Now that I've gone and preached about not paying attention to numbers, I'm going to be a hypocrite and give you some of my numbers.
I got the blood work results from my annual physical. This isn't the blood work from my last oncology visit, which I don't pay attention to. This is just the basic stuff from my general practitioner.
My total cholesterol is 172 (should be under 200).
My HDL ("good") cholesterol is 48 (should be under 40).
My LDL ("bad") cholesterol is 110 (should be under 130).
My triglycerides are 71 (should be under 150).
My thyroid and vitamin D levels are healthy.
In short, I maintain my title as the healthiest cancer patient in town.
****************************
My computer is broken -- hard drive and/or operating system corrupted, so it boots up when it feels like it. I'm getting it fixed, and the loaner netbook I was given has been installing updates for the four hours. (It's currently on update #36 of 49.) My wife was good enough to let me borrow hers for a few minutes, after the kids were finished borrowing it for their own stuff.
I hope to have mine fixed, or my loaner updated, tomorrow. Or maybe Wednesday. I'll get back to allof that good cancer stuff soon. Especially ASCO commentary.
In the meantime, I'm going to celebrate my triglyceride numbers with some full-fat ice cream with sprinkles. Because I'm that kind of guy....a loner...a rebel....
Monday, May 20, 2013
Thursday, May 16, 2013
Follicular Lymphoma at ASCO
This year's ASCO Conference (that's the American Society of Clinical Oncology) will take place May 31-June 4 in Chicago. ASCO released abstracts on Wednesday night. Abstracts are the summaries of the presentations that oncologists who are attending the conference will use to determine which sessions are worth going to. And they give us some clues as to what the current research trends are.
ASCO time is always an exciting time, for cancer doctors and cancer nerds alike (Dr. Sharman says "It feels like Christmas morning and I'm 5 years old"). And for the next few weeks, we're likely to see lots of commentaries about some of the abstracts. As we get closer to the conference, we'll see lots of press releases touting the results. Dr. Sharman, linked above, discusses a session on Ibrutinib resistance -- a discovery about why Ibrutinibmay not work, or may stop working, for certain patients. He says it's a "MAJOR discovery" -- and I believe him, because he's awesome.
I will be adding my own commentary, for what it's worth. I'm no Dr. Sharman, but I've been reading ASCO, ASH, and other conference abstracts long enough to know what's exciting to me.
ASCO sessions often discuss research that's pretty close to being released in a peer reviewed journal, but they're more often kind of preliminary. Maybe a year or two into a long-term study, or results from a phase 1 or 2 clinical trial with a small number of patients. Or even the occasional in vitro study, where something hasn't even left the lab yet to be tested on real people. So even the really exciting stuff has to be taken with a sprinkling of skepticism.
But that sprinkling comes on top of a big steaming pile of hope. Because there's nothing more hopeful than imagining a big hotel full of oncologists, all feeling like 5 year olds at Christmas.
So for the next few days, I'll comment on some of the abstracts related to Follicular Lymphoma, and say why I'm hopeful. I encourage everyone to read on their own, and make some judgements themselves.
Now, time to open some presents.
ASCO time is always an exciting time, for cancer doctors and cancer nerds alike (Dr. Sharman says "It feels like Christmas morning and I'm 5 years old"). And for the next few weeks, we're likely to see lots of commentaries about some of the abstracts. As we get closer to the conference, we'll see lots of press releases touting the results. Dr. Sharman, linked above, discusses a session on Ibrutinib resistance -- a discovery about why Ibrutinibmay not work, or may stop working, for certain patients. He says it's a "MAJOR discovery" -- and I believe him, because he's awesome.
I will be adding my own commentary, for what it's worth. I'm no Dr. Sharman, but I've been reading ASCO, ASH, and other conference abstracts long enough to know what's exciting to me.
ASCO sessions often discuss research that's pretty close to being released in a peer reviewed journal, but they're more often kind of preliminary. Maybe a year or two into a long-term study, or results from a phase 1 or 2 clinical trial with a small number of patients. Or even the occasional in vitro study, where something hasn't even left the lab yet to be tested on real people. So even the really exciting stuff has to be taken with a sprinkling of skepticism.
But that sprinkling comes on top of a big steaming pile of hope. Because there's nothing more hopeful than imagining a big hotel full of oncologists, all feeling like 5 year olds at Christmas.
So for the next few days, I'll comment on some of the abstracts related to Follicular Lymphoma, and say why I'm hopeful. I encourage everyone to read on their own, and make some judgements themselves.
Now, time to open some presents.
Wednesday, May 15, 2013
Follicular Lymphoma's Regulator
This one seems like kind of a big deal.
Researchers at Weill Cornell were working on a new inhibitor that targets the EZH2 protein that they found to be present in a small number of lymphoma patients' cells. Developing an inhibitor, they figured, could help this small number of patients.
Well, it turns out that EZH2 isn't something that effects a tiny population. In fact, it effects Follicular Lymphoma patients, and some DLBCL patients -- perhaps a majority of patients with B-cell lymphomas.
So, yeah, kind of a big deal.
EZH2 is necessary for the body to develop a type of B-cell which, when it acts normally, helps fight invaders in the bloodstream. Its function is to allow the B-cells to keep dividing and attacking the attackers, basically letting them go nuts so the problem is solved. Normally, once the attacker is vanquished, the EZH2 goes away. Cancer, of course, occurs when cells stop shutting themselves off. So finding a way to control the EZH2 will mean being able to shut down the system,and get rid of the cancer.
The researchers have developed an inhibitor that will shut off the rogue EZH2. Even better, they think combining it with another inhibitor, one that targets BCL2, will make it even better. (No word on which BCL2 inhibitor they are using, but there are a few to choose from already in trials.)
You can read more details here, though there are a bunch of news reports online about this study. As I said, seems like kind of a big deal.
Researchers at Weill Cornell were working on a new inhibitor that targets the EZH2 protein that they found to be present in a small number of lymphoma patients' cells. Developing an inhibitor, they figured, could help this small number of patients.
Well, it turns out that EZH2 isn't something that effects a tiny population. In fact, it effects Follicular Lymphoma patients, and some DLBCL patients -- perhaps a majority of patients with B-cell lymphomas.
So, yeah, kind of a big deal.
EZH2 is necessary for the body to develop a type of B-cell which, when it acts normally, helps fight invaders in the bloodstream. Its function is to allow the B-cells to keep dividing and attacking the attackers, basically letting them go nuts so the problem is solved. Normally, once the attacker is vanquished, the EZH2 goes away. Cancer, of course, occurs when cells stop shutting themselves off. So finding a way to control the EZH2 will mean being able to shut down the system,and get rid of the cancer.
The researchers have developed an inhibitor that will shut off the rogue EZH2. Even better, they think combining it with another inhibitor, one that targets BCL2, will make it even better. (No word on which BCL2 inhibitor they are using, but there are a few to choose from already in trials.)
You can read more details here, though there are a bunch of news reports online about this study. As I said, seems like kind of a big deal.
Sunday, May 12, 2013
Moms
I was emptying the recycle bin this afternoon when my daughter walked up to me, holding an empty cereal bar box. She didn't say anything to me, just held the box and looked at me, waiting for an answer to a question she wasn't asking. "Yes?" I said, emptying the recycle bin. "This box is empty," she said, chewing the last cereal bar. "And what would you like me to do about it?" I asked her. "Wrap it in my magic towel and fill it up again?"
She gave me a typical "that's-not-funny" look and dropped the box into the recycle bin. I was referring to something she told me not long ago. When we have tacos, I put the soft tortillas in a clean dish towel and microwave them for a minute, as the instructions say. My daughter told me that when she was really little, she didn't realize I had put tortillas in the towel; she thought it was a magic towel, and when I put it in the microwave oven, warm tortillas magically appeared.
The lesson, of course, is that Dads are magical. To a kid, it's not at all out of the question that a dad could make tortillas appear out of thin air. Moms, not so much.
The great, great writer Michael Chabon has a wonderful book called Manhood for Amateurs, a bunch of reflections on being a man and a father. One of the essays, "William and I," starts out, "The handy thing about being a father is that the historic standard is so pitifully low." He tells a story about going to the supermarket with his twenty-month-old son. A woman he didn't know beamed at him, and said "You're such a good dad. I can tell." He wasn't doing anything particularly great (in fact, his dirty-faced kid was chewing dangerously on a wire twist tie). He was just there, with his kid, running an errand.
Would a mom holding her toddler at the grocery store get the same reaction? Yeah, right.
Chabon puts it even better a little later in the essay: "The father on a camping trip who manages to beat a rattlesnake to death with a can of Dinty Moore in a tube sock may rest for decades on the ensuing laurels, yet somehow snore peacefully every night beside his sleepless wife, even though he knows perfectly well that the Polly Pocket toys may be tainted with lead-based paint, and the Rite Aid was out of test kits, and somebody had better go order them online, overnight delivery, even though it is four in the morning. It is in part the monumental open-endedness of the job, with its infinite number of infinitely small pieces, that routinely leads mothers to see themselves as inadequate, therefore making the task of recognizing their goodness, at any given moment, so hard."
How can moms be magical when there's so damn much to worry about?
So I guess what I'm saying is, I want to thank my wife on this day for being the one who does all of the worrying. We balance each other well, in many ways, and know when to take turns being crazy (as someone once told us happens in good marriages). The one time I can remember the roles really reversing was soon after I was diagnosed, in a deep depression, worrying about her an the kids, and finally finding the courage to say so to her. He response was basically a stone-faced, "We'll deal with it," which is what I usually say to her in such situations. It was just what I needed.
And I want to thank my own mother, and my mother-in-law, worry-ers both, for all of their own sleepless nights.
It's easy to be magical. You tell your toddlers that the beans that you just ate were jumping beans, and that you can jump over the house, and to prove it you run out the front door, around the house, and in the through the back door, telling them that you went over the house, not around it, and they believe you, because they're small and you're a dad.
But it's mom who tells them, once all of that spectacle is over, "OK, now eat your beans."
That's the much more important job, isn't it?
She gave me a typical "that's-not-funny" look and dropped the box into the recycle bin. I was referring to something she told me not long ago. When we have tacos, I put the soft tortillas in a clean dish towel and microwave them for a minute, as the instructions say. My daughter told me that when she was really little, she didn't realize I had put tortillas in the towel; she thought it was a magic towel, and when I put it in the microwave oven, warm tortillas magically appeared.
The lesson, of course, is that Dads are magical. To a kid, it's not at all out of the question that a dad could make tortillas appear out of thin air. Moms, not so much.
The great, great writer Michael Chabon has a wonderful book called Manhood for Amateurs, a bunch of reflections on being a man and a father. One of the essays, "William and I," starts out, "The handy thing about being a father is that the historic standard is so pitifully low." He tells a story about going to the supermarket with his twenty-month-old son. A woman he didn't know beamed at him, and said "You're such a good dad. I can tell." He wasn't doing anything particularly great (in fact, his dirty-faced kid was chewing dangerously on a wire twist tie). He was just there, with his kid, running an errand.
Would a mom holding her toddler at the grocery store get the same reaction? Yeah, right.
Chabon puts it even better a little later in the essay: "The father on a camping trip who manages to beat a rattlesnake to death with a can of Dinty Moore in a tube sock may rest for decades on the ensuing laurels, yet somehow snore peacefully every night beside his sleepless wife, even though he knows perfectly well that the Polly Pocket toys may be tainted with lead-based paint, and the Rite Aid was out of test kits, and somebody had better go order them online, overnight delivery, even though it is four in the morning. It is in part the monumental open-endedness of the job, with its infinite number of infinitely small pieces, that routinely leads mothers to see themselves as inadequate, therefore making the task of recognizing their goodness, at any given moment, so hard."
How can moms be magical when there's so damn much to worry about?
So I guess what I'm saying is, I want to thank my wife on this day for being the one who does all of the worrying. We balance each other well, in many ways, and know when to take turns being crazy (as someone once told us happens in good marriages). The one time I can remember the roles really reversing was soon after I was diagnosed, in a deep depression, worrying about her an the kids, and finally finding the courage to say so to her. He response was basically a stone-faced, "We'll deal with it," which is what I usually say to her in such situations. It was just what I needed.
And I want to thank my own mother, and my mother-in-law, worry-ers both, for all of their own sleepless nights.
It's easy to be magical. You tell your toddlers that the beans that you just ate were jumping beans, and that you can jump over the house, and to prove it you run out the front door, around the house, and in the through the back door, telling them that you went over the house, not around it, and they believe you, because they're small and you're a dad.
But it's mom who tells them, once all of that spectacle is over, "OK, now eat your beans."
That's the much more important job, isn't it?
Thursday, May 9, 2013
Dr. R Visit
Had my four-month follow-up with Dr. R today. Everything looks good (as I predicted).
As always, the visit is essentially a three-part check up. He does some blood work, does a physical exam, and asks me how I'm feeling.
Blood looks fine. Everything is solidly within normal range. As usual, there are a few things that will take a couple of days to analyze (like LDH and liver function), but problems with these are usually signaled by something amiss with the immediate blood tests, so I don't expect any panicked calls from him. The physical exam went OK, too. Nothing new popping up anywhere. At my last visit, I asked him to check on some bumps on my upper arm; he told me to keep an eye on them and let him know if they got bigger or if they increased. They may be slightly bigger, but only slightly, and they haven't increased. He wants me to continue to keep an eye on them. If they need to be checked, he'll send me somewhere else to do a Fine Needle Aspiration to get a small sample of the cells. [They won't let him do the FNA himself? This guy can do a Bone Marrow Biopsy and tear out a chunk of my hip, but he can't stick a tiny needle into me? What the hell?] He's actually not even sure they're swollen nodes. They might be lipomas (fat deposits, basically). No surprise that I have deposits of fat scattered about my body, if we're being honest.....
As for my own report to him about how I'm feeling, I told him I felt fine, which is true. We mostly chatted about the Red Sox, my oldest getting his driver's permit, and the like. All in all, it was an uneventful visit.
I like Dr. R. He puts me at ease. My blood pressure was actually 10 points lower today than it was two days ago when I got my annual physical. I attribute the difference to Dr. R relaxing me, on the one hand, and my not anticipating a prostate exam today, as I did on Tuesday. [I told Dr. R that, and he offered to give me one anyway. "Too bad you weren't here last week. I had a medical student with me. We could have given him some practice." God knows what he would have said to me if my wife wasn't actually in the room with us.]
So we'll call this visit a success. The only problem (apart from the offer of a prostate exam) was the new computer system they had installed two weeks ago, part of their switch to electronic records. (Which, by the way, I am in favor of. My GP is on the same system, and knew I was going to see Dr. R today. I like having things so easy to share. I think it will cut down on mistakes and save money in the long run.) I had to answer 10 minutes of questions when I first checked in, to make sure all of the information was correct. [She seemed surprised that I knew the date of my diagnosis. I told her I celebrate it every year. That didn't surprise her, for some reason.] Then I had to answer questions from the nurse who took my vitals as she looked at the screen instead of me. ["Do you smoke?" "No." "Do you drink alcohol?" "I'm actually drunk right now...[no response, just typing]...Yes, occasionally..." She didn't even look away from the screen.]
Dr. R hates the new system. He meant to say "It's ironic that technology makes us less efficient," but it came out as "It's moronic," which we all agreed was OK, too.
As always, the visit is essentially a three-part check up. He does some blood work, does a physical exam, and asks me how I'm feeling.
Blood looks fine. Everything is solidly within normal range. As usual, there are a few things that will take a couple of days to analyze (like LDH and liver function), but problems with these are usually signaled by something amiss with the immediate blood tests, so I don't expect any panicked calls from him. The physical exam went OK, too. Nothing new popping up anywhere. At my last visit, I asked him to check on some bumps on my upper arm; he told me to keep an eye on them and let him know if they got bigger or if they increased. They may be slightly bigger, but only slightly, and they haven't increased. He wants me to continue to keep an eye on them. If they need to be checked, he'll send me somewhere else to do a Fine Needle Aspiration to get a small sample of the cells. [They won't let him do the FNA himself? This guy can do a Bone Marrow Biopsy and tear out a chunk of my hip, but he can't stick a tiny needle into me? What the hell?] He's actually not even sure they're swollen nodes. They might be lipomas (fat deposits, basically). No surprise that I have deposits of fat scattered about my body, if we're being honest.....
As for my own report to him about how I'm feeling, I told him I felt fine, which is true. We mostly chatted about the Red Sox, my oldest getting his driver's permit, and the like. All in all, it was an uneventful visit.
I like Dr. R. He puts me at ease. My blood pressure was actually 10 points lower today than it was two days ago when I got my annual physical. I attribute the difference to Dr. R relaxing me, on the one hand, and my not anticipating a prostate exam today, as I did on Tuesday. [I told Dr. R that, and he offered to give me one anyway. "Too bad you weren't here last week. I had a medical student with me. We could have given him some practice." God knows what he would have said to me if my wife wasn't actually in the room with us.]
So we'll call this visit a success. The only problem (apart from the offer of a prostate exam) was the new computer system they had installed two weeks ago, part of their switch to electronic records. (Which, by the way, I am in favor of. My GP is on the same system, and knew I was going to see Dr. R today. I like having things so easy to share. I think it will cut down on mistakes and save money in the long run.) I had to answer 10 minutes of questions when I first checked in, to make sure all of the information was correct. [She seemed surprised that I knew the date of my diagnosis. I told her I celebrate it every year. That didn't surprise her, for some reason.] Then I had to answer questions from the nurse who took my vitals as she looked at the screen instead of me. ["Do you smoke?" "No." "Do you drink alcohol?" "I'm actually drunk right now...[no response, just typing]...Yes, occasionally..." She didn't even look away from the screen.]
Dr. R hates the new system. He meant to say "It's ironic that technology makes us less efficient," but it came out as "It's moronic," which we all agreed was OK, too.
Wednesday, May 8, 2013
Follicular Lymphoma: What's in the Pipeline?
The group PhRMA, the Pharmaceutical Research and Manufacturers of America (which represents the big pharmaceutical companies) issued a report last week called Medicines in Development: Leukemia and Lymphoma. Basically, it's a list of medicines currently in development for leukemia, the various lymphomas, and other blood cancers.
How many treatments are currently in development?
Over 240.
That includes 98 different treatments for lymphomas, including 7 that are listed specifically for Follicular Lymphoma (plus a whole lot more for indolent lymphomas, and more still for unspecified lymphomas, mostly in phase 1 trials).
That's pretty cool. It's impressive to see so many treatments in development in one place. More arrows in the quiver, indeed.
Now, I haven't spent too much time sifting through the particular treatments, but there are some things to keep in mind as you look at the report.
First, not all of these medicines will end up being approved for use. It's a pretty rigorous process, and it should be. There are many, many on this list that are in phase 1 clinical trials. It's not like they're going to be available next week. Only a small percentage will likely end up being approved, and it could take years before that happens.
Second, the number is inflated a little bit. A bunch of them have already been approved for one type of use, and they're in trials for a different use. For example, Bexxar and Zevalin are on the list. Zevalin has been approved as a consolidation therapy for Follicular Lymphoma, but it's on the list as "in development" because it's in trial for DLBCL and MCL, two other types of Non-Hodgkin's Lymphoma. Same for Treanda/Bendamustine. So a lot of the treatments listed aren't really "new," but they do have some potential new uses.
That said, even if 10% of these end up in the oncologist's office some day, that's still 24 more options than blood cancer patients have now.
There's also a video of a panel that discusses the report and the state of treatments in the pipeline, including a representative from PhRMA, someone from the Leukemia and Lymphoma Society, and a (multiple) lymphoma survivor. Worth a look and listen if you have an hour.
***************************************
I have a 4 month check-up tomorrow with Dr. R. I don't anticipate any problems. I'm feeling good, and there haven't been any nodes popping up anyplace recently. I'll post an update tomorrow afternoon or Friday morning.
How many treatments are currently in development?
Over 240.
That includes 98 different treatments for lymphomas, including 7 that are listed specifically for Follicular Lymphoma (plus a whole lot more for indolent lymphomas, and more still for unspecified lymphomas, mostly in phase 1 trials).
That's pretty cool. It's impressive to see so many treatments in development in one place. More arrows in the quiver, indeed.
Now, I haven't spent too much time sifting through the particular treatments, but there are some things to keep in mind as you look at the report.
First, not all of these medicines will end up being approved for use. It's a pretty rigorous process, and it should be. There are many, many on this list that are in phase 1 clinical trials. It's not like they're going to be available next week. Only a small percentage will likely end up being approved, and it could take years before that happens.
Second, the number is inflated a little bit. A bunch of them have already been approved for one type of use, and they're in trials for a different use. For example, Bexxar and Zevalin are on the list. Zevalin has been approved as a consolidation therapy for Follicular Lymphoma, but it's on the list as "in development" because it's in trial for DLBCL and MCL, two other types of Non-Hodgkin's Lymphoma. Same for Treanda/Bendamustine. So a lot of the treatments listed aren't really "new," but they do have some potential new uses.
That said, even if 10% of these end up in the oncologist's office some day, that's still 24 more options than blood cancer patients have now.
There's also a video of a panel that discusses the report and the state of treatments in the pipeline, including a representative from PhRMA, someone from the Leukemia and Lymphoma Society, and a (multiple) lymphoma survivor. Worth a look and listen if you have an hour.
***************************************
I have a 4 month check-up tomorrow with Dr. R. I don't anticipate any problems. I'm feeling good, and there haven't been any nodes popping up anyplace recently. I'll post an update tomorrow afternoon or Friday morning.
Monday, May 6, 2013
Survivors' Song
Lymphoma Rock Star Jamie Reno released a nice song on YouTube about a week ago, called "Survivors' Song."
Now, usually when I call some a Lymphoma Rock Star, it's because they do something great for Lymphoma -- advocates like of Karl Schwartz of Lymphomation.org and Liz McMillan of HOPE for Lymphoma, or authors like Betsy DeParry, or researchers like Dr. Bruce Cheson -- and so many others. So the "Rock Star" title is usually kind of an honorary thing.
Jamie Reno, however, is an actual Rock Star, as the video makes clear. He wrote and sings the song, and features his hero Peter Frampton on lead guitar. Go to his web site, and you'll see that he's also an author and speaker, as well as a 16 year Non-Hodgkin's Lymphoma survivor.
"Survivor's Song" features some cancer survivors singing the chorus, as well as the great couplet "We have met the devil, stared him down and kicked his ass./We have tales to tell. We live for now, not in the past."
The video is linked above, but I'll just embed here, too. Enjoy.
Now, usually when I call some a Lymphoma Rock Star, it's because they do something great for Lymphoma -- advocates like of Karl Schwartz of Lymphomation.org and Liz McMillan of HOPE for Lymphoma, or authors like Betsy DeParry, or researchers like Dr. Bruce Cheson -- and so many others. So the "Rock Star" title is usually kind of an honorary thing.
Jamie Reno, however, is an actual Rock Star, as the video makes clear. He wrote and sings the song, and features his hero Peter Frampton on lead guitar. Go to his web site, and you'll see that he's also an author and speaker, as well as a 16 year Non-Hodgkin's Lymphoma survivor.
"Survivor's Song" features some cancer survivors singing the chorus, as well as the great couplet "We have met the devil, stared him down and kicked his ass./We have tales to tell. We live for now, not in the past."
The video is linked above, but I'll just embed here, too. Enjoy.
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