Saturday, September 27, 2014
Thursday, September 25, 2014
Cancer as Chronic Condition
One more video from Patient Power: Dr. Owen O'Connor, head of Hematology and Oncology at NYU, discusses looking at cancer as a chronic condition.
It's a short video, and Dr. O'Connor brings up the idea that maybe we don't need to approach cancer as something that needs to be cured -- maybe we can just try to control it. It's certainly not a new idea, and he doesn't really add anything new to that conversation (it's one that's been going on since I first became a patient six years ago). But (especially given his credentials), it's a good reminder that the conversation is out there, and that we have a choice about how we approach our cancer.
Dr. O'Connor pints out that the "controlling" approach might be especially appropriate for older patients, who might have a tougher time tolerating a more aggressive approach. He also hints that maybe for patients with an indolent cancer, without symptoms, controlling might be better than trying to cure.
It's an interesting question, one with emotional component, just like there is when we think about Watching and Waiting. If someone like me, diagnosed at 40 years old, was given a third option (other than chemo and W & W), of taking a pill every day to control my cancer, would I take it? It's a nice middle ground -- you feel like you're doing something, but you're not worried about the severe side effects. (Which isn't to say that the "controlling" treatments have no side effects. They just seem less severe than traditional chemo.)
It's an interesting question.
And one we might all start thinking about.....
It's a short video, and Dr. O'Connor brings up the idea that maybe we don't need to approach cancer as something that needs to be cured -- maybe we can just try to control it. It's certainly not a new idea, and he doesn't really add anything new to that conversation (it's one that's been going on since I first became a patient six years ago). But (especially given his credentials), it's a good reminder that the conversation is out there, and that we have a choice about how we approach our cancer.
Dr. O'Connor pints out that the "controlling" approach might be especially appropriate for older patients, who might have a tougher time tolerating a more aggressive approach. He also hints that maybe for patients with an indolent cancer, without symptoms, controlling might be better than trying to cure.
It's an interesting question, one with emotional component, just like there is when we think about Watching and Waiting. If someone like me, diagnosed at 40 years old, was given a third option (other than chemo and W & W), of taking a pill every day to control my cancer, would I take it? It's a nice middle ground -- you feel like you're doing something, but you're not worried about the severe side effects. (Which isn't to say that the "controlling" treatments have no side effects. They just seem less severe than traditional chemo.)
It's an interesting question.
And one we might all start thinking about.....
Tuesday, September 23, 2014
Patient Power on Follicular Lymphoma
If you thought that last Patient Power video was good, you're going to love this one.
It focuses on new treatments for Follicular Lymphoma, specifically, not just lymphoma in general.
The speakers are Dr. John Gribben from the Barts Cancer Center in England, and Dr. Wyndham Wilson from the National Cancer Institute. As with pretty much everything that Patient Power does, the tone is upbeat and the content is informative.
There's some emphasis on understanding the pathways that Follicular Lymphoma cells take, and on targeting not just the cells themselves, but the processes that they go through in order to do their jobs. So the treatments try to disrupt these pathways. Again, Idelalisib/Zydelig, Ibrutinib, and Revlimid get mentioned.
They point out, too, that many newer treatments focus on Follicular Lymphoma as chronic, so instead of treating and then waiting to treat again, the treatments are taken every day, keeping the disease under control.
That brings up the question, of course, of which approach to take: try to get rid of it, or try to keep it under control.
CAR T cells get a mention here, too, as they did in the more general lymphoma video. (This video was also done at the iwNHL workshop; I'm guessing there was a session that focused on CAR T cells that got everyone excited.)
I'm going to give you Dr. Wilson's closing statement in full, because I think it's worth reading, even if you're going to watch the video, too:
I think I’d like to close with one comment is that when I first started in this field in the late 1980s, the average median time people lived with these is around 10 years, and we’re probably now up around 15 to 20 years. There have been concrete, very favorable changes. I also want to say that there are a fairly large segment of people that get therapy where the disease never comes back in their lifetime. Given the fact that the average age for the more common types is around 60, I think many people with current therapies can, I think, be very optimistic that these will not be life-threatening diseases, that they can live long enough, and sometimes the disease never coming back. I think that patients should be very optimistic and not see a diagnosis of these as being something that’s really going to be transforming their life because most people generally will live a very good, positive life with them.
That's pretty nice to see, isn't it? And while some of us started this journey well before the age of 60, I think that kind of statement gives us hope, too. Median Overall Survival statistics are complicated things, and it's worth thinking about them carefully. I've written about that statistic before, and why it doesn't mean much, but the important thing to remember for us younger folks is this: Median Overall Survival means that half the people survived for fewer than 20 years, but half survived for more. And there's no upper limit for those that survive for more than 20 years -- there's nothing that says we can't go for 50.
(Maybe I'll write about that some more sometime soon....)
Watch the video. It's just more reason to be positive.
It focuses on new treatments for Follicular Lymphoma, specifically, not just lymphoma in general.
The speakers are Dr. John Gribben from the Barts Cancer Center in England, and Dr. Wyndham Wilson from the National Cancer Institute. As with pretty much everything that Patient Power does, the tone is upbeat and the content is informative.
There's some emphasis on understanding the pathways that Follicular Lymphoma cells take, and on targeting not just the cells themselves, but the processes that they go through in order to do their jobs. So the treatments try to disrupt these pathways. Again, Idelalisib/Zydelig, Ibrutinib, and Revlimid get mentioned.
They point out, too, that many newer treatments focus on Follicular Lymphoma as chronic, so instead of treating and then waiting to treat again, the treatments are taken every day, keeping the disease under control.
That brings up the question, of course, of which approach to take: try to get rid of it, or try to keep it under control.
CAR T cells get a mention here, too, as they did in the more general lymphoma video. (This video was also done at the iwNHL workshop; I'm guessing there was a session that focused on CAR T cells that got everyone excited.)
I'm going to give you Dr. Wilson's closing statement in full, because I think it's worth reading, even if you're going to watch the video, too:
I think I’d like to close with one comment is that when I first started in this field in the late 1980s, the average median time people lived with these is around 10 years, and we’re probably now up around 15 to 20 years. There have been concrete, very favorable changes. I also want to say that there are a fairly large segment of people that get therapy where the disease never comes back in their lifetime. Given the fact that the average age for the more common types is around 60, I think many people with current therapies can, I think, be very optimistic that these will not be life-threatening diseases, that they can live long enough, and sometimes the disease never coming back. I think that patients should be very optimistic and not see a diagnosis of these as being something that’s really going to be transforming their life because most people generally will live a very good, positive life with them.
That's pretty nice to see, isn't it? And while some of us started this journey well before the age of 60, I think that kind of statement gives us hope, too. Median Overall Survival statistics are complicated things, and it's worth thinking about them carefully. I've written about that statistic before, and why it doesn't mean much, but the important thing to remember for us younger folks is this: Median Overall Survival means that half the people survived for fewer than 20 years, but half survived for more. And there's no upper limit for those that survive for more than 20 years -- there's nothing that says we can't go for 50.
(Maybe I'll write about that some more sometime soon....)
Watch the video. It's just more reason to be positive.
Sunday, September 21, 2014
An Upbeat Expert on Lymphoma
Patient Power, the cancer education group, has a great video up called "An Expert's Upbeat Perspective on Progress in Lymphoma."
You'll have a hard time finding a better title than that. I challenge any lymphoma patient to read that link and somehow manage to resist clicking.
In case you have resisted so far (I admire your self control), the video is an interview from the 2014 International Workshop on Non-Hodgkin Lymphoma (iwNHL), a conference for Lymphoma experts. the very upbeat speaker is Dr. Myron Czuczman, who is head of Lymphoma/Myeloma department at Roswell Park Cancer Institute in Buffalo, New York.
Dr. Czuczuman gives us about 8 minutes of subdued excitement without taking a breath. The title of the video really is accurate -- you can feel how excited he is about all of this.
Some highlights for me:
He ends with a pretty interesting statement: "The number of therapies we have, in some ways, make it difficult, because getting the right combination, the right sequencing, which ones are best combined." This is a variation on something I wrote about a few days ago -- there are so many good possible treatments out there that we don't have the resources to try them all.
The solution, according to Dr. Czuczuman? Encouraging more patients to join clinical trials. He says we have lots of "building blocks" now, and the more we learn about them, the better foundation we have for developing more treatments in the future.
Another excellent video from Patient Power. Watch it for the excitement about the future from a lymphoma expert.
You'll have a hard time finding a better title than that. I challenge any lymphoma patient to read that link and somehow manage to resist clicking.
In case you have resisted so far (I admire your self control), the video is an interview from the 2014 International Workshop on Non-Hodgkin Lymphoma (iwNHL), a conference for Lymphoma experts. the very upbeat speaker is Dr. Myron Czuczman, who is head of Lymphoma/Myeloma department at Roswell Park Cancer Institute in Buffalo, New York.
Dr. Czuczuman gives us about 8 minutes of subdued excitement without taking a breath. The title of the video really is accurate -- you can feel how excited he is about all of this.
Some highlights for me:
- He discusses newer, targeted agents (like Revilmid, Ibrutinib, and Idelalisib/Zyedelig), and how they are different from traditional chemotherapy in the way they (mostly) spare healthy cells and cut down on side effects
- He remembers how monoclonal antibodies (like Rituxan) were once considered the 'magic bullet" that would lead to a cure (not exactly the magic bullet, but Rituxan is still pretty darn awesome)
- He mentions the "pizza delivery" system of using targeted agents to bring treatments directly to cancer cells
- He starts to mention -- and then pulls back from -- discussing CAR T cells, where the body's T cells are "re-educated" to find CD19 or CD20 proteins on lymphoma cells and then destroy them, so the body's own natural defense system is being called into play, rather than using an outside substance. that's still too far down the line to get excited about, but he's excited anyway.
He ends with a pretty interesting statement: "The number of therapies we have, in some ways, make it difficult, because getting the right combination, the right sequencing, which ones are best combined." This is a variation on something I wrote about a few days ago -- there are so many good possible treatments out there that we don't have the resources to try them all.
The solution, according to Dr. Czuczuman? Encouraging more patients to join clinical trials. He says we have lots of "building blocks" now, and the more we learn about them, the better foundation we have for developing more treatments in the future.
Another excellent video from Patient Power. Watch it for the excitement about the future from a lymphoma expert.
Wednesday, September 17, 2014
Immunotherapy
If you've been following the cancer research world in the last year or two, you know that Immunotherapy has been getting lots of people excited.
If you havcen't been following the cancer research world, and you don't know much about Immunotherapy, here's your chance!
MedicalXpress has a nice article on the basics of Immunotherapy -- how and why it works, and why it holds so much promise.
Basically, researchers have discovered that cancer happens because the body's immune system gets turned off, so it doesn't recognize cancer cells as things that don't belong. The research focuses on why that happens, and how to make it stop. Specifically, the research has so far been focused on proteins such as PD-1 (probably the best known) that appear on T-cells (part of the immune system that is supposed to attack invaders), and keep them from doing their job. The researchers have developed anti-PD-1 antibodies, which block PD-1 and allow T-cells to do their clean-up work.
It's fascinating research, really, and a very different approach than traditional chemo. Instead of killing the cancer cell, it tries to chip away at the different small things that a cancer cell needs to grow and survive. Much more targeted, and ideally leading to better responses with fewer side effects.
So while this article isn't about Follicular Lymphoma, it does provide a nice introduction (and, to me, a lot of hope) to the way cancer treatments are going. There is already work being done on immunotherapy in lymphoma; no doubt we'll see more in the future.
If you havcen't been following the cancer research world, and you don't know much about Immunotherapy, here's your chance!
MedicalXpress has a nice article on the basics of Immunotherapy -- how and why it works, and why it holds so much promise.
Basically, researchers have discovered that cancer happens because the body's immune system gets turned off, so it doesn't recognize cancer cells as things that don't belong. The research focuses on why that happens, and how to make it stop. Specifically, the research has so far been focused on proteins such as PD-1 (probably the best known) that appear on T-cells (part of the immune system that is supposed to attack invaders), and keep them from doing their job. The researchers have developed anti-PD-1 antibodies, which block PD-1 and allow T-cells to do their clean-up work.
It's fascinating research, really, and a very different approach than traditional chemo. Instead of killing the cancer cell, it tries to chip away at the different small things that a cancer cell needs to grow and survive. Much more targeted, and ideally leading to better responses with fewer side effects.
So while this article isn't about Follicular Lymphoma, it does provide a nice introduction (and, to me, a lot of hope) to the way cancer treatments are going. There is already work being done on immunotherapy in lymphoma; no doubt we'll see more in the future.
Saturday, September 13, 2014
Clinical Trials for Follicular Lymphoma
Someone put a link to my last post (on Duvelisib) on the Lymphoma.com/Web Magic NHL Forum. One of the responses came from Karl, who is President of Patients Against Lymphoma, the group that runs Lymphomation.org. Karl is someone I have great respect for, so when he talks about lymphoma, I tend to listen.
Karl's comment was that the news about Duvelisib is "encouraging but also worrisome. The number of competing investigational products increases the challenge of not only getting initial approval but also learning how to best use each of those that achieve that milestone."
Does this mean we might have too many arrows in the Follicular Lymphoma quiver?
I don't think so. But it does mean that having so many might make it hard to test all of them well, figure out the right doses, determine the best combinations of new and old treatments to attack the disease in the right way, and do it all with patient safety in mind.
In other words, we don't necessarily need fewer treatments. What we need is...well, I'll go back to Karl's words: "We must increase the enrollment rate in trials commensurate with the rate of new study drugs ... and hopefully identify new ways to evaluate efficacy in a shorter time."
I think that second part, identifying new ways to evaluate efficiency in a shorter time, is kind of starting to happen. We've seen new processes from the FDA that are meant to get treatments to us more quickly -- Fast Tracking, Breakthrough Designation, and Accelerated Approval -- that are already having an impact on blood cancers.
But maybe more importantly -- and something more under our control as patients -- is that first thing, increasing enrollment in trials.
I've mentioned this before, and it's worth mentioning again, especially in light of Karl's comment about Duvelisib. Treatments don't mean much if they can't get tested, and there's no one who can test them but us, Follicular Lymphoma patients.
I think we have an advantage when it comes to clinical trials. We have lots to choose from, for one thing. And many of us, even at the time when we need treatment, might have a slow-growing enough course of disease that we can afford to be part of something that might not work. In other words, we'd have time to try something else if the trial didn't go the way we liked.And one final advantage -- most of us have the time to plan out our next steps. We can look into trials whenever we like, and know which might be appropriate for us if and when the time comes.
So whatever our hesitation, trials should be something that we at least talk about with our oncologists. As for myself, I have not yet been a part of a trial (I have only had one type of treatment so far), but I check in regularly to know what's out there, and what I might be qualified for.
How do I do it? Easy. Go to Lymphomation.org's page on clinical trials. It will not only give you a way to search for trials by disease, by location, etc. It will also give you advice about what to look for, questions to ask, and other important background info.
So, thank you Karl,for your thought-provoking comment about new treatments, and for the reminder that we all really need to think carefully about what our own role might be in making sure those arrows make it into our quivers.
Karl's comment was that the news about Duvelisib is "encouraging but also worrisome. The number of competing investigational products increases the challenge of not only getting initial approval but also learning how to best use each of those that achieve that milestone."
Does this mean we might have too many arrows in the Follicular Lymphoma quiver?
I don't think so. But it does mean that having so many might make it hard to test all of them well, figure out the right doses, determine the best combinations of new and old treatments to attack the disease in the right way, and do it all with patient safety in mind.
In other words, we don't necessarily need fewer treatments. What we need is...well, I'll go back to Karl's words: "We must increase the enrollment rate in trials commensurate with the rate of new study drugs ... and hopefully identify new ways to evaluate efficacy in a shorter time."
I think that second part, identifying new ways to evaluate efficiency in a shorter time, is kind of starting to happen. We've seen new processes from the FDA that are meant to get treatments to us more quickly -- Fast Tracking, Breakthrough Designation, and Accelerated Approval -- that are already having an impact on blood cancers.
But maybe more importantly -- and something more under our control as patients -- is that first thing, increasing enrollment in trials.
I've mentioned this before, and it's worth mentioning again, especially in light of Karl's comment about Duvelisib. Treatments don't mean much if they can't get tested, and there's no one who can test them but us, Follicular Lymphoma patients.
I think we have an advantage when it comes to clinical trials. We have lots to choose from, for one thing. And many of us, even at the time when we need treatment, might have a slow-growing enough course of disease that we can afford to be part of something that might not work. In other words, we'd have time to try something else if the trial didn't go the way we liked.And one final advantage -- most of us have the time to plan out our next steps. We can look into trials whenever we like, and know which might be appropriate for us if and when the time comes.
So whatever our hesitation, trials should be something that we at least talk about with our oncologists. As for myself, I have not yet been a part of a trial (I have only had one type of treatment so far), but I check in regularly to know what's out there, and what I might be qualified for.
How do I do it? Easy. Go to Lymphomation.org's page on clinical trials. It will not only give you a way to search for trials by disease, by location, etc. It will also give you advice about what to look for, questions to ask, and other important background info.
So, thank you Karl,for your thought-provoking comment about new treatments, and for the reminder that we all really need to think carefully about what our own role might be in making sure those arrows make it into our quivers.
Wednesday, September 10, 2014
Duvelisib
Some news in the world of pharma companies in the last week that is probably relevant for Follicular Lymphoma patients: AbbVie, Inc. has announced a partnership with Infinity Pharmaceuticals to develop and commercialize Duvelisib, a kinase inhibitor. CNN, plus a whole lot of other news outlets, have details on the deal, and who is going to make money if things go well, which is great, but I really don't care.
What I do care about is that someone thinks they can make money off of Duvelisib, which means they'll probably put some effort into eventually making it available to us.
Duvelisib is, as I said, a kinase inhibitor. Protein kinases are enzymes that are necessary for certain functions to happen to cells. Kinase inhibitors block those enzymes from doing their job, and thus they keep cells from doing things they aren't supposed to do.
Duvelisib is, specifically, a PI3K inhibitor, which means it blocks an enzyme that is necessary for a cancer cell to grow and survive. There are actually several different types of PI3K inhibitors, and they block different parts of the enzyme. And there are a bunch of different PI3K inhibitors already developed or in development, including Idelalisib, so we have a pretty good idea that this type of treatment, in general, will work. (In fact, maybe it is the recent excitement about Idelalisib that pushed these companies to make a deal?)
So far, Duvelisib has been studied in a couple of phase 1 clinical trials, and one phase 2 trial involving refractory indolent NHL patients (which, I assume, includes some Follicular Lymphoma patients). Lymphoma Hub has some basic information about Duvelisib, including information about these clinical trials, as does Lymphomation.org, under its alternate name IPI-145.
Wall Street is excited. That seems like a good reason to keep an eye on this one.
What I do care about is that someone thinks they can make money off of Duvelisib, which means they'll probably put some effort into eventually making it available to us.
Duvelisib is, as I said, a kinase inhibitor. Protein kinases are enzymes that are necessary for certain functions to happen to cells. Kinase inhibitors block those enzymes from doing their job, and thus they keep cells from doing things they aren't supposed to do.
Duvelisib is, specifically, a PI3K inhibitor, which means it blocks an enzyme that is necessary for a cancer cell to grow and survive. There are actually several different types of PI3K inhibitors, and they block different parts of the enzyme. And there are a bunch of different PI3K inhibitors already developed or in development, including Idelalisib, so we have a pretty good idea that this type of treatment, in general, will work. (In fact, maybe it is the recent excitement about Idelalisib that pushed these companies to make a deal?)
So far, Duvelisib has been studied in a couple of phase 1 clinical trials, and one phase 2 trial involving refractory indolent NHL patients (which, I assume, includes some Follicular Lymphoma patients). Lymphoma Hub has some basic information about Duvelisib, including information about these clinical trials, as does Lymphomation.org, under its alternate name IPI-145.
Wall Street is excited. That seems like a good reason to keep an eye on this one.
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