More good news for CAR-T -- the Zuma-1 trial is reporting good results from the 6 month follow-up of 101 patients with aggressive lymphoma.
Let me make that clear: this news has to do with patients with aggressive lymphomas. I wrote about the 3 month results of the trial in February. The patients were divided into two cohorts. Cohort 1 was made up of 77 patients with Diffuse Large B Cell Lymphoma. The other 24 were in cohort 2, and included a small number of patients with Transformed Follicular Lymphoma. It's those few transformed FL patients that really caught my eye. They did very well in the first trial.
The numbers are now in for the 6 month follow up. The responses are down some -- patients that had responded immediately and kept their response up for 3 months were very high (for all 101 patients in both cohorts, there was an 82% Overall Response, and 54% Complete Response). After 6 months, the numbers are 41% OR and 36% CR. Still very good, though not as eye-popping as the first results.
For patients in cohort 2, which included the transformed FL patients, the results were even better than the whole group: at 3 months, 83% Overall Response and 71% Complete Response. After 6 months, they also dropped, but not as much: 54% OR and 50% CR.
Unfortunately, the 6 month update does not include separate numbers for the transformed Follicular Lymphoma patients. And it was a pretty small number of FL patients to begin with (just 6).
Still, those are darn good numbers. As someone who (like many of you) always has transformation in the back of mind, I like to hear about a treatment that helped half the people who took it.
All of thee patients, by the way, are chemorefractory -- that is, they had chemotherapy, but it didn't work. It would be great to have another back-up for CHOP.
The other piece of good news from this is that side-effects seemed to be about the same after 6 months as they were after 3 months. There were still some significant side effects (many related to lowered blood counts of different types), though they seemed manageable. And a few side efefcts went down, including patients with Cytokine Release Syndrome (CRS), which fell from 18% to 13%. (That's probably the most serious of the side effects, and comes when the body is overwhelmed with trying to clean up all of the cancer cells that the CAR-T is killing off so quickly.)
The full results will be presented in April at the American
Association for Cancer Research conference. The company that makes this CAR-T treatment is planning to use these results to start seeking regulatory approval for the treatment. That could be good news for all of us.
I'll keep on keeping an eye out for more promising CAR-T news.
Tuesday, March 14, 2017
Saturday, March 11, 2017
Memories (Not the Good Kind)
I had an interesting experience yesterday.
My wife had an appointment for some testing at the hospital near us. (She's fine, in case you were worried.) We went up to the second floor of one of the buildings, and as she was checking in, I got a very strange sense that I'd been there before. The building is kind of pyramid-shaped, with one wall completely made of glass windows. In the middle if the waiting area, there was a large planter in the middle.
I knew those windows. I knew that planter.
This room was the same room I was in when I had probably the worst day of my life.
************************
In the 9 years since I was diagnosed, the hospital has built a new oncology wing. Oncology departments used to spread all over the hospital, and 9 years ago, this was where Hematology was located.
After I was diagnosed, and after the initial testing with Dr. R, he recommended I see a specialist, so I could establish a relationship with one just in case I needed it. Dr. R was in a private practice, and Dr. C, the specialist, was at the research hospital. I made an appointment to see Dr. C at the hospital.
Dr. R had warned me that Dr. C was very good, but also very honest. He wasn't going to sugarcoat anything. I wasn't worried. I didn't think I had much to worry about. By the time I saw Dr. C, I was beginning to understand more about Follicular Lymphoma. I was looking at best-case scenarios. Dr. R had told me that most people won't die from Follicular Lymphoma. It was a slow-growing, indolent cancer that I could have for many years.
Dr. C was indeed more straightforward with me. It was a good visit, and he told me some things that made me happy -- he talked about new treatments that were coming up that he was very excited about, like a vaccine (which ended up not working out in trails). He told me that anything I read online was already out of date -- things were happening that quickly in Follicular Lymphoma research.
And then I made some comment that was in line with what I had heard from Dr. R. Something like, "But people don't die from Follicular Lymphoma."
And that's when Dr. C scraped off the sugar from that bitter pill. "Oh," he said, "this will reduce your life span."
************************
I'm always amazed at the stories we tell ourselves. Like any good story teller, we choose details to create the narrative that we want, and ignore others if they don't help us make our point. We lie to ourselves, in a way. From the day I was diagnosed, I picked the details that made my story happy. People don't die from Follicular Lymphoma. I'm going to be OK.
And then, within just a few seconds, my story turned completely around.
After I met with Dr. C, he asked me to stick around. It was January, and I hadn't gotten a flu shot, and he thought I should have one. We went back into the waiting room.
I remember those windows. I remember those plants.
Yesterday was a cold snowy day. That day nine years ago was cold but sunny. I remember the waiting room being very crowded, and I took a seat near the window, with the sun hitting me in the face. I remember being hot and cold at the same time.
And I remember looking around and seeing sick people. I'd been to Dr. R's office three times already at that point, but I never really saw anyone who looked sick. Now, in Dr. C's waiting room, all I could see were sick people. The Stem Cell Transplant Center was around the corner, and I was in a room with people with heads bald from chemo, pale and skinny. It was finally hitting me -- I had cancer.
I was taken down the hall and given my flu shot, and as I walked back to waiting room, I went past a wall rack full of pamphlets about different types of lymphoma. I'd been reading about FL for a solid week, but I grabbed the Follicular Lymphoma pamphlet anyway.
That was a mistake. I don't remember the exact numbers that I read, but I looked at survival rates, and it said something that struck me as bad. Maybe an 80% OS rate for 5 years, and a 65% OS for 10 years? I'm sure those numbers are wrong, but whatever they were, the one thing that drilled into my brain was What if I'm one of the 20% that dies in 5 years?
Dr. C's statement about life span. The numbers on the pamphlet. The bald heads of the patients around me.
It's amazing how quickly we change our stories. We choose the details to tell ourselves, and we ignore others.
I went into a deep depression for about two weeks. I worried about my wife and my three young kids. I broke into tears every half hour or so and his them from my family.
(It was after two weeks that I finally told my wife how I was feeling, and she told me that we'd get through it together. New details for a new story.)
***************************
So yesterday, I recognized those windows, and I recognized those plants. As my wife sat in the nearly empty waiting room to be called in, I looked around for a directory, to see if this really was Hematology. Before she got called in, I told her that I thought this was the same room.
She went in for the tests by herself. (Even after 24 years of marriage, her heart still flutters when I walk in the room, and I was afraid my being there with her would mess up whatever tests they were doing.)
So I sat by myself in that waiting room, for the 3 hours or so that the tests took. I read a book that I'd brought with me. I got up and walked around. Sure enough, I saw a bronze plaque that had something to do with an important donor and Hematology. This was the place. I also found a big Andy Warhol-type print of a local personality, his face repeated like Marilyn Monroe's, hanging on the wall. This personality had blood cancer, too. It's funny -- one memory of that bad day was seeing him in the hallway. This was most definitely the old Hematology department.
So I read my book, and wandered around, and even took a nap for a half hour in the stiff waiting room chair.
all
Were you expecting that, during my nap, I had a horrible dream about thqat bhorrible day 9 years ago?
No. I didn't really dream at all. I sat in that same waiting room, my back against the big planter, looking at the snow falling out the window. It's a new department now. New details. New story.
**************************
This morning, my wife apologized for not remembering how bad a day that was. She remembered being hit by the site of the chemo patients. But she didn't remember Dr. C saying anything that upsetting to me.
I said to her, "That's because I never told you how upsetting it was."
We choose the details to shape the stories that we want to tell, to ourselves and to others.
It's been 9 years since that bad day. There's no way I could slip back into the way I felt all those years ago. My story is so much different now than it was then -- the story I tell myself, the story I tell my wife, the story I tell all of you.
We are the writers of our own stories. Just because we ignore some details, it doesn't mean that they aren't there. I can tell all the stories I want about not having cancer. That won't change the fact that I have it.
But the stories we tell can shape the way we look at the world, and the way we walk through it every day.
We all tell our own stories. You all know the story I tell.
Decide which story you'll tell yourself.
My wife had an appointment for some testing at the hospital near us. (She's fine, in case you were worried.) We went up to the second floor of one of the buildings, and as she was checking in, I got a very strange sense that I'd been there before. The building is kind of pyramid-shaped, with one wall completely made of glass windows. In the middle if the waiting area, there was a large planter in the middle.
I knew those windows. I knew that planter.
This room was the same room I was in when I had probably the worst day of my life.
************************
In the 9 years since I was diagnosed, the hospital has built a new oncology wing. Oncology departments used to spread all over the hospital, and 9 years ago, this was where Hematology was located.
After I was diagnosed, and after the initial testing with Dr. R, he recommended I see a specialist, so I could establish a relationship with one just in case I needed it. Dr. R was in a private practice, and Dr. C, the specialist, was at the research hospital. I made an appointment to see Dr. C at the hospital.
Dr. R had warned me that Dr. C was very good, but also very honest. He wasn't going to sugarcoat anything. I wasn't worried. I didn't think I had much to worry about. By the time I saw Dr. C, I was beginning to understand more about Follicular Lymphoma. I was looking at best-case scenarios. Dr. R had told me that most people won't die from Follicular Lymphoma. It was a slow-growing, indolent cancer that I could have for many years.
Dr. C was indeed more straightforward with me. It was a good visit, and he told me some things that made me happy -- he talked about new treatments that were coming up that he was very excited about, like a vaccine (which ended up not working out in trails). He told me that anything I read online was already out of date -- things were happening that quickly in Follicular Lymphoma research.
And then I made some comment that was in line with what I had heard from Dr. R. Something like, "But people don't die from Follicular Lymphoma."
And that's when Dr. C scraped off the sugar from that bitter pill. "Oh," he said, "this will reduce your life span."
************************
I'm always amazed at the stories we tell ourselves. Like any good story teller, we choose details to create the narrative that we want, and ignore others if they don't help us make our point. We lie to ourselves, in a way. From the day I was diagnosed, I picked the details that made my story happy. People don't die from Follicular Lymphoma. I'm going to be OK.
And then, within just a few seconds, my story turned completely around.
After I met with Dr. C, he asked me to stick around. It was January, and I hadn't gotten a flu shot, and he thought I should have one. We went back into the waiting room.
I remember those windows. I remember those plants.
Yesterday was a cold snowy day. That day nine years ago was cold but sunny. I remember the waiting room being very crowded, and I took a seat near the window, with the sun hitting me in the face. I remember being hot and cold at the same time.
And I remember looking around and seeing sick people. I'd been to Dr. R's office three times already at that point, but I never really saw anyone who looked sick. Now, in Dr. C's waiting room, all I could see were sick people. The Stem Cell Transplant Center was around the corner, and I was in a room with people with heads bald from chemo, pale and skinny. It was finally hitting me -- I had cancer.
I was taken down the hall and given my flu shot, and as I walked back to waiting room, I went past a wall rack full of pamphlets about different types of lymphoma. I'd been reading about FL for a solid week, but I grabbed the Follicular Lymphoma pamphlet anyway.
That was a mistake. I don't remember the exact numbers that I read, but I looked at survival rates, and it said something that struck me as bad. Maybe an 80% OS rate for 5 years, and a 65% OS for 10 years? I'm sure those numbers are wrong, but whatever they were, the one thing that drilled into my brain was What if I'm one of the 20% that dies in 5 years?
Dr. C's statement about life span. The numbers on the pamphlet. The bald heads of the patients around me.
It's amazing how quickly we change our stories. We choose the details to tell ourselves, and we ignore others.
I went into a deep depression for about two weeks. I worried about my wife and my three young kids. I broke into tears every half hour or so and his them from my family.
(It was after two weeks that I finally told my wife how I was feeling, and she told me that we'd get through it together. New details for a new story.)
***************************
So yesterday, I recognized those windows, and I recognized those plants. As my wife sat in the nearly empty waiting room to be called in, I looked around for a directory, to see if this really was Hematology. Before she got called in, I told her that I thought this was the same room.
She went in for the tests by herself. (Even after 24 years of marriage, her heart still flutters when I walk in the room, and I was afraid my being there with her would mess up whatever tests they were doing.)
So I sat by myself in that waiting room, for the 3 hours or so that the tests took. I read a book that I'd brought with me. I got up and walked around. Sure enough, I saw a bronze plaque that had something to do with an important donor and Hematology. This was the place. I also found a big Andy Warhol-type print of a local personality, his face repeated like Marilyn Monroe's, hanging on the wall. This personality had blood cancer, too. It's funny -- one memory of that bad day was seeing him in the hallway. This was most definitely the old Hematology department.
So I read my book, and wandered around, and even took a nap for a half hour in the stiff waiting room chair.
all
Were you expecting that, during my nap, I had a horrible dream about thqat bhorrible day 9 years ago?
No. I didn't really dream at all. I sat in that same waiting room, my back against the big planter, looking at the snow falling out the window. It's a new department now. New details. New story.
**************************
This morning, my wife apologized for not remembering how bad a day that was. She remembered being hit by the site of the chemo patients. But she didn't remember Dr. C saying anything that upsetting to me.
I said to her, "That's because I never told you how upsetting it was."
We choose the details to shape the stories that we want to tell, to ourselves and to others.
It's been 9 years since that bad day. There's no way I could slip back into the way I felt all those years ago. My story is so much different now than it was then -- the story I tell myself, the story I tell my wife, the story I tell all of you.
We are the writers of our own stories. Just because we ignore some details, it doesn't mean that they aren't there. I can tell all the stories I want about not having cancer. That won't change the fact that I have it.
But the stories we tell can shape the way we look at the world, and the way we walk through it every day.
We all tell our own stories. You all know the story I tell.
Decide which story you'll tell yourself.
Tuesday, March 7, 2017
Follicular Lymphoma Videos
I cut my finger today and needed stitches. (I was chopping kale, trying to healthy. I should know better.) My finger is all wrapped up, so it's hard to type.
So I'll hold off for a few days on giving you a long post, and give you some videos to watch instead.
(I feel like a teacher who's too hungover to deal with the class, and jusy shows them movies so he can turn out the lights for a while...)
The videos are from OncLive, posted over the last few weeks, and give brief updates on topics in Follicular Lymphoma.
The first features Dr. Gilles Salles, who discusses frontline treatments for FL. He mentions the situations and the options: observation/watching and waiting for patients without symptoms, Rituxan for patients who want treatment (though he isn't impressed with R-maintenance for those patients without symptoms), and for patients with symptoms, R-CHOP or R-Bendamustine (though he notes that Bendamustine is showing some new toxicity that earlier studies hadn't seen). New agents: Obituzimab and R-squared, which show some promise.
Next, Dr, Nathan Fowler explains what FLIPI scores are. This one is important, I think, because lots of us hear about FLIPI but don't completely understand it. If you watch the video, you'll notice that he says FLIPI predicts a group's outcomes, not the individuals within that group. That's important. FLIPI can help a doctor guess what an outcome might be, and prepare for it, but it really says nothing about an individual. FLIPI scores aren't useful in that way at all.
Finally, back to Dr. Salles, who discusses immune responses. Treatments like Lenalidimide can help the immune system fight against the cancer. Other newer treatments can do the same thing, using different tactics.
OK, that was more typing than I planned, but that's typical.
I'm going to have some hot chocolate and a pain killer and go to bed.
More in a few days when the bandage comes off.
So I'll hold off for a few days on giving you a long post, and give you some videos to watch instead.
(I feel like a teacher who's too hungover to deal with the class, and jusy shows them movies so he can turn out the lights for a while...)
The videos are from OncLive, posted over the last few weeks, and give brief updates on topics in Follicular Lymphoma.
The first features Dr. Gilles Salles, who discusses frontline treatments for FL. He mentions the situations and the options: observation/watching and waiting for patients without symptoms, Rituxan for patients who want treatment (though he isn't impressed with R-maintenance for those patients without symptoms), and for patients with symptoms, R-CHOP or R-Bendamustine (though he notes that Bendamustine is showing some new toxicity that earlier studies hadn't seen). New agents: Obituzimab and R-squared, which show some promise.
Next, Dr, Nathan Fowler explains what FLIPI scores are. This one is important, I think, because lots of us hear about FLIPI but don't completely understand it. If you watch the video, you'll notice that he says FLIPI predicts a group's outcomes, not the individuals within that group. That's important. FLIPI can help a doctor guess what an outcome might be, and prepare for it, but it really says nothing about an individual. FLIPI scores aren't useful in that way at all.
Finally, back to Dr. Salles, who discusses immune responses. Treatments like Lenalidimide can help the immune system fight against the cancer. Other newer treatments can do the same thing, using different tactics.
OK, that was more typing than I planned, but that's typical.
I'm going to have some hot chocolate and a pain killer and go to bed.
More in a few days when the bandage comes off.
obinutuzumab
Thursday, March 2, 2017
12 Things to Say to Someone with Cancer
I saw this piece a few days ago, and it reminded me of times past: "12 Text Messages to Send to Someone with Cancer."
I used to see a lot of messages like this, about things to say to people with cancer, and things not to say. I noticed them a lot more back when I was closer to my diagnosis, probably because people used to say things to me that were not always well thought-out.
So this one brings back some memories -- not always good memories, but in some ways, it's nice to think about how far I have come in 9 years. Physically and emotionally, I have come a long way. Things don't bother me as much as they used to.
Here are some of the things I like about this list:
These are great, not just because they involve food. They offer something real. It's easy to say "Let me know if there's anything you need," because for a lot of patients, they don't know where to begin asking for things. But a definite suggestion, like running an errand or offering a meal -- that means something. A a cancer patient, I don't have to do the work of thinking about what to ask for. The most helpful thing to offer is something specific.
But really, the best thing about the article is the advice to do all of this by text.
Technology is a wonderful thing. The internet puts so much information within easy reach for us. It allows us to share information with one another. As much as cancer treatments have changed in 10 years, the way we get information has changed (for the better) just as much.
Remember, the whole reason I started this blog all those years ago was because I knew it would be easier to let people know what was happening with me. I knew people would be curious, but "wouldn't want to bother us." Or they might get the wrong information about my condition from someone who didn't have the whole story. By sending out a web address, people could check for themselves, and hear it straight from me.
As the article says, technology also gives us some distance. Technology is fascinating that way -- it connects us and separates us at the same time. A text message, rather than phone call, gives the patient some time to respond, to think about what to say. Maybe that cup of tea isn't the best idea right now. Maybe that meal (or any meal) just doesn't sound good. Maybe a visit is the last thing someone wants. It's a a lot easier to say No by text than by phone, or face-to-face.
I discovered this early on. If I knew I was going to meet up with someone who didn't know about my diagnosis, I made sure to email them and let them know, before we met up. I wanted them to have time to process it in their own way. I learned this lesson the hard way. I mentioned to someone at work that I had cancer. It was someone who had already received an email about it, and apparently didn't read it. She broke down in tears in front of me, sobbing about what my kids would do if anything happened to me. This was exactly the last thing I needed to be thinking about that day.
I learned the lesson -- technology creates enough distance now to let us get closer later on.
So if you're in that state, where people don't know what to say to you, or worse, they're saying the wrong thing, I recommend you post that article on your Facebook page, or send it out to your email list. Maybe someone will get the hint.
But mostly, have patience with them. They haven't had the life-changing experience of being a cancer patient. They're probably just not as strong as you are.....
I used to see a lot of messages like this, about things to say to people with cancer, and things not to say. I noticed them a lot more back when I was closer to my diagnosis, probably because people used to say things to me that were not always well thought-out.
So this one brings back some memories -- not always good memories, but in some ways, it's nice to think about how far I have come in 9 years. Physically and emotionally, I have come a long way. Things don't bother me as much as they used to.
Here are some of the things I like about this list:
- I don’t know what to say, but please know I’m always here for you.
- I’m headed to the grocery store. What can I pick up for you and your family?
- I made dinner for your family. When can I drop it off? Note: It tastes great even if it has been frozen.
These are great, not just because they involve food. They offer something real. It's easy to say "Let me know if there's anything you need," because for a lot of patients, they don't know where to begin asking for things. But a definite suggestion, like running an errand or offering a meal -- that means something. A a cancer patient, I don't have to do the work of thinking about what to ask for. The most helpful thing to offer is something specific.
- I just found this great new Earl Grey tea. Can I stop by to share a cup with you?
But really, the best thing about the article is the advice to do all of this by text.
Technology is a wonderful thing. The internet puts so much information within easy reach for us. It allows us to share information with one another. As much as cancer treatments have changed in 10 years, the way we get information has changed (for the better) just as much.
Remember, the whole reason I started this blog all those years ago was because I knew it would be easier to let people know what was happening with me. I knew people would be curious, but "wouldn't want to bother us." Or they might get the wrong information about my condition from someone who didn't have the whole story. By sending out a web address, people could check for themselves, and hear it straight from me.
As the article says, technology also gives us some distance. Technology is fascinating that way -- it connects us and separates us at the same time. A text message, rather than phone call, gives the patient some time to respond, to think about what to say. Maybe that cup of tea isn't the best idea right now. Maybe that meal (or any meal) just doesn't sound good. Maybe a visit is the last thing someone wants. It's a a lot easier to say No by text than by phone, or face-to-face.
I discovered this early on. If I knew I was going to meet up with someone who didn't know about my diagnosis, I made sure to email them and let them know, before we met up. I wanted them to have time to process it in their own way. I learned this lesson the hard way. I mentioned to someone at work that I had cancer. It was someone who had already received an email about it, and apparently didn't read it. She broke down in tears in front of me, sobbing about what my kids would do if anything happened to me. This was exactly the last thing I needed to be thinking about that day.
I learned the lesson -- technology creates enough distance now to let us get closer later on.
So if you're in that state, where people don't know what to say to you, or worse, they're saying the wrong thing, I recommend you post that article on your Facebook page, or send it out to your email list. Maybe someone will get the hint.
But mostly, have patience with them. They haven't had the life-changing experience of being a cancer patient. They're probably just not as strong as you are.....
Saturday, February 25, 2017
Rituxan Biosimilar Approval
A biosimilar for Rituxan has been approved for use in Europe. It is called Truxima, and will be available in the UK, Germany, Italy, Netherlands, Belgium, Republic of Ireland and Luxembourg.
Some background: Cancer treatments cost money to develop. When they fail, the company that develops them loses money. So be it -- it's the risk those companies take. But when they are successful, they can make billions of dollars for the business. Rituxan (also known as Mabthera is other parts of the world) is one of those successes.
The company that creates a successful treatment gets exclusive rights to that treatment for a set number of years. In a sense, this a reward for their taking the risk to do the research and testing that goes into a successful treatment.
But that reward doesn't last forever. After that set period, other companies are allowed to create "biosimilars" -- copies of the treatments that work in the same way (and, after some testing, with the same results).
A biosimilar isn't the exact same thing as the original. That's right in the name -- it is "similar" to it. The company that makes the biosimilar also has to invest in production. They have to figure out what the original treatment was, and test whether or not it will work. But they don 't have to spend money on marketing the treatment, the way the original maker had to. The biosimilar is coming into a situation where people already know that it works.
And so for that reason, biosimilars are (or should be) less expensive than the original. A lot of the cost of the treatment has already been paid. The hope is that Truxima will save patients and healthcare systems lots of money because it will be sold cheaper than Rituxan/Mabthera.
There is a chance that doctors will not prescribe the biosimilar, and will stick to the original, for whatever reason. And there is a chance that, for some patients, the biosimilar will be just different enough from the original that it won't work as well. (My wife takes a medication that just won't work in the non-original form.)
But overall, I think biosimilars are a good thing. The biosimilar version of Rituxan will likely be in the news sometime this year. I'll keep an eye out.
Some background: Cancer treatments cost money to develop. When they fail, the company that develops them loses money. So be it -- it's the risk those companies take. But when they are successful, they can make billions of dollars for the business. Rituxan (also known as Mabthera is other parts of the world) is one of those successes.
The company that creates a successful treatment gets exclusive rights to that treatment for a set number of years. In a sense, this a reward for their taking the risk to do the research and testing that goes into a successful treatment.
But that reward doesn't last forever. After that set period, other companies are allowed to create "biosimilars" -- copies of the treatments that work in the same way (and, after some testing, with the same results).
A biosimilar isn't the exact same thing as the original. That's right in the name -- it is "similar" to it. The company that makes the biosimilar also has to invest in production. They have to figure out what the original treatment was, and test whether or not it will work. But they don 't have to spend money on marketing the treatment, the way the original maker had to. The biosimilar is coming into a situation where people already know that it works.
And so for that reason, biosimilars are (or should be) less expensive than the original. A lot of the cost of the treatment has already been paid. The hope is that Truxima will save patients and healthcare systems lots of money because it will be sold cheaper than Rituxan/Mabthera.
There is a chance that doctors will not prescribe the biosimilar, and will stick to the original, for whatever reason. And there is a chance that, for some patients, the biosimilar will be just different enough from the original that it won't work as well. (My wife takes a medication that just won't work in the non-original form.)
But overall, I think biosimilars are a good thing. The biosimilar version of Rituxan will likely be in the news sometime this year. I'll keep an eye out.
Tuesday, February 21, 2017
Hepatitis C Treatment Works for Follicular Lymphoma?
A reader named Ilia posted a comment yesterday about a possible treatment for Follicular Lymphoma:
I would like to get your opinion on something more exciting than watching and waiting - how about a complete remission of FL following anti- viral therapy for Hepatitis C. It was published in New England Journal of Medicine in October and would not drawn my special attention except one of the authors is Adreshna.
I hadn't heard of this article, so I thought it was worth looking into, and writing about.
But this is also a good time to remind everyone of something. When I'm asked for my opinion on something related to Follicular Lymphoma, I think it's important to remind everyone that I am not an oncologist, or a medical doctor of any kind. I'm not a biologist, or scientist, or researcher. I like to call myself a Cancer Nerd. I'm someone who has an interest in cancer, especially Follicular Lymphoma, and I have enough of a background in science to be able to understand medical journal articles and comment on them. So my opinion is only worth so much. If I'm "giving my two cents," as the saying goes, there are plenty of experts whose opinion on FL is worth two dollars, or pounds, or euros, or whatever.
So as long as we're straight on that, let's get to Ilia's comment.
The piece did indeed appear in the prestigious New England Journal of Medicine last October. It's called "Remission of Follicular Lymphoma after Treatment for Hepatitis C Virus Infection."
But there's an important distinction between this study and many others that appear in medical journals. Most of the articles that I comment on are peer-reviewed studies. That means they report on clinical trials or other research, and before it gets published in the journal, it is approved by some other experts in the field. They make sure that the trial was set up properly, and the results and conclusions are really what the authors say they are. Peer-reviewed articles are the gold standard -- you can trust what they say.
On the other hand, the article on Hepatitis C treatments is labeled "Correspondence" -- a letter to the editors. Most of the time, correspondence is a comment on an article that the journal published, though sometimes the letter might describe an interesting medical situation. It's a way of getting other doctors or researchers interested in exploring the subject further.
In this particular letter, the authors are doing just that -- just describing an interesting situation. As the title implies, the interesting situation is that a patient who had both Follicular Lymphoma and Hepatitis C. The patient was given treatment for the Hepatitis, and it put the Lymphoma into remission.
The important thing about this (and maybe why there wasn't a bigger deal made of it) is that the letter describes ONE patient. Clinical trials that result in a treatment being approved will often involve hundred of patients. That's the only way to make sure that the treatment will work on a large number of patients. ONE patient won't prove anything -- but it might get enough people interested to explore it more.
And that's just what happened here. There is a clinical trial in the U.S. that is looking into the Hepatitis C treatments Sofosbuvir and Ribavirin, and whether or not they will help with Follicular Lymphoma and other indolent lymphomas. The two treatments are anti-viral agents -- in different ways, they mess with the viruses that cause Hepatitis C. Ribavirin, for example, messes with RNA , which is necessary for DNA to copy itself, and thus for a virus to copy itself. I don't know the exact way that it works with lymphoma, but it makes sense that it messes with cancer cells trying to copy themselves.
So that's where we are with this potential treatment. It's an early trial -- only 21 patients are being recruited, and it will be at least a year before any results are in.
So Ilia, here's my opinion -- it looks promising enough for a trial. Not all trials are successful -- if they were, we'd have a whole lot more treatments than we do.
But that doesn't mean I'm not hopeful about it.
Thanks for making me aware of. I'll be sure to keep an eye on possible results when they come in.
I would like to get your opinion on something more exciting than watching and waiting - how about a complete remission of FL following anti- viral therapy for Hepatitis C. It was published in New England Journal of Medicine in October and would not drawn my special attention except one of the authors is Adreshna.
I hadn't heard of this article, so I thought it was worth looking into, and writing about.
But this is also a good time to remind everyone of something. When I'm asked for my opinion on something related to Follicular Lymphoma, I think it's important to remind everyone that I am not an oncologist, or a medical doctor of any kind. I'm not a biologist, or scientist, or researcher. I like to call myself a Cancer Nerd. I'm someone who has an interest in cancer, especially Follicular Lymphoma, and I have enough of a background in science to be able to understand medical journal articles and comment on them. So my opinion is only worth so much. If I'm "giving my two cents," as the saying goes, there are plenty of experts whose opinion on FL is worth two dollars, or pounds, or euros, or whatever.
So as long as we're straight on that, let's get to Ilia's comment.
The piece did indeed appear in the prestigious New England Journal of Medicine last October. It's called "Remission of Follicular Lymphoma after Treatment for Hepatitis C Virus Infection."
But there's an important distinction between this study and many others that appear in medical journals. Most of the articles that I comment on are peer-reviewed studies. That means they report on clinical trials or other research, and before it gets published in the journal, it is approved by some other experts in the field. They make sure that the trial was set up properly, and the results and conclusions are really what the authors say they are. Peer-reviewed articles are the gold standard -- you can trust what they say.
On the other hand, the article on Hepatitis C treatments is labeled "Correspondence" -- a letter to the editors. Most of the time, correspondence is a comment on an article that the journal published, though sometimes the letter might describe an interesting medical situation. It's a way of getting other doctors or researchers interested in exploring the subject further.
In this particular letter, the authors are doing just that -- just describing an interesting situation. As the title implies, the interesting situation is that a patient who had both Follicular Lymphoma and Hepatitis C. The patient was given treatment for the Hepatitis, and it put the Lymphoma into remission.
The important thing about this (and maybe why there wasn't a bigger deal made of it) is that the letter describes ONE patient. Clinical trials that result in a treatment being approved will often involve hundred of patients. That's the only way to make sure that the treatment will work on a large number of patients. ONE patient won't prove anything -- but it might get enough people interested to explore it more.
And that's just what happened here. There is a clinical trial in the U.S. that is looking into the Hepatitis C treatments Sofosbuvir and Ribavirin, and whether or not they will help with Follicular Lymphoma and other indolent lymphomas. The two treatments are anti-viral agents -- in different ways, they mess with the viruses that cause Hepatitis C. Ribavirin, for example, messes with RNA , which is necessary for DNA to copy itself, and thus for a virus to copy itself. I don't know the exact way that it works with lymphoma, but it makes sense that it messes with cancer cells trying to copy themselves.
So that's where we are with this potential treatment. It's an early trial -- only 21 patients are being recruited, and it will be at least a year before any results are in.
So Ilia, here's my opinion -- it looks promising enough for a trial. Not all trials are successful -- if they were, we'd have a whole lot more treatments than we do.
But that doesn't mean I'm not hopeful about it.
Thanks for making me aware of. I'll be sure to keep an eye on possible results when they come in.
Thursday, February 16, 2017
Appointment with a New Oncologist
I had an appointment today with a new oncologist. I think I'm going to keep him.😀
First, let me say that my check-up went well. It was the usual -- blood work, a physical exam, and my reporting on how I am feeling. Everything looks great. Blood is normal, I feel fine, and he didn't feel anything weird. I'm good for another 6 months.
Now, a little history, since the focus here is on finding a new oncologist. My first oncologist was Dr. R. I saw him for 8 years, starting on the day after I was diagnosed. I loved Dr. R. He was young, he was well-informed, and he was friendly. I actually looked forward to going to the oncologist. But then he broke my heart and moved to warmer climates, taking a job at a medical school. I miss him. But he seems happy.
After Dr. R, the practice assigned me to Dr. K. I did not like Dr. K very much. He was nice, but he didn't listen, and that was the biggest problem. He seemed to have a rehearsed speech for my visit, and if I tried to tell him I knew about things he was telling me (basic things like what a PET scan was, or the 3 different types of blood cells), he didn't notice or care and just kept talking. During my last visit, he insisted that I get a PET scan. I asked why, and he told me that he didn't think he would find anything on the scan, but he wanted me to get one anyway. I'm a relatively young man with a few scans already under my belt, and I don't think a scan is useful for me at this point, and could actually do more harm than good. But he insisted. At that point, I decided it was time for a new oncologist.
Interestingly, I got a letter from the practice that Dr. K had retired in December, and I would need to find a new oncologist anyway. That might explain some things. He really seemed like someone who had lost interest in the job. As I said, he was a nice guy, and probably had some patients who liked him a lot. But he just wasn't what I needed.
So a month ago, I got a call from the practice. They wanted me to schedule an appointment with Dr. V. The practice I go to is one of about 10 satellite practices for a large teaching and research hospital, attached to a medical school. Most of the oncologists at the satellite practices are clinical oncologists -- their job is to see patients. At the main research hospital, the oncologists see patients, but also do research, conduct clinical trials, and teach at the medical school. Dr. V is one of those oncologists. He works at the main research hospital, and would come to the satellite campus one day a week to see patients.
So I said Yes to an appointment with Dr. V. And I'm glad I did.
Before I describe the appointment, let me say that I know that I am lucky to be able to choose my own oncologist. I know there are lots of cancer patients who can't choose. Maybe they live an an area with only one oncologist nearby. Or maybe their health care plan doesn't give them a choice. I'm sorry that's the case for people, and I wish it was different. I'm lucky to be in a situation where I can choose my oncologist, at least to some extent.
My visit with Dr. V opened with a review of my current medications. We made some small talk as he looked up my record on the computer (he's a fan of jazz music, and I conveniently have a son who is a jazz musician). As he looked at my medications, he asked why I was taking vitamin B-12. I told him that I had been taking another medication that was causing B-12 problems, but that I had taken myself off of that medication because I was reading about too many side effects. "Well, then maybe it's time to stop taking B-12, too, huh?"
That's a small but important comment. One of the things I liked about Dr. R was his "Do no harm" philosophy -- if there wasn't a good reason for a treatment, or a scan, or some other intervention, then we wouldn't do it. It's what led to my watching and waiting for two years instead of starting on treatment right away. I liked that Dr. V seemed to be taking the same approach.
As we went through my history, that was reinforced. He said he probably wouldn't have given me Rituxan at two years. I explained that I had the Rituxan because of some swelling in my leg, and he agreed that it was a good idea (the notes he had from Dr. K were not very detailed). But that was another example of the n"Do no harm" approach that I liked.
Another example came a few minutes later, when we were discussing my next appointment. He saw that I was getting an appointment every 4 to 6 months. He said, "I really think you could probably stretch this out to a year. We can do 6 months if you'd rather not wait that long, but a year would probably be fine." I said I'd rather do 6 months, which he said was OK. He continued: "I see that Dr. K ordered a PET scan. I'd like to cancel that." I said, enthusiastically, that I was fine with cancelling it. He went on: "We don't do scans like that anymore. Older doctors still believe in surveillance scans, but younger doctors have been trained differently. We worry about too much radiation leading to secondary cancers 20 years from now."
So I was happy about that. He reminded me a lot of Dr. R -- young, friendly, and informed, with a philosophy that matched my own. I was happy that I say him.
But what really clinched it for me was what happened next. We were finishing up, and he asked if I had any final questions. I said, "Yes, just one. As a hematologist, is there anything that excites you about lymphoma treatments these days?"
His eyes got wide, and he said, "LOTS!"
And then he talked to me for 15 minutes straight about what excited him about lymphoma. It was glorious. He didn't dumb it down. But he explained it well. And I did my best to let him know that I understood and was interested.
He told me that he started out as a leukemia specialist, but he switched to lymphoma because he liked his boss so much. But he was glad that he did, because advances in treating leukemia have kind of stalled, but there are lots of interesting advancements happening in lymphoma.
He went through some of the stuff happening in aggressive lymphomas. The goal with all lymphomas is to move away from traditional chemotherapy, though that's hard to do with aggressive types, which do seem to benefit from chemo. But he did say that there were some exciting trials with Immunotherapies that were resulting in 80% response rates with 20-30% Complete Responses. Then he talked about other indolent lymphomas, like CLL and Mantel Cell, that had some exciting new treatments, like Ibrutinib.
And then he got to Follicular Lymphoma. He said FL was "complicated." The goal, as with other lymphomas, is to move away from traditional chemotherapy. There were lots of treatments out there being tested in trials, with different levels of success. He mentioned Idelalisib, which he was very excited about, but which also showed some severe side effects, leading to some trials being shut down. He was involved with one of those trials, and was unhappy about it, because he thinks Idelalisib shows some promise for Follicular Lymphoma.
He talked about another FL trial he is working with right now. The treatment is called G100, and as he described it, it is a vaccine that is injected into affected lymph nodes in one site of the body. The hope is that the vaccine will train the immune system, and it will then travel to affected nodes in other parts of the body. (I confess that I don't know much about this treatment. It's in phase I/II trials, so maybe it's too early to show any strong results. But I'll definitely keep an eye on it.)
And then he ended by saying that what he really loved about being an oncologist is that he can cure people. He has colleagues who are cardiologists. When someone has heart damage, they can help them, but they can't cure them. But an oncologist can. After my appointment, he was going to see someone who had been in remission for about 10 years. "I look at the scan from when he was diagnosed, and the scan from a month ago....the difference between them....it's like we're performing magic...."
You know how I sometimes post videos of lymphoma researchers who talk about treatments with so much excitement? I had one right in front of me. It was so cool.
That's what I need. And that's what I found.
It was a good visit.
First, let me say that my check-up went well. It was the usual -- blood work, a physical exam, and my reporting on how I am feeling. Everything looks great. Blood is normal, I feel fine, and he didn't feel anything weird. I'm good for another 6 months.
Now, a little history, since the focus here is on finding a new oncologist. My first oncologist was Dr. R. I saw him for 8 years, starting on the day after I was diagnosed. I loved Dr. R. He was young, he was well-informed, and he was friendly. I actually looked forward to going to the oncologist. But then he broke my heart and moved to warmer climates, taking a job at a medical school. I miss him. But he seems happy.
After Dr. R, the practice assigned me to Dr. K. I did not like Dr. K very much. He was nice, but he didn't listen, and that was the biggest problem. He seemed to have a rehearsed speech for my visit, and if I tried to tell him I knew about things he was telling me (basic things like what a PET scan was, or the 3 different types of blood cells), he didn't notice or care and just kept talking. During my last visit, he insisted that I get a PET scan. I asked why, and he told me that he didn't think he would find anything on the scan, but he wanted me to get one anyway. I'm a relatively young man with a few scans already under my belt, and I don't think a scan is useful for me at this point, and could actually do more harm than good. But he insisted. At that point, I decided it was time for a new oncologist.
Interestingly, I got a letter from the practice that Dr. K had retired in December, and I would need to find a new oncologist anyway. That might explain some things. He really seemed like someone who had lost interest in the job. As I said, he was a nice guy, and probably had some patients who liked him a lot. But he just wasn't what I needed.
So a month ago, I got a call from the practice. They wanted me to schedule an appointment with Dr. V. The practice I go to is one of about 10 satellite practices for a large teaching and research hospital, attached to a medical school. Most of the oncologists at the satellite practices are clinical oncologists -- their job is to see patients. At the main research hospital, the oncologists see patients, but also do research, conduct clinical trials, and teach at the medical school. Dr. V is one of those oncologists. He works at the main research hospital, and would come to the satellite campus one day a week to see patients.
So I said Yes to an appointment with Dr. V. And I'm glad I did.
Before I describe the appointment, let me say that I know that I am lucky to be able to choose my own oncologist. I know there are lots of cancer patients who can't choose. Maybe they live an an area with only one oncologist nearby. Or maybe their health care plan doesn't give them a choice. I'm sorry that's the case for people, and I wish it was different. I'm lucky to be in a situation where I can choose my oncologist, at least to some extent.
My visit with Dr. V opened with a review of my current medications. We made some small talk as he looked up my record on the computer (he's a fan of jazz music, and I conveniently have a son who is a jazz musician). As he looked at my medications, he asked why I was taking vitamin B-12. I told him that I had been taking another medication that was causing B-12 problems, but that I had taken myself off of that medication because I was reading about too many side effects. "Well, then maybe it's time to stop taking B-12, too, huh?"
That's a small but important comment. One of the things I liked about Dr. R was his "Do no harm" philosophy -- if there wasn't a good reason for a treatment, or a scan, or some other intervention, then we wouldn't do it. It's what led to my watching and waiting for two years instead of starting on treatment right away. I liked that Dr. V seemed to be taking the same approach.
As we went through my history, that was reinforced. He said he probably wouldn't have given me Rituxan at two years. I explained that I had the Rituxan because of some swelling in my leg, and he agreed that it was a good idea (the notes he had from Dr. K were not very detailed). But that was another example of the n"Do no harm" approach that I liked.
Another example came a few minutes later, when we were discussing my next appointment. He saw that I was getting an appointment every 4 to 6 months. He said, "I really think you could probably stretch this out to a year. We can do 6 months if you'd rather not wait that long, but a year would probably be fine." I said I'd rather do 6 months, which he said was OK. He continued: "I see that Dr. K ordered a PET scan. I'd like to cancel that." I said, enthusiastically, that I was fine with cancelling it. He went on: "We don't do scans like that anymore. Older doctors still believe in surveillance scans, but younger doctors have been trained differently. We worry about too much radiation leading to secondary cancers 20 years from now."
So I was happy about that. He reminded me a lot of Dr. R -- young, friendly, and informed, with a philosophy that matched my own. I was happy that I say him.
But what really clinched it for me was what happened next. We were finishing up, and he asked if I had any final questions. I said, "Yes, just one. As a hematologist, is there anything that excites you about lymphoma treatments these days?"
His eyes got wide, and he said, "LOTS!"
And then he talked to me for 15 minutes straight about what excited him about lymphoma. It was glorious. He didn't dumb it down. But he explained it well. And I did my best to let him know that I understood and was interested.
He told me that he started out as a leukemia specialist, but he switched to lymphoma because he liked his boss so much. But he was glad that he did, because advances in treating leukemia have kind of stalled, but there are lots of interesting advancements happening in lymphoma.
He went through some of the stuff happening in aggressive lymphomas. The goal with all lymphomas is to move away from traditional chemotherapy, though that's hard to do with aggressive types, which do seem to benefit from chemo. But he did say that there were some exciting trials with Immunotherapies that were resulting in 80% response rates with 20-30% Complete Responses. Then he talked about other indolent lymphomas, like CLL and Mantel Cell, that had some exciting new treatments, like Ibrutinib.
And then he got to Follicular Lymphoma. He said FL was "complicated." The goal, as with other lymphomas, is to move away from traditional chemotherapy. There were lots of treatments out there being tested in trials, with different levels of success. He mentioned Idelalisib, which he was very excited about, but which also showed some severe side effects, leading to some trials being shut down. He was involved with one of those trials, and was unhappy about it, because he thinks Idelalisib shows some promise for Follicular Lymphoma.
He talked about another FL trial he is working with right now. The treatment is called G100, and as he described it, it is a vaccine that is injected into affected lymph nodes in one site of the body. The hope is that the vaccine will train the immune system, and it will then travel to affected nodes in other parts of the body. (I confess that I don't know much about this treatment. It's in phase I/II trials, so maybe it's too early to show any strong results. But I'll definitely keep an eye on it.)
And then he ended by saying that what he really loved about being an oncologist is that he can cure people. He has colleagues who are cardiologists. When someone has heart damage, they can help them, but they can't cure them. But an oncologist can. After my appointment, he was going to see someone who had been in remission for about 10 years. "I look at the scan from when he was diagnosed, and the scan from a month ago....the difference between them....it's like we're performing magic...."
You know how I sometimes post videos of lymphoma researchers who talk about treatments with so much excitement? I had one right in front of me. It was so cool.
That's what I need. And that's what I found.
It was a good visit.
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