Patients Against Lymphoma (the organization behind Lymphomation.com) posted this video to their Facebook feed today.
It's from MedCram, which creates videos aimed at Medical students (the narrator of the video refers to exams a lot -- not sure I like med students watching videos to "cram".....).
This is part 1 of a two part series; it focuses on NHL, mostly laying out the different types, with part 2 focusing on Hodgkin's.
It's a good introduction to NHL, aimed at future medical professionals. But a few things bothered me.
First off, I'm not crazy about the division of NHL in low-grade, intermediate-grade, and high-grade lymphomas. Calling them "grades," first of all, is confusing, since each type of NHL has its own grading. My understanding is that the NHL community has been moving away from these terms, preferring "indolent" and "aggressive." I can see where three categories is better than two -- DLBCL and Burkitt's are very different lymphomas, and probably shouldn't be lumped together under "aggressive." A guide from the Leukemia and Lymphoma Society just cuts out "intermediate" completely, and calls them "'indolent' or 'low grade'," and "'aggressive' or 'high grade'."
My point is, this is potentially confusing to patients. If this is intended for future medical doctors, it would be nice to have some consistency in terminology. Makes it easier for everyone to understand.
Another, similar issue: Follicular Large Cell Lymphoma is listed as an Intermediate Grade Lymphoma. Honestly, I've never heard this term before. And, in fact, the World Health Organization classification from 2011 (its most recent) does not recognize this as a separate type of NHL. As far as I can tell, the narrator is using this term to describe transformed Follicular Lymphoma, but he never uses that term (or discusses transformation at all, which seems like it should be kind of a big deal).
Again, maybe we should have different names for the different ways Follicular Lymphoma presents itself. But for now, we don't. It just creates confusion. Maybe this is why we have problems communicating with our doctors sometimes?
Which brings me to the part that bothers me most. It's a throw-away comment the narrator makes, so quick you might miss it if you aren't listening carefully. He describes the two types of B cell lymphomas as being from follicles (like Follicular Lymphoma) or as diffuse (like DLBCL). Follicle lymphomas a "good"; diffuse are "not good." He uses this term again to describes "less proliferative" (good) and "more proliferative" (bad) types of NHL. Low-grade/indolent = good.
I have a problem with this. I've heard lots of patients who are told, sometimes by doctors and sometimes by patients, that they got "the good kind of lymphoma." What makes it good? This is entirely a matter of perspective. Aggressive lymphomas are not "the good kind," since they need to be treated immediately, unlike some indolent lymphomas. On the other hand, most aggressive lymphomas are, under some circumstances, curable, unlike most indolent lymphomas. I'd say that makes aggressive lymphomas "good." I'd say there's nothing good about knowing that, even when Rituxan or Bendamustine has knocked back my Follicular Lymphoma, it's probably coming back at some point. Not good.
I refer you to the very funny (if you like cancer humor) subplot from Curb Your Enthusiasm when Larry tries to figure out if Hodgkin's or Non-Hodgkin's is "the good kind." When a sitcom explains this better than a medical exam preparer, I think we have a problem.
All of that said, I think the video did do a good job of explaining some basic stuff about NHL -- cleaved cells, maturity of cells, etc. But there are some details that matter, especially when those details affect the way a doctor communicates with a patient about her disease.
The really big lesson is, if you're in medical school, and you have exams coming up, and you have to cram for an exam on lymphoma, and a video is your only option, then please, please find a video made by a lymphoma expert, not someone described as "Board certified in Internal Medicine, Pulmonary, Critical Care, and Sleep Medicine." You owe us, your future patients, at least that much.
Tuesday, November 5, 2013
Sunday, November 3, 2013
Make-A-Wish
Saw this and thought it was pretty awesome:
The Greater Bay Area Make-A-Wish Foundation, which, of course, grants wishes to sick kids, is helping a 5-year-old Leukemia patient fulfill his wish to be Batman.
Their website lists the schedule for his special day, November 15, and the city of San Francisco is pitching in to help. The actual Chief of Police will be calling for his help in the morning. He will rescue a woman in trouble, battle the Puzzler, get a call at lunch to catch a bank robber, and more. The day ends with the mayor giving Batkid the key to the city to thank him for his help.
The website also lists the times and ways that people in the San Francisco area can take part in the fun, being part of the crowd that calls for help, or clapping when the mayor hands him his key.
It sounds like a great day, and a great reminder that very small gestures can sometimes have a big impact.
The Greater Bay Area Make-A-Wish Foundation, which, of course, grants wishes to sick kids, is helping a 5-year-old Leukemia patient fulfill his wish to be Batman.
Their website lists the schedule for his special day, November 15, and the city of San Francisco is pitching in to help. The actual Chief of Police will be calling for his help in the morning. He will rescue a woman in trouble, battle the Puzzler, get a call at lunch to catch a bank robber, and more. The day ends with the mayor giving Batkid the key to the city to thank him for his help.
The website also lists the times and ways that people in the San Francisco area can take part in the fun, being part of the crowd that calls for help, or clapping when the mayor hands him his key.
It sounds like a great day, and a great reminder that very small gestures can sometimes have a big impact.
Wednesday, October 30, 2013
Dr. Oz
Dr. Oz, TV personality and cardiothoracic surgeon, had a couple of special guests yesterday -- talk show host Montel Williams, and his daughter Maressa Williams. Unfortunately, Manessa was recently diagnosed with Hodgkin's Lymphoma. She's 24 years old.
Montel and Maressa decided this would be an excellent opportunity to educate people -- especially young women, who are seeing a rise in Hodgkin's Lymphoma diagnoses. "Know your body" is Maressa's excellent advice. She will be blogging about her experience, hoping to educate others about the disease.
And I applaud her for that. As we close out a month dedicated to raising breast cancer awareness, it's nice to remember that the color of our shoelaces and the frosting on our cupcakes doesn't raise awareness nearly as much as the stories that patients tell. I admire anyone who goes forward with their disease like this.
I wish I could say the same about Dr. Oz.
His brief explanation of Hodgkin's Lymphoma is not good -- misleading and misinforming.
He uses some serious hyperbole to explain stage 4: "They [the lymph nodes] get so large that you become one big lymph node, basically." Seriously?
He presents staging as a series of downward-traveling node swellings: Stage 1, the nodes in the neck swell. Stage 2, it travels to the chest. Stage 3, to the spleen. Stage 4, the groin.
Yeah....not quite. Lymphomas, including Hodgkin's, can start anywhere, and staging is not quite so "subway-ish," to use his comparison. Here's the Mayo Clinic's more accurate description:
But he's also a doctor, and his first responsibility is to present accurate information to people who turn to him for information.
I'm sending all good thoughts to Maressa and her family. I hope things go easily and well for her, and I look forward to reading about her experiences.
Montel and Maressa decided this would be an excellent opportunity to educate people -- especially young women, who are seeing a rise in Hodgkin's Lymphoma diagnoses. "Know your body" is Maressa's excellent advice. She will be blogging about her experience, hoping to educate others about the disease.
And I applaud her for that. As we close out a month dedicated to raising breast cancer awareness, it's nice to remember that the color of our shoelaces and the frosting on our cupcakes doesn't raise awareness nearly as much as the stories that patients tell. I admire anyone who goes forward with their disease like this.
I wish I could say the same about Dr. Oz.
His brief explanation of Hodgkin's Lymphoma is not good -- misleading and misinforming.
He uses some serious hyperbole to explain stage 4: "They [the lymph nodes] get so large that you become one big lymph node, basically." Seriously?
He presents staging as a series of downward-traveling node swellings: Stage 1, the nodes in the neck swell. Stage 2, it travels to the chest. Stage 3, to the spleen. Stage 4, the groin.
Yeah....not quite. Lymphomas, including Hodgkin's, can start anywhere, and staging is not quite so "subway-ish," to use his comparison. Here's the Mayo Clinic's more accurate description:
- Stage I. The cancer is limited to one lymph node region or a single organ.
- Stage II. In this stage, the cancer is in two different lymph nodes or the cancer is in a portion of tissue or an organ and nearby lymph nodes. But the cancer is still limited to a section of the body either above or below the diaphragm.
- Stage III. When the cancer moves to lymph nodes both above and below the diaphragm, it's considered stage III. Cancer may also be in one portion of tissue or an organ near the lymph node groups or in the spleen.
- Stage IV. This is the most advanced stage of Hodgkin's lymphoma. Cancer cells are in several portions of one or more organs and tissues. Stage IV Hodgkin's lymphoma affects not only the lymph nodes but also other parts of your body, such as the liver, lungs or bones.
But he's also a doctor, and his first responsibility is to present accurate information to people who turn to him for information.
I'm sending all good thoughts to Maressa and her family. I hope things go easily and well for her, and I look forward to reading about her experiences.
Tuesday, October 29, 2013
Jon Lester
There's at least one more game, and possibly two games, before the World Series is over, and I'm in no way celebrating anything, but I have to say once more a thank you to Red Sox pitcher Jon Lester. He was diagnosed with anaplastic large cell lymphoma, an aggressive type of NHL, when he was a rookie in 2006. He was treated and cured, and came back the next season to pitch well.
In January 2008, I was diagnosed with Follicular Lymphoma, and while that's a very different type of NHL than Lester's, it was close enough to remind my son, 10 years old at the time, that people can come back from lymphoma and do great things. Lester was our model for hope. A few months later, when Lester pitched a no-hitter, there was more cause for celebration in our house than usual, and I'm glad I woke my son up and brought him down to see the 9th inning. He and I got to see the cleats that Lester wore for that game when we visited the Hall of Fame this summer.
He pitched brilliantly last night, and there's lots of talk that he might be traded this winter. So if that was his last time pitching in a Red Sox uniform, that makes me a little sad. But he's given me some great memories, and he will always hold a special place in my heart..
Also, I am a little jealous that he got a hug from David Ortiz last night. Papi is high on my "man crush" list....
In January 2008, I was diagnosed with Follicular Lymphoma, and while that's a very different type of NHL than Lester's, it was close enough to remind my son, 10 years old at the time, that people can come back from lymphoma and do great things. Lester was our model for hope. A few months later, when Lester pitched a no-hitter, there was more cause for celebration in our house than usual, and I'm glad I woke my son up and brought him down to see the 9th inning. He and I got to see the cleats that Lester wore for that game when we visited the Hall of Fame this summer.
He pitched brilliantly last night, and there's lots of talk that he might be traded this winter. So if that was his last time pitching in a Red Sox uniform, that makes me a little sad. But he's given me some great memories, and he will always hold a special place in my heart..
Also, I am a little jealous that he got a hug from David Ortiz last night. Papi is high on my "man crush" list....
Sunday, October 27, 2013
Indolent Lymphomas: An Interview & a Lesson
Targeted Oncology has an interview with Dr. Andrew Zelenetz, a lymphoma specialist at Sloan-Kettering in New York.
It's a short interview on indolent lymphomas (including Follicular Lymphoma), mostly reviewing the general issues associated with indolent NHL (the first question is about the differences between indolent and aggressive lymphomas). There are one or two kind of new of interesting things in there -- it's main point doesn't seem to be to introduce new stuff.
I think, though, that the interview is especially useful as a reminder that we need to read carefully -- very carefully -- or we will drive ourselves crazy.
A had a conversation with a friend recently about another mutual friend with cancer. My friend had gone online, and was feeling very down about our mutual friend's prognosis. The conversation brought me down a little. I had to remind myself of the excellent advice that Dr. C, the lymphoma specialist that I saw soon after I was diagnosed, had given me: "Everything that you read online is already out of date." I won't get specifically into what my friend had found online, but I think it could easily fall into the category of "might very well be out of date." At the very least, he was probably misinterpreting what he had read.
The quest for knowledge can be a dangerous thing sometimes. We have to remember to read past that first entry in the Google results list.
As for the interview, this is what I mean:
Dr. Zelenetz, asked about transformation, says, "In Follicular Lymphoma, about 40 to 50% of patients will undergo transformation in 15 to 18 years."
I think that's kind of a daunting statistic. Chances are 50/50 that you'll transform -- that would be my first, panicky thought.
But it's not really that simple. For one thing, there's still lots of uncertainty over just how often transformation takes place. More recent studies (like, from a few weeks ago) suggest that the percentage might be a whole lot lower. Plus, while Dr. Zelenetz offers some depressing survival statistics, those might be out of date, too. And we won't get into the genetic-level research being done that's trying to find some kind of marker for transformation being more or less likely. But who, reading this, will go straight for the worst news?
Asked about prognosis, he says, "There are Follicular Lymphoma patients will die of their disease 2 years after diagnosis, and patients who have never received treatment 25 years after diagnosis." Unfortunately true.
One good thing thjat comes out of this: Zelenetz says that the median survival for Follicular Lymphoma patients is 12 to 16 years. Woo hoo! Lots of places online give the old, pre-Rituxan figures of 8 to 10 years. So that's one inconsistency in our favor. But even that doesn't take into account some other studies that say a 40 year old FL patient might have a median survival rate of 20+ years.
You can see for yourself what he has to say about treatment options and about Rituxan maintenance. With these, too, he leaves out a lot.
Now, I'm not saying he doesn't know what he's talking about. Far from it. You don't get to Sloan-Kettering without knowing a little something about your specialty.
But the format of this interview doesn't allow for more than the most basic information in answering a question.
There's so much out there to read. And we too often read at a time when our emotions are running high. The lesson is, slow yourself down, find a trusted source of information (like a support group), ask your doctor when you have questions, and try like heck not to panic.
It's a short interview on indolent lymphomas (including Follicular Lymphoma), mostly reviewing the general issues associated with indolent NHL (the first question is about the differences between indolent and aggressive lymphomas). There are one or two kind of new of interesting things in there -- it's main point doesn't seem to be to introduce new stuff.
I think, though, that the interview is especially useful as a reminder that we need to read carefully -- very carefully -- or we will drive ourselves crazy.
A had a conversation with a friend recently about another mutual friend with cancer. My friend had gone online, and was feeling very down about our mutual friend's prognosis. The conversation brought me down a little. I had to remind myself of the excellent advice that Dr. C, the lymphoma specialist that I saw soon after I was diagnosed, had given me: "Everything that you read online is already out of date." I won't get specifically into what my friend had found online, but I think it could easily fall into the category of "might very well be out of date." At the very least, he was probably misinterpreting what he had read.
The quest for knowledge can be a dangerous thing sometimes. We have to remember to read past that first entry in the Google results list.
As for the interview, this is what I mean:
Dr. Zelenetz, asked about transformation, says, "In Follicular Lymphoma, about 40 to 50% of patients will undergo transformation in 15 to 18 years."
I think that's kind of a daunting statistic. Chances are 50/50 that you'll transform -- that would be my first, panicky thought.
But it's not really that simple. For one thing, there's still lots of uncertainty over just how often transformation takes place. More recent studies (like, from a few weeks ago) suggest that the percentage might be a whole lot lower. Plus, while Dr. Zelenetz offers some depressing survival statistics, those might be out of date, too. And we won't get into the genetic-level research being done that's trying to find some kind of marker for transformation being more or less likely. But who, reading this, will go straight for the worst news?
Asked about prognosis, he says, "There are Follicular Lymphoma patients will die of their disease 2 years after diagnosis, and patients who have never received treatment 25 years after diagnosis." Unfortunately true.
There
are FL patients who will die of their disease 2 years after diagnosis,
and patients who have never received a treatment 25 years after
diagnosis. - See more at:
http://www.targetedonc.com/publications/special-reports/2013/b-cell-issue1/Q-A-Zelenetz-Addressing-the-Challenges-of-Indolent-Non-Hodgkin-Lymphoma#sthash.l4aLJrKQ.dpuf
In
FL, about 40% to 50% of patients will undergo transformation within 15
to 18 years, - See more at:
http://www.targetedonc.com/publications/special-reports/2013/b-cell-issue1/Q-A-Zelenetz-Addressing-the-Challenges-of-Indolent-Non-Hodgkin-Lymphoma#sthash.l4aLJrKQ.dpuf
Indolent
lymphoma can progress or "transform" to aggressive lymphoma. In FL,
about 40% to 50% of patients will undergo transformation within 15 to 18
years - See more at:
http://www.targetedonc.com/publications/special-reports/2013/b-cell-issue1/Q-A-Zelenetz-Addressing-the-Challenges-of-Indolent-Non-Hodgkin-Lymphoma#sthash.l4aLJrKQ.dpuf
But, again, if the article gets seen by a newly diagnosed patient, which of those numbers will they focus on?One good thing thjat comes out of this: Zelenetz says that the median survival for Follicular Lymphoma patients is 12 to 16 years. Woo hoo! Lots of places online give the old, pre-Rituxan figures of 8 to 10 years. So that's one inconsistency in our favor. But even that doesn't take into account some other studies that say a 40 year old FL patient might have a median survival rate of 20+ years.
You can see for yourself what he has to say about treatment options and about Rituxan maintenance. With these, too, he leaves out a lot.
Now, I'm not saying he doesn't know what he's talking about. Far from it. You don't get to Sloan-Kettering without knowing a little something about your specialty.
But the format of this interview doesn't allow for more than the most basic information in answering a question.
There's so much out there to read. And we too often read at a time when our emotions are running high. The lesson is, slow yourself down, find a trusted source of information (like a support group), ask your doctor when you have questions, and try like heck not to panic.
Friday, October 25, 2013
Revlimid, Rituxan, and Follicular Lymphoma
About to be published in the journal Cancer (as straightforward a journal title as you're ever going to find): "Combined Lenalidomide, Low-Dose Dexamethasone, and Rituximab Achieves Durable Responses in Rituximab-Resistant Indolent and Mantle Cell Lymphomas."
Come to think of it, that article title is pretty straightforward, too: R + R (Rituxan + Revlimid,also known as Lenalidomide, plus a little something extra, helps Follicular Lymphoma patients (and others) who are no longer helped by Rituxan.
It's a pretty small study (phase 2, with 24 patients, when all was said and done), but an important one.
Revlimid/Lenalidomide is a pretty cool treatment. It works in a few different ways, mostly by messing with the processes that cancer cells seem to need in order to survive, inhibiting new blood vessels from growing, and changing the immune system in favorable ways that researchers haven't fully figured out yet (but it works, so who cares). It seems like, when combined with Rituxan, it could boost Rituxan's effects, especially for patients who have grown resistant to Rituxan (which, unfortunately, does happen).
This study looked at 24 patients, including 18 with Follicular Lymphoma. There were two parts to the study: in part 1, patients were give Revlimid plus a small dose of dexamethasone, a steroid. In part 2, they were given those again, plus some Rituxan.
After part 1, there was about a 29% response rate (either a complete or partial response). But in part 2, when the Rituxan was added, the response was 58%, with 8 of the patients achieving a complete response. As for follow up, the median progression-free survival was just under 2 years. Pretty dang good for patients who were told that Rituxan wasn't going to work for them any more.
The big takeaway is just that -- Revlimid might help resistant patients use Rituxan again.
While there are already a bunch of other fairly low-toxicity treatments other than Rituxan, and a bunch more in development, there's some comfort in knowing that Rituxan works, and so it's good to find a way to have it keep on working. (Plus, there has so far not been much to come down the pipeline that has been a major improvement on Rituxan. I'm biased, of course, given that Rituxan is among my closest friends....)
Nice to see a small pick up in Follicular Lymphoma-related studies in the news in the last few days. I hope there are more to come soon.
Come to think of it, that article title is pretty straightforward, too: R + R (Rituxan + Revlimid,also known as Lenalidomide, plus a little something extra, helps Follicular Lymphoma patients (and others) who are no longer helped by Rituxan.
It's a pretty small study (phase 2, with 24 patients, when all was said and done), but an important one.
Revlimid/Lenalidomide is a pretty cool treatment. It works in a few different ways, mostly by messing with the processes that cancer cells seem to need in order to survive, inhibiting new blood vessels from growing, and changing the immune system in favorable ways that researchers haven't fully figured out yet (but it works, so who cares). It seems like, when combined with Rituxan, it could boost Rituxan's effects, especially for patients who have grown resistant to Rituxan (which, unfortunately, does happen).
This study looked at 24 patients, including 18 with Follicular Lymphoma. There were two parts to the study: in part 1, patients were give Revlimid plus a small dose of dexamethasone, a steroid. In part 2, they were given those again, plus some Rituxan.
After part 1, there was about a 29% response rate (either a complete or partial response). But in part 2, when the Rituxan was added, the response was 58%, with 8 of the patients achieving a complete response. As for follow up, the median progression-free survival was just under 2 years. Pretty dang good for patients who were told that Rituxan wasn't going to work for them any more.
The big takeaway is just that -- Revlimid might help resistant patients use Rituxan again.
While there are already a bunch of other fairly low-toxicity treatments other than Rituxan, and a bunch more in development, there's some comfort in knowing that Rituxan works, and so it's good to find a way to have it keep on working. (Plus, there has so far not been much to come down the pipeline that has been a major improvement on Rituxan. I'm biased, of course, given that Rituxan is among my closest friends....)
Nice to see a small pick up in Follicular Lymphoma-related studies in the news in the last few days. I hope there are more to come soon.
Tuesday, October 22, 2013
Transformed Follicular Lymphoma: Some Good News
Busy as heck lately, with work and (especially) my active children. That's in no way a complaint -- stepping back, I'm happy to be healthy enough to be run ragged. But it sure does cut into my time to read, write, and generally be a cancer nerd.
************************
That said, here's a quickie.
And, trust me, it's a good one.
Article from the British Journal of Haematology from about a month ago: "Transformed Non-Hodgkin Lymphoma in the Rituximab Era: Analysis of the NCCN Outcomes Database."
First of, the NCCN is the National Comprehensive Cancer Network is a group of 23 major cancer research centers (Dana Farber in Boston, Sloan-Kettering in New York, MD Anderson in Houston, Fred Hutchinson in Seattle -- that level of awesomeness), and their Outcomes Database is a large collection of information about treatments and outcomes of patients from those 23 cancer centers. It's been around for about 16 years, and has collected a ton of data that gets analyzed to help decide what is working and what isn't.
Researchers analyzed the data from patients with indolent NHL (like, of course, Follicular Lymphoma) who transformed to a more aggressive lymphoma. they looked at 118 patients and tried to figure out who fared best. Some results:
For all 118 patients, the two year survival rate was 68%.
Patients under 60 who received an auto-SCT (an autologous stem cell transplant), the two year survival rate was 74%.
Patients who didn't receive chemotherapy before transforming had excellent outcomes: all of them hit the two year survival target.
I don't have numbers in front of me to compare, but the outcomes seem much better than I normally read about transformation. In fact, the authors conclude, "In this largest prospective cohort of patients of strictly defined HT in the rituximab era, the natural history of HT appears more favourable than historical studies."
In other words, maybe the picture is brighter for transformed follicular lymphoma than what it has been in the past. That's great news.
I've only seen the very shortened abstract version of this study, not the full article, which I am sure contains more nuggets. Perhaps I'll get a chance to take a look at it sometime soon......
************************
That said, here's a quickie.
And, trust me, it's a good one.
Article from the British Journal of Haematology from about a month ago: "Transformed Non-Hodgkin Lymphoma in the Rituximab Era: Analysis of the NCCN Outcomes Database."
First of, the NCCN is the National Comprehensive Cancer Network is a group of 23 major cancer research centers (Dana Farber in Boston, Sloan-Kettering in New York, MD Anderson in Houston, Fred Hutchinson in Seattle -- that level of awesomeness), and their Outcomes Database is a large collection of information about treatments and outcomes of patients from those 23 cancer centers. It's been around for about 16 years, and has collected a ton of data that gets analyzed to help decide what is working and what isn't.
Researchers analyzed the data from patients with indolent NHL (like, of course, Follicular Lymphoma) who transformed to a more aggressive lymphoma. they looked at 118 patients and tried to figure out who fared best. Some results:
For all 118 patients, the two year survival rate was 68%.
Patients under 60 who received an auto-SCT (an autologous stem cell transplant), the two year survival rate was 74%.
Patients who didn't receive chemotherapy before transforming had excellent outcomes: all of them hit the two year survival target.
I don't have numbers in front of me to compare, but the outcomes seem much better than I normally read about transformation. In fact, the authors conclude, "In this largest prospective cohort of patients of strictly defined HT in the rituximab era, the natural history of HT appears more favourable than historical studies."
In other words, maybe the picture is brighter for transformed follicular lymphoma than what it has been in the past. That's great news.
I've only seen the very shortened abstract version of this study, not the full article, which I am sure contains more nuggets. Perhaps I'll get a chance to take a look at it sometime soon......
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