. It hasn't gone away. At first I thought it might be due to the chemotherapy, as unexplained pains are a common side effect and I've had two sets of X-rays taken of my torso, one by an oncologist and one by a pulmonologist. Neither saw anything of concern. ...except I feel something that concerns me. There's something causing this. Lately I can feel something pressing on my ribs when I stretch, and I wonder if the right side of my abdomen isn't just a little bit distended along my flank. It could be my mind playing tricks on me. Or it could be another tumor. Or maybe a blood clot. Or an organ swollen for a more benign reason.
That side has always been a little odd. I lost some weight in college and when I took a deep breath I could feel something rubbing against the bottom of my ribcage, like it would naturally fall on one side but my inflated lungs would push it to the other. I still get that sensation sometimes. Sometimes it would "catch," and I'd get a stabbing pain if I tried to inhale too deeply. I always thought that was normal, like a "stitch" that some people get. It would always go away on its own pretty quickly, as if it were a muscle cramp. Who knows, maybe that's what it was. Maybe it was unrelated.
But I take solace in one simple fact: my bloodwork is rock solid. Nearly perfect. Not just in terms of platelet count and the like, but on my CBC I fall directly in the center of normal on all readings save one, which is still within normal bounds. Were something impeding the function of any of my gastrointestinal organs, that would show up in my blood. The question is, would all of it show up in a standard CBC? After all, they can't tell everything from that little test strip.
Maybe I'll ask for a full course next time I see Dr. C., just to be sure. Either way, I'm going to get to the bottom of this. I can feel something there, regardless of what the X-rays show. I don't know if it's swelling, or a cyst, or a tumor or what, but I need to figure out what it is, and take care of it if it's going to be a problem.
I got lucky when the neck thing turned out to be nothing but a cheap mattress. I hope my luck holds out.
Friday, January 6, 2012
ICT-107 GBM4 "Vaccine"
Speaking of new tools...
They're also working on a version for lower-grade gliomas. Sounds like it's not perfect and 16 patients is pretty close to the line between "data" and "anecdote," but this just might be the answer I've been waiting for. I guess with this - as with so much else - we will have to wait and see.
The approach with this particular vaccine is unique, Lesser added, because it is targeting the antigens or proteins that are present on glioma stem cells, whereas other treatment approaches mostly target differentiated tumor cells.
"The antigens used in this vaccine target the tumor stem cells -- the handful of cells that keep the tumor alive and dividing. Most of the cells we kill with standard treatment are likely not the ones driving the tumor growth. If the stem cells aren't targeted, they keep generating more tumors."
According to the biotechnology company that is conducting the trial, the Phase I clinical study of ICT-107 in GBM involved 16 newly-diagnosed patients who received the vaccine in addition to standard therapy -- surgery, radiation and chemotherapy. Those patients demonstrated a one-year overall survival of 100 percent and a two-year survival of 80 percent. Although only a small number of patients were treated, these results compare favorably with historical 61percent one-year and 26 percent two-year survival with standard care alone.
They're also working on a version for lower-grade gliomas. Sounds like it's not perfect and 16 patients is pretty close to the line between "data" and "anecdote," but this just might be the answer I've been waiting for. I guess with this - as with so much else - we will have to wait and see.
Thursday, January 5, 2012
Eric Kostelich on Chaos Theory and Brain Tumors
Interesting interview over at Boing Boing, about chaos theory, forecasting seemingly chaotic systems, and how that applies to brain cancer. Not the most pleasant read for someone with brain cancer as they take special care to emphasize how deadly and untreatable it is, but fascinating as long as you don't expect them to pull any punches.
It seems that Kostelich thinks with enough research we could forecast what a cancer will do in the same way we forecast the weather. That could have a profound impact on "accuracy-by-volume" treatments like radiation, as instead of treating everything within 2cm of identified cancer they could only treat the area where the cancer's expected to spread next.
Can't argue with that.
Still, if they get as good at forecasting cancer as they are at forecasting weather, I think the best they could do is tell me I probably don't have cancer and that my core temperature will be in the 90's all week.
It seems that Kostelich thinks with enough research we could forecast what a cancer will do in the same way we forecast the weather. That could have a profound impact on "accuracy-by-volume" treatments like radiation, as instead of treating everything within 2cm of identified cancer they could only treat the area where the cancer's expected to spread next.
My understanding, and from personal experience with a family member, is that you're right, this isn't going to cure cancer in general or glioblastoma specifically. But one of the real goals of treatment is to help patients live as well as possible for as long as possible. The age of highest incident for the type of brain cancer we studied is between 40 and 65. If this result allows you to live two months longer than you otherwise would maybe that makes the difference between seeing your daughter get married or not. We can't prevent the inevitable, but we might help them live better or longer. If we can develop good enough mathematical models and be able to tell patients that going through another round of chemo isn't likely to help, then they can decide to spend that time with family instead of in the hospital. That's beneficial in it's own way. - Eric Kostelich
Can't argue with that.
Still, if they get as good at forecasting cancer as they are at forecasting weather, I think the best they could do is tell me I probably don't have cancer and that my core temperature will be in the 90's all week.
Monday, January 2, 2012
Resolutions
Without fanfare or any particular note, 2012 arrived at the Blowguns household, and nothing - save the clocks - changed.
I've never been a big fan of New Years. I like it better than the "holidays" as no one really argues about New Years. We're all in agreement that it's a time for revelry and new beginnings, with no religious context, and if you don't really care you can sit at home and not care to your heart's content. I was at my computer and noticed that it was 12:06AM. That was my celebration. No alcohol. No company. I didn't even watch the ball drop.
I did find myself thinking about resolutions. They seem so trite, now. Who cares if I lose 10 pounds? I have brain cancer. Who cares if I earn a raise at work? Brain cancer. All of the things I'd love to change are outside of my control. I can't resolve to be cancer free. I can't even resolve to have no progression over the next year. I can't resolve for science to find a cure. I can't resolve to be the object of divine intervention. I don't need to think back on 2012 next year and notice how I still have cancer, and wonder why I didn't keep the resolution to... not.
To be honest, I never really did the resolution thing. I found the tradition to be interesting and refreshingly hopeful; a big chunk of the world, time zone by time zone, promising to improve. Who cares of those promises were made in an alcoholic haze, or if they'd all be broken within a month, if not a week? That kind of joint optimism is just kind of rare these days. Still, I participated only as an observer. I felt that if I wanted to make a change in my life I didn't need to tie it to any particular date. That said, I rarely made changes in my life.
So I think I'm going to make a resolution this year. I resolve to make it to 2013. There are no indications that I'm at risk of dying in 2012 and definitely some mitigating factors beyond my control at work, but I feel like no matter what happens, I can fight my way to 2013. In 2013, I can worry about making it to 2014.
I continue to have good days and bad days. I've noticed more and more holes in my memory. Little flashes of familiarity floating, unattached. I struggle to place them in my life and find their origin but I often fail. When I succeed it's a small victory but I can't help remember a time when this was effortless to me. I would hear something once and that piece of knowledge would stick with me for years, so I could call upon it as needed. These days I'll sometimes remember something clearly and then have no idea why I believe that, or if it's even true.
That aside, my vocabulary seems to be recovering. On my good days I'm quicker with my words and they flow more naturally. It's less of a struggle to write, which is an indescribable relief. I'm not as good at spelling anymore - that used to be damn near instinctive - but what my mind lacks, technology shall provide.
I'm doing all right emotionally. No major breakthroughs nor setbacks. No waves. I haven't worried about it much as I have other things to deal with. Lately I've been hanging around the Cancer Forums (linked to the right). The support is nice, but what helps me the most is when I can help someone else. If I can ease their worries, I can ease my own. Maybe it's a bit like comforting my mother. Maybe I look to others for some sense of how I should feel, so if they are calm, I am calm.
Maybe I feel numb because I spend so much time alone.
I've never been a big fan of New Years. I like it better than the "holidays" as no one really argues about New Years. We're all in agreement that it's a time for revelry and new beginnings, with no religious context, and if you don't really care you can sit at home and not care to your heart's content. I was at my computer and noticed that it was 12:06AM. That was my celebration. No alcohol. No company. I didn't even watch the ball drop.
I did find myself thinking about resolutions. They seem so trite, now. Who cares if I lose 10 pounds? I have brain cancer. Who cares if I earn a raise at work? Brain cancer. All of the things I'd love to change are outside of my control. I can't resolve to be cancer free. I can't even resolve to have no progression over the next year. I can't resolve for science to find a cure. I can't resolve to be the object of divine intervention. I don't need to think back on 2012 next year and notice how I still have cancer, and wonder why I didn't keep the resolution to... not.
To be honest, I never really did the resolution thing. I found the tradition to be interesting and refreshingly hopeful; a big chunk of the world, time zone by time zone, promising to improve. Who cares of those promises were made in an alcoholic haze, or if they'd all be broken within a month, if not a week? That kind of joint optimism is just kind of rare these days. Still, I participated only as an observer. I felt that if I wanted to make a change in my life I didn't need to tie it to any particular date. That said, I rarely made changes in my life.
So I think I'm going to make a resolution this year. I resolve to make it to 2013. There are no indications that I'm at risk of dying in 2012 and definitely some mitigating factors beyond my control at work, but I feel like no matter what happens, I can fight my way to 2013. In 2013, I can worry about making it to 2014.
I continue to have good days and bad days. I've noticed more and more holes in my memory. Little flashes of familiarity floating, unattached. I struggle to place them in my life and find their origin but I often fail. When I succeed it's a small victory but I can't help remember a time when this was effortless to me. I would hear something once and that piece of knowledge would stick with me for years, so I could call upon it as needed. These days I'll sometimes remember something clearly and then have no idea why I believe that, or if it's even true.
That aside, my vocabulary seems to be recovering. On my good days I'm quicker with my words and they flow more naturally. It's less of a struggle to write, which is an indescribable relief. I'm not as good at spelling anymore - that used to be damn near instinctive - but what my mind lacks, technology shall provide.
I'm doing all right emotionally. No major breakthroughs nor setbacks. No waves. I haven't worried about it much as I have other things to deal with. Lately I've been hanging around the Cancer Forums (linked to the right). The support is nice, but what helps me the most is when I can help someone else. If I can ease their worries, I can ease my own. Maybe it's a bit like comforting my mother. Maybe I look to others for some sense of how I should feel, so if they are calm, I am calm.
Maybe I feel numb because I spend so much time alone.
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