My PALs at Lymphomation.org have put together a petition to the FDA. I hope you'll take a look at it and sign it.
The petition is called "Assessing Changes to the Patient's Quality of Life (QoL) is Integral to Interpreting the Efficacy of Study Treatments for Cancer."
Here's the background: In the United States, the FDA is in charge of evaluating cancer treatments (among other things) before they can be fully available to patients. They make those decisions based on the data that researchers give them. In order for a treatment to be approved, the data need to show that it is better than what is already available -- it helps more people, or it has fewer side effects.
The petition asks the FDA to consider some additional information: how a treatment affects a patient's Quality of Life, or QoL.
QoL would be measured by Patient-Reported Outcomes, or PROs. According to the petition, "PROs are reports of the status of a patient's health condition that come directly from the patient, without interpretation of the patient's response by a clinician or anyone else."
In other words, FDA approval would take into account not just what the researchers have to report, but also what the patients have to report -- directly, without the researchers interpreting what it means. It would mean patients have a much greater voice in the process.
That would have huge implications. The FDA would hear patient voices, but that information (as the petition points out) would also help other patients decide whether or not a treatment is right for them, and help oncologists make those decisions with the patients.
A big issue (again, as the petition points out) has to do with PFS (Progression Free Survival). In a disease like Follicular Lymphoma, most treatments do not seem to show an improvement over other treatments when it comes to Overall Survival. CHOP, Bendamustine, with or without Maintenance -- none of them really show a longer Overall Survival for FL patients (though individual patients might benefit).
But some of them do show a PFS benefit -- some treatments work well enough to allow patients to go a long time between treatments. Of course, that comes at a cost -- there may be harsher side effects. And those side effects might result in a lower Quality of Life.
And, of course, that's where the PROs come in. Patient-Reported Outcomes can help other patients make a decision. Is is better to have more frequent treatments with relatively mild side effects and a good QoL (for example, Rituxan every couple of years), or less frequent treatments with harder side effects and a lower QoL (for example, CHOP, but no other treatment for 10 years).
Having information from other patients might make that easier to decide.
And that information would be easier to find if the FDA required it.
Again, you can read the petition here. I hope you'll take a look. And then I hope you'll go here and sign.
Thanks for considering it.
Monday, April 29, 2019
Thursday, April 25, 2019
Still Finding Hope Among the Thorns of Cancer
My wife and I have been doing a lot of gardening over the last month or so.
It's been nice. We watched a lot of Big Dreams, Small Spaces over the winter, and it inspired us a lot. I've been growing vegetables for years, but we're taking on a bunch of other projects.
One of them was clearing out old growth from the blackberry patch that popped up a few years ago, thanks to a squirrel that buried a berry in our shade garden. We've been enjoying those blackberries for a while, despite getting our arms scratched up by the thorns.
I wrote about that blackberry patch a year ago. The old shade garden had some daffodils planted in it, and when they come up in spring, it gives me some things to think about.
The daffodils are popping up now, so I'm sharing the piece that I wrote last year for The Mighty.
The flowers among the thorns had its own lessons.
Maybe clearing out some of those thorns has a lesson, too?
********************
Finding Hope Among the Thorns of Cancer
We can learn a lot from flowers.
About 10 years ago, I was diagnosed with follicular lymphoma, a slow-growing but incurable blood cancer.
It was about that same time, 10 years ago, that spring became my favorite season.
As a native New Englander, I have always loved fall. Beautiful foliage. Cool weather. Long sleeves. Sweet apples. Fall is a great time of year.
But when I became a cancer patient, something in me starting to love the spring. Snow melts. Brown things turn green. The sun shines a little brighter. Long sleeves come off on warm afternoons.
It was about that same time, 10 years ago, that a neighbor took down an old, rotting tree. Suddenly, there was enough sunlight in a dark corner of my backyard that I was inspired to plant some spring bulbs. Crocus. Hyancinth. Tulips.
And, of course, daffodils.
Daffodils are the cancer patients’ flower. They symbolize hope. They bring a warmth and brightness that signals spring, and all that comes with it – especially the promise of new beginnings.
That sunny patch gave me something to look forward to every spring.
And then, about four years ago, I slipped on some ice and badly injured my shoulder. (Even as a native New Englander, I’m not a big fan of winter.) I spent that spring recovering from surgery, my arm in a sling, with physical therapy three times a week through the summer.
My sunny patch suffered. Weeds took over, and squirrels dug up my spring bulbs for food after a particularly rough winter. My little patch was never the same again.
But squirrels giveth, even as they taketh away.
By fall, my bulb patch was infested with long thorny stems where tulips and hyacinth used to live.
The next spring, those thorny green stems were covered in small white flowers.
By August, those white flowers were replaced by sweet blackberries.
Apparently, while eating my bulbs, a squirrel had dropped some blackberries and gotten me started on a new hobby – making blackberry jam out of all the fruit I was soon harvesting.
And the squirrel was also kind enough to leave behind one spring bulb for me.
It was a daffodil, of course.
As a cancer patient, the lessons are obvious to me:
First, even in what seems like the greatest despair, you can find hope. That photo above was taken a week ago. Like a daffodil poking up through the thickest thorns, hope manages to survive and give us something beautiful.
And second, gifts sometimes come from the strangest places. Those annoying squirrels took away my bulbs but left me blackberries. Sometimes it’s hard to see, but even cancer can bring us gifts. Maybe we take better care of ourselves. Or pay attention to things we ignored before.
Or appreciate small things, like the sweet taste of a sun-warmed blackberry.
It's been nice. We watched a lot of Big Dreams, Small Spaces over the winter, and it inspired us a lot. I've been growing vegetables for years, but we're taking on a bunch of other projects.
One of them was clearing out old growth from the blackberry patch that popped up a few years ago, thanks to a squirrel that buried a berry in our shade garden. We've been enjoying those blackberries for a while, despite getting our arms scratched up by the thorns.
I wrote about that blackberry patch a year ago. The old shade garden had some daffodils planted in it, and when they come up in spring, it gives me some things to think about.
The daffodils are popping up now, so I'm sharing the piece that I wrote last year for The Mighty.
The flowers among the thorns had its own lessons.
Maybe clearing out some of those thorns has a lesson, too?
********************
Finding Hope Among the Thorns of Cancer
We can learn a lot from flowers.
About 10 years ago, I was diagnosed with follicular lymphoma, a slow-growing but incurable blood cancer.
It was about that same time, 10 years ago, that spring became my favorite season.
As a native New Englander, I have always loved fall. Beautiful foliage. Cool weather. Long sleeves. Sweet apples. Fall is a great time of year.
But when I became a cancer patient, something in me starting to love the spring. Snow melts. Brown things turn green. The sun shines a little brighter. Long sleeves come off on warm afternoons.
It was about that same time, 10 years ago, that a neighbor took down an old, rotting tree. Suddenly, there was enough sunlight in a dark corner of my backyard that I was inspired to plant some spring bulbs. Crocus. Hyancinth. Tulips.
And, of course, daffodils.
Daffodils are the cancer patients’ flower. They symbolize hope. They bring a warmth and brightness that signals spring, and all that comes with it – especially the promise of new beginnings.
That sunny patch gave me something to look forward to every spring.
And then, about four years ago, I slipped on some ice and badly injured my shoulder. (Even as a native New Englander, I’m not a big fan of winter.) I spent that spring recovering from surgery, my arm in a sling, with physical therapy three times a week through the summer.
My sunny patch suffered. Weeds took over, and squirrels dug up my spring bulbs for food after a particularly rough winter. My little patch was never the same again.
But squirrels giveth, even as they taketh away.
By fall, my bulb patch was infested with long thorny stems where tulips and hyacinth used to live.
The next spring, those thorny green stems were covered in small white flowers.
By August, those white flowers were replaced by sweet blackberries.
Apparently, while eating my bulbs, a squirrel had dropped some blackberries and gotten me started on a new hobby – making blackberry jam out of all the fruit I was soon harvesting.
And the squirrel was also kind enough to leave behind one spring bulb for me.
It was a daffodil, of course.
As a cancer patient, the lessons are obvious to me:
First, even in what seems like the greatest despair, you can find hope. That photo above was taken a week ago. Like a daffodil poking up through the thickest thorns, hope manages to survive and give us something beautiful.
And second, gifts sometimes come from the strangest places. Those annoying squirrels took away my bulbs but left me blackberries. Sometimes it’s hard to see, but even cancer can bring us gifts. Maybe we take better care of ourselves. Or pay attention to things we ignored before.
Or appreciate small things, like the sweet taste of a sun-warmed blackberry.
Monday, April 22, 2019
Top Selling Cancer Treatments of 2018
I have a Google Alert set for Follicular Lymphoma. Every day, sometime in mid-morning, I get an email from Google with a list of things that were written about Follicular Lymphoma in the last day or two.
(I'd be lying if I told you I didn't get a thrill from having something I wrote appear on the list. Kind of cool.)
A large number of the articles I receive come from financial web sites that giving an evaluation of trends. They are meant for investors who are looking for advice about where they might make money. So the articles will name pharma companies that look like they will have a treatment approved, and thus make a lot of money, for the company itself and for its investors.
I have such mixed feelings about emails like this. On the one hand, they seem kind of predatory -- someone is making money off of me being sick.
On the other hand, they are strangely hopeful -- someone is making money off of me becoming well.
I had those same mixed feelings when I say this piece published today: "Top 10 Best-Selling Cancer Drugs of 2018" from Genetic Engineering and Biotechnology News.
It's a fascinating list, and it includes some familiar names.
#8 is Neulasta. This isn't a treatment for cancer, but rather a treatment for a common side effect of many treatments. It helps the body make white blood cells, a type of immune cell that gets wiped out by many cancer treatments. Last year, it had $4.684 billion in sales (down 0.7% from 2017).
#7 is Ibrutinib (also known as Imbruvica). It's a BTK inhibitor -- it sticks to a protein that cencer cells need to grow and live, and keeps that from happening. It is a major treatment for CLL, another slow-growing blood cancer. It doesn't do too well with Follicular Lymphoma on its own, but there are still some trials out there that combine it with other things. Last year, it had $6.205 billion (up 38.9% from the year before).
#6 is Rituxan (Rituximab or MabThera). My old pal! Being this high on the list makes sense. Rituxan is the bacon of cancer treatments -- it makes everything better. Because it's such an important part of so many treatment combinations, it's no surprise that it had $6.750 billion in sales last year (though that was down 7.5% -- some biosimilars are probably eating into those sales).
And #1 is Revlimid, also known as Lenalidomide, half of the R-Squared duo. It had $9.685 billion in sales last year, up 18.3%, and is an important treatment for a bunch of different blood cancers, and could get an FDA approval for FL later this year as part of R-squared.
Just looking at Rituxan and Revlimid, that's over $16 billion in sales in 2018. Cancer treatments overall cost about $50 billion in the USA in 2018, and another $60 billion in the rest of the world. That's a lot of money.
But (says my conflicted mind), that's also a lot of people who are still alive.
I certainly think the cost of my Rituxan treatments was worth it.
The Genetic Engineering and Biotechnology News piece also quotes from some participants at a recent event that focused on the cost of cancer treatments. They do a good job, but they're too high, and something needs to be done to bring down costs.
One answer might be value-based pricing. With this strategy, the cost is tied to the success of the treatment. Something that cures a cancer will be expensive. Something that gives a long remission will be less expensive. Something that didn't work will not cost much. There's some incentive there to figure out which treatments will work for which patients, rather than guessing and hoping for the best (though I think most health professionals work hard at this already).
I'm still conflicted. I guess I try to focus on the good that a treatment can do, but I can't help think of the cost. For now, I take comfort in knowing that there are a bunch of treatments out there for me when I need one.
I'll figure out how to pay for it when the time comes.
(I'd be lying if I told you I didn't get a thrill from having something I wrote appear on the list. Kind of cool.)
A large number of the articles I receive come from financial web sites that giving an evaluation of trends. They are meant for investors who are looking for advice about where they might make money. So the articles will name pharma companies that look like they will have a treatment approved, and thus make a lot of money, for the company itself and for its investors.
I have such mixed feelings about emails like this. On the one hand, they seem kind of predatory -- someone is making money off of me being sick.
On the other hand, they are strangely hopeful -- someone is making money off of me becoming well.
I had those same mixed feelings when I say this piece published today: "Top 10 Best-Selling Cancer Drugs of 2018" from Genetic Engineering and Biotechnology News.
It's a fascinating list, and it includes some familiar names.
#8 is Neulasta. This isn't a treatment for cancer, but rather a treatment for a common side effect of many treatments. It helps the body make white blood cells, a type of immune cell that gets wiped out by many cancer treatments. Last year, it had $4.684 billion in sales (down 0.7% from 2017).
#7 is Ibrutinib (also known as Imbruvica). It's a BTK inhibitor -- it sticks to a protein that cencer cells need to grow and live, and keeps that from happening. It is a major treatment for CLL, another slow-growing blood cancer. It doesn't do too well with Follicular Lymphoma on its own, but there are still some trials out there that combine it with other things. Last year, it had $6.205 billion (up 38.9% from the year before).
#6 is Rituxan (Rituximab or MabThera). My old pal! Being this high on the list makes sense. Rituxan is the bacon of cancer treatments -- it makes everything better. Because it's such an important part of so many treatment combinations, it's no surprise that it had $6.750 billion in sales last year (though that was down 7.5% -- some biosimilars are probably eating into those sales).
And #1 is Revlimid, also known as Lenalidomide, half of the R-Squared duo. It had $9.685 billion in sales last year, up 18.3%, and is an important treatment for a bunch of different blood cancers, and could get an FDA approval for FL later this year as part of R-squared.
Just looking at Rituxan and Revlimid, that's over $16 billion in sales in 2018. Cancer treatments overall cost about $50 billion in the USA in 2018, and another $60 billion in the rest of the world. That's a lot of money.
But (says my conflicted mind), that's also a lot of people who are still alive.
I certainly think the cost of my Rituxan treatments was worth it.
The Genetic Engineering and Biotechnology News piece also quotes from some participants at a recent event that focused on the cost of cancer treatments. They do a good job, but they're too high, and something needs to be done to bring down costs.
One answer might be value-based pricing. With this strategy, the cost is tied to the success of the treatment. Something that cures a cancer will be expensive. Something that gives a long remission will be less expensive. Something that didn't work will not cost much. There's some incentive there to figure out which treatments will work for which patients, rather than guessing and hoping for the best (though I think most health professionals work hard at this already).
I'm still conflicted. I guess I try to focus on the good that a treatment can do, but I can't help think of the cost. For now, I take comfort in knowing that there are a bunch of treatments out there for me when I need one.
I'll figure out how to pay for it when the time comes.
Thursday, April 18, 2019
Updates on Follicular Lymphoma [Video]
Found a nice video of a talk from the 2019 Great Debates and Updates in Hematologic Malignancies meeting. The video is called "Update on Upfront and Maintenance Therapy in Follicular Lymphoma," and the person speaking is Dr. John P. Leonard of Weill Cornell (and certified Follicular Lymphoma Rock Star).
The talk is aimed at other doctors -- you can tell that by the way Dr. Leonard speaks ("If you are considering certain treatments for your patients...."). It's also pretty thick -- lots of medical terminology.
Dr. Leonard's purpose is to discuss how he typically treats certain types of Follicular Lymphoma patients, and talks about his decisions in terms of recent clinical trials in FL. Sometimes he agrees with what the trail suggests an oncologist should do, and sometimes he doesn't.
I like looking at videos like this (or reading articles that do the same thing). It gives me a good sense of what a top FL doctor is thinking, and how recent research is influencing his decisions. It makes me feel like I'm up-to-date on what's happening with my disease.
He says he always looks at the information he has about the patients, and then divides them into three groups. He handles treatment decisions differently for those groups.
The first group is patients with limited stage or localized disease -- usually stage 1 or 2. For these patients, watching and waiting might be fine. There are some patients who could actually be cured with radiation. He comments on the idea of "curing" patients. He says his thinking on this is "evolving." He looks at a 10 year study of radiation versus CVP chemotherapy. The chemo patients had a better Progression Free Survival, but the Overall Survival was about the same for both groups. His personal approach tends to avoid chemo with this group: watch and wait when possible, try radiation when necessary, maybe try Rituxan. But he also tries not to put too much emphasis on a "cure." For some patients, they can get a "functional cure" -- not an actual cure, but also not needing treatment ever again, especially if they are older.
The second group is the advanced stage, low tumor burden group -- stage 3 or 4, but without symptoms. (This is pretty much where I was at diagnosis.) He likes Rituxan for this group (again, this is how I was treated.) Watching and waiting is an option, too. But like the first group, lots of treatments have different PFS, but the OS. In other words, more aggressive treatments might mean more time between treatments, but they won't make patients live longer overall. He talks about Maintenance with this group, too. The RESORT trial showed that, for patients who only had Rituxan as a treatment, Rituxan Maintenance (regularly scheduled doses of Rituxan after the first doses) doesn't help any more than just waiting until Rituxan is necessary.
He thinks watching and waiting is fine for this group, too, and he likes to take that approach, even for a little while, because he thinks it helps the patient get used to the idea of having a chronic cancer, one they may need to deal with for a long time. He avoids chemo if he can, though if a patient needs it, he certainly gives it -- and the patient is OK with the trade-offs that come with longer PFS.
For the third group, advanced stage, high tumor burden, he considers chemo. He usually goes with Bendmustine over CHOP -- same OS, but usually fewer side effects.
Again, the Maintenance issue comes up here, though the PRIMA trial found that Maintenance improves PFS but not OS (that is definitely a theme).
He also talk about the GALLIUM study, which looked at chemo + Rituxan versus chemo + Obinutuzumab, both followed by maintenance. No OS difference. The O group had longer PFS but the R group had fewer side effects.
He also discusses the RELEVANCE study, which looked at R-squared (Rituxan + Revlimid) versus R+chemo. This was the first study to show a non-chemo option doing as well as chemo. They had different side effects, so it's a matter of thinking about which option is based for each patient.
He also thinks that, for patients with fairly low risk, PET scans should be avoided as much as possible. An exam, or the patient's own noticing of symptoms, are just as effective, but without ther radiation.
Finally, Dr. Leonard thinks it's important to remember a "return to normalcy" -- because many of us will live with FL for a long time, it's good for us to have long periods of feeling and living "normally."
There are a lot of clinical trial results discussed here, and a lot of medical terms. In a lot of ways, they don't really matter. I mean, if you're a Cancer Nerd like me, sure, they matter, and it's fun watching the video while also typing notes and smiling when you realize that you know what he means when he uses a big word.
But more important are the general lessons that come out of this.
Like I said, Dr. Leonard is a Follicular Lymphoma Rock Star. And that's not just because he has a list of research publications in medical journals that would sink a small boat.
It's because, as he is talking to this group of doctors about research, he is constantly reminding them to think about their patients, talk to their patients, listen to their patients, and make decisions with their patients.
Follicular Lymphoma is frustrating in some ways because there is no "best" way to do things. we have lots of options. Many of them come down to Quality of Life. Do we want a treatment that will give us more time until the next treatment? And if we do, are we willing to put up with the side effects that come with it? That's a decision that we all have to make ourselves, but we can't make it without an honest, informed discussion with our doctor.
I like to think all doctors would be that way with their patients. And this is clearly a talk that's given to a bunch of clinicians, doctors who treat patients, rather than a bunch of researchers. But it's nice to hear a discussion of research where the speaker is always reminding other doctors about their patients. It's very Rock Star of him.
The talk is aimed at other doctors -- you can tell that by the way Dr. Leonard speaks ("If you are considering certain treatments for your patients...."). It's also pretty thick -- lots of medical terminology.
Dr. Leonard's purpose is to discuss how he typically treats certain types of Follicular Lymphoma patients, and talks about his decisions in terms of recent clinical trials in FL. Sometimes he agrees with what the trail suggests an oncologist should do, and sometimes he doesn't.
I like looking at videos like this (or reading articles that do the same thing). It gives me a good sense of what a top FL doctor is thinking, and how recent research is influencing his decisions. It makes me feel like I'm up-to-date on what's happening with my disease.
He says he always looks at the information he has about the patients, and then divides them into three groups. He handles treatment decisions differently for those groups.
The first group is patients with limited stage or localized disease -- usually stage 1 or 2. For these patients, watching and waiting might be fine. There are some patients who could actually be cured with radiation. He comments on the idea of "curing" patients. He says his thinking on this is "evolving." He looks at a 10 year study of radiation versus CVP chemotherapy. The chemo patients had a better Progression Free Survival, but the Overall Survival was about the same for both groups. His personal approach tends to avoid chemo with this group: watch and wait when possible, try radiation when necessary, maybe try Rituxan. But he also tries not to put too much emphasis on a "cure." For some patients, they can get a "functional cure" -- not an actual cure, but also not needing treatment ever again, especially if they are older.
The second group is the advanced stage, low tumor burden group -- stage 3 or 4, but without symptoms. (This is pretty much where I was at diagnosis.) He likes Rituxan for this group (again, this is how I was treated.) Watching and waiting is an option, too. But like the first group, lots of treatments have different PFS, but the OS. In other words, more aggressive treatments might mean more time between treatments, but they won't make patients live longer overall. He talks about Maintenance with this group, too. The RESORT trial showed that, for patients who only had Rituxan as a treatment, Rituxan Maintenance (regularly scheduled doses of Rituxan after the first doses) doesn't help any more than just waiting until Rituxan is necessary.
He thinks watching and waiting is fine for this group, too, and he likes to take that approach, even for a little while, because he thinks it helps the patient get used to the idea of having a chronic cancer, one they may need to deal with for a long time. He avoids chemo if he can, though if a patient needs it, he certainly gives it -- and the patient is OK with the trade-offs that come with longer PFS.
For the third group, advanced stage, high tumor burden, he considers chemo. He usually goes with Bendmustine over CHOP -- same OS, but usually fewer side effects.
Again, the Maintenance issue comes up here, though the PRIMA trial found that Maintenance improves PFS but not OS (that is definitely a theme).
He also talk about the GALLIUM study, which looked at chemo + Rituxan versus chemo + Obinutuzumab, both followed by maintenance. No OS difference. The O group had longer PFS but the R group had fewer side effects.
He also discusses the RELEVANCE study, which looked at R-squared (Rituxan + Revlimid) versus R+chemo. This was the first study to show a non-chemo option doing as well as chemo. They had different side effects, so it's a matter of thinking about which option is based for each patient.
He also thinks that, for patients with fairly low risk, PET scans should be avoided as much as possible. An exam, or the patient's own noticing of symptoms, are just as effective, but without ther radiation.
Finally, Dr. Leonard thinks it's important to remember a "return to normalcy" -- because many of us will live with FL for a long time, it's good for us to have long periods of feeling and living "normally."
There are a lot of clinical trial results discussed here, and a lot of medical terms. In a lot of ways, they don't really matter. I mean, if you're a Cancer Nerd like me, sure, they matter, and it's fun watching the video while also typing notes and smiling when you realize that you know what he means when he uses a big word.
But more important are the general lessons that come out of this.
Like I said, Dr. Leonard is a Follicular Lymphoma Rock Star. And that's not just because he has a list of research publications in medical journals that would sink a small boat.
It's because, as he is talking to this group of doctors about research, he is constantly reminding them to think about their patients, talk to their patients, listen to their patients, and make decisions with their patients.
Follicular Lymphoma is frustrating in some ways because there is no "best" way to do things. we have lots of options. Many of them come down to Quality of Life. Do we want a treatment that will give us more time until the next treatment? And if we do, are we willing to put up with the side effects that come with it? That's a decision that we all have to make ourselves, but we can't make it without an honest, informed discussion with our doctor.
I like to think all doctors would be that way with their patients. And this is clearly a talk that's given to a bunch of clinicians, doctors who treat patients, rather than a bunch of researchers. But it's nice to hear a discussion of research where the speaker is always reminding other doctors about their patients. It's very Rock Star of him.
Saturday, April 13, 2019
Living In-Between
I want to share something I wrote for Lymphoma News Today. It's called "Living In-Between."
In the piece, I tell a story about a beer. At this point, it's a 15 year old beer, still unopened.
And it's become a kind of symbol for me. It makes me think a lot about what I call "living in-between" -- not really being cured, but not being in treatment. It's a state of mind that a lot of us with Follicular Lymphoma live in.
I link to another article that I've linked to before -- "Time for a New cancer Paradigm" by FL patient Terrilyn McCormick. I think Terrilyn does a great job of describing that need for a new way of thinking.
It's not easy. We'd like to be completely well. But we're not. But most likely, we're grateful that we're in the place we are, still able to do at least some of the things that we'd like to do.
I say it a lot -- Follicular Lymphoma is an emotional disease as much as a physical disease. Even as many of us don't have physical symptoms, we still have plenty of emotional symptoms, things that affect out mental health. It helps to recognize that, I think. We all feel many of the same things. We share many of the same worries and fears. I think it's vital for us to remember that, and I hope other FL patients take some comfort when they find that out.
So find your own ways of "living in-between." But, especially, remember that you don't need to do it alone. It's OK to rely on caregivers for help. But it's OK -- more than OK -- to find a community, online or face-to-face -- that can help you, too.
In the piece, I tell a story about a beer. At this point, it's a 15 year old beer, still unopened.
And it's become a kind of symbol for me. It makes me think a lot about what I call "living in-between" -- not really being cured, but not being in treatment. It's a state of mind that a lot of us with Follicular Lymphoma live in.
I link to another article that I've linked to before -- "Time for a New cancer Paradigm" by FL patient Terrilyn McCormick. I think Terrilyn does a great job of describing that need for a new way of thinking.
It's not easy. We'd like to be completely well. But we're not. But most likely, we're grateful that we're in the place we are, still able to do at least some of the things that we'd like to do.
I say it a lot -- Follicular Lymphoma is an emotional disease as much as a physical disease. Even as many of us don't have physical symptoms, we still have plenty of emotional symptoms, things that affect out mental health. It helps to recognize that, I think. We all feel many of the same things. We share many of the same worries and fears. I think it's vital for us to remember that, and I hope other FL patients take some comfort when they find that out.
So find your own ways of "living in-between." But, especially, remember that you don't need to do it alone. It's OK to rely on caregivers for help. But it's OK -- more than OK -- to find a community, online or face-to-face -- that can help you, too.
Tuesday, April 9, 2019
Cancer Vaccine
It seems like there's a hot "cancer story" in the news every few months. The most recent one is about lymphoma.
The news stories are about an article in Nature Medicine called "Systemic Clinical Tumor Regressions and Potentiation of PD1 Blockade with In Situ Vaccination." Like many of the exciting new treatments from the past few years, this one is an immunotherapy.
In general, immunotherapies try to use the body's immune system to kill cancer cells. The immune system is usually very good at finding invaders (like bacteria and viruses) and killing them off. One of the big problems with cancer is that it's not really an invader -- it's the body's own cells that have gone rogue. Cancer cells also play some neat tricks, turning switches on and off that keep the cells from dying. All of those things make it really hard for the body's natural defense -- its immune system -- to do its job on those cells.
When immunotherapy works, it's an amazing thing. Take CAR-T, for example. The body's T Cells, part of the immune system, are removed and then changed so they recognize the cancer cells. What's really amazing is that it keeps on working. Chemotherapy gets processed by the body and then you need more. But T Cells multiply, and travel around the body, so when they find an invader that they recognize, they attack (and then signal the body to create more T cells to look for the invader). It's beautiful.
With this new immunotherapy, that same process is at work. Researchers created an "in situ" vaccination. That means they found the original place where the cancer started, and put some immune system stimulants right at that place. The three stimulants are "Flt3L, radiotherapy, and a TLR3 agonist." Together, they signaled dendritic cells, a kind of immune cell, to tell some T Cells to find particular cancer cells. Then the T Cells traveled through the body and looked for more of those cancer cells and destroyed them.
The study being described was a small trial involving 11 patients with indolent lymphoma (9 of them had Follicular Lymphoma). Of the 11, two had a Complete Response (they were both FL grade 1/2, stage 3a -- my exact diagnosis). Six had a partial response, and three had stable disease. Common side effects were fever and flu-like symptoms.
Because the immune cells travel to other parts of the body, the results have led to new studies involving solid cancers. That makes sense -- the treatments can be placed into the original tumors and then the immune cells can potentially take care of tumors that have popped up in other parts of the body.
The headlines are very exciting. Most say it is "promising,"though I aw one that said it could be a "game-changer." People in online groups are using those headlines to start getting a little too excited about this.
I like the word "promising" in all of those headlines. That's accurate. It's a very small study that resulted in 2 people getting Complete Responses. I'm not sure I'd go with "game-changer" just yet. Maybe after a phase III study with a couple of hundred people and more CRs, but not just yet.
It's a good reminder to balance hope and realism. As Follicular Lymphoma patients, we have a lot to be hopeful about. There are some very exciting things happening in research these days. And we're fortunate to have a bunch of pretty good treatments available to us right now, which could keep us in good shape until those really exciting treatments are shown to be as good as some of the hype.
(This is a good time to reminder everyone, too, that none of those exciting treatments can come to us without people to participate in clinical trials. So please consider the possibility if the time comes.)
Stay hopeful.
The news stories are about an article in Nature Medicine called "Systemic Clinical Tumor Regressions and Potentiation of PD1 Blockade with In Situ Vaccination." Like many of the exciting new treatments from the past few years, this one is an immunotherapy.
In general, immunotherapies try to use the body's immune system to kill cancer cells. The immune system is usually very good at finding invaders (like bacteria and viruses) and killing them off. One of the big problems with cancer is that it's not really an invader -- it's the body's own cells that have gone rogue. Cancer cells also play some neat tricks, turning switches on and off that keep the cells from dying. All of those things make it really hard for the body's natural defense -- its immune system -- to do its job on those cells.
When immunotherapy works, it's an amazing thing. Take CAR-T, for example. The body's T Cells, part of the immune system, are removed and then changed so they recognize the cancer cells. What's really amazing is that it keeps on working. Chemotherapy gets processed by the body and then you need more. But T Cells multiply, and travel around the body, so when they find an invader that they recognize, they attack (and then signal the body to create more T cells to look for the invader). It's beautiful.
With this new immunotherapy, that same process is at work. Researchers created an "in situ" vaccination. That means they found the original place where the cancer started, and put some immune system stimulants right at that place. The three stimulants are "Flt3L, radiotherapy, and a TLR3 agonist." Together, they signaled dendritic cells, a kind of immune cell, to tell some T Cells to find particular cancer cells. Then the T Cells traveled through the body and looked for more of those cancer cells and destroyed them.
The study being described was a small trial involving 11 patients with indolent lymphoma (9 of them had Follicular Lymphoma). Of the 11, two had a Complete Response (they were both FL grade 1/2, stage 3a -- my exact diagnosis). Six had a partial response, and three had stable disease. Common side effects were fever and flu-like symptoms.
Because the immune cells travel to other parts of the body, the results have led to new studies involving solid cancers. That makes sense -- the treatments can be placed into the original tumors and then the immune cells can potentially take care of tumors that have popped up in other parts of the body.
The headlines are very exciting. Most say it is "promising,"though I aw one that said it could be a "game-changer." People in online groups are using those headlines to start getting a little too excited about this.
I like the word "promising" in all of those headlines. That's accurate. It's a very small study that resulted in 2 people getting Complete Responses. I'm not sure I'd go with "game-changer" just yet. Maybe after a phase III study with a couple of hundred people and more CRs, but not just yet.
It's a good reminder to balance hope and realism. As Follicular Lymphoma patients, we have a lot to be hopeful about. There are some very exciting things happening in research these days. And we're fortunate to have a bunch of pretty good treatments available to us right now, which could keep us in good shape until those really exciting treatments are shown to be as good as some of the hype.
(This is a good time to reminder everyone, too, that none of those exciting treatments can come to us without people to participate in clinical trials. So please consider the possibility if the time comes.)
Stay hopeful.
Friday, April 5, 2019
Predicting Transformation
This work is about a month old, but it deals with an important topic: Transformation.
As most of you know, Follicular Lymphoma is (as a doctor once told me) "genetically unstable," and can transform from a slow-growing cancer into an aggressive one. Based on my conversations with other FL patients, Transformation is probably one of our biggest fears. Slow-growing FL is something a lot of us can learn to live with. Fast-growing FL is a whole different thing, with lower survival rates and bigger questions to answer.
One of the scariest things about Transformation is that it is unpredictable. Researchers still haven't found any reliable biomarkers -- something in the cancer cells that can signal that Transformation is probably going to happen before it does.
The latest attempt to find some way to predict Transformation comes from the Spanish Lymphoma Oncology Group. They published a piece in Hematological Oncology about a month ago called "Transformed Follicular Lymphoma in the Rituximab Era: A Report from the Spanish Lymphoma Oncology Group."
The article describes their research in attempting to find ways to predict which patients will transform and which won't.
There's some very interesting stuff in the article, but it's important to give a reminder: Predictions are not set in stone. They are good guesses based on evidence, and they don't always come true. I predicted a bad year for my Boston Red Sox last year, based on theri weak bullpen. My prediction was wrong. It works for cancer, too; don't read this as predicting that you will definitely transform because of some factors.
The study looked at 975 patients from Spain who were diagnosed with Follicular Lymphoma between 1990 and 2016. They found that 64 of those patients transformed. The transformation rate within 5 years was 7.3%.
That's low. In the last 11+ years, I've seen transformation rates as high as 50%. Most of the studies I've seen from the last few years puts the rate at about 10 to 15%. The researchers here say that it's usually given at about 10%. Whatever number it is, 7.3% is on the low side.
As for when transformation took place, the median time was 24months. So half of patients who transformed did so within 2 years of being diagnosed, and half after 2 years. About 30% of them transformed within the first year. And this is interesting: there were no cases of anyone transforming after 14 years. (I find that interesting because I'm in my 12th year after diagnosis. I'd seen somewhere, a while ago, that there were no transformations after 15 years. Happy to have that extra year.....)
So what kind of predictions could they make? Well:
- Patients with elevated LDH levels were more likely to transform.
- Patients with Intermediate or High FLIPI scores were more likely to transform.
- Patients with B symptoms were more likely to transform.
- Patients who watched and waited, or who had treatment that didn't include Rituxan or an anthracycline-based treatment (like CHOP or Bendamustine) more more likely to transform.
OK. Let's move on.
LDH (Lactate dehydrogenase) are very common in blood tests for FL patients. It's a way of measuring cell damage, and if it goes up, it's a sign that FL is getting more aggressive. It's also potentially a sign that you went to the gym before you had a blood test, so don't do that. This one is not a surprise. Elevated LDH is usually something that concerns an oncologist, but it's not an answer in itself.
FLIPI (Follicular Lymphoma International Prognostic Index) is controversial. It measures a few different factors (age, LDH level, stage of disease, number of sites on the body with active lymph nodes, and hemoglobin levels) and gives you a score from 1 to 5. In this study, anything over a 2 is a potential predictor. It's not a great predictor of anything on its own. Read more about it here, at Lymphomation.org.
(As I'm writing this, I took an online quiz that very helpfully told me I am an Intermediate Risk, and that the 10 year Overall Survival for people like me is 50%. That's an awful quiz. Don't take it if you come across it. FLIPI is an outdated measurement, and attempts to refine it are still controversial.)
B symptoms are physical signs that an FL is aggressive, so this one isn't a surprise, either. They include things like fever and chills, night sweats that are so bad you have to change the sheets, unexplained fatigue, unexplained weight loss, and sometimes itchiness. They are important because you'll notice them, rather than the doctor noticing something in bloodwork or on a scan.
Finally, there are those patients who watched and waited (which is a good chunk of us, including me) or didn't have Rituxan or anthracyclene-based treatments. Once again, these are trends, not answers.
I'm not trying to dismiss this study and say that any of those factors don't matter. But as a patient, I know what it means to read something and assume the worst. I just want to make clear that transformation is a serious thing, but predictors don't mean your fate is sealed.
I look at myself as an example: I did have elevated LDH once, which concerned my oncologist. He re-tested, and it was back down. Something other than aggressive cancer was the cause. My FLIPI score is a 2. I'm an intermediate. I watched and waited, so I'm in that group that has a higher risk of transformation.
But I haven't transformed. It's still something that concerns me, for sure. I take those predictors as things to watch out for, not as guarantees.
And to be honest, they are already things that I watch out for. Sometimes I wake up really warm and sweaty. My first thought is to think about it being a B symptom. It hasn't ever been -- my occasional sweatiness isn't the sheet-soaking kind. And I always get a little tense before a blood test, worried about LDH levels. And I've learned to ignore my FLIPI score and not wory about what an online quiz has to say about my survival.
As I read this, we still don't have any answers about who will transform. We know who might be more likely to, but that's not the same thing at all.
So if you're new to all of this, my advice is to be vigilant. Changes in your body might signal something is happening, and the earlier you can catch those things, the better. But don't live in fear. There's so much that we can't predict. Don't fill your head with things that might be there (but that have a 7.3% chance of actually being there).
In the meantime, educate yourself and do what you can to stay healthy. And hope for more and better research that brings us closer to accurate predictions and better quality of life.
Monday, April 1, 2019
Leukemia and Lymphoma Society
OK, I just realized that I'm posting this on April Fool's Day, but ignore that -- this is no joke.
I want to encourage you to consider donating to the Leukemia and Lymphoma Society's Man and Woman of the Year fundraiser.
Specifically, I want to encourage you to contribute to Kyle Smith, who runs the Check 15 website. I've linked to Check 15 before. They feature a new video on the 15th of every month, reminding people to do a monthly cancer check for breast, testicular, and skin cancer. They also remind people to get colonoscopies and other preventative tests. And they do it with humor, honesty, and really good-looking videos (Kyle works in the film industry). Check out this recent example. And if you want to see Lympho Bob on video, keep your open about 2 and a half minutes into this one.
So Kyle and the Check 15 folks have been doing great work for a while. Kyle is a testicular cancer survivor -- preventing cancer is his life's mission.
And now he is helping to take on blood cancers like Follicular Lymphoma. As Kyle points out on fundraising page, he's not a blood cancer patient or survivor, but he knows that research on blood cancers often leads to advances that help other cancers.
He's trying to raise $151,515 -- a figure that honors Check 15.
So please consider going to Kyle's fundraising page and making a donation. Funding blood cancer research helps all of us.
So you want to support a Woman of the Year, too?
We have that covered. Radiant Racheli, a lymphoma survivor who does a video series for Blood-Cancer.com, is also raising money. You can donate to her Woman of the Year campaign here.
You really can't go wrong with either one, folks. And every little bit helps.
Thanks for considering it.
I want to encourage you to consider donating to the Leukemia and Lymphoma Society's Man and Woman of the Year fundraiser.
Specifically, I want to encourage you to contribute to Kyle Smith, who runs the Check 15 website. I've linked to Check 15 before. They feature a new video on the 15th of every month, reminding people to do a monthly cancer check for breast, testicular, and skin cancer. They also remind people to get colonoscopies and other preventative tests. And they do it with humor, honesty, and really good-looking videos (Kyle works in the film industry). Check out this recent example. And if you want to see Lympho Bob on video, keep your open about 2 and a half minutes into this one.
So Kyle and the Check 15 folks have been doing great work for a while. Kyle is a testicular cancer survivor -- preventing cancer is his life's mission.
And now he is helping to take on blood cancers like Follicular Lymphoma. As Kyle points out on fundraising page, he's not a blood cancer patient or survivor, but he knows that research on blood cancers often leads to advances that help other cancers.
He's trying to raise $151,515 -- a figure that honors Check 15.
So please consider going to Kyle's fundraising page and making a donation. Funding blood cancer research helps all of us.
So you want to support a Woman of the Year, too?
We have that covered. Radiant Racheli, a lymphoma survivor who does a video series for Blood-Cancer.com, is also raising money. You can donate to her Woman of the Year campaign here.
You really can't go wrong with either one, folks. And every little bit helps.
Thanks for considering it.
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