As I said last time, there really isn't much exciting coming out of ASH this year. I should clarify a little -- there isn't much coming out dealing with NHL. Apparently, there's some great stuff coming out that deals with leukemia.
Medscape's ASH preview highlights two studies related to different types of leukemia. One focuses on Chronic Myeloid Leukemia (CML), which, as the article notes, was at one time a certain death sentence. Now, with tyrosine kinase inhibitors, the disease is manageable for many patients -- except those with a particular genetic mutation, which made that form of CML resistant to kinase inhibitors. A presentation at ASH will describe the successful phase 2 trial for ponatinib, which seems to work for the patients with this mutation.
The article describes some research on other types of leukemia, too.
So all the really exciting stuff is happening in other blood cancers.
Which is fine -- any advances help us all, even if they are not direct. The techniques and the assumptions behind the treatments may open up doors for the rest of us sometime.
Wednesday, December 5, 2012
Monday, December 3, 2012
ASH: Enzastaurin
OK, back to some of the research coming out of ASH, which starts on December 8th.
It's interesting that I have seen so little hoopla about the conference. Usually, by this time about 10 drug companies have put out press releases announcing the results of their various trials. Granted, it picks up once the conference starts, and the papers have actually been presented, so maybe we'll see more next week. But, on the other hand, I've also seen commentaries that say there isn't anything really groundbreaking to announce this year. So maybe that's what's going on. Most of what we're seeing is either backing up research that we already know about, or is the earlier stages of trials, so it's too soon to say the results are game-changers.
One of the latter type (too early to get excited) is a presentation on Enzastaurin; results from a phase II trial are being presented. Basically, this means it's a smaller-scale trial designed to show the treatment actually works, and the results would justify a larger, more expensive, time-intensive phase III trial.
Enzastaurin is a protein kinase inhibitor, which is a type of treatment that targets cancer cells by looking for something called Protein Kinase C Beta, which is present in B cells (the type of white blood cell that goes nutty in Follicular NHL). In solid tumors, C Beta seems to be responsible for allowing blood vessels to grow and feed the tumor (Enzastaurin has been used with brain cancer patients, for example). But it also seems to play a role in B cell lymphomas.
In this trial, 66 patients were given Enzastaurin. The main thing researchers were looking for was RR -- overall response rate. Basically, they wanted to see how many patients had some kind of positive reaction.
And the results look decent: 29.3% responded to treatment. A few are still taking Enzastaurin, three and a half years later.
More interesting, though, was that certain biomarkers seemed to correlate with better results. In other words, when researchers looked more closely at tissue samples, they saw that the patients with better results generally had certain features on their cells that didn't show up on the cells of patients that had no response. The results were significant enough that they will investigate further, but for now, the study was too small to say anything for sure. (That's why they have phase III trials.)
I found this interesting for two reasons. First, protein kinase inhibitors are pretty interesting. They can target cancer cells and leave normal cells alone -- certainly a trend in cancer research. But at the same time, the study shows how much more closely we're able to examine cancer cells genetic makeup and start making guesses as to why some treatments work for some patients, while others don't. Isn't your first reaction when you see that a treatment worked for 29.3% of people to ask, "What about the other 70%? Why didn't it work for them?" Well, we may know. That kind of personalization is becoming more and more popular.
It's not a significant study, in that it's not presenting any great breakthroughs, but for me, it emphasizes some of things that make me hopeful about fNHL research.
It's interesting that I have seen so little hoopla about the conference. Usually, by this time about 10 drug companies have put out press releases announcing the results of their various trials. Granted, it picks up once the conference starts, and the papers have actually been presented, so maybe we'll see more next week. But, on the other hand, I've also seen commentaries that say there isn't anything really groundbreaking to announce this year. So maybe that's what's going on. Most of what we're seeing is either backing up research that we already know about, or is the earlier stages of trials, so it's too soon to say the results are game-changers.
One of the latter type (too early to get excited) is a presentation on Enzastaurin; results from a phase II trial are being presented. Basically, this means it's a smaller-scale trial designed to show the treatment actually works, and the results would justify a larger, more expensive, time-intensive phase III trial.
Enzastaurin is a protein kinase inhibitor, which is a type of treatment that targets cancer cells by looking for something called Protein Kinase C Beta, which is present in B cells (the type of white blood cell that goes nutty in Follicular NHL). In solid tumors, C Beta seems to be responsible for allowing blood vessels to grow and feed the tumor (Enzastaurin has been used with brain cancer patients, for example). But it also seems to play a role in B cell lymphomas.
In this trial, 66 patients were given Enzastaurin. The main thing researchers were looking for was RR -- overall response rate. Basically, they wanted to see how many patients had some kind of positive reaction.
And the results look decent: 29.3% responded to treatment. A few are still taking Enzastaurin, three and a half years later.
More interesting, though, was that certain biomarkers seemed to correlate with better results. In other words, when researchers looked more closely at tissue samples, they saw that the patients with better results generally had certain features on their cells that didn't show up on the cells of patients that had no response. The results were significant enough that they will investigate further, but for now, the study was too small to say anything for sure. (That's why they have phase III trials.)
I found this interesting for two reasons. First, protein kinase inhibitors are pretty interesting. They can target cancer cells and leave normal cells alone -- certainly a trend in cancer research. But at the same time, the study shows how much more closely we're able to examine cancer cells genetic makeup and start making guesses as to why some treatments work for some patients, while others don't. Isn't your first reaction when you see that a treatment worked for 29.3% of people to ask, "What about the other 70%? Why didn't it work for them?" Well, we may know. That kind of personalization is becoming more and more popular.
It's not a significant study, in that it's not presenting any great breakthroughs, but for me, it emphasizes some of things that make me hopeful about fNHL research.
Friday, November 30, 2012
No More Gilda?
A small controversy in the cancer community:
The Madison, Wisconsin branch of the national organization "Gilda's Club" is changing its name to Cancer Support Community Southwest Wisconsin.
Gilda's Club provides services to cancer patients of all ages and their families, free of charge. It is named, of course, for Gilda Radner, the very funny SNL alum who faced cancer with such humor and dignity. After she was diagnosed, she said, "Having cancer gave me membership in an elite club I’d rather not belong to." Her friends began Gilda's Club as a tribute to her memory.
The Madison branch realized that most of the people they were serving were born after Gilda had died, and had never heard of her. Since they rely on donations, and since people who need cancer support (especially young people) Google "cancer," they though they would be more easily found if they had the word "Cancer" in their name.
People are up in arms about this decision, and are flooding their Facebook page with comments. They see it as an insult to Radner.
In some ways, it isn't really a controversy. Radner herself got support from a place called The Wellness Community, and Gilda's Club merged with them a few years ago, creating a new group called Cancer Support Community. The local chapters had the option of choosing any of those three names, and some did change. So the Madison group isn't really doing anything radical -- they're just doing it a few years later than some other folks.
I can understand people being upset, though. For one thing, cancer patients like stability; we have enough change to worry about, and a change from something they see as positive is liable to upset them. For another thing: I think we all worry about being remembered, and it makes us sad to think that someone who was once so famous, and brought so much joy to so many people, is now so obscure that she's hurting the fundraising for the cause she cared about so much. That can't make any of us feel good to think about.
Her husband, lymphoma survivor and brilliant comic actor Gene Wilder, was asked what he thought about it, and he said he didn't like it, but he understood, and he offered an imaginary conversation between himself and Radner:
He said if he had to break the news to his late wife she might ask, “Do they have to throw me out?”
“I’d say, ‘It’s not throwing you out, honey, it’s getting more money.’ And she’d say, ‘OK, I guess if they have to, they have to,’” he said. “It’s too bad. I wish it weren’t so. But I understand.”
So I guess we should understand, too. As long as all of those pictures of Gilda stay on the walls, and maybe if the rooms named after he various characters aren't changed, her memory will stay. And maybe some of those young folks will ask "Why the heck is this called the Roseanne Roseannadanna Room, anyway?"
The Madison, Wisconsin branch of the national organization "Gilda's Club" is changing its name to Cancer Support Community Southwest Wisconsin.
Gilda's Club provides services to cancer patients of all ages and their families, free of charge. It is named, of course, for Gilda Radner, the very funny SNL alum who faced cancer with such humor and dignity. After she was diagnosed, she said, "Having cancer gave me membership in an elite club I’d rather not belong to." Her friends began Gilda's Club as a tribute to her memory.
The Madison branch realized that most of the people they were serving were born after Gilda had died, and had never heard of her. Since they rely on donations, and since people who need cancer support (especially young people) Google "cancer," they though they would be more easily found if they had the word "Cancer" in their name.
People are up in arms about this decision, and are flooding their Facebook page with comments. They see it as an insult to Radner.
In some ways, it isn't really a controversy. Radner herself got support from a place called The Wellness Community, and Gilda's Club merged with them a few years ago, creating a new group called Cancer Support Community. The local chapters had the option of choosing any of those three names, and some did change. So the Madison group isn't really doing anything radical -- they're just doing it a few years later than some other folks.
I can understand people being upset, though. For one thing, cancer patients like stability; we have enough change to worry about, and a change from something they see as positive is liable to upset them. For another thing: I think we all worry about being remembered, and it makes us sad to think that someone who was once so famous, and brought so much joy to so many people, is now so obscure that she's hurting the fundraising for the cause she cared about so much. That can't make any of us feel good to think about.
Her husband, lymphoma survivor and brilliant comic actor Gene Wilder, was asked what he thought about it, and he said he didn't like it, but he understood, and he offered an imaginary conversation between himself and Radner:
He said if he had to break the news to his late wife she might ask, “Do they have to throw me out?”
“I’d say, ‘It’s not throwing you out, honey, it’s getting more money.’ And she’d say, ‘OK, I guess if they have to, they have to,’” he said. “It’s too bad. I wish it weren’t so. But I understand.”
So I guess we should understand, too. As long as all of those pictures of Gilda stay on the walls, and maybe if the rooms named after he various characters aren't changed, her memory will stay. And maybe some of those young folks will ask "Why the heck is this called the Roseanne Roseannadanna Room, anyway?"
Wednesday, November 28, 2012
Vaccine Petition
Change.org has a petition from Voices for Progress asking the FDA to consider approval of the BioVaxID vaccine for Follicular Lymphoma. I urge you to sign it.
I wrote about BioVax very recently. Initial clinical trial results looked great -- patients who took the vaccine added about 14 months to their disease-free survival. The FDA, however, rejected the request for approval because the results were somewhat old, and they wanted to see results in patients who are taking more currently popular treatments, particularly Rituxan.
The petition asks the FDA to consider the earlier results, and to keep in mind that, as a consolidation therapy (that is, a treatment that is given immediately after another treatment), BioVaxID will have fewer reported side effects than other consolidations like R maintenance or RadioImmunoTherapy.
It's all about options. That's what fNHL patients want. And need.
Lymphoma Rock Star Betsy de Parry (I'm going to suggest that she change her name legally to "Lymphoma Rock Star Betsy de Parry) wrote a nice piece for AnnArbor.com on Monday in which she makes a case for the FDA to rant accelerated approval of BioVax. Accelerated approval gives doctors permission to use the treatment, provided the maker of the treatment agrees to conduct further trials to confirm its effectiveness. These "Phase 4" trials can then lead to full approval for the treatment, if they prove to be as effective as they seem likely to be.
As I write this, the petition still needs over 1000 signatures. Please consider adding your name.
I wrote about BioVax very recently. Initial clinical trial results looked great -- patients who took the vaccine added about 14 months to their disease-free survival. The FDA, however, rejected the request for approval because the results were somewhat old, and they wanted to see results in patients who are taking more currently popular treatments, particularly Rituxan.
The petition asks the FDA to consider the earlier results, and to keep in mind that, as a consolidation therapy (that is, a treatment that is given immediately after another treatment), BioVaxID will have fewer reported side effects than other consolidations like R maintenance or RadioImmunoTherapy.
It's all about options. That's what fNHL patients want. And need.
Lymphoma Rock Star Betsy de Parry (I'm going to suggest that she change her name legally to "Lymphoma Rock Star Betsy de Parry) wrote a nice piece for AnnArbor.com on Monday in which she makes a case for the FDA to rant accelerated approval of BioVax. Accelerated approval gives doctors permission to use the treatment, provided the maker of the treatment agrees to conduct further trials to confirm its effectiveness. These "Phase 4" trials can then lead to full approval for the treatment, if they prove to be as effective as they seem likely to be.
As I write this, the petition still needs over 1000 signatures. Please consider adding your name.
Monday, November 26, 2012
Standards of Beauty
Yesterday, between the third and fourth quarters of the Indianapolis Colts' game, two cheerleaders had their heads shaved.
They did it in solidarity with Chuck Pagano, the Colts' coach, who was diagnosed with leukemia in September. Chemo took his hair. The community, and especially the team, rallied around Pagano, with several players shaving their heads. So Blue, the Colts' mascot, issued a challenge to the cheerleaders: would anyone be willing to have Blue shave her head, if Blue could raise $10,000 for leukemia research?
One brave cheerleader, Megan, took him up on it, and when Blue raised over $22,000, Megan kept her promise. She was joined by another cheerleader, Crystal Ann, and they held hands while Blue did his work with the razor.
Megan and Crytsal Ann are not the first people to shave their heads in solidarity with a cancer patient. All those players did it. And country singer Kellie Pickler did it, too.
To be honest, I think it's great when people do it, but I'm a whole lot more impressed when a woman does it, especially a woman like Kellie or Megan or Crystal Ann who is so visible.
Is it cliche to say that their selfless act is more about inner beauty than outer beauty? Maybe. But it certainly should get people to reconsider what beauty is all about.
Megan's page on the Colts Cheerleaders website includes some personal information, as well as her advice for kids and teens, which begins, "Be proud of who you are and embrace what makes you unique."
That's some excellent advice.
Saturday, November 24, 2012
What I'm Thankful For
Here it is, two days after Thanksgiving, and twice I have posted my "What I am Thankful for" entry for the year, and twice it has been messed up by Blogger. Very frustrating. I spent a pretty long time thinking about it and writing it up, and now I'm on no mood to rewrite it a third time. Which really stinks.
Watch this instead. It's pretty close to what I said I was thankful for.
So I'll just say, Thanks to my family, for being so supportive. I couldn't have some this far without you.
In less than two months, I will celebrate five years since my diagnosis. I'll have lots to say then. In the meantime, Thanks to all of you who read the blog. I always say that, in the end, I write the blog for myself, but I hope that some of you take some comfort, wisdom, and knowledge from it, too.
Hope your Thanksgiving was a good one.
Watch this instead. It's pretty close to what I said I was thankful for.
So I'll just say, Thanks to my family, for being so supportive. I couldn't have some this far without you.
In less than two months, I will celebrate five years since my diagnosis. I'll have lots to say then. In the meantime, Thanks to all of you who read the blog. I always say that, in the end, I write the blog for myself, but I hope that some of you take some comfort, wisdom, and knowledge from it, too.
Hope your Thanksgiving was a good one.
Tuesday, November 20, 2012
ASH: Quality of Life
OK, time to get to some of the 126 abstracts from this year's ASH Conference that are related to Follicular NHL.
The first is called "Differences in Quality of Life Between Bendamustine Plus Rituximab Compared with Standard First-Line Treatments in Patients with Previously Untreated Advanced Indolent Non-Hodgkin’s Lymphoma or Mantle Cell Lymphoma."
I find it intriguing because we're getting even more research devoted to Bendamustine (Treanda); it was pretty much established as the go-to treatment for fNHL in the last year, and more research just keeps reaffirming it.
In this study, researchers compared relapsed and refractory fNHL and MCL patients who were given either Bendamustine + Rituxan, or who were given "standard" chemotherapies of either R-CHOP or R-CVP. But instead of measuring its effectiveness in reducing the cancer (which they may very well have also looked at), they looked at how the treatments affected quality of life -- how much the treatments affected their everyday happiness, in a sense, and their ability to function in a "normal" way.
Patients were given questionnaires about Quality of Life, asking about things like cognitive issues (which probably means "chemo brain"), emotional issues, physical issues, etc. The questionnaires were given at the beginning and the end of treatment. We know that B-R has fewer side effects than CVP or CHOP, so it's no surprise that quality of life either went up, or did not go down as quickly as it did for the "standard" chemos.
It's a significant study, not just because it gives yet another reason to consider Bendamustine. Maybe more importantly, it reinforces the idea that Quality of Life matters when it comes time to choose treatments, especially in something like fNHL, where patients are often asymptomatic. If it's possible to maintain quality of life while providing an effective treatment that reduces cancer, it seems like a no-brainer.
And yes, there are still lots of doctors who recommend R-CHOP as a first line treatment, probably out of habit (though they certainly may have other reasons). More research like this on Quality of Life -- and more proactive patients -- might change their minds.
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