Here's a nice follow-up on my last post about there being cause for optimism for FL patients:
An article published in the British Journal of Haematology a few days ago says that FL patients who have a Complete Response at 30 months have the same life expectancy as the general population.
The title of the article is pretty much what I just wrote: "Life Expectancy of Follicular Lymphoma Patients in Complete Response at 30 Months is Similar to That of the Spanish General Population."
The Researchers were interested in the idea of CR30. A couple of years ago, researchers found that if a patient had a Complete Response to treatment that lasted for 30 years, they wouldn't need to wait until half the patients' disease got worse so they could measure a media PFS. Having to wait only 30 months instead of several years means that a treatment might get approved more quickly.
Now, on to the study that was published a few days ago. These researchers wanted to see if CR30 could be used to say something about life expectancy. In other words, could having Complete Response at 30 months predict life expectancy.
They seem to think that, Yes, it can. Patients in Spain who had a Complete Response 30 months after their first treatment (Immunochemotherapy) ended up with the same life expectancy as people who didn't have FL.
To me, this is a very hopeful thing.
When I was diagnosed, I read that the Overall Survival for FL patients was 8 to 10 years. As someone diagnosed at 40, if my life expectancy was in line with the general population, it would be closer to 40 years (give a take a few years -- I wouldn't really care about the exact number at that point).
That's pretty awesome.
Now, there are some important things worth thinking about.
First, this is a statistical study. That is, it looks at a large group of people, not at individuals. I like to tell people who get sad at Overall Survival numbers that a statistic says nothing about an individual. An OS of 8-10 years doesn't mean I'll die in 10 years (says the guy who is alive 11 years after reading that).
That's true of the flip side, too -- none of us is guaranteed to meet the statistical life expectancy. According to the U.S. Social Security Administration, a male born on my birthday has a life expectancy of 32 years or so. Could be more, could be less. None of us knows, of course.
But another thing to consider -- this study looked only at FL patients who had Immunochemotherapy -- some kind of chemo plus (like maybe R-CHOP or Bendamustine and Obinutuzumab). It doesn't say anything about patients who had a CR and had only Rituxan, or had a stem cell transplant, or had R-squared. It alos doesn't say anything about people (like me!) who had a Partial Response at 30 months (a PR with only Rituxan).Again, that doesn't mean those people (like me!) won't have a long life. It just means they weren't part of this statistical group.
The important thing -- the hopeful thing -- is that a full, long life is possible for those of us with Follicular Lymphoma.
It's an easy thing to think when you hear the words "I have cancer" -- to think you'll never see your kids grow up, or you'll never get to do the things you wanted to do.
The word "cancer" does that -- it shuts down minds, and it shuts down possibilities.
But a study like this reminds us that there are no guarantees. No good ones, but no bad ones, either.
So even someone like me -- not someone who was part of this study group -- might very well live as long as I would have if I hadn't gotten that diagnosis a little more than 11 years ago.
That's a great thing. Hang on to that. Hang on to hope.
Tuesday, February 26, 2019
Friday, February 22, 2019
Cause for Optimism in Follicular Lymphoma
OncLive is finishing up another of its excellent video series on Follicular Lymphoma. The whole series is called "Follicular Lymphoma: Evolving Treatment Landscape," and it features four FL experts. The whole series is worth watching (I always enjoy watching experts get excited about cancer research). The videos look at things like R-squared, immunotherapy, combination therapies, and other treatments that are in trials or have been approved recently.
There's lots to be excited about.
That's why I'm highlighting the final video in the series: "Cause for Optimism in Follicular Lymphoma Treatment." In this video, the panelists each take a minute to talk about what makes them optimistic about FL. They mention some important things:
Patients have more options now than they ever did.
Combinations might bring better responses with less toxicity.
Many FL patients will have lifespans that are equal to the general population.
It's good stuff.
The link will take you to the video, but just in case it doesn't work, or you need a translation, I am copying OncLive's very helpful transcription of the video. See below.
There's lots to be hopeful about.
**********************************
Ian W. Flinn, MD, PhD: This has been extremely informative. Before we end this discussion, I’d like to get final thoughts from each of our panelists. Dr Fowler?
Nathan H. Fowler, MD: The good news is that patients have more and more options. Sometimes I guess that makes our job a little more difficult. At least today, unfortunately, most of the novel drugs that are available are not changing the natural history of the disease for the patients for whom it matters most. So I think in the future, the way we’re going to really impact the most at-risk patients is to figure out how to use these drugs in combination or develop drugs that have better CR [complete response] rates, better progression-free survival. So, again, a lot of exciting drugs that are working at least independently so far, but the next generation is to figure out how do we boost that CR rate or how do we use these drugs in combination without the toxicity that we’ve seen with some of the early trials.
Ian W. Flinn, MD, PhD: Almost the parallels in chronic lymphocytic leukemia: getting people multiple agents, getting people into molecularly defined complete remissions, and hope that that translates into an improvement in overall survival and maybe, let’s talk about it, cure hopefully.
Nathan H. Fowler, MD: Yes.
Ian W. Flinn, MD, PhD: Ajay, what do you think?
Ajay K. Gopal, MD, FACP: I would concur. It’s becoming increasingly complex, but I’m really very excited about the options that we have. It’s nice for me to sit down with someone who has newly diagnosed follicular lymphoma and be able to confidently say that by far, your survival should match age-matched controls. And really until recently, we didn’t have the data to know that, and we even have an imperfect way to try to figure out who’s in that category. Ideally, we’d know at the very beginning, but we usually know after the first remission. But it makes it increasingly complex about how we strategize. And I don’t think any of us really know the answer how to strategize, but we think about the long game, particularly in our young patients. And all these options keep giving us additional cards to play as we try to get patients to a normal quality of life and normal longevity.
Ian W. Flinn, MD, PhD: Scott, final thoughts?
Scott Huntington, MD, MPH, MSc: Complexity is the key point. Every meeting impressed in me that the fields are advancing, not only in lymphoma, hematology broadly, and medical oncology. And so I think as a group we need to also work on translating from these clinical trials to the real world. It’s an incredibly complex healthcare delivery system, and basically delivering modern cancer care these days, and so I think we also need to be mindful of developing these algorithms to basically guide therapy that is individualized. It’s easier for us to individualize therapy because we have lots of patient panels. But out there in the community, where the majority of follicular lymphoma patients are receiving care, the individualization may be more challenging, and so I think we need to be mindful of that as well.
Ian W. Flinn, MD, PhD: I think those are really important points that everyone’s had here. Thank you all for your contributions to this discussion. On behalf of our panel, we thank you for joining us, and we hope you found this OncLive® Peer Exchange discussion to be useful and informative.
There's lots to be excited about.
That's why I'm highlighting the final video in the series: "Cause for Optimism in Follicular Lymphoma Treatment." In this video, the panelists each take a minute to talk about what makes them optimistic about FL. They mention some important things:
Patients have more options now than they ever did.
Combinations might bring better responses with less toxicity.
Many FL patients will have lifespans that are equal to the general population.
It's good stuff.
The link will take you to the video, but just in case it doesn't work, or you need a translation, I am copying OncLive's very helpful transcription of the video. See below.
There's lots to be hopeful about.
**********************************
Ian W. Flinn, MD, PhD: This has been extremely informative. Before we end this discussion, I’d like to get final thoughts from each of our panelists. Dr Fowler?
Nathan H. Fowler, MD: The good news is that patients have more and more options. Sometimes I guess that makes our job a little more difficult. At least today, unfortunately, most of the novel drugs that are available are not changing the natural history of the disease for the patients for whom it matters most. So I think in the future, the way we’re going to really impact the most at-risk patients is to figure out how to use these drugs in combination or develop drugs that have better CR [complete response] rates, better progression-free survival. So, again, a lot of exciting drugs that are working at least independently so far, but the next generation is to figure out how do we boost that CR rate or how do we use these drugs in combination without the toxicity that we’ve seen with some of the early trials.
Ian W. Flinn, MD, PhD: Almost the parallels in chronic lymphocytic leukemia: getting people multiple agents, getting people into molecularly defined complete remissions, and hope that that translates into an improvement in overall survival and maybe, let’s talk about it, cure hopefully.
Nathan H. Fowler, MD: Yes.
Ian W. Flinn, MD, PhD: Ajay, what do you think?
Ajay K. Gopal, MD, FACP: I would concur. It’s becoming increasingly complex, but I’m really very excited about the options that we have. It’s nice for me to sit down with someone who has newly diagnosed follicular lymphoma and be able to confidently say that by far, your survival should match age-matched controls. And really until recently, we didn’t have the data to know that, and we even have an imperfect way to try to figure out who’s in that category. Ideally, we’d know at the very beginning, but we usually know after the first remission. But it makes it increasingly complex about how we strategize. And I don’t think any of us really know the answer how to strategize, but we think about the long game, particularly in our young patients. And all these options keep giving us additional cards to play as we try to get patients to a normal quality of life and normal longevity.
Ian W. Flinn, MD, PhD: Scott, final thoughts?
Scott Huntington, MD, MPH, MSc: Complexity is the key point. Every meeting impressed in me that the fields are advancing, not only in lymphoma, hematology broadly, and medical oncology. And so I think as a group we need to also work on translating from these clinical trials to the real world. It’s an incredibly complex healthcare delivery system, and basically delivering modern cancer care these days, and so I think we also need to be mindful of developing these algorithms to basically guide therapy that is individualized. It’s easier for us to individualize therapy because we have lots of patient panels. But out there in the community, where the majority of follicular lymphoma patients are receiving care, the individualization may be more challenging, and so I think we need to be mindful of that as well.
Ian W. Flinn, MD, PhD: I think those are really important points that everyone’s had here. Thank you all for your contributions to this discussion. On behalf of our panel, we thank you for joining us, and we hope you found this OncLive® Peer Exchange discussion to be useful and informative.
Sunday, February 17, 2019
Ofatumumab for Follicular Lymphoma
News last week for another potential treatment for Follicular Lymphoma.
Results from a phase II clinical trial for Ofatumumab were published in the British Journal of Haematology. They look good, but not as good as some had hoped for.
The article is called "Phase 2 Multicentre Study of Single‐Agent Ofatumumab in Previously Untreated Follicular Lymphoma: CALGB 50901 (Alliance)."
First, a little bit about Ofatumumab.
It's a monoclonal antibody that targets CD20, much like Rituxan and Obinutuzumab. (And if you're like me, you might keep getting Ofatumumaband Obinutuzumab mixed up when you read about them, because they both start with O and end with mab and you read too fast and your eyes are going because you're getting old. So slow down and read carefully.)
Ofatumumab is like Rituxan, but it's a little different. For one thing, it is humanized. That is, it's made from human cells, unlike Rituxan, which is made from mouse cells. It is also works a little differently than Rituxan. I'm not going to try to explain what the difference is, because, honestly, I'm not sure I could. It involves things like lipid rafts and Fc Gamma Receptors. If you want to learn about all of that, read this article. But we can probably get away with just knowing that Ofatumumab works differently from Rituxan, and in some ways works better, because it grabs onto cancer cells more tightly.
Ofatumumab has been approved by the FDA for people with CLL, another slow-growing blood cancer, who have tried a particular treatment. So it's been around for a little while.
The clinical trial that is described in the article involved 51 FL patients. None of them had been treated before. they were divided into two groups. A smaller group had four weekly dosesof 500 mg of Ofatumumab, and a larger group of 36 had four weekly doses of 1000mg. After that, they all got four more doses, one every 8 weeks.
Results from a phase II clinical trial for Ofatumumab were published in the British Journal of Haematology. They look good, but not as good as some had hoped for.
The article is called "Phase 2 Multicentre Study of Single‐Agent Ofatumumab in Previously Untreated Follicular Lymphoma: CALGB 50901 (Alliance)."
First, a little bit about Ofatumumab.
It's a monoclonal antibody that targets CD20, much like Rituxan and Obinutuzumab. (And if you're like me, you might keep getting Ofatumumaband Obinutuzumab mixed up when you read about them, because they both start with O and end with mab and you read too fast and your eyes are going because you're getting old. So slow down and read carefully.)
Ofatumumab is like Rituxan, but it's a little different. For one thing, it is humanized. That is, it's made from human cells, unlike Rituxan, which is made from mouse cells. It is also works a little differently than Rituxan. I'm not going to try to explain what the difference is, because, honestly, I'm not sure I could. It involves things like lipid rafts and Fc Gamma Receptors. If you want to learn about all of that, read this article. But we can probably get away with just knowing that Ofatumumab works differently from Rituxan, and in some ways works better, because it grabs onto cancer cells more tightly.
Ofatumumab has been approved by the FDA for people with CLL, another slow-growing blood cancer, who have tried a particular treatment. So it's been around for a little while.
The clinical trial that is described in the article involved 51 FL patients. None of them had been treated before. they were divided into two groups. A smaller group had four weekly dosesof 500 mg of Ofatumumab, and a larger group of 36 had four weekly doses of 1000mg. After that, they all got four more doses, one every 8 weeks.
Results were good. The patients in the 1000mg group had an Overall Response rate of 84% (9% Complete Response, 75% Partial Respose, with another 9% having stable disease). In the 500mg group, there was a 60% ORR, with a 7% CR and 53% PR, and 33% stable).
After a median follow-up of about 30 months, the median Progression free Survival for both groups was a little under 2 years. The 500mg group had a longer median duration of response (just under 2 years, as opposed to 16.5 months for the 1000mg group).
Side effects were similar to those of other monoclonal antibodies: infections, low blood counts, allergic reactions. All were manageable, and none were life threatening.
In the end, the researchers say "Activity appears similar to that reported with single‐agent rituximab." So while it does a good job on its own, it doesn't do a better job than Rituximab or Obinutuzumab.
And that's key. If the goal is to replace Rituxan, it needs to be more effective or more safe, and it doesn't seem to be either.
Which doesn't mean it's bad, just not better.
It might still work in combination with other agents. (Unfortunately, last May, a research report showed it hadn't worked as well as hoped in combination with Bendamustine for FL and other slow-growing blood cancers.)
I'm not sure there's much of a future for Ofatumumab and FL, given the results of trials. There are still a few trials out there that need to report results, but none that are openly recruiting.
So while this has been a good treatment for CLL, my guess is that it won't be another arrow for our quiver. And that's OK. We have lots of other treatment possibilities to look forward to.
Tuesday, February 12, 2019
Obinutuzumab and Early Progression of FL
An article in the journal Haematologica shows that Obinutuzumab + chemo does a better job than Rituxan + chemo of holding off POD24.
The article came out in December (I know, I'm behind of my reading), and is called "Association of Early Disease Progression and Very Poor Survival in the GALLIUM Study in Follicular Lymphoma: Benefit of Obinutuzumab in Reducing the Rate of Early Progression."
The article reports on more results from the GALLIUM study. It looks like this is an updated result from what had been reported at the 2017 ASH conference (which would have been about a year before this was published).
The GALLIUM study looked at untreated FL patients (1202 of them). All were given Immunochemotherapy, but half were given Rituxan + chemo, and the other half got Obinutuzumab + chemo.
One area of interest was POD24 -- Progression of Disease within 24 months. This has been a hot topic lately, and I've written about it a few times in the last few months. Basically, FL patients who have had Immunochemotherapy, and then have their disease return within 24 months, have a lower Overall Survival rate.
This study found that patients in Obinutuzumab + chemo group had a much lower rate of POD24 than those in the Rituxan + chemo group -- about 46% lower (57 out of 601 patients in the O group, and 98 out of 601 in the R group).
The conclusion requires some speculation -- if patients who are POD24 have a lower Overall Survival, and O + chemo keeps patients out of the POD24 group, then maybe Obinutuzumab will help Overall Survival.
So far, that's a big Maybe. The study hasn't followed patients long enough to see if there's an Overall Survival benefit. But there certainly seems to be a POD24 benefit.
That big question is going to take a while to answer. And these early results don't mean that everyone should have O instead of R. (In fact, patients in the study who were not POD24 had a 98.2% Overall Survival rate at 2 years, while those who were POD had an 82.4% OS in that time. The non-POD24 group did just fine without O.)
If anything, the study confirms that the POD24 group needs special attention.
Has anyone out there had Obinutuzumab, either on its own, or as a combo? Curious to hear about your experiences. It's one of a few alternatives to Rituxan (some biosimilars being other alternatives), and I'd like to know how widespread it is. Thanks.
The article came out in December (I know, I'm behind of my reading), and is called "Association of Early Disease Progression and Very Poor Survival in the GALLIUM Study in Follicular Lymphoma: Benefit of Obinutuzumab in Reducing the Rate of Early Progression."
The article reports on more results from the GALLIUM study. It looks like this is an updated result from what had been reported at the 2017 ASH conference (which would have been about a year before this was published).
The GALLIUM study looked at untreated FL patients (1202 of them). All were given Immunochemotherapy, but half were given Rituxan + chemo, and the other half got Obinutuzumab + chemo.
One area of interest was POD24 -- Progression of Disease within 24 months. This has been a hot topic lately, and I've written about it a few times in the last few months. Basically, FL patients who have had Immunochemotherapy, and then have their disease return within 24 months, have a lower Overall Survival rate.
This study found that patients in Obinutuzumab + chemo group had a much lower rate of POD24 than those in the Rituxan + chemo group -- about 46% lower (57 out of 601 patients in the O group, and 98 out of 601 in the R group).
The conclusion requires some speculation -- if patients who are POD24 have a lower Overall Survival, and O + chemo keeps patients out of the POD24 group, then maybe Obinutuzumab will help Overall Survival.
So far, that's a big Maybe. The study hasn't followed patients long enough to see if there's an Overall Survival benefit. But there certainly seems to be a POD24 benefit.
That big question is going to take a while to answer. And these early results don't mean that everyone should have O instead of R. (In fact, patients in the study who were not POD24 had a 98.2% Overall Survival rate at 2 years, while those who were POD had an 82.4% OS in that time. The non-POD24 group did just fine without O.)
If anything, the study confirms that the POD24 group needs special attention.
Has anyone out there had Obinutuzumab, either on its own, or as a combo? Curious to hear about your experiences. It's one of a few alternatives to Rituxan (some biosimilars being other alternatives), and I'd like to know how widespread it is. Thanks.
Friday, February 8, 2019
Cancer Cured Within a Year? (No.)
A couple of weeks ago, there was a newspaper article making its way around the internet. It described a company that claimed it had found a way to beat cancer, and that they would have a cure for cancer available within a year.
I saw the article linked in a couple of online groups, and on Twitter. The company behind the "cure" claimed that their treatment would "be effective from day one, will last a duration of a few weeks and will have no or minimal side-effects at a much lower cost than most other treatments on the market."
People were getting very excited about it.
This is a good reminder that if something seems to good to be true, it probably is. At the very least, it's probably a good idea to not get too excited too quickly.
I think I was OK with the first two claims (it will be effective right away and the treatment will only take a few weeks). But then the third one made me raise an eyebrow (no side effects?), and the fourth one really made me stop (a cure for cancer that is cheaper than anything else out there? You're not going to cash in on this?)
Since then, I've read a few other pieces that kind of poke holes in this story. (This one from Wired is probably the best.)
First, the treatment, as I understand it: It's called MuTaTo, and it's a kind of Immunotherapy. Like other Immunotherapy treatments, it uses the body's immune system to attack cancer cells (something the immune system doesn't do on its own, without some help). Some immunotherapies target a protein on the surface of the cell, so they know which cells to tell the treatment to go after. the problem, according to the makers of MuTaTo, is that cancer cells mutate, so the target is no longer available for the treatment. But MuTaTo does not go after a single target. Instead, it goes after a chain of three peptides on the surface of the cell. Peptides are chains of amino acids, the things that make up proteins. They believe that cancer cells cannot mutate 3 targets the way they can mutate a single target, so the treatment should be able to find the cell more easily and kill it off.
Think of it this way. If your dog grabbed one of your socks and ran with it, you'd have a hard time catching it if you could only grab onto the sock. There's a good chance the dog would swallow it before you got to her. (This happens to me all the time because my dog is a little brat.) Now, if your dog grabbed a sock, but also had a leash and collar on, you'd have an easier time. You could grab the leash, the collar, or the sock, before the sock got swallowed. You'll save the sock and you'll save money on the large veterinarian's bill that will come later.
Now, this is actually a neat treatment, in theory. It's very much in line with a lot of other Immunotherapies.
The problem? It's a neat treatment in theory.
So far, the treatment has been tried in vitro (in test tubes, as they say), and in mice. No human clinical trials yet. Those will start "soon," according to the article, and "could be completed in a few years."
A few years? So where did that "cure for cancer within a year" thing come from?
Here's the bottom line, in my opinion as someone who spends way more time reading about cancer than he would have liked:
This treatment might very well be a cure for cancer. It most certainly won't be a cure for cancer within a year. And it might not work at all. Unfortunately, fewer than 10% of cancer treatments that start the clinical trial/approval process are ever actually approved. And, as we all know, the number of them that cure cancer (all cancer, as the company claims) has so far been 0%.
So this might be a success. We might all be celebrating in 10 years. But we might also never hear from them again.
In the meantime, we stay hopeful, but we stay realistic, and we keep living our lives.
I saw the article linked in a couple of online groups, and on Twitter. The company behind the "cure" claimed that their treatment would "be effective from day one, will last a duration of a few weeks and will have no or minimal side-effects at a much lower cost than most other treatments on the market."
People were getting very excited about it.
This is a good reminder that if something seems to good to be true, it probably is. At the very least, it's probably a good idea to not get too excited too quickly.
I think I was OK with the first two claims (it will be effective right away and the treatment will only take a few weeks). But then the third one made me raise an eyebrow (no side effects?), and the fourth one really made me stop (a cure for cancer that is cheaper than anything else out there? You're not going to cash in on this?)
Since then, I've read a few other pieces that kind of poke holes in this story. (This one from Wired is probably the best.)
First, the treatment, as I understand it: It's called MuTaTo, and it's a kind of Immunotherapy. Like other Immunotherapy treatments, it uses the body's immune system to attack cancer cells (something the immune system doesn't do on its own, without some help). Some immunotherapies target a protein on the surface of the cell, so they know which cells to tell the treatment to go after. the problem, according to the makers of MuTaTo, is that cancer cells mutate, so the target is no longer available for the treatment. But MuTaTo does not go after a single target. Instead, it goes after a chain of three peptides on the surface of the cell. Peptides are chains of amino acids, the things that make up proteins. They believe that cancer cells cannot mutate 3 targets the way they can mutate a single target, so the treatment should be able to find the cell more easily and kill it off.
Think of it this way. If your dog grabbed one of your socks and ran with it, you'd have a hard time catching it if you could only grab onto the sock. There's a good chance the dog would swallow it before you got to her. (This happens to me all the time because my dog is a little brat.) Now, if your dog grabbed a sock, but also had a leash and collar on, you'd have an easier time. You could grab the leash, the collar, or the sock, before the sock got swallowed. You'll save the sock and you'll save money on the large veterinarian's bill that will come later.
Now, this is actually a neat treatment, in theory. It's very much in line with a lot of other Immunotherapies.
The problem? It's a neat treatment in theory.
So far, the treatment has been tried in vitro (in test tubes, as they say), and in mice. No human clinical trials yet. Those will start "soon," according to the article, and "could be completed in a few years."
A few years? So where did that "cure for cancer within a year" thing come from?
Here's the bottom line, in my opinion as someone who spends way more time reading about cancer than he would have liked:
This treatment might very well be a cure for cancer. It most certainly won't be a cure for cancer within a year. And it might not work at all. Unfortunately, fewer than 10% of cancer treatments that start the clinical trial/approval process are ever actually approved. And, as we all know, the number of them that cure cancer (all cancer, as the company claims) has so far been 0%.
So this might be a success. We might all be celebrating in 10 years. But we might also never hear from them again.
In the meantime, we stay hopeful, but we stay realistic, and we keep living our lives.
Monday, February 4, 2019
World Cancer Day
February 4 is World Cancer Day.
Since 2000, this day has been set aside to highlight issues related to cancer -- access to treatment, funding for research, awareness of how to prevent it, and other issues that affect the millions of people around the world who have cancer or who have been diagnosed in the past.
World Cancer Day is sponsored by the Union for International Cancer Control, which is itself made up of over 1000 cancer-related organizations from over 160 countries. The fact that there are over 1000 cancer-related organizations in the world says a lot about how widespread cancer is, and how many people it effects.
Not that I need to remind any of you about that.
The theme for this year's World Cancer Day is "I Am and I Will." It's part of a 3 year campaign. It highlights the idea that, no matter who you are, you have the power to take some kind of action. Together, many individuals can have a big impact.
Not all of us need to be as public as some of us in raising awareness, raising money, and pushing for support. Sometimes, it's enough to make it through the day. And that's fine.
But if you are interested in being more public today, there are some materials for you to explore.
Consider adding something to Facebook or Twitter, or some other place where you can reach others and remind them about the day. And maybe inspire them to get involved, too.
"Awareness" days can sometimes get lost in the noise that makes up the online world. But sometimes, someone might see the message and want to do something about it.
Let's hope that a whole lot of someones do something about it today, and we keep working together to make a difference.
Since 2000, this day has been set aside to highlight issues related to cancer -- access to treatment, funding for research, awareness of how to prevent it, and other issues that affect the millions of people around the world who have cancer or who have been diagnosed in the past.
World Cancer Day is sponsored by the Union for International Cancer Control, which is itself made up of over 1000 cancer-related organizations from over 160 countries. The fact that there are over 1000 cancer-related organizations in the world says a lot about how widespread cancer is, and how many people it effects.
Not that I need to remind any of you about that.
The theme for this year's World Cancer Day is "I Am and I Will." It's part of a 3 year campaign. It highlights the idea that, no matter who you are, you have the power to take some kind of action. Together, many individuals can have a big impact.
Not all of us need to be as public as some of us in raising awareness, raising money, and pushing for support. Sometimes, it's enough to make it through the day. And that's fine.
But if you are interested in being more public today, there are some materials for you to explore.
Consider adding something to Facebook or Twitter, or some other place where you can reach others and remind them about the day. And maybe inspire them to get involved, too.
"Awareness" days can sometimes get lost in the noise that makes up the online world. But sometimes, someone might see the message and want to do something about it.
Let's hope that a whole lot of someones do something about it today, and we keep working together to make a difference.
Friday, February 1, 2019
What We Know About Transformation
There have been a few articles published in the last month or so on Follicular Lymphoma that are pretty interesting, and I am slowly working my way through them, hoping to write about them soon. My plan was to tackle one of them today, but then I got a couple of comments from a long-time reader, Jeanne. I started to reply to one them in the comments section, and it got so long I decided I would just make it a regular blog post instead.
Before I get to that, I will show you just how long Jeanne has been reading. This is one of her comments to me: "i still remind my husband fl strikes the most handsome so just have to accept it , wishing you health and all the best cheers!!"
I made that joke about FL only striking the devastatingly handsome a very long time ago. I think it was when the actor/politician Fred Thompson revealed that he had a type of indolent NHL about 10 years ago. That's a loyal reader. Thanks, Jeanne! (For reading and reminding me of how handsome your husband and I are.)
Jeanne's other comment was about transformation. As I'm sure you all know, Transformation is the term for what happens when a slow-growing lymphoma (like FL) turns into a different type of lymphoma -- a more aggressive one like DLBCL. The rate that it happens is up for debate, depending on the study that looked at it. Some say as high as 50%. But most that I have seen recently put it at about 15%, maybe 20% at most.
Jeanne's comment was in response to something I had written about the ASH conference, a study that looked at Bendamustine and Rituxan (B-R) and its relationship to Transformation.
The study also looked at POD24 patients (or EFS24 patients -- different term for the same thing). POD24 means "Progression of Disease within 24 months." That is, it describes patients who have had Immunochemotherapy (usually B-R or R-CHOP or R-CVP, all combinations of Rituxan and chemo), and whose disease returned within 24 months after treatment. This group makes up about 20% of FL patients, and their prognosis has been worse than other FL patients. The study confirmed that POD24 patients have a poor prognosis, with a lower Overall Survival than non-POD24 FL patients. It also showed some overlap between Transformation and POD24 -- most POD24 patients in the study had transformed.
Now, Jeanne asked a few questions about this study (which is complicated -- I needed to reread it a couple of times before I started writing): "So its basically saying that most pts with pod24 treated with frontline BR have transformed? BR might be the culprit of transformation with pod24 pts ? I have high hopes for BR but this article is worrisome, also are there new findings with regards to transformation? Like prevention methods or drugs to counter transformation , thank you!"
OK, first question: Have most patients with POD24 also transformed?
Well, in this study, Yes, that seems to be true. But that doesn't mean the two things are the same.
Transformation involves slow-growing cancer cells turning into fast-growing ones. Some people transform within 24 months after having Immunochemotherapy. But some people transform years later, after taking only Rituxan, or even after watching and waiting, with no treatment at all. It's scary because it's unpredictable. Everything is moving nice and slow, and suddenly there are night sweats and nodes popping up everywhere. (I remember reading, long ago, that the risk of transformation is pretty much gone after 15 years, but I can't find that reference anywhere.)
POD24 describes a very specific set of patients. They have been given immunochemotherapy as a first treatment and then needed another treatment within 24 months. It's possible that they started off with B-R or R-CHOP because their doctor saw that their lymphoma was aggressive from the start. That's one way to think about the difference between POD24 and Transformation -- POD24 starts off aggressively, and Transformation turns into something aggressive later on. (Of course, someone can also have a slow-growing FL that wasn't diagnosed for years, so when it does transform, it seems sudden, but maybe wasn't.) So there is some overlap between the two: someone who had immunochemo then needs another treatment, and maybe they Transformed, or maybe they just had an aggressive form of FL that has stayed FL (but has also stayed aggressive).
So the answer is, some people who need re-treatment in 24 months have transformed, some are POD24, but (just to complicate this) some might not have even had immunochemo, so they don't officially belong to either group.
Second question: Is B-R the cause of transformation?
Answer: Definitely No.
B-R has become kind of the default choice for lots of oncologists when a patient needs treatment. There are still lots of choices (B-R, R-CHOP, R-CVP, watching and waiting, R-squared, stuff in trials). And the choices are really spread out -- I don't think any of them are used by more than about 30% of oncologists as a first choice. In this study, the patients were given B-R, and some of them transformed. If they did a similar study with another treatment, they'd probably find the same results. The treatment didn't cause the transformation, it just happened to be the group that they were studying. In fact, they say in the conclusion "The use of BR has not changed the rate of transformation compared with that seen after frontline R-CVP." The transformation rate didn't get better or worse with a different treatment. So don't be worried about B-R -- it's still a really good choice for treatment (though ask the oncologist if it's the best choice for your situation).
That brings us to the third question: are there new findings with regards to transformation? Like prevention methods or drugs to counter transformation?
I wish I could say Yes, but I can't. What we know about transformation hasn't really changed much since I started paying attention to it. there doesn't seem to be any demographic group that's more or less likely to transform (age, sex, etc.). And there doesn't seem to be any treatment benefit, either (you are more or less likely to transform if you had R-CHOP, for example -- nothing there). And so far, no clear biomarkers (having a certain protein on your cancer cells, for example -- nothing there, either).
Like I said, it's scary because it's unpredictable.
the good news, though, is that researchers seem to be doing better at narrowing how many people are likely to transform. It was as high as 50% when I was diagnosed, but now it seems closer to 15% to 20%. Some studies put it less than 10%. So the risk of it happening appears to be smaller. (That doesn't mean that fewer patients are transforming -- it means researchers are better at measuring it). It also seems like the Overall Survival rates are getting better -- patients are living longer after transformation.
So that's where we are. Still none of the answers that we wish we had, but overall, in better shape than we were 11 years ago when I was diagnosed.
In the meantime, I suggest trying not to worry about it, and doing what you are probably doing already -- paying close attention to your own body and discussing any changes with your doctor.
Thanks for reading, Jeanne (and thanks to the rest of you, too).
Before I get to that, I will show you just how long Jeanne has been reading. This is one of her comments to me: "i still remind my husband fl strikes the most handsome so just have to accept it , wishing you health and all the best cheers!!"
I made that joke about FL only striking the devastatingly handsome a very long time ago. I think it was when the actor/politician Fred Thompson revealed that he had a type of indolent NHL about 10 years ago. That's a loyal reader. Thanks, Jeanne! (For reading and reminding me of how handsome your husband and I are.)
Jeanne's other comment was about transformation. As I'm sure you all know, Transformation is the term for what happens when a slow-growing lymphoma (like FL) turns into a different type of lymphoma -- a more aggressive one like DLBCL. The rate that it happens is up for debate, depending on the study that looked at it. Some say as high as 50%. But most that I have seen recently put it at about 15%, maybe 20% at most.
Jeanne's comment was in response to something I had written about the ASH conference, a study that looked at Bendamustine and Rituxan (B-R) and its relationship to Transformation.
The study also looked at POD24 patients (or EFS24 patients -- different term for the same thing). POD24 means "Progression of Disease within 24 months." That is, it describes patients who have had Immunochemotherapy (usually B-R or R-CHOP or R-CVP, all combinations of Rituxan and chemo), and whose disease returned within 24 months after treatment. This group makes up about 20% of FL patients, and their prognosis has been worse than other FL patients. The study confirmed that POD24 patients have a poor prognosis, with a lower Overall Survival than non-POD24 FL patients. It also showed some overlap between Transformation and POD24 -- most POD24 patients in the study had transformed.
Now, Jeanne asked a few questions about this study (which is complicated -- I needed to reread it a couple of times before I started writing): "So its basically saying that most pts with pod24 treated with frontline BR have transformed? BR might be the culprit of transformation with pod24 pts ? I have high hopes for BR but this article is worrisome, also are there new findings with regards to transformation? Like prevention methods or drugs to counter transformation , thank you!"
OK, first question: Have most patients with POD24 also transformed?
Well, in this study, Yes, that seems to be true. But that doesn't mean the two things are the same.
Transformation involves slow-growing cancer cells turning into fast-growing ones. Some people transform within 24 months after having Immunochemotherapy. But some people transform years later, after taking only Rituxan, or even after watching and waiting, with no treatment at all. It's scary because it's unpredictable. Everything is moving nice and slow, and suddenly there are night sweats and nodes popping up everywhere. (I remember reading, long ago, that the risk of transformation is pretty much gone after 15 years, but I can't find that reference anywhere.)
POD24 describes a very specific set of patients. They have been given immunochemotherapy as a first treatment and then needed another treatment within 24 months. It's possible that they started off with B-R or R-CHOP because their doctor saw that their lymphoma was aggressive from the start. That's one way to think about the difference between POD24 and Transformation -- POD24 starts off aggressively, and Transformation turns into something aggressive later on. (Of course, someone can also have a slow-growing FL that wasn't diagnosed for years, so when it does transform, it seems sudden, but maybe wasn't.) So there is some overlap between the two: someone who had immunochemo then needs another treatment, and maybe they Transformed, or maybe they just had an aggressive form of FL that has stayed FL (but has also stayed aggressive).
So the answer is, some people who need re-treatment in 24 months have transformed, some are POD24, but (just to complicate this) some might not have even had immunochemo, so they don't officially belong to either group.
Second question: Is B-R the cause of transformation?
Answer: Definitely No.
B-R has become kind of the default choice for lots of oncologists when a patient needs treatment. There are still lots of choices (B-R, R-CHOP, R-CVP, watching and waiting, R-squared, stuff in trials). And the choices are really spread out -- I don't think any of them are used by more than about 30% of oncologists as a first choice. In this study, the patients were given B-R, and some of them transformed. If they did a similar study with another treatment, they'd probably find the same results. The treatment didn't cause the transformation, it just happened to be the group that they were studying. In fact, they say in the conclusion "The use of BR has not changed the rate of transformation compared with that seen after frontline R-CVP." The transformation rate didn't get better or worse with a different treatment. So don't be worried about B-R -- it's still a really good choice for treatment (though ask the oncologist if it's the best choice for your situation).
That brings us to the third question: are there new findings with regards to transformation? Like prevention methods or drugs to counter transformation?
I wish I could say Yes, but I can't. What we know about transformation hasn't really changed much since I started paying attention to it. there doesn't seem to be any demographic group that's more or less likely to transform (age, sex, etc.). And there doesn't seem to be any treatment benefit, either (you are more or less likely to transform if you had R-CHOP, for example -- nothing there). And so far, no clear biomarkers (having a certain protein on your cancer cells, for example -- nothing there, either).
Like I said, it's scary because it's unpredictable.
the good news, though, is that researchers seem to be doing better at narrowing how many people are likely to transform. It was as high as 50% when I was diagnosed, but now it seems closer to 15% to 20%. Some studies put it less than 10%. So the risk of it happening appears to be smaller. (That doesn't mean that fewer patients are transforming -- it means researchers are better at measuring it). It also seems like the Overall Survival rates are getting better -- patients are living longer after transformation.
So that's where we are. Still none of the answers that we wish we had, but overall, in better shape than we were 11 years ago when I was diagnosed.
In the meantime, I suggest trying not to worry about it, and doing what you are probably doing already -- paying close attention to your own body and discussing any changes with your doctor.
Thanks for reading, Jeanne (and thanks to the rest of you, too).
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