Charlene McMann and Scott Seaman are featured on the WGN Radio show hosted by Patti Vasquez, discussing their book Batting and Beating Cancer: The Cancer Survival Book.
I haven't read the book, so I can't speak to it directly, but their discussion of the book is interesting. I particularly like that they pay attention to issues for caregivers. We so often forget about the ones that take care of us, the patients, and what they go through. They deserve some recognition.
I've written about McMann and Seaman before. They are founders of the Chicago Blood Cancer Foundation, and have done lots to raise awareness of (and money for) blood cancer issues in Chicago and around the country. Scott is a lymphoma survivor himself.
Good stuff. Worth the 25 minutes to listen.
Friday, July 11, 2014
Tuesday, July 8, 2014
Rituxan Substitute?
More Rituxan in the news. (What is the deal with Rituxan these days? Two posts about Rituxan in a row? It's been around forever, but still manages to make news. It's becoming the Joan Rivers of cancer treatments, for crying out loud.)
Anyway, Rituxan is in the news because its patent expires in 2018, meaning other companies can make generic versions -- and sell them cheaper. (A big chunk of the cost of a drug comes from recovering all of the research and development that went into finding, creating, and testing the drug, which can take years. Generics don't have to do all of that work, so they don't have those costs to recover. So, we get cheaper drugs.)
The big issues with generics is that they need "biosimilarity." This is where things get complicated. Many generic drugs are made by recreating a chemical. (It's more complicated than that -- not many of us can make our own home version of ibuprofin or something like that -- but it's fairly straightforward.) Biosimilarity involves drugs or medical products that are produced by living organisms. This includes Rituxan, which is made from mice.
So creating a biosimilar of Rituxan is a lot harder. It's more than just mixing chemicals in a lab; it's trying to duplicate the entire process of creating something that is itself created from a living organism. And when you're dealing with stuff that is or used to be alive, you've got a whole bunch more factors to control that are potentially hard to control.
Of course, the original manufacturer of Rituxan isn't going to make this easy by offering any help.
An article in this month's Leukemia and Lymphoma describes a European attempt (successful) to create a biosimilar version of Rituxan. It's for a medical journal, so it's fairly thick reading, but I think a version aimed at a more popular audience would make for fascinating reading. There are deadlines to be met, with scientists frantically trying to copy things. There are "freshly purified human natural killer cells." And there are two monkeys. They don't have names, but when I write my screenplay based on this article, the monkeys will be called Johnny and Gonzalez. And nobody but my father will get that joke.
Anyway, it's pretty interesting reading, and maybe makes us appreciate how difficult it is to develop the original version of a treatment, let alone a generic version.
It will be interesting to see how the patent expiration plays out, and what we get as a result. Cheaper monoclonal antibodies? Maybe something just a tiny bit better? or a tiny bit worse?
*******************************
A quick note about the next couple of weeks:
I'm off on a vacation with the family, and unlike the vacations I usually take, this one will leave me with limited internet access. I plan to post to Lympho Bob every few days, because it's important to me to keep up with it. But the posts will definitely be shorter, and maybe have some longer stretches in between. My plan is to get back to my usual blogging habits when I get back near the end of the month.
Anyway, Rituxan is in the news because its patent expires in 2018, meaning other companies can make generic versions -- and sell them cheaper. (A big chunk of the cost of a drug comes from recovering all of the research and development that went into finding, creating, and testing the drug, which can take years. Generics don't have to do all of that work, so they don't have those costs to recover. So, we get cheaper drugs.)
The big issues with generics is that they need "biosimilarity." This is where things get complicated. Many generic drugs are made by recreating a chemical. (It's more complicated than that -- not many of us can make our own home version of ibuprofin or something like that -- but it's fairly straightforward.) Biosimilarity involves drugs or medical products that are produced by living organisms. This includes Rituxan, which is made from mice.
So creating a biosimilar of Rituxan is a lot harder. It's more than just mixing chemicals in a lab; it's trying to duplicate the entire process of creating something that is itself created from a living organism. And when you're dealing with stuff that is or used to be alive, you've got a whole bunch more factors to control that are potentially hard to control.
Of course, the original manufacturer of Rituxan isn't going to make this easy by offering any help.
An article in this month's Leukemia and Lymphoma describes a European attempt (successful) to create a biosimilar version of Rituxan. It's for a medical journal, so it's fairly thick reading, but I think a version aimed at a more popular audience would make for fascinating reading. There are deadlines to be met, with scientists frantically trying to copy things. There are "freshly purified human natural killer cells." And there are two monkeys. They don't have names, but when I write my screenplay based on this article, the monkeys will be called Johnny and Gonzalez. And nobody but my father will get that joke.
Anyway, it's pretty interesting reading, and maybe makes us appreciate how difficult it is to develop the original version of a treatment, let alone a generic version.
It will be interesting to see how the patent expiration plays out, and what we get as a result. Cheaper monoclonal antibodies? Maybe something just a tiny bit better? or a tiny bit worse?
*******************************
A quick note about the next couple of weeks:
I'm off on a vacation with the family, and unlike the vacations I usually take, this one will leave me with limited internet access. I plan to post to Lympho Bob every few days, because it's important to me to keep up with it. But the posts will definitely be shorter, and maybe have some longer stretches in between. My plan is to get back to my usual blogging habits when I get back near the end of the month.
Saturday, July 5, 2014
Rituxan and Infections
Good news on a potential side effect of Rituxan: according to a small German study of patients in a single treatment center, Rituxan doesn't seem to increase the likelihood of a patient developing infections.
Rituxan works by targeting the protein CD20 on B cells, the type of white blood cell that (when being normal) works to keep out invaders, or (when being pains the rear) get all cancery and give you Follicular Lymphoma. Rituxan just goes for the CD20 -- it doesn't care if it's on a normal cell or a lymphoma cell.
The problem, of course, is that if Rituxan is wiping out normal cells, then those cells can't do their job of fighting off invaders. Thus, Rituxan can do a good job (warding off cancer) while doing a bad job (keeping the immune system from doing one of its jobs, and thus inviting infections).
This study looked at 125 patients with various types of lymphoma (80 of them had Follicular Lymphoma), who were given Rituxan as a first treatment -- either Rituxan by itself, or as part of a chemotherapy combination (lots of R-CHOP, some R-Bendamustine, and a few others, incluidng some funky German chemotherapies).
The article breaks down the number of patients with the different types of lymphomas, the numbers of patients who received which treatments, and the number and types of infections they developed. All very interesting.
The bottom line, though is this: there was no statistical significance to the number and type of infections. In other words, there is no evidence that receiving Rituxan increases the likelihood of developing an infection.
This is good news. While this has always been a concern, the authors note that very few actual studies have looked to see if the concern should really be a concern.
A couple of important things to consider, though: first, the study looked back at patients who received Rituxan between 2000 and 2005, before Rituxan Maintenance was used widely. It's possible that receiving Rituxan for a prolonged amount of time (after that initial 4 or 6 or 8 weeks) could have a stronger impact on the immune system. Makes sense -- while those first few doses last for a few months, a common course of R-Maintenance could see the effects go for more than 2 years. That might have a greater impact on the immune system, and encourage more infections.
The other important issue: it seems like infections are more likely for people who take Prednisone as part of their chemo (that's the P in CHOP). So that's something to keep an eye on, too.
Overall, though, it seems like good news. From my personal experience, I didn't really have any significant infection issues after my Rituxan. But I was a study of 1, not 125. Good to see it all played out in a broader, more serious study.
Rituxan works by targeting the protein CD20 on B cells, the type of white blood cell that (when being normal) works to keep out invaders, or (when being pains the rear) get all cancery and give you Follicular Lymphoma. Rituxan just goes for the CD20 -- it doesn't care if it's on a normal cell or a lymphoma cell.
The problem, of course, is that if Rituxan is wiping out normal cells, then those cells can't do their job of fighting off invaders. Thus, Rituxan can do a good job (warding off cancer) while doing a bad job (keeping the immune system from doing one of its jobs, and thus inviting infections).
This study looked at 125 patients with various types of lymphoma (80 of them had Follicular Lymphoma), who were given Rituxan as a first treatment -- either Rituxan by itself, or as part of a chemotherapy combination (lots of R-CHOP, some R-Bendamustine, and a few others, incluidng some funky German chemotherapies).
The article breaks down the number of patients with the different types of lymphomas, the numbers of patients who received which treatments, and the number and types of infections they developed. All very interesting.
The bottom line, though is this: there was no statistical significance to the number and type of infections. In other words, there is no evidence that receiving Rituxan increases the likelihood of developing an infection.
This is good news. While this has always been a concern, the authors note that very few actual studies have looked to see if the concern should really be a concern.
A couple of important things to consider, though: first, the study looked back at patients who received Rituxan between 2000 and 2005, before Rituxan Maintenance was used widely. It's possible that receiving Rituxan for a prolonged amount of time (after that initial 4 or 6 or 8 weeks) could have a stronger impact on the immune system. Makes sense -- while those first few doses last for a few months, a common course of R-Maintenance could see the effects go for more than 2 years. That might have a greater impact on the immune system, and encourage more infections.
The other important issue: it seems like infections are more likely for people who take Prednisone as part of their chemo (that's the P in CHOP). So that's something to keep an eye on, too.
Overall, though, it seems like good news. From my personal experience, I didn't really have any significant infection issues after my Rituxan. But I was a study of 1, not 125. Good to see it all played out in a broader, more serious study.
Tuesday, July 1, 2014
A New Vaccine for Follicular Lymphoma?
The blog for Mount Sinai Hospital put out a kind of teaser called "Novel Vaccine Fights Lymphoma" a few days ago. It's a little short on the kind of detail that would let me look into it all a little more, but it gives just enough to make me want to read more.
Researchers at the Tisch Cancer Institute at Mt. Sinai have developed a kind of internal vaccine. It works differently from the way something like BioVaxId works. With BioVax, a patient's immune cells are taken from the blood and trained to recognize cancer cells, then put back into nthe blood to go to work.
This one from Mt. Sinai is different. The focus here is on Dendritic Cells. Dendritic cells are important players in the immune system. In general, when someone's body is invaded by bacteria or a virus or something else that isn't supposed to be there, immune system cells go after it and kill it off. Dendritic cells are the middle men -- they first encounter the invader and then tell the immune cells what's going on, and let them know what kind of invader cell they should be looking for. They're like Bubbles from the The Wire, hanging around on the corner and then telling the police what he saw. (Sorry -- I just binge-watched all 5 seasons of The Wire on Amazon Prime.)
The point is, Dendritic Cells have to do their job of identifying an invader, and telling the immune system cells, before the immune system can attack an invader.
Now, the Mt. Sinai research is trying to take advantage of this natural system. Two "immune-modifying medicines" are injected into the tumor (presumably an effected lymph node; I'd really like to know what the medicines are exactly -- this is one of those places I'm getting sucked in by the tease). The patient is also given two days of low-dose radiation directly into the tumor. (This is standard radiation, not RIT.)
The first medicine sends the Dendritic Cells to the tumor, where they recognize the cells that have been affected by the radiation. The second medicine sends the Dendritic Cells out to the immune cells in the rest of the body, where they learn to recognize the cancer cells and track them down in the rest of the body.
What this is doing is giving the immune system a little push. Under normal circumstances, the immune system would recognize an invader, and all the various cells would do their jobs. But cancer isn't a normal circumstance, and the immune system is deceived by cancer cells. It needs a little help in recognizing and catching the bad guys. (Like Bubbles putting the red hats on the Barksdale crew. Gosh, I hope I'm not the only one out there who watches The Wire....)
This is very early research. Two patients in a trial experiences Partial Responses. But it's encouraging enough to warrant a larger trial of 30 patients.
The lead researcher, Dr. Joshua Brody, plans to present all of this at Lymphoma Conferences starting this summer. It will be interesting to see how the community reacts to it, and how it all gets refined as the research moves along.
Definitely worth keeping an eye on....
Researchers at the Tisch Cancer Institute at Mt. Sinai have developed a kind of internal vaccine. It works differently from the way something like BioVaxId works. With BioVax, a patient's immune cells are taken from the blood and trained to recognize cancer cells, then put back into nthe blood to go to work.
This one from Mt. Sinai is different. The focus here is on Dendritic Cells. Dendritic cells are important players in the immune system. In general, when someone's body is invaded by bacteria or a virus or something else that isn't supposed to be there, immune system cells go after it and kill it off. Dendritic cells are the middle men -- they first encounter the invader and then tell the immune cells what's going on, and let them know what kind of invader cell they should be looking for. They're like Bubbles from the The Wire, hanging around on the corner and then telling the police what he saw. (Sorry -- I just binge-watched all 5 seasons of The Wire on Amazon Prime.)
The point is, Dendritic Cells have to do their job of identifying an invader, and telling the immune system cells, before the immune system can attack an invader.
Now, the Mt. Sinai research is trying to take advantage of this natural system. Two "immune-modifying medicines" are injected into the tumor (presumably an effected lymph node; I'd really like to know what the medicines are exactly -- this is one of those places I'm getting sucked in by the tease). The patient is also given two days of low-dose radiation directly into the tumor. (This is standard radiation, not RIT.)
The first medicine sends the Dendritic Cells to the tumor, where they recognize the cells that have been affected by the radiation. The second medicine sends the Dendritic Cells out to the immune cells in the rest of the body, where they learn to recognize the cancer cells and track them down in the rest of the body.
What this is doing is giving the immune system a little push. Under normal circumstances, the immune system would recognize an invader, and all the various cells would do their jobs. But cancer isn't a normal circumstance, and the immune system is deceived by cancer cells. It needs a little help in recognizing and catching the bad guys. (Like Bubbles putting the red hats on the Barksdale crew. Gosh, I hope I'm not the only one out there who watches The Wire....)
This is very early research. Two patients in a trial experiences Partial Responses. But it's encouraging enough to warrant a larger trial of 30 patients.
The lead researcher, Dr. Joshua Brody, plans to present all of this at Lymphoma Conferences starting this summer. It will be interesting to see how the community reacts to it, and how it all gets refined as the research moves along.
Definitely worth keeping an eye on....
Saturday, June 28, 2014
Bald Barbie Update
Mattel is manufacturing a bald Barbie doll named Ella. This is kind of a big deal.
The saga of the Bald Barbie began in January 2012, when some folks set up a Facebook page asking Mattel to create a bald Barbie doll for kids with cancer who had chemo or other conditions that might have caused hair loss. No one really noticed until a blogger for the American Cancer Society made some very dumb statements about kids with cancer, and the Facebook page got a lot of play on social media. Eventually, the page got over 100,000 likes, American Girl and Bratz agreed to create bald versions of their dolls, and Mattel, finally, agreed to create Bald Barbies to be distributed to hospitals.
And that's where we have been for a little while -- Mattel has been creating a version of Barbie named Ella for distribution at children's hospitals. But apparently, not enough of them. A mom created a Change.org petition asking Mattel to create more of them (apparently, the hospital where he daughter was being treated for Leukemia only had 6 dolls).
She got over 100,000 signatures (that seems to be the number that gets Mattel's attention), and now Mattel has agreed to step up production of the Ella dolls.
On the one hand, I'm not crazy about Mattel's response. Like the first time around, they seem to need some real nudging when it comes to this doll. I understand their desire to protect the Barbie brand, but it seems like maybe the guy who wrote the ACS blog post is doing the Mattel public relations -- how could they think that helping kids with cancer could be anything but good publicity? Why the need for a big nudge?
That said, Mattel did eventually step -- both times. They may have dragged their feet, but in the end, they did make the dolls.
I thought the idea for a bald Barbie was great two years ago, and I think it's great now. Whatever it is that helps people get through their cancer -- whether they are men, women, or children -- is a good thing, and I admire companies that step up and do the job.
Of course, not everyone steps up, exactly......
The saga of the Bald Barbie began in January 2012, when some folks set up a Facebook page asking Mattel to create a bald Barbie doll for kids with cancer who had chemo or other conditions that might have caused hair loss. No one really noticed until a blogger for the American Cancer Society made some very dumb statements about kids with cancer, and the Facebook page got a lot of play on social media. Eventually, the page got over 100,000 likes, American Girl and Bratz agreed to create bald versions of their dolls, and Mattel, finally, agreed to create Bald Barbies to be distributed to hospitals.
And that's where we have been for a little while -- Mattel has been creating a version of Barbie named Ella for distribution at children's hospitals. But apparently, not enough of them. A mom created a Change.org petition asking Mattel to create more of them (apparently, the hospital where he daughter was being treated for Leukemia only had 6 dolls).
She got over 100,000 signatures (that seems to be the number that gets Mattel's attention), and now Mattel has agreed to step up production of the Ella dolls.
On the one hand, I'm not crazy about Mattel's response. Like the first time around, they seem to need some real nudging when it comes to this doll. I understand their desire to protect the Barbie brand, but it seems like maybe the guy who wrote the ACS blog post is doing the Mattel public relations -- how could they think that helping kids with cancer could be anything but good publicity? Why the need for a big nudge?
That said, Mattel did eventually step -- both times. They may have dragged their feet, but in the end, they did make the dolls.
I thought the idea for a bald Barbie was great two years ago, and I think it's great now. Whatever it is that helps people get through their cancer -- whether they are men, women, or children -- is a good thing, and I admire companies that step up and do the job.
Of course, not everyone steps up, exactly......
Wednesday, June 25, 2014
Scan Results
I got the CT scan results from Dr. R -- things look great.
It was a short conversation, since I was driving when he called (my wife put the phone on speaker and held it up so I could hear).
Dr. R said there were a few swollen nodes on the scan, but nothing terribly large. The biggest ones were a little over one centimeter; generally, anything smaller than a centimeter is considered "normal."
All of this seems like an ever-so-small improvement on the last scan I had, from three years ago. And that one was an improvement over the scan I had right after my Rituxan treatments.
So is this a matter of Rituxan continuing to hold things off, four years after I had it? Maybe, but not likely. Rituxan generally does its job for about 12-18 months (if I'm remembering correctly), though that's a median, so half of patients will do better than that. So Rituxan is probably playing at least some role.
I'm going to be cautious, though, and say that I'm also benefiting from the "waning" part of this waxing-and-waning disease. (I think "waning" means slowing down, right? I get them mixed up sometimes. Why does "waxing" mean "getting worse? What a weird phrase.)
Anyway, whatever caused my good scan, I've always said that Rituxan was my bestest pal, and I'm not going to stop now.
So it's a good day here at Lympho Bob Manor.
Stay hopeful, everyone.
It was a short conversation, since I was driving when he called (my wife put the phone on speaker and held it up so I could hear).
Dr. R said there were a few swollen nodes on the scan, but nothing terribly large. The biggest ones were a little over one centimeter; generally, anything smaller than a centimeter is considered "normal."
All of this seems like an ever-so-small improvement on the last scan I had, from three years ago. And that one was an improvement over the scan I had right after my Rituxan treatments.
So is this a matter of Rituxan continuing to hold things off, four years after I had it? Maybe, but not likely. Rituxan generally does its job for about 12-18 months (if I'm remembering correctly), though that's a median, so half of patients will do better than that. So Rituxan is probably playing at least some role.
I'm going to be cautious, though, and say that I'm also benefiting from the "waning" part of this waxing-and-waning disease. (I think "waning" means slowing down, right? I get them mixed up sometimes. Why does "waxing" mean "getting worse? What a weird phrase.)
Anyway, whatever caused my good scan, I've always said that Rituxan was my bestest pal, and I'm not going to stop now.
So it's a good day here at Lympho Bob Manor.
Stay hopeful, everyone.
Monday, June 23, 2014
Scan Today
I had my CT scan this morning.
It was mostly uneventful.
In the past, I went to the hospital for my scans. But since the hospital merged with another, I can go to one of the satellite offices that does scans, mammograms, and blood draws. Much closer, much easier parking, and generally one less thing to stress about.
After I checked in, the tech called my name, and walked me to the elevator we needed to take to get to the basement-level room where they would do the scan. On the way dawn, she looked at my file and said, "You've had a scan before, then?"
I told her I had, and mentioned how much I disliked the barium milkshake that I got at the hospital. She said they didn't do that thing at this place. I said, "YAAYYY!" probably too loudly. She turned to me and said, "But the stuff I'm giving you is no picnic..."
"YAAAAAAAAAAAAAAYYY," I said, much more quietly.
It turned out that stuff wasn't half bad. It's called Breeza, and unlike that nasty, thick milkshake-y thing, this was a clear liquid, the consistency of water, but in a delightful fruity flavor, as indicated by the pictures of various cut fruits on the bottle. I still had to drink two 16 ounce bottles, but I was done in five minutes, as opposed to the half hour it took with the milkshake.
I watched Good Morning America for the remaining 55 minutes of my wait (Hello, cancer survivor Robin Roberts! And Peanut, the World's Ugliest Dog!)
And then the scan itself. Easy. The usual tasting the saline in the back of my throat, and the weird hot feeling when she injects the contrast, but overall, no problems.
Despite the Breeza, I still ended up with stomach cramps, and I was exhausted when I got home. I took a little nap about 12:30, and woke up with barely enough time to get to physical therapy.
I still felt yucky, but I went anyway.
And if you read my entry yesterday, you're wondering -- did he play the cancer card?
Yes. Yes I did.
The aide called me in and, as she was setting up the machine that warms up my shoulder, asked me how I was feeling. I told her "Horrible -- I had a CT scan this morning."
"Oh, really? What for?"
"I'm a cancer patient."
"WHAT?!!" she said, panicking.
I explained that I had Follicular Lymphoma, and that it is a slow-growing blood cancer, and that I've been living with it for over six years. She calmed down some. I felt bad about doing it. I don't like to spring the cancer thing on people. I know the word freaks people out.
But she passed that news on to the Physical Therapist, and he did go easy on me. It was still a workout, and I left there sore, but he kept a couple of the more aggressive exercises out of the routine, which I appreciated.
So now it's a matter of waiting for the results.
Despite my scanxiety, I'm feeling OK about it all. As I said, there hasn't been anything happening that would make me think that there's a big problem waiting to be revealed.
And if there is, we'll deal with it. It's what we do.
It was mostly uneventful.
In the past, I went to the hospital for my scans. But since the hospital merged with another, I can go to one of the satellite offices that does scans, mammograms, and blood draws. Much closer, much easier parking, and generally one less thing to stress about.
After I checked in, the tech called my name, and walked me to the elevator we needed to take to get to the basement-level room where they would do the scan. On the way dawn, she looked at my file and said, "You've had a scan before, then?"
I told her I had, and mentioned how much I disliked the barium milkshake that I got at the hospital. She said they didn't do that thing at this place. I said, "YAAYYY!" probably too loudly. She turned to me and said, "But the stuff I'm giving you is no picnic..."
"YAAAAAAAAAAAAAAYYY," I said, much more quietly.
It turned out that stuff wasn't half bad. It's called Breeza, and unlike that nasty, thick milkshake-y thing, this was a clear liquid, the consistency of water, but in a delightful fruity flavor, as indicated by the pictures of various cut fruits on the bottle. I still had to drink two 16 ounce bottles, but I was done in five minutes, as opposed to the half hour it took with the milkshake.
I watched Good Morning America for the remaining 55 minutes of my wait (Hello, cancer survivor Robin Roberts! And Peanut, the World's Ugliest Dog!)
And then the scan itself. Easy. The usual tasting the saline in the back of my throat, and the weird hot feeling when she injects the contrast, but overall, no problems.
Despite the Breeza, I still ended up with stomach cramps, and I was exhausted when I got home. I took a little nap about 12:30, and woke up with barely enough time to get to physical therapy.
I still felt yucky, but I went anyway.
And if you read my entry yesterday, you're wondering -- did he play the cancer card?
Yes. Yes I did.
The aide called me in and, as she was setting up the machine that warms up my shoulder, asked me how I was feeling. I told her "Horrible -- I had a CT scan this morning."
"Oh, really? What for?"
"I'm a cancer patient."
"WHAT?!!" she said, panicking.
I explained that I had Follicular Lymphoma, and that it is a slow-growing blood cancer, and that I've been living with it for over six years. She calmed down some. I felt bad about doing it. I don't like to spring the cancer thing on people. I know the word freaks people out.
But she passed that news on to the Physical Therapist, and he did go easy on me. It was still a workout, and I left there sore, but he kept a couple of the more aggressive exercises out of the routine, which I appreciated.
So now it's a matter of waiting for the results.
Despite my scanxiety, I'm feeling OK about it all. As I said, there hasn't been anything happening that would make me think that there's a big problem waiting to be revealed.
And if there is, we'll deal with it. It's what we do.
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