Rituxan instead of chemotherapy?
The Journal of Clinical Oncology published the results of long-term trials from the Nordic Lymphoma Group. They showed that, over 10 years, a group of Follicular Lymphoma patients had excellent Overall Survival, even without chemotherapy.
If you've been following the blog, you know that this means a lot to me, because I'm one of those FL patients who has had great results over a long time (over 8 years) with just Rituxan.
The article is called "Chemotherapy-Free Initial Treatment of Advanced Indolent Lymphoma Has Durable Effect With Low Toxicity: Results From Two Nordic Lymphoma Group Trials With More Than 10 Years of Follow-Up."
The study looked at 321 patients with indolent lymphoma (84% of them had Follicular Lymphoma). The patients were symptomatic and had a high tumor burden. All of them received one or two cycles of four weekly infusions of Rituxan. About half of them also received Interferon (another biological agent -- not a chemotherapy -- that is more common in Europe than the U.S., from what I can tell).
Patients were followed for a median of 10.6 years. At the 10 year follow up, 73% of patients were alive. 36% of them (38% of FL patients) never needed chemotherapy. For patients who needed treatment within 24 months, the 10 year survival rate was 59% (81% for patients who didn't need treatment that soon).
Those 10 year numbers are important, because they are about the same as studies of patients who have immunochemotherapy (Rituxan + chemo, like R-CHOP) as their first treatment.
As the researchers state in their conclusion, the study would suggest that many FL patients can hold off on chemotherapy and try Rituxan instead, and that for some, Rituxan can be enough.
Now, let's be clear -- the study is not saying that we are finished with chemo. Many patients in the study ended up needing treatment (including chemo) at a later time. The study suggests that for many patients, starting out with just Rituxan can be an option.
What makes the study important, in my non-expert opinion, is that it shows once again that it's possible to move away from chemo, and that the impulse to start with chemo might be challenged.
Of course, as someone who watched and waited for two years, and then took only Rituxan, and who hasn't needed treatment in over 8 years, I also like reading that my choice is kind of validated. It looks back at the past -- the fact that I'm still here is the thing that validates the choice -- but it's still nice to read.
Now, the most important lesson here -- talk to your doctor. Rituxan worked as an option for a particular set of patients in a specific study. It could work for some people. But traditional chemotherapy might be the best option for others. Talking things through with your doctor, asking informed questions, and perhaps seeking a second opinion are your best approaches to deciding on treatment.
Wednesday, October 24, 2018
Saturday, October 20, 2018
What Paul Allen Should Remind Us Of
There's been a lot written online over the past few days about Paul Allen, who co-founded Microsoft and then went on to become a philanthropist and owner and funder of many other businesses. By all accounts, he was a good guy. He died on Monday.
More importantly for anyone reading this blog, he was a Non-Hodgkin's Lymphoma patient. The announcements about his death (and most of the stories about him since) say that he died "from complications of Non-Hodgkin's Lymphoma."
He had been diagnosed, and was successfully treated, for Hodgkin's Lymphoma many years ago, and then was diagnosed with NHL in 2009, and again had successful treatment. It was only recently that he announced that the NHL had come back.
It's very sad news, and I very rarely write about people dying. I'm not in denial about it. But I also think it's better to focus on what we can do when we're still alive.
But in this case, I'm less interested in Mr. Allen than in the way people are talking about him, especially about his disease.
First of all, let's get this out of the way -- the only mention I have seen about the specific subtype of NHL that he had is that he was diagnosed with Diffuse Large B cell Lymphoma in 2009. I'm not 100% sure that's correct, but it's what I've seen. The official announcement of his death only mentioned NHL, not a subtype.
And, of course, every one of the dozens of stories that report on it also have to go with the information they have received -- that it was Non-Hodgkin's Lymphoma.
To me, that's what makes a bad situation worse. At least for NHL patients.
When we do get the bad news that someone has died of a disease that is connected to us in some way, our ears perk up even more. Old feelings return. Any worries we might have tucked away come back.
And if we read articles about someone famous with NHL, we get distorted information.
Like this article from CBS News called "Paul Allen's Death Shines Light on Non-Hodgkin Lymphoma." We get to read statistics about how many people are diagnosed with NHL every year, and about famous people who died from it. And while the article does point out that there are lots of different types, some slow-growing and some fast-growing, we still get an survival rate that lumps them all together.
That article title is ironic. It doesn't shed much light at all, certainly not to NHL patients. And whatever light it does shed, it just creates a bunch of shadows that hide information that might actually be useful.
The fact is, there is no "Non-Hodgkin's Lymphoma." There's no single disease that is called that. there are at least 60 different subtypes, and they can be incredibly different from one another. There's not much light being shed.
Now, part of the issue is that the official announcements about Paul Allen's death mentioned NHL, but not DLBCL. His family may have had a very good reason for not getting into more detail about his disease. And I respect that. They have other things on their minds right now.
But the only thing, for me, that's getting some light shed on it is the fact that there is still a lot of work to do when it comes to awareness. Anyone reading this probably already knows their subtype, and is working to learn more about their disease. That's good.
Now do what you can to educate others. Especially other patients. It doesn't matter so much if the general public knows the difference between DLBCL and FL. But a newly-diagnosed patient needs to know. Someone affected by FL needs to know that a statistic in a news story doesn't necessarily apply to them in the way it applied to Paul Allen.
Do your part to shed some light. Help others truly understand your disease.
And more importantly, try not to panic when you read statistics. Remind yourself that other people are not you, and statistics don't represent you. Focus on what you can do today to live your life well, and then do it.
More importantly for anyone reading this blog, he was a Non-Hodgkin's Lymphoma patient. The announcements about his death (and most of the stories about him since) say that he died "from complications of Non-Hodgkin's Lymphoma."
He had been diagnosed, and was successfully treated, for Hodgkin's Lymphoma many years ago, and then was diagnosed with NHL in 2009, and again had successful treatment. It was only recently that he announced that the NHL had come back.
It's very sad news, and I very rarely write about people dying. I'm not in denial about it. But I also think it's better to focus on what we can do when we're still alive.
But in this case, I'm less interested in Mr. Allen than in the way people are talking about him, especially about his disease.
First of all, let's get this out of the way -- the only mention I have seen about the specific subtype of NHL that he had is that he was diagnosed with Diffuse Large B cell Lymphoma in 2009. I'm not 100% sure that's correct, but it's what I've seen. The official announcement of his death only mentioned NHL, not a subtype.
And, of course, every one of the dozens of stories that report on it also have to go with the information they have received -- that it was Non-Hodgkin's Lymphoma.
To me, that's what makes a bad situation worse. At least for NHL patients.
When we do get the bad news that someone has died of a disease that is connected to us in some way, our ears perk up even more. Old feelings return. Any worries we might have tucked away come back.
And if we read articles about someone famous with NHL, we get distorted information.
Like this article from CBS News called "Paul Allen's Death Shines Light on Non-Hodgkin Lymphoma." We get to read statistics about how many people are diagnosed with NHL every year, and about famous people who died from it. And while the article does point out that there are lots of different types, some slow-growing and some fast-growing, we still get an survival rate that lumps them all together.
That article title is ironic. It doesn't shed much light at all, certainly not to NHL patients. And whatever light it does shed, it just creates a bunch of shadows that hide information that might actually be useful.
The fact is, there is no "Non-Hodgkin's Lymphoma." There's no single disease that is called that. there are at least 60 different subtypes, and they can be incredibly different from one another. There's not much light being shed.
Now, part of the issue is that the official announcements about Paul Allen's death mentioned NHL, but not DLBCL. His family may have had a very good reason for not getting into more detail about his disease. And I respect that. They have other things on their minds right now.
But the only thing, for me, that's getting some light shed on it is the fact that there is still a lot of work to do when it comes to awareness. Anyone reading this probably already knows their subtype, and is working to learn more about their disease. That's good.
Now do what you can to educate others. Especially other patients. It doesn't matter so much if the general public knows the difference between DLBCL and FL. But a newly-diagnosed patient needs to know. Someone affected by FL needs to know that a statistic in a news story doesn't necessarily apply to them in the way it applied to Paul Allen.
Do your part to shed some light. Help others truly understand your disease.
And more importantly, try not to panic when you read statistics. Remind yourself that other people are not you, and statistics don't represent you. Focus on what you can do today to live your life well, and then do it.
Tuesday, October 16, 2018
Cancer, Community, and Buffalo Chicken
My latest on Blood-Cancer.com:
Cancer, Community, and Buffalo Chicken.
I've been thinking more and more lately about community, and the need to be with people who understand what I've been through.
There's something very satisfying about someone talking about an experience, and getting the feeling that you've been there yourself.
A few months ago, I went to the HealtheVoices conference in Chicago. I wrote about this -- how great it was to meet other online cancer advocates and feel that kind of connection.
I didn't write about a session on the closing day, when a breast cancer advocate talked about having to tell her kids that she had cancer. I relived everything. It was one of the hardest things I've ever done. When the session was over, I stopped her as she was leaving (three days and it was my first time getting a chance to speak to her -- she's very popular).
I introduced myself and said, "The stuff you said about telling your kids really hit a nerve."
"I'm so sorry!" she said.
"No no. Don't be sorry. It was a good thing. Really."
And it really was. As hard as it was to tell my kids, and as hard as it was to relive it right there, it was good to make that connection with someone else.
Is that weird?
Yes, a little, in a "misery loves company" kind of way.
But it also reminds me of how important it is to be a part of a community, especially one made up of other Follicular Lymphoma patients, or at least other cancer patients. People who know what you've been through.
And if that's not possible, then people who support you, even if they don't understand it completely.
Cancer, Community, and Buffalo Chicken.
I've been thinking more and more lately about community, and the need to be with people who understand what I've been through.
There's something very satisfying about someone talking about an experience, and getting the feeling that you've been there yourself.
A few months ago, I went to the HealtheVoices conference in Chicago. I wrote about this -- how great it was to meet other online cancer advocates and feel that kind of connection.
I didn't write about a session on the closing day, when a breast cancer advocate talked about having to tell her kids that she had cancer. I relived everything. It was one of the hardest things I've ever done. When the session was over, I stopped her as she was leaving (three days and it was my first time getting a chance to speak to her -- she's very popular).
I introduced myself and said, "The stuff you said about telling your kids really hit a nerve."
"I'm so sorry!" she said.
"No no. Don't be sorry. It was a good thing. Really."
And it really was. As hard as it was to tell my kids, and as hard as it was to relive it right there, it was good to make that connection with someone else.
Is that weird?
Yes, a little, in a "misery loves company" kind of way.
But it also reminds me of how important it is to be a part of a community, especially one made up of other Follicular Lymphoma patients, or at least other cancer patients. People who know what you've been through.
And if that's not possible, then people who support you, even if they don't understand it completely.
Thursday, October 11, 2018
PET Scans and Prognosis for FL
The Lancet Oncology just published an article on the value of PET scans after treatment. It's called "Prognostic Value of End-of-Induction PET Response after First-Line Immunochemotherapy for Follicular Lymphoma (GALLIUM): Secondary Analysis of a Randomised, Phase 3 Trial."
The GALLIUM trial looked at Obinutuzumab, a monoclonal antibody, and how well it worked when compared to Rituxan. You can refresh your memory about it here.
In this study, the researchers looked at the GALLIUM data in a different way. They wanted to know how well a PET scan can predict prognosis. In other words, does a good PET scan (compared to a CT scan) mean a patient can expect a longer Progress-Free Survival?
The GALLIUM study looked at 1202 FL patients, divided into two groups. One received Obinutuzumab + chemo, and the other Rituxan + chemo. All of the patients were receiving their first treatment.
A smaller number -- 595 -- were given PET scans before treatment, and then again after treatment was finished. A committee (not including the researchers) looked at the PET results and decided if patients had a Complete Response or Partial Response.
The researchers and the independent committee used two different ways of analyzing the PET scans. (I don't think it's all that important to explain the difference here -- they used two ways to kind of double-check their results.)
Using the first way, at the end of treatment, 390 patients had a Complete Response based on the PET scan. Using the second way, 450 had a Complete Response.
Here's where the important part comes in.
The researchers then looked at Progression Free Survival (PFS) after 2.5 years.
In that first way of analyzing the scans, those patients whose scan showed a Complete Response had an 87.8% PFS. Those that didn't show a CR had a 72% PFS.
In that second way, patients with a CR had a 2.5 year PFS of 87.4%. Those without a CR had a 54.9% PFS.
So what does all of this mean?
Well, first, it's important to know the difference between a PET scan and a CT scan. A CT scan basically takes a picture of your insides, kind of like an x-ray, but it can show things an x-ray can't show -- things like lymph nodes. If you get a CT scan, a doctor can see that lymph nodes are swollen.
But a CT scan can't tell you why the nodes are swollen. Could be an infection. Could be cancer.
That's where a PET scan comes in. A PET measures metabolic response -- how the body metabolizes or "eats up" a radioactive substance. cancer cells eat it up more quickly, so on a PET scan, they will glow brighter.
Now take the two scans together -- two pictures, one on top of the other. The CT will show the swollen nodes. The PET will show if there is cancer in those swollen nodes (or in other places).
So this study confirms that using a PET is more useful than just a CT. Taking a PET before treatment, and then right after treatment, the doctor can compare the glows, and figure out if there is less cancer. Or if the cancer is all gone (which would be a Complete Metabolic Response -- there's no more cancer to eat up that radioactive tracer).
So if a PET scan shows that there is a Complete Metabolic Response, chances are good that the cancer is all gone. It's a better way of measuring than a CT scan, or feeling around, or any other method.
To be clear -- there's a good chance the cancer is gone. No guarantee that it's all gone, and certainly no guarantee that it isn't coming back.
But that Complete Response was a good way of predicting that it was gone for now. And two and half years after the treatment, a large number of patients were still in remission.
And, as the study shows, if there is no Complete Response, then maybe another treatment is necessary. Or maybe another scan some time to see if the cancer is progressing.
If you've been reading for a while, you've seen my rants about PET scans. I had an oncologist (no longer my oncologist) who wanted to do a PET scan without any reason. I said No. I'm young and I don't need the extra radiation.
But doing a PET right after treatment? Well, there's good reason for that, and this study confirms that.
So don't be afraid of a PET scan. Just talk to your doctor about why you need it, and the best times to have one.
The GALLIUM trial looked at Obinutuzumab, a monoclonal antibody, and how well it worked when compared to Rituxan. You can refresh your memory about it here.
In this study, the researchers looked at the GALLIUM data in a different way. They wanted to know how well a PET scan can predict prognosis. In other words, does a good PET scan (compared to a CT scan) mean a patient can expect a longer Progress-Free Survival?
The GALLIUM study looked at 1202 FL patients, divided into two groups. One received Obinutuzumab + chemo, and the other Rituxan + chemo. All of the patients were receiving their first treatment.
A smaller number -- 595 -- were given PET scans before treatment, and then again after treatment was finished. A committee (not including the researchers) looked at the PET results and decided if patients had a Complete Response or Partial Response.
The researchers and the independent committee used two different ways of analyzing the PET scans. (I don't think it's all that important to explain the difference here -- they used two ways to kind of double-check their results.)
Using the first way, at the end of treatment, 390 patients had a Complete Response based on the PET scan. Using the second way, 450 had a Complete Response.
Here's where the important part comes in.
The researchers then looked at Progression Free Survival (PFS) after 2.5 years.
In that first way of analyzing the scans, those patients whose scan showed a Complete Response had an 87.8% PFS. Those that didn't show a CR had a 72% PFS.
In that second way, patients with a CR had a 2.5 year PFS of 87.4%. Those without a CR had a 54.9% PFS.
So what does all of this mean?
Well, first, it's important to know the difference between a PET scan and a CT scan. A CT scan basically takes a picture of your insides, kind of like an x-ray, but it can show things an x-ray can't show -- things like lymph nodes. If you get a CT scan, a doctor can see that lymph nodes are swollen.
But a CT scan can't tell you why the nodes are swollen. Could be an infection. Could be cancer.
That's where a PET scan comes in. A PET measures metabolic response -- how the body metabolizes or "eats up" a radioactive substance. cancer cells eat it up more quickly, so on a PET scan, they will glow brighter.
Now take the two scans together -- two pictures, one on top of the other. The CT will show the swollen nodes. The PET will show if there is cancer in those swollen nodes (or in other places).
So this study confirms that using a PET is more useful than just a CT. Taking a PET before treatment, and then right after treatment, the doctor can compare the glows, and figure out if there is less cancer. Or if the cancer is all gone (which would be a Complete Metabolic Response -- there's no more cancer to eat up that radioactive tracer).
So if a PET scan shows that there is a Complete Metabolic Response, chances are good that the cancer is all gone. It's a better way of measuring than a CT scan, or feeling around, or any other method.
To be clear -- there's a good chance the cancer is gone. No guarantee that it's all gone, and certainly no guarantee that it isn't coming back.
But that Complete Response was a good way of predicting that it was gone for now. And two and half years after the treatment, a large number of patients were still in remission.
And, as the study shows, if there is no Complete Response, then maybe another treatment is necessary. Or maybe another scan some time to see if the cancer is progressing.
If you've been reading for a while, you've seen my rants about PET scans. I had an oncologist (no longer my oncologist) who wanted to do a PET scan without any reason. I said No. I'm young and I don't need the extra radiation.
But doing a PET right after treatment? Well, there's good reason for that, and this study confirms that.
So don't be afraid of a PET scan. Just talk to your doctor about why you need it, and the best times to have one.
Sunday, October 7, 2018
We Need To Talk About Survival Statistics
My latest column for Lymphoma News Today is out. It's called "We Need To Talk About Survival Statistics."
I write about this issue on the blog every now and then. I think it's worth coming back to a lot. A good reminder for those of us who have dealt with Follicular Lymphoma for a while, and a good thing to hear for those who are new to this.
One of the first things we ask after a diagnosis is "How long do I have?"
We're asking for survival statistics.
But what we read isn't the real picture when it comes to survival.
The most important thing to remember is, statistics are about groups of people, and they don't say anything about individual patients.The median survival only tells you the exact middle -- half of patients will live less than that number, but half will live more. And for Follicular Lymphoma patients, that could mean many, many years more then the statistic would make you think.
It's easy to get bogged down in numbers, because they seem so real.
Don't let that happen to you.
Take a look at the column. I want it to be a reminder that numbers don't dictate our lives.
I write about this issue on the blog every now and then. I think it's worth coming back to a lot. A good reminder for those of us who have dealt with Follicular Lymphoma for a while, and a good thing to hear for those who are new to this.
One of the first things we ask after a diagnosis is "How long do I have?"
We're asking for survival statistics.
But what we read isn't the real picture when it comes to survival.
The most important thing to remember is, statistics are about groups of people, and they don't say anything about individual patients.The median survival only tells you the exact middle -- half of patients will live less than that number, but half will live more. And for Follicular Lymphoma patients, that could mean many, many years more then the statistic would make you think.
It's easy to get bogged down in numbers, because they seem so real.
Don't let that happen to you.
Take a look at the column. I want it to be a reminder that numbers don't dictate our lives.
Tuesday, October 2, 2018
Nobel Prize in Medicine
In case you hadn't heard, the Nobel Prize in Medicine was awarded yesterday. It went to the two cancer researchers who more or less invented Immunotherapy.
The Nobel Prizes are some of the most prestigious in the world. Every year, a committee gives the award for Medicine to one or more researchers who have made discoveries that have changed lives.
This year, there were two winners. they each did work in Immunotherapy. They worked separately, but made similar discoveries on ways that the immune system can be used to kill cancer cells.
Cancer cells are tricky. Our immune system's job is to find invaders (like bacteria and viruses) and kill them, and then remember what they were so they can find them again. But cancer cells aren't really "invaders" -- they don't come from outside our bodies. Instead,they are parts of our bodies -- our own cells -- that have turned off that switch that tells them when to die.
Immunotherapy is an approach to cancer treatment that finds way to get the immune system to treat cancer cells like they were outside invaders.
The first winner, Dr. James Allison (of the MD Anderson Cancer Center) helped to discover a protein called CTLA-4 (or CD152) that stops a type of immune cell called T cells from doing their job. He developed an antibody that worked against CTLA-4. In other words, it blocked the protein that blocked the immune cells.
Eventually, the connection was made between CTLA-4 and cancer. A treatment called Ipilimumab was approved to treat melanoma about 7 years ago. (Notice that "mab" on the end of the name. It's a monoclonal antibody, like Rituxan, or rituximab.)
The second winner is Dr. Tasuku Honjo Kyoto University in Japan. He discovered PD-1, a protein on T cells. "PD" stands for "Programmed Cell Death." All cells die a natural death, and PD-1 plays a role in that (the cells are programmed to die). But it can also keep cells from dying, which is where cancer comes in -- cells don't die and grow uncontrollably.
Like the CTLA-4, treatments were developed that stopped PD-1 from stopping the immune system. Some of the treatments that work as anti-PD-1 are Nivolumab (also known as Opdivo) and Pembrolizumab (also known as Keytruda). Each of them work on a bunch of different types of cancer.
Here's your Follicular Lymphoma connection: Keytruda has been approved as a treatment for Hodgkin's Lymphoma, and there are trials for using it in combinations with other treatments for FL. Opdivo is also being tested in FL patients, in combinations. Early results look promising. The same is true for Ipilimumab (though the results may not be as promising).
None of that research has produced anything that will be available to patients anytime soon, but if you need treatments [not that I'm hoping you do], it's another thing to ask your doctor about, to see if any clinical trials would make sense for your situation.
Immunotherapy is one of those things that gets oncologists and researchers very excited. At the end of 2013, the journal Science called Immunotherapy the cancer breakthrough of the year. If you want to learn more about Immunotherapy, I suggest you start here.
So just like a sports fan who refers to his favorite team as "us," I feel a little bit of pride in knowing that a couple of "us" won the Nobel Prize. Gives me even more hope for the future.
The Nobel Prizes are some of the most prestigious in the world. Every year, a committee gives the award for Medicine to one or more researchers who have made discoveries that have changed lives.
This year, there were two winners. they each did work in Immunotherapy. They worked separately, but made similar discoveries on ways that the immune system can be used to kill cancer cells.
Cancer cells are tricky. Our immune system's job is to find invaders (like bacteria and viruses) and kill them, and then remember what they were so they can find them again. But cancer cells aren't really "invaders" -- they don't come from outside our bodies. Instead,they are parts of our bodies -- our own cells -- that have turned off that switch that tells them when to die.
Immunotherapy is an approach to cancer treatment that finds way to get the immune system to treat cancer cells like they were outside invaders.
The first winner, Dr. James Allison (of the MD Anderson Cancer Center) helped to discover a protein called CTLA-4 (or CD152) that stops a type of immune cell called T cells from doing their job. He developed an antibody that worked against CTLA-4. In other words, it blocked the protein that blocked the immune cells.
Eventually, the connection was made between CTLA-4 and cancer. A treatment called Ipilimumab was approved to treat melanoma about 7 years ago. (Notice that "mab" on the end of the name. It's a monoclonal antibody, like Rituxan, or rituximab.)
The second winner is Dr. Tasuku Honjo Kyoto University in Japan. He discovered PD-1, a protein on T cells. "PD" stands for "Programmed Cell Death." All cells die a natural death, and PD-1 plays a role in that (the cells are programmed to die). But it can also keep cells from dying, which is where cancer comes in -- cells don't die and grow uncontrollably.
Like the CTLA-4, treatments were developed that stopped PD-1 from stopping the immune system. Some of the treatments that work as anti-PD-1 are Nivolumab (also known as Opdivo) and Pembrolizumab (also known as Keytruda). Each of them work on a bunch of different types of cancer.
Here's your Follicular Lymphoma connection: Keytruda has been approved as a treatment for Hodgkin's Lymphoma, and there are trials for using it in combinations with other treatments for FL. Opdivo is also being tested in FL patients, in combinations. Early results look promising. The same is true for Ipilimumab (though the results may not be as promising).
None of that research has produced anything that will be available to patients anytime soon, but if you need treatments [not that I'm hoping you do], it's another thing to ask your doctor about, to see if any clinical trials would make sense for your situation.
Immunotherapy is one of those things that gets oncologists and researchers very excited. At the end of 2013, the journal Science called Immunotherapy the cancer breakthrough of the year. If you want to learn more about Immunotherapy, I suggest you start here.
So just like a sports fan who refers to his favorite team as "us," I feel a little bit of pride in knowing that a couple of "us" won the Nobel Prize. Gives me even more hope for the future.
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