Today is my 18 month treatment-aversary. It was 18 months ago today that I received my first Rituxan treatment.
I think this is worth celebrating. When I went in for the Rituxan, I did a rough estimate of how people in the support group had reacted to the treatment. Some got no response from it at all. Others went a good long while on it. I figured that if Rituxan bought me a year, I would call it a success -- a year seemed to be about the average that people in the support group reported. I learned later on that the median duration of response is 10-12 months, so my guess was pretty good.
Now that I'm at 18 months? That's pretty gosh darn good, I'd say.
Of course, I haven't looked into it deeply enough to know if the median duration of response means 12 months until the lymphoma shows up again, or 12 months until treatment is needed again; I'm assuming the latter. The lymphoma may very well have shown up again by now, and it just isn't affecting me yet. I won't know that for sure until I get my next scan sometime next month. But all indications so far are that I'm still rolling along pretty well.
I tried to write a love poem to Rituxan, to show my appreciation, but I only finished two verses, and then I couldn't rhyme anything with "Antibody-dependent Cell-mediated Cytotoxicity," and then the verses about side effects were just weird, so I stopped. But I'm sure what I did write gives you a pretty good sense of my feelings for Rituxan.
Ode to Rituxan
You might be called, generically,
that sweet rituximab.
If that's the case,
I say to your face,
I still think that you're fab.
You might be called, internationally,
The so lovely MabThera.
Well, what the hell,
As long as to B cells
You remain a terror.
It matters not what I call you
As long as you do your work,
By apoptosis, [And then I had to stop here]
Anyway, learn more abouit Rituxan at the Patients Against Lymphoma web site (http://www.lymphomation.org/rituxan.htm). Really, anything you'd want to know about this amazing treatment.
Friday, July 15, 2011
Tuesday, July 12, 2011
Be Nice to Doctors?
Last week, the Wall Street Journal's Health blog puboished a brief piece called "Do Nice Patients Finish First?", discussing a commentary from a medical journal that looked at whether or not "nice" patients get better care from their doctors.
A fascinating topic, one that brought up some discussion in the support group. Some people talked about going out of their way to be nice to everyone -- receptionists, nurses, doctors -- everyone that they encountered in the office. Someone else pointed out being "nice" should never get in the way of getting the treatment you need, or getting your questions answered. Someone else brought up that she brought treats for the office staff every now and then (something I confess that I did when I went in for a Rituxan treatment).
The comments attached to the article (see the tab at the top) were equally interesting: One says that being too nice sometimes means being ignored, because energy gets put into those other squeeky wheels. Another says a health environment is a jungle, and you have to be aggressive if you want proper care. Still another reminds readers that doctors are human beings with the same emotions as patients, and need a little understanding.
It's all very interesting, and I think the key to it all is to keep in mind what the authors of the original medical journal piece have to say about what it menas to be "nice":
It all depends on how you define “nice” and “better,” one of the authors, Allan Detsky, a professor in the departments of medicine and of health policy, management and evaluation at the University of Toronto. Generally patients who “communicate well, understand their problems, are able to make decisions, adhere to diagnostic and treatment plans, are pleasant and express gratitude for the services they receive” are more pleasant to treat than those who don’t, the commentary says, but the definition of niceness is still pretty subjective.
That seems like a fairly easy definition of "nice" to have to live up to. Communicate well by asking questions and listening to the answers. Understand your problems and explain them fully. Agree to a plan with the doctor, and then stick to the plan. The being pleasant part can be a little tricky -- we all have our bad days, and we express those bad days in different ways. Bt the gratitude part should be easy -- say thank you to the people who help you, even if they're just doing their jobs. In my experience, inside and outside of doctors' offices, people don't get thanked enough, and if you do slip in a sincere thank you, it will pay off later. (Maya Angelou says that people don't remember what you said or did; they remember how you made them feel. And when they see you again, those good feelings are going to come back to them.)
But the really important thing is, don't confuse "nice" with "passive." Asking questions when you don't understand, expressing your fears, asking for opinions, and even (nicely) demanding explanations is all part of your duty as a patient.You can do all that without being obnoxious. And in return, you can say thanks, express appreciation for the doctor taking extra time to talk to you, and let the doctor know when his explanations have been clear and helpful.
And, maybe, bring in some cookies for the staff break room....
A fascinating topic, one that brought up some discussion in the support group. Some people talked about going out of their way to be nice to everyone -- receptionists, nurses, doctors -- everyone that they encountered in the office. Someone else pointed out being "nice" should never get in the way of getting the treatment you need, or getting your questions answered. Someone else brought up that she brought treats for the office staff every now and then (something I confess that I did when I went in for a Rituxan treatment).
The comments attached to the article (see the tab at the top) were equally interesting: One says that being too nice sometimes means being ignored, because energy gets put into those other squeeky wheels. Another says a health environment is a jungle, and you have to be aggressive if you want proper care. Still another reminds readers that doctors are human beings with the same emotions as patients, and need a little understanding.
It's all very interesting, and I think the key to it all is to keep in mind what the authors of the original medical journal piece have to say about what it menas to be "nice":
It all depends on how you define “nice” and “better,” one of the authors, Allan Detsky, a professor in the departments of medicine and of health policy, management and evaluation at the University of Toronto. Generally patients who “communicate well, understand their problems, are able to make decisions, adhere to diagnostic and treatment plans, are pleasant and express gratitude for the services they receive” are more pleasant to treat than those who don’t, the commentary says, but the definition of niceness is still pretty subjective.
That seems like a fairly easy definition of "nice" to have to live up to. Communicate well by asking questions and listening to the answers. Understand your problems and explain them fully. Agree to a plan with the doctor, and then stick to the plan. The being pleasant part can be a little tricky -- we all have our bad days, and we express those bad days in different ways. Bt the gratitude part should be easy -- say thank you to the people who help you, even if they're just doing their jobs. In my experience, inside and outside of doctors' offices, people don't get thanked enough, and if you do slip in a sincere thank you, it will pay off later. (Maya Angelou says that people don't remember what you said or did; they remember how you made them feel. And when they see you again, those good feelings are going to come back to them.)
But the really important thing is, don't confuse "nice" with "passive." Asking questions when you don't understand, expressing your fears, asking for opinions, and even (nicely) demanding explanations is all part of your duty as a patient.You can do all that without being obnoxious. And in return, you can say thanks, express appreciation for the doctor taking extra time to talk to you, and let the doctor know when his explanations have been clear and helpful.
And, maybe, bring in some cookies for the staff break room....
Sunday, July 10, 2011
Controversies in Follicular NHL
Fascinating article in the Annals of Oncology -- a special issue devoted to work from the 11th Annual Conference on Malignant Lymphoma that took place in Switzerland about a month ago. The article is called "Controversies in Follicular Lymphomas," and discusses several controversial topics that are being debated by researchers and clinicians these days. (Follicular NHL treatment has been controversial for the last 10 years or so, from what I can tell. This is just a couple of the latest batch of controversies.)
The first controversy discussed has to do with first-line treatment: better to go with straight Rituxan, or Rituxan plus some kind of chemotherapy? (You know where I stand on this one, I'm sure.)
As for the first-line treatment controversy, the case for chemo is that chemo + Rituxan has significantly improved survival rates since Rituxan's introduction. Looking at data from studies involving chemo + R, it's clear that this treatment combo gives the best chance of a complete response. So the question becomes a matter of strategy: should we be encouraging complete responses for first-line treatments? Or is it better, given the long-term nature of fNHL, to emphasize management of the disease and be OK with partial responses or short-term complete responses?
On the other side, Rituxan by itself will not result in a cure, and in fact no treatment will (since we don't have anything that seems to be curative for most patients). But Rituxan alone will result in prolonged survival and a better quality of life (given the minimal side effects, compared to chemo). And given that a whole bunch of different chemotherapies seem to work, but none do as well without Rituxan, it seems that getting Rituxan on top of chemo is more important than getting chemo on top of Rituxan. Delaying chemo as long as possible cuts down or postpones the possibility of long-term side effects that might come from chemotherapy, and this delaying of chemo, and just going with Rituxan, does not result in a lower survival.
You know where I stand on this, having had single agent Rituxan as my first-line therapy. Quality of life is definitely as issue: all things considered, I've been pretty healthy and able to live a "normal" life for the last three and a half years. I'm OK with my decision to delay chemo.
The other controversy described in the article has to do with Rituxan maintenance, the practice of giving Rituxan at regular intervals (maybe every six months) for a couple of years after chemo. The first take on this controversy looks at Rituxan versus RadioImmunoTherapy (RIT) as a consolidation treatment (taken soon after chemo is finished). According to the article, both Rituxan maintenance and RIT (specifically Zevalin) have been shown to increase progression-free survival dramatically: over three years, compared to chemo without either follow-up. And for patients who took Zevalin and achieved a complete response, the PFS is about 5 extra years. The author leaves it up to the reader to do the math: multiple inusions of Rituxan versus a single infusion of Zevalin for the same post-chemo results.
I've long been an advocate for Zevalin (and the other RIT, Bexxar). The numbers are just too good to discount its use.
The other R-maintenance discussion in the article involves backround information: basically, studies continue to show that Rituxan taken after chemo does a great job of improving PFS. It seems to me that R-maintenance really isn't a controversy anymore. The NHL community seems to recognize its effectiveness, and it's becoming pretty standard practice.
It's nice to keep up on these controversies. Apart from the R-maintenance use, I don'ty see the other controversies going away any time soon. We're still nowhere close to agreement on a standard first-line treatment, and with the competing philosophies (manage the disease vs. wipe out the disease for as long as possible) guiding treatment decisions, I'm not sure an agreement is going to come anytime soon. As for RIT as consolidatoion, we have a log way to go there, too.
But the important thing is, those options are out there for people who need them, and are willing to educate themselves (and sometimes their doctors) about them. Better to have many choices than none at all.
The first controversy discussed has to do with first-line treatment: better to go with straight Rituxan, or Rituxan plus some kind of chemotherapy? (You know where I stand on this one, I'm sure.)
As for the first-line treatment controversy, the case for chemo is that chemo + Rituxan has significantly improved survival rates since Rituxan's introduction. Looking at data from studies involving chemo + R, it's clear that this treatment combo gives the best chance of a complete response. So the question becomes a matter of strategy: should we be encouraging complete responses for first-line treatments? Or is it better, given the long-term nature of fNHL, to emphasize management of the disease and be OK with partial responses or short-term complete responses?
On the other side, Rituxan by itself will not result in a cure, and in fact no treatment will (since we don't have anything that seems to be curative for most patients). But Rituxan alone will result in prolonged survival and a better quality of life (given the minimal side effects, compared to chemo). And given that a whole bunch of different chemotherapies seem to work, but none do as well without Rituxan, it seems that getting Rituxan on top of chemo is more important than getting chemo on top of Rituxan. Delaying chemo as long as possible cuts down or postpones the possibility of long-term side effects that might come from chemotherapy, and this delaying of chemo, and just going with Rituxan, does not result in a lower survival.
You know where I stand on this, having had single agent Rituxan as my first-line therapy. Quality of life is definitely as issue: all things considered, I've been pretty healthy and able to live a "normal" life for the last three and a half years. I'm OK with my decision to delay chemo.
The other controversy described in the article has to do with Rituxan maintenance, the practice of giving Rituxan at regular intervals (maybe every six months) for a couple of years after chemo. The first take on this controversy looks at Rituxan versus RadioImmunoTherapy (RIT) as a consolidation treatment (taken soon after chemo is finished). According to the article, both Rituxan maintenance and RIT (specifically Zevalin) have been shown to increase progression-free survival dramatically: over three years, compared to chemo without either follow-up. And for patients who took Zevalin and achieved a complete response, the PFS is about 5 extra years. The author leaves it up to the reader to do the math: multiple inusions of Rituxan versus a single infusion of Zevalin for the same post-chemo results.
I've long been an advocate for Zevalin (and the other RIT, Bexxar). The numbers are just too good to discount its use.
The other R-maintenance discussion in the article involves backround information: basically, studies continue to show that Rituxan taken after chemo does a great job of improving PFS. It seems to me that R-maintenance really isn't a controversy anymore. The NHL community seems to recognize its effectiveness, and it's becoming pretty standard practice.
It's nice to keep up on these controversies. Apart from the R-maintenance use, I don'ty see the other controversies going away any time soon. We're still nowhere close to agreement on a standard first-line treatment, and with the competing philosophies (manage the disease vs. wipe out the disease for as long as possible) guiding treatment decisions, I'm not sure an agreement is going to come anytime soon. As for RIT as consolidatoion, we have a log way to go there, too.
But the important thing is, those options are out there for people who need them, and are willing to educate themselves (and sometimes their doctors) about them. Better to have many choices than none at all.
Friday, July 8, 2011
John on Oboe
A little more kid bragging:
John has been in a band this summer through the Neighborhood Music School in New Haven. The Summer Concert Band is made up of kids between the age of 12 and 18, so John was one of the youngest. He was one of five oboe players, which was very cool -- the first time he'd had a chance to play in a band with other oboists (for the school and state bands he was in, he was the only one), and he got to learn from some older, more experienced kids. It was a very good two weeks for him.
Their concert was this morning. John's favorite piece was a medley of music from the band Journey: the ever-present "Don't Stop Believing," followed by "Separate Ways," "Open Arms," and finishing with "Any Way You Want It."
Video below, for your listening ad viewing pleasure. (Excuse the constantly shifting angles. The woman in front of me was the mother of the kid to John's right, and her view was blocked by the conductor, so she kept leaning one way and then the other to get a view, so I had to keep dodging her head.)
Anyway, we're very proud of our boy.
John has been in a band this summer through the Neighborhood Music School in New Haven. The Summer Concert Band is made up of kids between the age of 12 and 18, so John was one of the youngest. He was one of five oboe players, which was very cool -- the first time he'd had a chance to play in a band with other oboists (for the school and state bands he was in, he was the only one), and he got to learn from some older, more experienced kids. It was a very good two weeks for him.
Their concert was this morning. John's favorite piece was a medley of music from the band Journey: the ever-present "Don't Stop Believing," followed by "Separate Ways," "Open Arms," and finishing with "Any Way You Want It."
Video below, for your listening ad viewing pleasure. (Excuse the constantly shifting angles. The woman in front of me was the mother of the kid to John's right, and her view was blocked by the conductor, so she kept leaning one way and then the other to get a view, so I had to keep dodging her head.)
Anyway, we're very proud of our boy.
Wednesday, July 6, 2011
Velcade Bummer
The most recent issue of The Lancet Oncology was given an online preview earlier this week, and one of its articles focused on a promising Follicular NHL treatment, Velcade. Unfortunately, it looks like it's not going to live up to its promise.
The article is called, "Bortezomib Plus Rituximab Versus Rituximab Alone in Patients with Relapsed, Rituximab-Naive or Rituximab-Sensitive, Follicular Lymphoma: A Randomised Phase 3 Trial." As the title implies, the study looked at patients who were given only Rituxan, and those who were given a combination of Rituxan and Velcade. Basically, the study found no real difference between the two in terms of effectiveness.
Velcade (also known as Bortezomib) is one of those treatments that Dr. R has mentioned to me recently. It's a really interesting treatment, one that I've written about before. It works by, basically, keeping cancer cells from taking out the garbage. All cells create waste, and they have a mechanism that lets them expell that waste. Velcade blocks that mechanism, so the cancer cells kill themselves the way the people on those weird hoarding shows do, with piles of garbage in their houses that eventually crush them. It's a really cool mechanism for killing cancer cells.
What this study did was randomize about 700 fNHL patients: roughly half were given Rituxan, and the other half were give Rituxan + Velcade. They found that Progression-Free Survival (or PFS -- how long the cancer was kept away) was 11 months for the straight Rituxan group, and just under 13 months for the Velcade group. That's a little bit of an improvement, obviously, but not enough to set off any leftover fireworks. (The reseachers had anticipated about a 33% improvement in PFS, which would have been roughly 16 months. That in itself seems like kind of a low bar, but so it goes with improvements in cancer treatments. There are few improvements that really blow anybody away and add months or years to existing treatments' PFS.)
The conclusion to all of this? "The regimen might represent a useful addition to the armamentarium, particularly for some subgroups of patients." Translation: "Yeah, sure, it's one more thing to try for some people, but it's not the Big Answer we were looking for."
So, in the end, sucky news. But Velcade is still a good treatment for there another type of NHL, Mantle Cell Lymphoma, which is great. And the study did provide some good news: it helped us understand that this wasn't what we were looking for, and lets us focus on something else.
Gotta look at the bright side....
The article is called, "Bortezomib Plus Rituximab Versus Rituximab Alone in Patients with Relapsed, Rituximab-Naive or Rituximab-Sensitive, Follicular Lymphoma: A Randomised Phase 3 Trial." As the title implies, the study looked at patients who were given only Rituxan, and those who were given a combination of Rituxan and Velcade. Basically, the study found no real difference between the two in terms of effectiveness.
Velcade (also known as Bortezomib) is one of those treatments that Dr. R has mentioned to me recently. It's a really interesting treatment, one that I've written about before. It works by, basically, keeping cancer cells from taking out the garbage. All cells create waste, and they have a mechanism that lets them expell that waste. Velcade blocks that mechanism, so the cancer cells kill themselves the way the people on those weird hoarding shows do, with piles of garbage in their houses that eventually crush them. It's a really cool mechanism for killing cancer cells.
What this study did was randomize about 700 fNHL patients: roughly half were given Rituxan, and the other half were give Rituxan + Velcade. They found that Progression-Free Survival (or PFS -- how long the cancer was kept away) was 11 months for the straight Rituxan group, and just under 13 months for the Velcade group. That's a little bit of an improvement, obviously, but not enough to set off any leftover fireworks. (The reseachers had anticipated about a 33% improvement in PFS, which would have been roughly 16 months. That in itself seems like kind of a low bar, but so it goes with improvements in cancer treatments. There are few improvements that really blow anybody away and add months or years to existing treatments' PFS.)
The conclusion to all of this? "The regimen might represent a useful addition to the armamentarium, particularly for some subgroups of patients." Translation: "Yeah, sure, it's one more thing to try for some people, but it's not the Big Answer we were looking for."
So, in the end, sucky news. But Velcade is still a good treatment for there another type of NHL, Mantle Cell Lymphoma, which is great. And the study did provide some good news: it helped us understand that this wasn't what we were looking for, and lets us focus on something else.
Gotta look at the bright side....
Monday, July 4, 2011
Happy 4th
I have to follow up Canada Day with America Day. (We do it right in this country -- we don't celebrate our independence by inviting the people we broke off from.)
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(Today's Cow and Boy strip, by the way.)
Not much to report today, other than to thank my family for the nice 4th of July visit. Especially my brother for his outstanding ribs. I will reward him with a donation to his Pan Mass Challenge next month. You may do the same -- not because he shared those delicious ribs with you, but because you know it's a great cause.
Coming up this week: more cancer stuff, less national pride stuff. See you then.
Not much to report today, other than to thank my family for the nice 4th of July visit. Especially my brother for his outstanding ribs. I will reward him with a donation to his Pan Mass Challenge next month. You may do the same -- not because he shared those delicious ribs with you, but because you know it's a great cause.
Coming up this week: more cancer stuff, less national pride stuff. See you then.
Friday, July 1, 2011
Happy Canada Day!
My peeps are from the Great White North, and I think I missed acknowledging Canada Day on the blog last year, so I couldn't let that happen again.
In honor of the day, I'm going to give a quick Nodes of Gold entry, something I haven't done in a while. In fact, it's been so long that I probably need to remind you of what Nodes of Gold is: it's my series of tributes to the rich and famous who have overcome lymphoma. I'm talking Big Names: Mr. T. Artie Johnson. Gene Wilder. Golfer Paul Azinger. Hocket star Mario Lemieux.
I'm going to add another hockey star to the Nodes of Gold roster: John Cullen.
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In honor of the day, I'm going to give a quick Nodes of Gold entry, something I haven't done in a while. In fact, it's been so long that I probably need to remind you of what Nodes of Gold is: it's my series of tributes to the rich and famous who have overcome lymphoma. I'm talking Big Names: Mr. T. Artie Johnson. Gene Wilder. Golfer Paul Azinger. Hocket star Mario Lemieux.
I'm going to add another hockey star to the Nodes of Gold roster: John Cullen.
Cullen was born in Ontario, Canada (hence the whole Canada Day tribute) and played for 12 seasons in the NHL. Before that, he was a standout at Boston University (clearly, he was destined for greatness), and graduated as BU's all-time scoring leader. He was a teammate of fellow Nodes-of-Golder Lemieux in Pittsburgh (don't know how that Hodgkin's/Non-Hodgkin's rivalry went over, but I assume the two of them got along OK). He spent a few years up this way with the Hartford Whalers, too. He made two All-Star teams. He missed one season due to his lymphoma, but came back the next year, and was awarded the Bill Masterson Trophy for dedication, perseverance and sportsmanship.
"Sportsmanship" indeed -- here's a video of him getting a couple of decent shots in during a fight while the other guy headbutts him. No cheapshots from a BU Terrier, I'll tell you that. Just straight haymakers, like you're supposed to.
So, congratulations, John Cullen -- fellow BU grad, fellow lymphoma survivor, and NHL All-Star -- you've got Nodes of Gold!
Happy Canada Day, everyone. Dip into some poutine to celebrate.
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