The NCCN recently published an updated Guidelines for Patients with Follicular Lymphoma. It's written for patients, and it's worth a look, especially if you're new to all of this.
The NCCN is the National Comprehensive Cancer Network. It's made up of a bunch of cancer research hospitals. Every year, they publish a different guide for oncologists for how to treat various types of cancer. So, for FL, it will break down what to do if a patient is at a certain stage and grade, and is showing certain symptoms. And if things change, or they had treatment and didn't respond, it will give advice on what to do next. It's based on the most up-to-date research, and for an oncologist who isn't a specialist, it can be very helpful, since they're trying to keep up on research for how to treat a whole bunch of different types of cancer. (It's also a good reason to get a second opinion from a specialist -- the general guidelines will probably be fine for most patients, but a specialist might have some different ideas for an individual patient.)
The guide linked above, though, is meant for patients, specifically. It discusses things in fairly simple language, and gives some basic information about the disease, how patients are diagnosed and staged, what treatments are available, and what certain medical terms mean.
I think it could be very helpful for a newly diagnosed patient. At the same time, I think it could be pretty overwhelming for a newly diagnosed patient. So maybe it's also good for a caregiver to read -- someone who has a little bit of distance from the disease. (Just a little.) For patients who were diagnosed a while ago, it could also be helpful to read. There's probably a few things you didn't know in there, and it might help you think about next steps.
One thing it can't do, though, is truly understand what it means to be a patient. It is helpful in many way, by providing easy-to-understand medical information. And it is patient-focused, reminding patients that they have a role in their care and treatment.
But I also recommend talking to other patients. Support groups, even online support groups, are great, and I've certainly talked about my own experiences with them. As helpful as it is to understand all of the medical issues, it's also important not to ignore the emotional issues that come with Follicular Lymphoma. The NCCN Patient guide doesn't address that -- and it's not meant to. But it's worth reminding you all to take care of the mental and emotional parts of this disease, to.
Enjoy the reading.
Friday, August 30, 2019
Monday, August 26, 2019
Cancer, Clothes, and Change
When you see two articles, on the same topic, in the same day, it must be a sign that you need to think and write about that topic. Right?
This morning, Blood-Cancer.com re-ran an old article by a blood cancer patient named Daniel Malito called "Cancer & Clothes." I write for Blood-Cancer.com about once a month, and I read pretty much everything they publish. I especially like Daniel's work. He's funny and honest.
In this piece, Daniel writes about how his body has changed, and how none of his clothes fit him after treatment. And, on top of everything else, now he has to spend money on new clothes.
Yesterday, I saw a different piece in the new York Times called "The Emperor of All Maladies' New Clothes." It's written by a cancer survivor named Susan Gubar, who also happens to be a famous literary scholar. She wrote a book about her experience with ovarian cancer called Memoir of a Debulked Woman. (I haven't read that one, and I probably won't. My mom died of ovarian cancer 5 years ago. Funny how I can read anything about my own cancer, but not about some others....).
I like the title of Gubar's piece. We all know the story of The Emperor's New Clothes, which she combines with the book Emperor of All Maladies, Siddartha Mukherjee's great book about the history of cancer and its treatments.
Gubar also talks about how her body has changed, and the effects it has had on her clothing choices. She talks about some clothing that has been designed for patients with ports, or ostomies, small changes to clothes that make it a little easier to deal with necessary things.
With two articles that deal with the same thing, arriving at my computer within a few hours of each other, it's gotten me thinking about the whole issue.
Things do change for us. I mean physically. Mentally and emotionally is a whole other story.
But things do change for us physically. Maybe it's the cancer itself. Maybe it's the treatments. Maybe it's the medicine to help us deal with the side effects o the treatments. But things change. I like to hold out hope that, maybe it's change that we can be happy about. But I also know that's usually not the case.
And, in general, clothing does one of two things -- it helps hide parts of us, or show parts of us. Conceal or reveal. And maybe our attitude about our cancer, and the changes it brings, is revealed in our clothing.
Long sleeves and high necks and head scarfs can hide our scars. I know plenty of people who do that. But short sleeves and v-necks, and "lymphoma warrior" shirts and "Fuck Cancer" hats can reveal things that people might not otherwise be able to see.
I've never been one to put a bumper sticker on my car, or a cancer slogan on my body. I've always been fairly private. Which might sound funny, given how much I write about my experience with cancer. And, come to think of it, how little it bothers me now to strip down in front of a doctor or nurse -- I think I've been seen naked by well over a hundred health professionals in the last 11+ years.
But it took a long time to strip of my clothes -- my actual clothes, but also the clothes I use to conceal who I am in other ways. Apart from the blog, which rarely used my full name, it's only been a few years that I've signed my name to things I have written.
Our clothes can be literal -- cotton and leather and polyester. Or they can be figurative -- the ways we act and the things we do that conceal and reveal our cancer. But ultimately it's our own, individual choice to let people know who we are and what we've been through. I would never tell another cancer patient how to act. We must all make those choice for ourselves.
For me, it's been a long way coming. But taking off my clothes -- sharing my story, using my name -- has been a good thing. I'm glad I made that choice. And I hope you're happy with whatever choices you make, too.
This morning, Blood-Cancer.com re-ran an old article by a blood cancer patient named Daniel Malito called "Cancer & Clothes." I write for Blood-Cancer.com about once a month, and I read pretty much everything they publish. I especially like Daniel's work. He's funny and honest.
In this piece, Daniel writes about how his body has changed, and how none of his clothes fit him after treatment. And, on top of everything else, now he has to spend money on new clothes.
Yesterday, I saw a different piece in the new York Times called "The Emperor of All Maladies' New Clothes." It's written by a cancer survivor named Susan Gubar, who also happens to be a famous literary scholar. She wrote a book about her experience with ovarian cancer called Memoir of a Debulked Woman. (I haven't read that one, and I probably won't. My mom died of ovarian cancer 5 years ago. Funny how I can read anything about my own cancer, but not about some others....).
I like the title of Gubar's piece. We all know the story of The Emperor's New Clothes, which she combines with the book Emperor of All Maladies, Siddartha Mukherjee's great book about the history of cancer and its treatments.
Gubar also talks about how her body has changed, and the effects it has had on her clothing choices. She talks about some clothing that has been designed for patients with ports, or ostomies, small changes to clothes that make it a little easier to deal with necessary things.
With two articles that deal with the same thing, arriving at my computer within a few hours of each other, it's gotten me thinking about the whole issue.
Things do change for us. I mean physically. Mentally and emotionally is a whole other story.
But things do change for us physically. Maybe it's the cancer itself. Maybe it's the treatments. Maybe it's the medicine to help us deal with the side effects o the treatments. But things change. I like to hold out hope that, maybe it's change that we can be happy about. But I also know that's usually not the case.
And, in general, clothing does one of two things -- it helps hide parts of us, or show parts of us. Conceal or reveal. And maybe our attitude about our cancer, and the changes it brings, is revealed in our clothing.
Long sleeves and high necks and head scarfs can hide our scars. I know plenty of people who do that. But short sleeves and v-necks, and "lymphoma warrior" shirts and "Fuck Cancer" hats can reveal things that people might not otherwise be able to see.
I've never been one to put a bumper sticker on my car, or a cancer slogan on my body. I've always been fairly private. Which might sound funny, given how much I write about my experience with cancer. And, come to think of it, how little it bothers me now to strip down in front of a doctor or nurse -- I think I've been seen naked by well over a hundred health professionals in the last 11+ years.
But it took a long time to strip of my clothes -- my actual clothes, but also the clothes I use to conceal who I am in other ways. Apart from the blog, which rarely used my full name, it's only been a few years that I've signed my name to things I have written.
Our clothes can be literal -- cotton and leather and polyester. Or they can be figurative -- the ways we act and the things we do that conceal and reveal our cancer. But ultimately it's our own, individual choice to let people know who we are and what we've been through. I would never tell another cancer patient how to act. We must all make those choice for ourselves.
For me, it's been a long way coming. But taking off my clothes -- sharing my story, using my name -- has been a good thing. I'm glad I made that choice. And I hope you're happy with whatever choices you make, too.
Wednesday, August 21, 2019
Updated CAR-T Research
The latest issue of the journal Blood has some updated research on CAR-T in Follicular Lymphoma. The article is called "High rate of durable complete remission in follicular lymphoma after CD19 CAR-T cell immunotherapy."
The article describes results f a phase 1/phase 2 clinical trial involving 21 patients with relapsed/refractory Follicular Lymphoma (13 patients) and transformed Follicular Lymphoma (8 patients). This data comes from a larger trial involving CAR-T and a bunch of different blood cancers.
Patients in the trial were first given a chemo combination -- Cyclophosphamide (the C in CHOP) and Fludarabin. This was done for lymphodepletion -- cutting down on the immune cells in the body. Then they were given the CAR-T (immune cells that had been removed from the patients and changed so they would recognize and destroy cancer cells).
The results were strong -- 88% of the R/R FL patients had a complete response, and all of them remained in remission after a median follow-up of 24 months. For the transformed FL patients, 46% had a complete response, which lasted a median of over 10 months. As fr side effects, 50% of the R/R FL patients had both Cytokine Release Syndrome and nerve issues, while 39% of the transformed patients had CRS and 23% had nerve issues.
The link above only provides an abstract, not the full article, but a commentary about the research was also included, and can be seen for free -- "The case for CAR T-cell therapy in follicular lymphomas."
The commentary adds some interesting information. Other trials (like ZUMA-1 and JULIET) have looked at CAR-T in aggressive lymphomas, so it's hard to compare the results of this trial to them. But the splitting out of R/R FL patients and transformed FL patients is very helpful. We can see that CAR-T can be very effective for patients who continue to need treatment, but who haven't transformed to a more aggressive lymphoma like DLBCL.
The commentary also points out the the chemo given for lymphodepletion was not the same for everyone. Some of the R/R FL patients received more Cyclophosphamidethan others. Perhaps that had an effect, and it's why the R/R numbers were higher than the transformed numbers? Interestingly, the patients in the other CAR-T trials also had differing lymphodepletion amounts. In the JULIET trial, some patients had none at all, and their CR rate was only 29%.
Looking at the title of the commentary, "The case for CAR T-cell therapy in follicular lymphomas," it's easy to see why the author is optimistic. Not every trial results in huge steps forwad, but even s,all steps are important. And maybe something like paying more attention to lymphodepletion strategies will result in a big step.
In the meantime, we can share the author's optimism that CAR-T might seems to have a god and lasting effect for many patients who are R/R, but who aren't transformed. And at some point, maybe we'll see CAR-T available as a first-line treatment as well.
No one is suggesting miracles just yet, but "promise" is a pretty hopeful word.
The commentary adds some interesting information. Other trials (like ZUMA-1 and JULIET) have looked at CAR-T in aggressive lymphomas, so it's hard to compare the results of this trial to them. But the splitting out of R/R FL patients and transformed FL patients is very helpful. We can see that CAR-T can be very effective for patients who continue to need treatment, but who haven't transformed to a more aggressive lymphoma like DLBCL.
The commentary also points out the the chemo given for lymphodepletion was not the same for everyone. Some of the R/R FL patients received more Cyclophosphamidethan others. Perhaps that had an effect, and it's why the R/R numbers were higher than the transformed numbers? Interestingly, the patients in the other CAR-T trials also had differing lymphodepletion amounts. In the JULIET trial, some patients had none at all, and their CR rate was only 29%.
Looking at the title of the commentary, "The case for CAR T-cell therapy in follicular lymphomas," it's easy to see why the author is optimistic. Not every trial results in huge steps forwad, but even s,all steps are important. And maybe something like paying more attention to lymphodepletion strategies will result in a big step.
In the meantime, we can share the author's optimism that CAR-T might seems to have a god and lasting effect for many patients who are R/R, but who aren't transformed. And at some point, maybe we'll see CAR-T available as a first-line treatment as well.
No one is suggesting miracles just yet, but "promise" is a pretty hopeful word.
Friday, August 16, 2019
The Fear
The Fear never really goes away. I was diagnosed with Follicular Lymphoma almost 12 years ago. I haven't needed treatment in almost 10 years. But The Fear is still there.
This may take a little while to explain. Bear with me.
Last fall, our gas heating company tore up our street to put in new gas lines. Then they tore up our front lawn to put in new lines from the street to our house. Then they left a note saying they needed to tear up a wall in the house to connect our gas service. I didn't call the number because I didn't want my wall torn up.
That was a few months ago, and last week they finally came to the house to say the work needed to be done. Yesterday, two very nice young men looked at the job and said they could do the work without needing to tear up the wall. They finished in a couple of hours, and then their boss came by to check the work and make sure the heating system worked fine.
Last night, I woke up at about 3:00am, covered in sweat.
My guess is that any Follicular Lymphoma patient reading that line just felt their blood go cold.
And of course, mine did, too.
I got out of bed, toweled myself off, and turned up the air conditioning a little bit. Then I did a quick review in my head of the "B symptoms" -- chills, fever, unexplained weight loss, lymph nodes popping up, to go along with what were potentially night sweats, and that could possibly be a sign of transformation. I've had none of them. I manged to get back to sleep, and I remained seat-free for the rest of the night.
This morning, as I sat at the kitchen table, and my foot rested against the baseboard heater. And it was very warm.
Apparently, when the gas guy came to "check the system," he turned on the heat, nice and high, and didn't bother to tell me, or to turn it back down. Our air conditioning is on a different system, so that kept us from realizing it.
So that explains the night sweats, and it should explain why they went away when I turned up the air conditioning.
At least I think that explains it.
Now, everything seems a little more horrible at 3:00am, so it's easy to panic at that time.
But it's also a reminder that The Fear never goes away. It sucks.
And to help calm your own fears, I was hoping to link to a site that did a good job of explaining B symptoms. I can't find one. Every one I saw was a kind of clinical, straightforward description. "Night sweats" doesn't really do it. "Drenching night sweats that make you have to change your sheets" is more accurate. Don't confuse a warm room or hot flashes with a drenching night sweat. Don't let my experience put The Fear into your head and make you see B symptoms where they don't exist.
The Fear is always there. But that doesn't mean we need to let it control us.
This may take a little while to explain. Bear with me.
Last fall, our gas heating company tore up our street to put in new gas lines. Then they tore up our front lawn to put in new lines from the street to our house. Then they left a note saying they needed to tear up a wall in the house to connect our gas service. I didn't call the number because I didn't want my wall torn up.
That was a few months ago, and last week they finally came to the house to say the work needed to be done. Yesterday, two very nice young men looked at the job and said they could do the work without needing to tear up the wall. They finished in a couple of hours, and then their boss came by to check the work and make sure the heating system worked fine.
Last night, I woke up at about 3:00am, covered in sweat.
My guess is that any Follicular Lymphoma patient reading that line just felt their blood go cold.
And of course, mine did, too.
I got out of bed, toweled myself off, and turned up the air conditioning a little bit. Then I did a quick review in my head of the "B symptoms" -- chills, fever, unexplained weight loss, lymph nodes popping up, to go along with what were potentially night sweats, and that could possibly be a sign of transformation. I've had none of them. I manged to get back to sleep, and I remained seat-free for the rest of the night.
This morning, as I sat at the kitchen table, and my foot rested against the baseboard heater. And it was very warm.
Apparently, when the gas guy came to "check the system," he turned on the heat, nice and high, and didn't bother to tell me, or to turn it back down. Our air conditioning is on a different system, so that kept us from realizing it.
So that explains the night sweats, and it should explain why they went away when I turned up the air conditioning.
At least I think that explains it.
Now, everything seems a little more horrible at 3:00am, so it's easy to panic at that time.
But it's also a reminder that The Fear never goes away. It sucks.
And to help calm your own fears, I was hoping to link to a site that did a good job of explaining B symptoms. I can't find one. Every one I saw was a kind of clinical, straightforward description. "Night sweats" doesn't really do it. "Drenching night sweats that make you have to change your sheets" is more accurate. Don't confuse a warm room or hot flashes with a drenching night sweat. Don't let my experience put The Fear into your head and make you see B symptoms where they don't exist.
The Fear is always there. But that doesn't mean we need to let it control us.
Monday, August 12, 2019
The Benefits of Maintenance (Again)
More research on Maintenance therapy for Follicular Lymphoma.
If I had to guess, I'd say there has been more research on Maintenance in the last 5 years than any other subject related to Follicular Lymphoma. That should tell you how important it is, but also how controversial it is -- if the questions about Maintenance had been settled years ago, we wouldn't have more and more research on it all the time.
For those who need a reminder (or a lesson): Maintenance is the term for extending treatments after an initial successful treatment. The goal is to extend the success. So a patient might have the chemotherapy combination Bendmustine + Rituxan, and do very well with it, and then get more Rituxan every 2 months for another 2 years. Rituxan is less aggressive than traditional chemotherapy, so the side effects usually aren't as harsh (though they certainly exist), but can also "clean up" any cancer cells that remain, or that pop up after treatment.
Maintenance is controversial because its benefits are limited (more on that below), but can also be expensive (treatment goes on for two more years, and someone has to pay for it), and can cause some side effects. Some oncologists like it, and others don't.
The most recent research probably won't change anyone's mind.
"Sustained Progression-Free Survival Benefit of Rituximab Maintenance in Patients With Follicular Lymphoma: Long-Term Results of the PRIMA Study" was published a few weeks ago in the Journal of Clinical Oncology.
The research comes out of the PRIMA rial, which has been around for a very long time (I first wrote about it in in 2011). That's a very good thing -- we can see long-term results of the patients in the study, and that's what this article provides.
The study looked at 1018 patients with Follicular Lymphoma who received one of three immunochemotherapy treatments (R-CHOP, R-CVP, or R-B). For those who had a response, they were then assigned to either receive Maintenance, or to observe and be treated again when necessary. The big results for this article had to do with Progression-Free Survival -- how long it took for the disease to come back or get worse. The patients who had Maintenance had a much longer PFS than those who just observed -- 10.5 years versus 4.1 years. In that way, the Maintenance did its job, extending the time before patients likely needed treatment again.
However, the study also measured Overall Survival -- how long the patients lived. By that measure, Maintenance was not successful. Both groups had a 10 year OS of 80%.
So Maintenance might keep the disease in check longer, but statistically, it won't keep you alive longer than doing nothing after a successful first treatment. Maintenance patients also had a higher incidence of side effects (which makes sense, since they're getting longer treatment).
And that's really what the controversy comes down to -- what are the patient's goals? I'm guessing that no patient would disagree that the big goal is to stay alive as long as possible, so this doesn't really do much for us.
But apart from that, what's the goal? Is it to hold off on chemo for as long as possible? And is the patient willing to spend more money, put up with more possible side effects, and go to the hospital for treatment every two months? If so, then maybe Maintenance is a good choice. If those factors aren't an issue, then maybe not. Maybe treatment every two months, or the higher cost, or the side effects would lower Quality of Life, and the better choice for some patients is to hold off on Maintenance and hope that the initial treatment lasts a good long time, and the next treatment gives a longer remission.
So, no easy answers. That seems to be the way it is with pretty much every question that Follicualr Lymphoma patients face.
But the good news is that we do have options. Not all cancer patients do. So it's important that we keep ourselves educated, and we keep make sure we have doctors who will listen to what we want, and answer our questions. That's the only way all of these great options we have actually become good choices.
If I had to guess, I'd say there has been more research on Maintenance in the last 5 years than any other subject related to Follicular Lymphoma. That should tell you how important it is, but also how controversial it is -- if the questions about Maintenance had been settled years ago, we wouldn't have more and more research on it all the time.
For those who need a reminder (or a lesson): Maintenance is the term for extending treatments after an initial successful treatment. The goal is to extend the success. So a patient might have the chemotherapy combination Bendmustine + Rituxan, and do very well with it, and then get more Rituxan every 2 months for another 2 years. Rituxan is less aggressive than traditional chemotherapy, so the side effects usually aren't as harsh (though they certainly exist), but can also "clean up" any cancer cells that remain, or that pop up after treatment.
Maintenance is controversial because its benefits are limited (more on that below), but can also be expensive (treatment goes on for two more years, and someone has to pay for it), and can cause some side effects. Some oncologists like it, and others don't.
The most recent research probably won't change anyone's mind.
"Sustained Progression-Free Survival Benefit of Rituximab Maintenance in Patients With Follicular Lymphoma: Long-Term Results of the PRIMA Study" was published a few weeks ago in the Journal of Clinical Oncology.
The research comes out of the PRIMA rial, which has been around for a very long time (I first wrote about it in in 2011). That's a very good thing -- we can see long-term results of the patients in the study, and that's what this article provides.
The study looked at 1018 patients with Follicular Lymphoma who received one of three immunochemotherapy treatments (R-CHOP, R-CVP, or R-B). For those who had a response, they were then assigned to either receive Maintenance, or to observe and be treated again when necessary. The big results for this article had to do with Progression-Free Survival -- how long it took for the disease to come back or get worse. The patients who had Maintenance had a much longer PFS than those who just observed -- 10.5 years versus 4.1 years. In that way, the Maintenance did its job, extending the time before patients likely needed treatment again.
However, the study also measured Overall Survival -- how long the patients lived. By that measure, Maintenance was not successful. Both groups had a 10 year OS of 80%.
So Maintenance might keep the disease in check longer, but statistically, it won't keep you alive longer than doing nothing after a successful first treatment. Maintenance patients also had a higher incidence of side effects (which makes sense, since they're getting longer treatment).
And that's really what the controversy comes down to -- what are the patient's goals? I'm guessing that no patient would disagree that the big goal is to stay alive as long as possible, so this doesn't really do much for us.
But apart from that, what's the goal? Is it to hold off on chemo for as long as possible? And is the patient willing to spend more money, put up with more possible side effects, and go to the hospital for treatment every two months? If so, then maybe Maintenance is a good choice. If those factors aren't an issue, then maybe not. Maybe treatment every two months, or the higher cost, or the side effects would lower Quality of Life, and the better choice for some patients is to hold off on Maintenance and hope that the initial treatment lasts a good long time, and the next treatment gives a longer remission.
So, no easy answers. That seems to be the way it is with pretty much every question that Follicualr Lymphoma patients face.
But the good news is that we do have options. Not all cancer patients do. So it's important that we keep ourselves educated, and we keep make sure we have doctors who will listen to what we want, and answer our questions. That's the only way all of these great options we have actually become good choices.
Thursday, August 8, 2019
Quality of Life Petition
I linked to this petition a few months ago, and I'm going to link again and encourage you all to sign it, and share it with others. It's important for empowering cancer patients like us.
The petition was created by the people at Lymphomation.org, a site that I link to a lot. It's a citizen's petition to the FDA, which is in charge of clinical trials. The petition is called "Assessing Changes to the Patient's Quality of Life (QoL) is Integral to Interpreting the Efficacy of Study Treatments for Cancer."
The idea behind the petition is to encourage the FDA to require that Quality of Life becomes an official part of determining whether or not a treatment should be approved, and more importantly, to have a record for doctors and patients of how a treatment affects Q of L.
Right now, when a treatment is approved, the FDA basically looks at two things: first, is the treatment effective? What percentage of patients in the trial were cured, or had a good progression-free-survival, or reached a certain overall survival? (The researchers figure out before the trial how they will decide what "effective" means, and how it compares with treatments that are already available.) Second, what is the toxicity? What are the side effects? Are these worse than the side effects for treatments that are already available?
Both of those things can be measured by doctors/researchers.
But Quality of Life cannot. Q of L includes things like fatigue, nausea, anxiety, and pain (as the petition points out). They affect they way you live your life day-to-day. Are you in so much pain, or so anxious, that you can't enjoy the things you used to do, like cooking or gardening or playing with your grandkids? That's what Quality if Life is all about. It isn't included in the toxicity or side effects that researchers can measure -- it can only be reported by the patient.
So by signing the petition, you'll help encourage the FDA to give a voice to patients.
I don't need to explain why that matters.
So please consider signing (and sharing). You're only helping yourself. Thanks.
The petition was created by the people at Lymphomation.org, a site that I link to a lot. It's a citizen's petition to the FDA, which is in charge of clinical trials. The petition is called "Assessing Changes to the Patient's Quality of Life (QoL) is Integral to Interpreting the Efficacy of Study Treatments for Cancer."
The idea behind the petition is to encourage the FDA to require that Quality of Life becomes an official part of determining whether or not a treatment should be approved, and more importantly, to have a record for doctors and patients of how a treatment affects Q of L.
Right now, when a treatment is approved, the FDA basically looks at two things: first, is the treatment effective? What percentage of patients in the trial were cured, or had a good progression-free-survival, or reached a certain overall survival? (The researchers figure out before the trial how they will decide what "effective" means, and how it compares with treatments that are already available.) Second, what is the toxicity? What are the side effects? Are these worse than the side effects for treatments that are already available?
Both of those things can be measured by doctors/researchers.
But Quality of Life cannot. Q of L includes things like fatigue, nausea, anxiety, and pain (as the petition points out). They affect they way you live your life day-to-day. Are you in so much pain, or so anxious, that you can't enjoy the things you used to do, like cooking or gardening or playing with your grandkids? That's what Quality if Life is all about. It isn't included in the toxicity or side effects that researchers can measure -- it can only be reported by the patient.
So by signing the petition, you'll help encourage the FDA to give a voice to patients.
I don't need to explain why that matters.
So please consider signing (and sharing). You're only helping yourself. Thanks.
Sunday, August 4, 2019
Dogs and Cancer
I've been away for about a week. I don't know if any of you are from the Upper Penninsula in Michigan, or have visited there, but it's beautiful. I had kind of an unplanned internet diet -- we stayed in a pretty remote area, with very spotty access and no wireless. But it was worth it to capture some moments like this sunset near the Mackinac Bridge:
And I had some time for fun reading. I brought the book Secret Service Dogs with me. I have a family member who works for the Secret Service, and I love dogs, so it was a nice clearance rack choice for me.
The problem was, it made me miss my own dog, Strudel, and it got me thinking about dogs all week. I actually used to have Strudel be a guest blogger every now and then, long ago. Strudel is 12 years old now, and it seems like we're at the vet with her once a month these days. Nothing life threatening -- just getting older, and little things are affecting her more than they used to. It's very much the same for me and my wife -- we're just at an age where parts of us don't work as well as they used to. It's kind of cute to see both my wife and my dog take their eye drops together every night, for the same condition.
And when I as finally able to check my email and various messages, I had a few links related to dogs and cancer. Like this one about how dogs are playing a big role in researching some cancer treatments. And another one about a cancer that is found only in dogs, and that can be passed from one dog to another -- very unusual for a cancer. It has survived for 4000 years, and might teach researchers some other lessons about cancer.
Just a coincidence, I guess, that I get stories about dogs and cancer at a time when I've been missing my own dog so much. But that got me thinking about the other ways that dogs can be helpful to us as cancer patients. Dogs can be trained to sniff out cancer, for example, and the first cancer-sniffing dog was named George, a Standard Schnauzer like my dog Strudel.
[That's not George, the cancer-sniffing dog. It's my Strudel, the very much not a cancer-sniffing dog.]
And dogs provide great comfort to many cancer patients in lots of ways. They are supposed to lower blood pressure, for example, and can be rained to help people who are dealing with lots of side effects from treatment.
Dogs are awesome.
If you have one, you already know that. You can make your dog's day extra special on August 10, which is Spoil Your Dog Day, or August 26, which is National Dog Day. (If you're looking for an excuse...)
Anyway, it's nice to be back, and I'm happy to be blogging again. And I'm happy to get a chance to think about dogs -- my own and others -- and the good things they can do for us.
I hope you all have the chance to get some comfort, from a dog or from someone or something else. Back to all that cancer research soon.
And I had some time for fun reading. I brought the book Secret Service Dogs with me. I have a family member who works for the Secret Service, and I love dogs, so it was a nice clearance rack choice for me.
The problem was, it made me miss my own dog, Strudel, and it got me thinking about dogs all week. I actually used to have Strudel be a guest blogger every now and then, long ago. Strudel is 12 years old now, and it seems like we're at the vet with her once a month these days. Nothing life threatening -- just getting older, and little things are affecting her more than they used to. It's very much the same for me and my wife -- we're just at an age where parts of us don't work as well as they used to. It's kind of cute to see both my wife and my dog take their eye drops together every night, for the same condition.
And when I as finally able to check my email and various messages, I had a few links related to dogs and cancer. Like this one about how dogs are playing a big role in researching some cancer treatments. And another one about a cancer that is found only in dogs, and that can be passed from one dog to another -- very unusual for a cancer. It has survived for 4000 years, and might teach researchers some other lessons about cancer.
Just a coincidence, I guess, that I get stories about dogs and cancer at a time when I've been missing my own dog so much. But that got me thinking about the other ways that dogs can be helpful to us as cancer patients. Dogs can be trained to sniff out cancer, for example, and the first cancer-sniffing dog was named George, a Standard Schnauzer like my dog Strudel.
[That's not George, the cancer-sniffing dog. It's my Strudel, the very much not a cancer-sniffing dog.]
And dogs provide great comfort to many cancer patients in lots of ways. They are supposed to lower blood pressure, for example, and can be rained to help people who are dealing with lots of side effects from treatment.
Dogs are awesome.
If you have one, you already know that. You can make your dog's day extra special on August 10, which is Spoil Your Dog Day, or August 26, which is National Dog Day. (If you're looking for an excuse...)
Anyway, it's nice to be back, and I'm happy to be blogging again. And I'm happy to get a chance to think about dogs -- my own and others -- and the good things they can do for us.
I hope you all have the chance to get some comfort, from a dog or from someone or something else. Back to all that cancer research soon.
Thursday, August 1, 2019
Frontline Therapy in Follicular Lymphoma
OncLive is doing another one of their excellent video series. This one is called "Frontline Therapy in Follicular Lymphoma."
The video series features two Follicular Lymphoma experts -- Dr. Alexey Danilov of the Oregon Health & Science University and Dr. Carla Casulo of the University of Rochester Wilmot Cancer Institute.
As the title says, their focus is on frontline treatments -- the first treatment that and FL patient receives. For many years, patients received some kind of chemotherapy. There are lots of other options now, including straight Rituxan, which is the treatment I had. There are some other non-chemo options, too.
The videos look at some of the recent research that evaluates those options. The GALLIUM study discussed in a couple of the videos. The GALLIUM study looked at chemo + Rituxan, and compared it to chemo + Obinituzumab, which is similar to Rituxan (they both target the same CD20 protein), but different (it's made form humans, not mice). Obinituzumab had a better Progression Free Survival. Interestingly, neither of the experts thought the study would change their practice. In other words, they're still more likely to use Rituxan, not Obinutuzumab, for most patients.
Dr. Danilov and Dr. Casulo also discuss the general issues that have to be considered when a patient needs to start treatment. There are more options now than in the past, which makes the decision harder, in some ways. As the GALLIUM videos show, there are lots of factors to consider, more than just which one seems to have the best numbers.
The lesson, as always, is to have an open conversation with your doctor, to make sure your goals for treatment are understood. No treatment is the "best" treatment. The best one is the one that's right for you.
The video series features two Follicular Lymphoma experts -- Dr. Alexey Danilov of the Oregon Health & Science University and Dr. Carla Casulo of the University of Rochester Wilmot Cancer Institute.
As the title says, their focus is on frontline treatments -- the first treatment that and FL patient receives. For many years, patients received some kind of chemotherapy. There are lots of other options now, including straight Rituxan, which is the treatment I had. There are some other non-chemo options, too.
The videos look at some of the recent research that evaluates those options. The GALLIUM study discussed in a couple of the videos. The GALLIUM study looked at chemo + Rituxan, and compared it to chemo + Obinituzumab, which is similar to Rituxan (they both target the same CD20 protein), but different (it's made form humans, not mice). Obinituzumab had a better Progression Free Survival. Interestingly, neither of the experts thought the study would change their practice. In other words, they're still more likely to use Rituxan, not Obinutuzumab, for most patients.
Dr. Danilov and Dr. Casulo also discuss the general issues that have to be considered when a patient needs to start treatment. There are more options now than in the past, which makes the decision harder, in some ways. As the GALLIUM videos show, there are lots of factors to consider, more than just which one seems to have the best numbers.
The lesson, as always, is to have an open conversation with your doctor, to make sure your goals for treatment are understood. No treatment is the "best" treatment. The best one is the one that's right for you.
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