There's a very interesting article on targeted therapies in the current issue of Cure, a magazine for cancer patients and their loved ones. (Cure is the kind of magazine that you find 100 free copies of in oncologists' waiting rooms. That's not a criticism -- it's a very good, general cancer magazine.)
The article is called "Targeted Therapies: Hope or Hype?", and it discusses some of the promise and frustrations that targeted therapies have had over the years. Targeted therapies are cancer treatments that are developed in response to research that has identified some biological mechanism in a type of cancer; the treatment is aimed at shutting down the tumor by shutting down that particular mechanism that makes the tumpr grow. (The article uses a nice analogy: it's like stopping a car not by using the breaks, but by disconnecting the spark plugs.) The idea is to hit the cancer cells without doing damage to the healthy cells (which is the big problem with standard chemotherapies).
Targeted therapies were initially greeted with much fanfare, and early treatments were hailed as miracles. But, as the article points out, researchers have realized that stopping cancer isn't as easy as they had hoped, for lots of reasons. For instance, tumors usually have more than one mechanism that keeps them growing, so you need multiple targeted therapies to do the job of shutting them down permanently, which means different strains of research to identify the different emchanisms, and then time and money to develop the individual therapies.
There are other reasons, too, but you get the point -- this isn't a quick fix, much as we'd all like one.
Still, I'm leaning WAY to the side of "hope," rather than "hype." in the question posed by the title of the article.
Consider, for example, that Rituxin is an early instance of a targeted therapy. It targets CD20 proteins on lymphoma cells, without damaging other cells. A perfect example.
And a perfect example of a success -- the use of Rituxin has about doubled the overall survival rate of Follicular NHL patients in the last 10 years.
I think I've been looking deeply enough into all of this over the last year and a half to know that a miracle treatment isn't coming really soon. Maybe some day, but not really soon. For something like fNHL, which is essentially a chronic illness (or should be looked at as one, anyway), the "hope" comes in knowing that more and more targeted therapies are being developed, and that each one has the potential to stretch a remission just a little bit longer, with a little less toxicity than the last.
What they provide is time. And that's really what hope is all about.
Monday, June 29, 2009
Friday, June 26, 2009
Farrah
I'll have to save the Michael Jackson tribute for some other time. MJ was a Friend of Lympho Bob -- "We Are the World" and Thriller has been mentioned here more than once. Very sad news.
But for me, Farrah Fawcett's passing is just a little sadder. I won't get too heavily into why, other than to say she played as significant a role in my adolescence as she did in that of millions of other men around my age. I remember the day I got the The Farrah Poster -- I won it playing Skee Ball at Lincoln Park's arcade (on a day trip with the altar boys from St. Mary's, which somehow made the whole thing even better). I won't even bother linking to an image of The Poster -- you've probably seen it a hundred times in the last day or two.
Farrah lives on for me, not just in the great memory of that poster, but in this very cool and surprising connection:
Her doctor was Dr. Lawrence Piro, who's kind of an "oncologist to the stars" in L.A. But more importantly, he's an internationally recognized expert in blood cancers. He did early work with Rituxin, helping to establish dosage guidelines through his research.
And now he's pushing Zevalin. A Newsweek blog from yesterday includes an interview with Dr. Piro, much of which discusses the importance of oncologists recognizing the benefits of Zevalin and other RadioImmunoTherapies like Bexxar for lymphoma patients.
So, going back to the last post about looking for the bright side -- maybe Farrah's very public battle with cancer will result in some unexpected good for NHL patients.
But for me, Farrah Fawcett's passing is just a little sadder. I won't get too heavily into why, other than to say she played as significant a role in my adolescence as she did in that of millions of other men around my age. I remember the day I got the The Farrah Poster -- I won it playing Skee Ball at Lincoln Park's arcade (on a day trip with the altar boys from St. Mary's, which somehow made the whole thing even better). I won't even bother linking to an image of The Poster -- you've probably seen it a hundred times in the last day or two.
Farrah lives on for me, not just in the great memory of that poster, but in this very cool and surprising connection:
Her doctor was Dr. Lawrence Piro, who's kind of an "oncologist to the stars" in L.A. But more importantly, he's an internationally recognized expert in blood cancers. He did early work with Rituxin, helping to establish dosage guidelines through his research.
And now he's pushing Zevalin. A Newsweek blog from yesterday includes an interview with Dr. Piro, much of which discusses the importance of oncologists recognizing the benefits of Zevalin and other RadioImmunoTherapies like Bexxar for lymphoma patients.
So, going back to the last post about looking for the bright side -- maybe Farrah's very public battle with cancer will result in some unexpected good for NHL patients.
Wednesday, June 24, 2009
Get Happy
There was an interesting article on Medical News Today a couple of days ago called "Cancer: A Silver Lining?" (I've reprinted it below).
23 Jun 2009
Cancer -- the word resonates in people's nightmares and strikes fear in the hearts of millions. Can there be a positive side amidst the panic, anxiety and hopeless feelings that often accompany the word? The answer is yes according to Dr. Patricia Mumby, associate professor Loyola University Chicago Stritch School of Medicine Psychiatry and Behavioral Neurosciences Department and director of Loyola Cardinal Bernadine Cancer Center Psychosocial Oncology Service.
"When we first ask people to find something good about having cancer they pause and give us a puzzled look, but a majority of cancer survivors and patients can find positives. The longer it's been since their diagnosis the more positives they can find," said Mumby. "It's amazing to watch as they look for benefits. They mentally make a shift and start to have a broader perspective. People who can find positives early on often have less anxiety overall."
Though research is preliminary, staff at the Loyola University Health System Cardinal Bernadine Cancer Center have discovered that finding benefits and positives in the cancer experience may improve a patient's quality of life and relationships with others. They appear to have a greater appreciation for life, deeper spirituality and often find changes in their life values. It can also build self-esteem and self-confidence."
People who are going through cancer treatments have to face challenges head-on and when they are able to master them and move forward, that builds self-esteem. Coping and adapting to life stresses builds self-confidence," said Mumby.
Another commonly found positive is that people who are being treated for cancer improve their health behaviors, often making them healthier then they were before their diagnosis."Some of the behaviors people have prior to their cancer treatment may put them at risk for recurrence, secondary types of cancer or other health issues. Cancer can be a scary wake-up call causing people to change many of their unhealthy behaviors and may help them to realize the importance of taking care of themselves," said Mumby.
According to Mumby a recent study of health outcomes and quality of life of breast cancer survivors at Loyola showed that 49 percent of women in the study smoked prior to their diagnosis. Following treatment only 9 percent continued the habit.
"We would of course like the number to be zero, but the decrease in smoking among these women was significant and a very positive thing," said Mumby.Initially the benefit-finding process can be difficult as patients work through their anxiety, try to adjust to all the changes and cope with the idea that their lives will never be the same. Over time they begin to see that good has come out the difficult journey. Many find that they have a healthier perspective on relationships. Some have significant life, career or education changes.
Silvia Durkin, a Schaumburg, Ill., resident, wife and mother of two, was the picture in the dictionary of self-sacrifice. She was always thinking of others, sometimes to the detriment of herself. When a lump in her breast turned out to be cancer her life was turned inside out."When I found out I had cancer it was like an explosion that shook me to the core. I didn't know where to go or what do. I like to be in control, but when the diagnosis was cancer I thought I had lost control of my own body and that was really difficult," said Durkin. "But it was what I needed to get me out of my ingrained habits. Though I'd always been active and a healthy eater I started to break out of my old habits and learn more about different types of exercise and eating a variety of foods. When I met with Dr. Mumby she encouraged me to start doing something for myself."
That something was Pilates and yoga classes. Durkin found she really enjoyed them and was a star pupil. Now, cancer free, Silvia has become a Pilates instructor at the studio at the request of the owner. "I would never have even considered taking classes let alone being an instructor before I had cancer. We get so boxed into our lives that it sometimes takes a kick in the butt to get us out," said Durkin.
She's also found that it has encouraged her to help others in a healthier way and that she hopes her experience will give someone else facing a similar situation hope. "This really made me reach into myself and take a look at the big picture. Good things and bad things happen and we need to find positives in every bump in the road," said Durkin.
"People need time to process their experience. Benefit-finding helps people contemplate and reflect over the whole experience and put things into perspective: this is where I was and this is where I am now," said Mumby. This is especially true for cancer survivors like Durkin."The transition into long-term cancer survivor has received little attention, but with 12 million cancer survivors and the number continuing to grow these issues will become more and more important," said Mumby. "Having had cancer will always be a part of their lives, but the question is where do they go from here? Benefit-finding helps them look at the experience and to see how far they've come and to take pride in that. It also shows them life is still out there and there is more for them to do."
Source: Loyola University Health System
Researchers in Chicago asked cancer patients (soon after they had been diagnosed) if there was anything good about having cancer. The patients thought hard, but did manage to come up with something -- they appreciated certain things a little more, they made more of an effort to live a healthier lifestyle, etc. The researchers found that such a focus on the positive led to positive things happening, like a better quality of life, deeper spiritual connections, better relationships with loved ones.
The article came out at kind of an interesting time. Someone in the support group had posted it, and at almost the same time, someone else had posted another article about not having to be happy all the time, and the benefits of crying. One thing that many cancer patients hate to hear is, "You have to stay positive." It's always meant well, and it's a nice reminder sometimes, but, as that "crying" article says, sometimes what you need is a good cry, and if everyone is telling you to be happy, then you feel guilty about being sad. But, as the article said, crying is a physical and emotional release. We often feel better after a good cry. The article cited a study that showed that the chemical composition of tears that are shed after slicing an onion are different from tears of sadness: the "sad" tears contain chemicals that make us feel good. So crying seems to be a way for the body to try to stop being sad.
I guess it's a matter of knowing when to cry and when to stop -- as if we had total control over it. I've been fortunate to have lots of opportunity to stay positive, being pretty healthy (all things considered) for the last year and a half. But I certainly shed plenty of tears along the way, too. I'm naturally upbeat, which makes it easier to stay positive. But for many patients, I think that "Stay positive!" advice works better when they're already in the middle of some good news.
Interesting issue to think about.
*************************
23 Jun 2009
Cancer -- the word resonates in people's nightmares and strikes fear in the hearts of millions. Can there be a positive side amidst the panic, anxiety and hopeless feelings that often accompany the word? The answer is yes according to Dr. Patricia Mumby, associate professor Loyola University Chicago Stritch School of Medicine Psychiatry and Behavioral Neurosciences Department and director of Loyola Cardinal Bernadine Cancer Center Psychosocial Oncology Service.
"When we first ask people to find something good about having cancer they pause and give us a puzzled look, but a majority of cancer survivors and patients can find positives. The longer it's been since their diagnosis the more positives they can find," said Mumby. "It's amazing to watch as they look for benefits. They mentally make a shift and start to have a broader perspective. People who can find positives early on often have less anxiety overall."
Though research is preliminary, staff at the Loyola University Health System Cardinal Bernadine Cancer Center have discovered that finding benefits and positives in the cancer experience may improve a patient's quality of life and relationships with others. They appear to have a greater appreciation for life, deeper spirituality and often find changes in their life values. It can also build self-esteem and self-confidence."
People who are going through cancer treatments have to face challenges head-on and when they are able to master them and move forward, that builds self-esteem. Coping and adapting to life stresses builds self-confidence," said Mumby.
Another commonly found positive is that people who are being treated for cancer improve their health behaviors, often making them healthier then they were before their diagnosis."Some of the behaviors people have prior to their cancer treatment may put them at risk for recurrence, secondary types of cancer or other health issues. Cancer can be a scary wake-up call causing people to change many of their unhealthy behaviors and may help them to realize the importance of taking care of themselves," said Mumby.
According to Mumby a recent study of health outcomes and quality of life of breast cancer survivors at Loyola showed that 49 percent of women in the study smoked prior to their diagnosis. Following treatment only 9 percent continued the habit.
"We would of course like the number to be zero, but the decrease in smoking among these women was significant and a very positive thing," said Mumby.Initially the benefit-finding process can be difficult as patients work through their anxiety, try to adjust to all the changes and cope with the idea that their lives will never be the same. Over time they begin to see that good has come out the difficult journey. Many find that they have a healthier perspective on relationships. Some have significant life, career or education changes.
Silvia Durkin, a Schaumburg, Ill., resident, wife and mother of two, was the picture in the dictionary of self-sacrifice. She was always thinking of others, sometimes to the detriment of herself. When a lump in her breast turned out to be cancer her life was turned inside out."When I found out I had cancer it was like an explosion that shook me to the core. I didn't know where to go or what do. I like to be in control, but when the diagnosis was cancer I thought I had lost control of my own body and that was really difficult," said Durkin. "But it was what I needed to get me out of my ingrained habits. Though I'd always been active and a healthy eater I started to break out of my old habits and learn more about different types of exercise and eating a variety of foods. When I met with Dr. Mumby she encouraged me to start doing something for myself."
That something was Pilates and yoga classes. Durkin found she really enjoyed them and was a star pupil. Now, cancer free, Silvia has become a Pilates instructor at the studio at the request of the owner. "I would never have even considered taking classes let alone being an instructor before I had cancer. We get so boxed into our lives that it sometimes takes a kick in the butt to get us out," said Durkin.
She's also found that it has encouraged her to help others in a healthier way and that she hopes her experience will give someone else facing a similar situation hope. "This really made me reach into myself and take a look at the big picture. Good things and bad things happen and we need to find positives in every bump in the road," said Durkin.
"People need time to process their experience. Benefit-finding helps people contemplate and reflect over the whole experience and put things into perspective: this is where I was and this is where I am now," said Mumby. This is especially true for cancer survivors like Durkin."The transition into long-term cancer survivor has received little attention, but with 12 million cancer survivors and the number continuing to grow these issues will become more and more important," said Mumby. "Having had cancer will always be a part of their lives, but the question is where do they go from here? Benefit-finding helps them look at the experience and to see how far they've come and to take pride in that. It also shows them life is still out there and there is more for them to do."
Source: Loyola University Health System
Monday, June 22, 2009
Image of the Year
The organization SNM has named its "Image of the Year," and the award goes to this image showing the effectiveness of RadioImmunoTherapies (RIT) Bexxar and Zevalin (of which I have written fondly many times in the past):
Isn't it beautiful?
The images are from PET scans that show reduced cancer activity (the dark spots). The first two are the Before and After for Bexxar, and the third and fourth are for Zevalin. You can see the reduction of dark spots (not all the spots are cancerous).
The image is from a study at Stanford that looked at Bexxar's and Zevalin's effectiveness for patients with relapsed NHL. You know how RIT works: it identifies b-cells and kills them off with a shot of radiation delivered right to those cells. The overall study confirmed the effectiveness of RIT for many patients, and the lead invesitigator is excited to see how RIT works as a first treatment for NHL (it's only approved now for patients who have already received another treatment and had it return).
Very encouraging, as always. Despite RIT's strange reimbursement structure and complexity in administering, the article points out that RIT treatments cost about half of what a course of chemo costs, so maybe insurers will start pushing it more. I hope so. It's too good a weapon to ignore for bureaucratic reasons.
SNM, the organization that gave out the image award, is "an international scientific and professional organization of more than 16,000 members dedicated to promoting the science, technology and practical applications of molecular imaging and therapy and nuclear medicine to diagnose, manage and treat diseases." Nice to know there are so many people who think so highly of RIT. I hope they'll push hard for more widespread use.
Interestingly, I looked at SNM's web site for about 20 minutes, and couldn't find anything that told me what "SNM" stood for, so the site is either really poorly written, or they just think it's neat to have only initials, like LL Cool J (Mama said knock that cancer out!). But I did find out that you can get an SNM hat or "cardiac necktie" in either gray or blue, with a repeating pattern of a diagnostic image of a heart. (Keep in mind, though, that the tie is $6 cheaper if you're a member of SNM.)
Isn't it beautiful?
The images are from PET scans that show reduced cancer activity (the dark spots). The first two are the Before and After for Bexxar, and the third and fourth are for Zevalin. You can see the reduction of dark spots (not all the spots are cancerous).
The image is from a study at Stanford that looked at Bexxar's and Zevalin's effectiveness for patients with relapsed NHL. You know how RIT works: it identifies b-cells and kills them off with a shot of radiation delivered right to those cells. The overall study confirmed the effectiveness of RIT for many patients, and the lead invesitigator is excited to see how RIT works as a first treatment for NHL (it's only approved now for patients who have already received another treatment and had it return).
Very encouraging, as always. Despite RIT's strange reimbursement structure and complexity in administering, the article points out that RIT treatments cost about half of what a course of chemo costs, so maybe insurers will start pushing it more. I hope so. It's too good a weapon to ignore for bureaucratic reasons.
SNM, the organization that gave out the image award, is "an international scientific and professional organization of more than 16,000 members dedicated to promoting the science, technology and practical applications of molecular imaging and therapy and nuclear medicine to diagnose, manage and treat diseases." Nice to know there are so many people who think so highly of RIT. I hope they'll push hard for more widespread use.
Interestingly, I looked at SNM's web site for about 20 minutes, and couldn't find anything that told me what "SNM" stood for, so the site is either really poorly written, or they just think it's neat to have only initials, like LL Cool J (Mama said knock that cancer out!). But I did find out that you can get an SNM hat or "cardiac necktie" in either gray or blue, with a repeating pattern of a diagnostic image of a heart. (Keep in mind, though, that the tie is $6 cheaper if you're a member of SNM.)
Thursday, June 18, 2009
Oink
Well, the H1N1 swine flu has hit home...we think.Peter felt bad after baseball practice Monday night -- headache, sore throat, a little nausea. Not much of a surprise, since most of his classmates have been out of school at some point during the last couple of weeks. He fell asleep in his clothes, and woke up Monday morning feeling worse, with all of those same symptoms plus body aches. Isabel took him to the doctor.
"Classic flu symptoms," he said. Peter just about passed out in the parking lot of the doctor's office.
According to the doctor, they're not even testing for swine flu anymore; since it's past flu season, they're just assuming that any flu at this point is swine flu. He also said they've had about 100 cases in his office, and kids have been feeling better after a day or two.
The good news is, Peter felt better by Tuesday afternoon. Isabel started feeling bad Tuesday night, but seemed much better by Wednesday afternoon. I felt bad starting last night, so I'm hoping for an afternoon recovery.
If it continues like this, we should be done with it all by Saturday.
Peter missed the last few days of the school year, but he isn't complaining about it too much. What he is complaining about is missing a baseball game and being forced to sit around the house even though he feels fine. So it could be a lot worse.
I'll keep you updated on our piggy problems....
Monday, June 15, 2009
Blaming and Blogging
My brother responded to the last post, in which I reminded everyone about his Pan Mass Challenge bike ride to raise money for cancer research, and asked him to post the address for anyone who wants to donate to him online. He wisely suggested that I give the address in a blog post, since many people might see that the comment came from him and just stop reading.
So, if you are interested in donating to my brother's ride (and I encourage you to do so), here's the web address:
http://www.pmc.org/egifts/MM0386
Thanks for your support, and for helping cancer research.
**********************
A friend sent me a link for an interesting web site called BlameDrewsCancer.com. About a month ago, a blogger named Drew Olanoff was diagnosed with Hodgkin's Lymphoma, and set up this site. As the site says, ever since the day he was diagnosed, he has blamed everything on his cancer: "Losing his keys, misplacing his wallet, the Phillies losing, etc." His site allows other people, via Twitter, to send in anything that they want to blame on Drew's cancer. So far, he's had almost 7000 people blame over 10,000 things on his cancer.
I certainly understand that impulse. I don't necessarily blame things on my cancer, but I use it as a convenient excuse. I'd really like my wife to get better at using that excuse, too, so when people ask her if I can help with things, she can get me out of volunteering. ("Do you think Bob can help build sets for the ballet recital?" "No, sorry. He's busy....battling cancer.") Goodness knows it's gotten me out of some committee assignments at work.
Anyway, Drew's blaming cance isn't just therapuetic; he's hoping to get someone to sponsor the site so that every time someone blames something on his cancer, a donation is made to Make a Wish or the American Cancer Society or some similar organization.
Good luck, Drew.
*******************
Speaking of bloggers like Drew (and me).....
The New York Times had an interesting article last week on blogging. According to the Times piece, a company called Technorati (which runs a search engine for blogs) did a survey of existing blogs, and found that "only 7.4 million out of the 133 million blogs the company tracks had been updated in the past 120 days. That translates to 95 percent of blogs being essentially abandoned, left to lie fallow on the Web, where they become public remnants of a dream — or at least an ambition — unfulfilled. "
Fascinating. And not surprising. I've encountered plenty of blogs that had some great promise, but which were abandonded pretty quickly, and never de-activated. (Long-time readers may recall that I had really hoped to call this blog Lymphomaniac, but found that the name was taken by someone who started a blog with that name. He wrote one past about thinking that he had lymphoma, then another saying he'd found out he didn't have it, and so abandoned the blog after two posts. But the name is still his.)
The Times article puts some emphasis on the commercial nature of blogs: people thought they would make some cash through advertising, only to find that while they had readers, no one wanted to click on the ads. Others found that ranting online seemed like a great idea, but that the people they were ranting about had access to their blogs, which made things kind of messy. And maybe some people who used to blog are now going the way of Facebook and Twitter -- still ranting, but only a sentence or two at a time.
I still find the whole blogging thing to be both fun and useful. My audience has changed over time, which is itself pretty interesting: if you look at early entries, there were lots of people who commented that I know don't even read anymore. And then along the way, I picked up readers that I've never met before, who have found some information about fNHL from me. There have certainly been some constants -- family and friends.
I guess I never saw the blog as a way to make money, or as just a place to rant. I write for others, not myself, though I do use it as a kind of diary, I guess. (I've written some entries that I never published, because I talked about stuff that would worry my mother unnecessarily. But the writing of them was therapeutic in itself, even if I didn't see them published.) For a writing teacher, it's a pretty cool exercise, balancing the needs of m,ultiple audiences with my own needs. So it's been satisfying on a number of levels.
Anyway, I'll keep writing, even if 95% of my blogging colleagues have gone and quit. I don't know the official numbers, but I'm guessing it's close to 5% of fNHL patients that are diagnosed at my age, so I'm comfortable with being in that kind of "elite" percentile.
(A special note to one of you: I used "in which" on purpose, just for you.)
So, if you are interested in donating to my brother's ride (and I encourage you to do so), here's the web address:
http://www.pmc.org/egifts/MM0386
Thanks for your support, and for helping cancer research.
**********************
A friend sent me a link for an interesting web site called BlameDrewsCancer.com. About a month ago, a blogger named Drew Olanoff was diagnosed with Hodgkin's Lymphoma, and set up this site. As the site says, ever since the day he was diagnosed, he has blamed everything on his cancer: "Losing his keys, misplacing his wallet, the Phillies losing, etc." His site allows other people, via Twitter, to send in anything that they want to blame on Drew's cancer. So far, he's had almost 7000 people blame over 10,000 things on his cancer.
I certainly understand that impulse. I don't necessarily blame things on my cancer, but I use it as a convenient excuse. I'd really like my wife to get better at using that excuse, too, so when people ask her if I can help with things, she can get me out of volunteering. ("Do you think Bob can help build sets for the ballet recital?" "No, sorry. He's busy....battling cancer.") Goodness knows it's gotten me out of some committee assignments at work.
Anyway, Drew's blaming cance isn't just therapuetic; he's hoping to get someone to sponsor the site so that every time someone blames something on his cancer, a donation is made to Make a Wish or the American Cancer Society or some similar organization.
Good luck, Drew.
*******************
Speaking of bloggers like Drew (and me).....
The New York Times had an interesting article last week on blogging. According to the Times piece, a company called Technorati (which runs a search engine for blogs) did a survey of existing blogs, and found that "only 7.4 million out of the 133 million blogs the company tracks had been updated in the past 120 days. That translates to 95 percent of blogs being essentially abandoned, left to lie fallow on the Web, where they become public remnants of a dream — or at least an ambition — unfulfilled. "
Fascinating. And not surprising. I've encountered plenty of blogs that had some great promise, but which were abandonded pretty quickly, and never de-activated. (Long-time readers may recall that I had really hoped to call this blog Lymphomaniac, but found that the name was taken by someone who started a blog with that name. He wrote one past about thinking that he had lymphoma, then another saying he'd found out he didn't have it, and so abandoned the blog after two posts. But the name is still his.)
The Times article puts some emphasis on the commercial nature of blogs: people thought they would make some cash through advertising, only to find that while they had readers, no one wanted to click on the ads. Others found that ranting online seemed like a great idea, but that the people they were ranting about had access to their blogs, which made things kind of messy. And maybe some people who used to blog are now going the way of Facebook and Twitter -- still ranting, but only a sentence or two at a time.
I still find the whole blogging thing to be both fun and useful. My audience has changed over time, which is itself pretty interesting: if you look at early entries, there were lots of people who commented that I know don't even read anymore. And then along the way, I picked up readers that I've never met before, who have found some information about fNHL from me. There have certainly been some constants -- family and friends.
I guess I never saw the blog as a way to make money, or as just a place to rant. I write for others, not myself, though I do use it as a kind of diary, I guess. (I've written some entries that I never published, because I talked about stuff that would worry my mother unnecessarily. But the writing of them was therapeutic in itself, even if I didn't see them published.) For a writing teacher, it's a pretty cool exercise, balancing the needs of m,ultiple audiences with my own needs. So it's been satisfying on a number of levels.
Anyway, I'll keep writing, even if 95% of my blogging colleagues have gone and quit. I don't know the official numbers, but I'm guessing it's close to 5% of fNHL patients that are diagnosed at my age, so I'm comfortable with being in that kind of "elite" percentile.
(A special note to one of you: I used "in which" on purpose, just for you.)
Thursday, June 11, 2009
Donations
The National Marrow Donor Program has once again waived the fee for marrow donation registration for a couple of weeks -- June 8 to the 22nd. Please consider registering.
The NMDP had a similar program last year (though they didn't call it the "Match Marrowthon" then. I dig the nice name change.) It usually costs about $100 to get someone on the registry, but a donor is paying the fees during the Marrowthon. Pretty simple -- you get a kit from NMDP and send a cheek swab so they can figure out your profile and potentially match you up with someone who needs a bone marrow/stem cell transplant. Donating the marrow/stem cells isn't too tough -- see the steps here. Sounds a whole lot like a Bone Marrow Biopsy, which I did with just local anesthetic. Not fun, but a huge deal. Toughen up.
If you're a regular reader, you know (or can guess) how important bone marrow transplants are for lots of cancer patients. For some fNHL patients (and especially for patients of more aggressive lymphomas), transplants are currently their last hope. The transplants support heavy chemo treatments, which destroys their immune systems. The transplant allows the immune system to recover much more quickly than it would on its own, making the recipient much less vulnerable to serious (and sometimes life-threatening) infection.
*****************************
If you're not up for donating a part of your body, then consider giving a little cash instead. My brother is still in training for the Pan Mass Challenge, and is still seeking donations. The money from his two-day August bike ride goes to cancer research at Dana-Farber. (They're in the middle of 50 different clinical trials for various types of NHL, including a bunch for follicular. Some very cool-looking, cutting-edge treatments.)
I'm sure my brother will be good enough to post instructions once again for how to make a donation.
Consider giving something.
The NMDP had a similar program last year (though they didn't call it the "Match Marrowthon" then. I dig the nice name change.) It usually costs about $100 to get someone on the registry, but a donor is paying the fees during the Marrowthon. Pretty simple -- you get a kit from NMDP and send a cheek swab so they can figure out your profile and potentially match you up with someone who needs a bone marrow/stem cell transplant. Donating the marrow/stem cells isn't too tough -- see the steps here. Sounds a whole lot like a Bone Marrow Biopsy, which I did with just local anesthetic. Not fun, but a huge deal. Toughen up.
If you're a regular reader, you know (or can guess) how important bone marrow transplants are for lots of cancer patients. For some fNHL patients (and especially for patients of more aggressive lymphomas), transplants are currently their last hope. The transplants support heavy chemo treatments, which destroys their immune systems. The transplant allows the immune system to recover much more quickly than it would on its own, making the recipient much less vulnerable to serious (and sometimes life-threatening) infection.
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If you're not up for donating a part of your body, then consider giving a little cash instead. My brother is still in training for the Pan Mass Challenge, and is still seeking donations. The money from his two-day August bike ride goes to cancer research at Dana-Farber. (They're in the middle of 50 different clinical trials for various types of NHL, including a bunch for follicular. Some very cool-looking, cutting-edge treatments.)
I'm sure my brother will be good enough to post instructions once again for how to make a donation.
Consider giving something.
Monday, June 8, 2009
Happy Birthday....
....to me!
Yes, today is my birthday. Last year on my birthday, I made a wish that Year 41 would be better than Year 40 (which began with bronchitis, moved on to pneumonia, a chest x-ray that showed a swollen chest node, and then a cancer diagnosis).
I'd say my wish came true. It was a good year. Health-wise, it seems like I've had one fairly small, nagging health problem after another (a chest thing, followed by a stomach thing, then a head thing, then a skin thing, then a weird dizziness thing, then another stomach thing, etc., etc.). None of it has turned out to be anything major. It's always just enough to send me one doctor or another for fear that it's something bad, or that it might turn into something bad.
(By the way -- a dizziness update: since I had the MRI results come back with no problems, the dizziness has gone away. Coincidence? Was it really just stress? Who the hell knows.)
All of this paranoia sucks. Before all of this, I rarely even took a Tylenol. Now I'm in some doctor's office every month. Part of it is probably just getting older, and everyone my age has little nagging problems. But it sucks having to worry about every little thing.
Of course, it beats the alternative -- dealing with A Very Big Thing. And so far, I'm still stable, and I'm very grateful for that.
It's been a year of worrying, but also a year of learning more about the disease, and being at least a little better prepared for whatever comes next.
It's been a year of nagging ilnesses, but also a year of hearning from people in my support group about how to overcome problems if and when they come.
It's been a year of doctors visits, but also a year of being able to run around with my kids.
May Year 42 be just as healthy and uneventful.
Yes, today is my birthday. Last year on my birthday, I made a wish that Year 41 would be better than Year 40 (which began with bronchitis, moved on to pneumonia, a chest x-ray that showed a swollen chest node, and then a cancer diagnosis).
I'd say my wish came true. It was a good year. Health-wise, it seems like I've had one fairly small, nagging health problem after another (a chest thing, followed by a stomach thing, then a head thing, then a skin thing, then a weird dizziness thing, then another stomach thing, etc., etc.). None of it has turned out to be anything major. It's always just enough to send me one doctor or another for fear that it's something bad, or that it might turn into something bad.
(By the way -- a dizziness update: since I had the MRI results come back with no problems, the dizziness has gone away. Coincidence? Was it really just stress? Who the hell knows.)
All of this paranoia sucks. Before all of this, I rarely even took a Tylenol. Now I'm in some doctor's office every month. Part of it is probably just getting older, and everyone my age has little nagging problems. But it sucks having to worry about every little thing.
Of course, it beats the alternative -- dealing with A Very Big Thing. And so far, I'm still stable, and I'm very grateful for that.
It's been a year of worrying, but also a year of learning more about the disease, and being at least a little better prepared for whatever comes next.
It's been a year of nagging ilnesses, but also a year of hearning from people in my support group about how to overcome problems if and when they come.
It's been a year of doctors visits, but also a year of being able to run around with my kids.
May Year 42 be just as healthy and uneventful.
Thursday, June 4, 2009
Two Things
The St. Raphael's hospital's Father McGivney Cancer Center recently opened up about a half mile from my house. It's a new addition to the buildling where Dr. R used to have an office. (His practice is still there, but he moved to an office about 20 minutes away.)
It looks like a very cool facility, with some cutting-edge technology, and will save a lot of people from traveling to downtown New haven (which isn't that big a deal, but when you're going in for a treatment, it's one less stressful thing to worry about).
The Cancer Center had an open house on Sunday. Isabel and I joked about what exactly a cancer center Open House would be like. Naturally, I went where I shouldn't and suggested there might be entertainment (Chemo the Clown, maybe?). Our local paper had a story about the open house this week. No photos of clowns, but there was a picture of a CT/PET scan machine with balloons on it. Unfortunately, I can't find it online.
Come on, kids -- who says radiation-based diagnostic imaging systems can't be fun, huh?
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Catherine is playing softball this year, and I was roped into coaching. There's another guy who's head coach. At first, he just "needed a little help with practices." Then I somehow became official assistant coach. Soon after that, he told me, "You know, sometimes I need to go out of town for a few days for work..." (That's only happened once, and the game got rained out, so I didn't have to be interim head coach for the night.)
It's actually kind of fun. I was assistant coach at various times for the boys' baseball teams, so I don't mind doing it, and most of the girls on the team are a trip and keep me smiling. At Catherine's age, it's a "coach pitch" league, so while the head coach pitches to the girls, I keep score, coach first base, and help out where I can.
But Tuesday night, the coach asked me to pitch for the first time, so he could work with the girls as they were up at bat. I had pitched some to the girls during practices, but this was my first time during a game. Catherine happened to be the first batter that I faced.
I hit her with a pitch.
Now, those of you who know Catherine know that, since she's been about six months old, Catherine has had what her pediatrician called a "disarming stare." After I hit her with the pitch, I got that stare. It's kind of through half-closed eyes, with a look that says both "You're lucky I have so much self control" and "You're buying me ice cream after the game."
She was fine. I didn't even let her take first base.
There's no crying in softball. No balloons or clowns, either.
Catherine and Dad, in the happy days before I hit her with a pitch....
Monday, June 1, 2009
Speak of the Devil....
...or an angel.
Here I am writing about lymphoma vaccines, and how they've seemed to hold so much promise, but just aren't working, and BOOM, there's a news story about lymphoma vaccines. It's a good one, too.
The American Society of Clininal Oncology (ASCO) is in the middle of their annual conference right now (see all the summaries/abstracts for the lymphoma-related research here), and one of the big success stories has been the presentation on the vaccine for follicular NHL. It was part of a mainstream, Associated Press news story on cancer vaccines.
Apparently, the fNHL vaccine is working. The ASCO presentation looked at 117 fNHL patients who had been in remission after chemo. The research showed that the group that didn't take the vaccine had an average of 30 months before the NHL returned. Those who had the vaccine took 44 months.
Now, an extra 14 months might not seem like a big deal, but given the results of previous vaccine studies, this is major, major good news. As the news story points out, "That's huge in this field, where progress is glacial and success with a new treatment is often measured in weeks or even days."
So, this vaccine isn't The Answer -- not yet. Again, from the news story: "It's way too soon to declare victory. No one knows how long the benefits will last, whether people will need "boosters" to keep their disease in check, or whether vaccines will ever be a cure. Many vaccines must be custom-made for each patient. How practical will that be, and what will it cost?"
But it seems like a major step on the way to making this particular treatment work. Think about what I wrote about last time, with other researchers seeming to have found out why vaccines aren't working. Imagine, in a few years, taking something that already works well, and improving it even more.
Pretty rare that follicular NHL makes it into a news story. I'm glad it was good news.
Here I am writing about lymphoma vaccines, and how they've seemed to hold so much promise, but just aren't working, and BOOM, there's a news story about lymphoma vaccines. It's a good one, too.
The American Society of Clininal Oncology (ASCO) is in the middle of their annual conference right now (see all the summaries/abstracts for the lymphoma-related research here), and one of the big success stories has been the presentation on the vaccine for follicular NHL. It was part of a mainstream, Associated Press news story on cancer vaccines.
Apparently, the fNHL vaccine is working. The ASCO presentation looked at 117 fNHL patients who had been in remission after chemo. The research showed that the group that didn't take the vaccine had an average of 30 months before the NHL returned. Those who had the vaccine took 44 months.
Now, an extra 14 months might not seem like a big deal, but given the results of previous vaccine studies, this is major, major good news. As the news story points out, "That's huge in this field, where progress is glacial and success with a new treatment is often measured in weeks or even days."
So, this vaccine isn't The Answer -- not yet. Again, from the news story: "It's way too soon to declare victory. No one knows how long the benefits will last, whether people will need "boosters" to keep their disease in check, or whether vaccines will ever be a cure. Many vaccines must be custom-made for each patient. How practical will that be, and what will it cost?"
But it seems like a major step on the way to making this particular treatment work. Think about what I wrote about last time, with other researchers seeming to have found out why vaccines aren't working. Imagine, in a few years, taking something that already works well, and improving it even more.
Pretty rare that follicular NHL makes it into a news story. I'm glad it was good news.