Wednesday, April 30, 2014
Compassion
My first follow-up visit with the shoulder surgeon came about nine days after surgery. It was much, much too early for him to be able to tell anything about how the tendon was doing. Mostly, it was a chance for him to see how surgical wounds were healing.
It was a great visit, and not just because I was still double-dosing the Oxycodone he prescribed. When he removed the dressing, it was the first chance I got to see the "entry wounds" from the surgery. It was remarkable -- three tiny holes were all that was left from the arthroscopic surgery that repaired the "mess" that used to be my rotator cuff. I'm still amazed by it.
Removing the dressing also meant I didn't have to wrap my shoulder in plastic when I showered. (Showering, with my wife's assistance, was like a Three Stooges episode. Messy, but we laughed at the end.) That was great, too.
But the best part of that visit with the surgeon was when he took off the dressing. It was taped on pretty good, and his face was just inches from mine as he peeled it all away, very slowly. I was watching him. I flinched a little, and he winced. "Sorry," he said quietly. He winced and apologized two more times before he had it all off.
That, to me, if the sign of a good doctor. He feels my pain.
It made me think of my second appointment with Dr. R -- the one where he did the Bone Marrow Biopsy. As I've said before, Bone Marrow Biopsies are about as fun they sound. I'll skip the details. I know lots of people have a hard time with them. Mine wasn't as bad as some that I've heard of -- the local anesthetic helped. But I don't remember the pain of it as much as I remember Dr. R, and how he, too, was apologetic, and careful, and compassionate. He's fairly young, and I remember thinking I was glad about that, that maybe he was still young enough to not be too cynical and jaded.
I was reminded of both of these things when I read a short piece in the Journal of Clinical Oncology by Dr. Benjamin Corn called "Acquisition of Compassion Among Physicians: Why Is This Rite Different From All Other Rites?" (If the title brings up an echo of a key line from a Passover Seder, that's deliberate, as you will see if you read the piece -- and I recommend that you do.)
Dr. Corn tells the story of how he learned compassion. It came from experiencing a doctor's lack of compassion, and, in response to this, his older brother's own act of compassion. He's writing about the importance of training doctors to be compassionate, and thinks that their own personal experiences are a good place to start, thinking about their "initial exposure to kindheartedness—or possibly, their first collision with callousness—and then begin to do the emotional work that is
required to determine how those encounters left their mark."
I don't know whose job it is to teach a doctor to be compassionate. Or to re-teach it. I think it's probably easy for a medical professional to get jaded, to harden her heart a little. Working in a health system to sometimes treats people as less than people will probably do that to you. And for oncologists, who deal with dire circumstances so often, I have to think that putting up some kind of wall is necessary to just get through the day sometimes.
I had the fortune and misfortune recently to see some hospice workers in action -- nurses and volunteers. It was misfortunate because it meant I had to visit someone who was in hospice care. But it was fortunate because I got to see some examples of true, amazing compassion, of being with someone to try to share their burden.
When I first read Dr. Corn's article, it made me think about the importance of compassion for our doctors. But maybe it's even more important to see it in ourselves.
Every now and then, I'll see an article or a blog post about the good things that come from having cancer. I think as I get farther along this journey, and I have more and more distance from my initial diagnosis, I'm less apt to say, "There's really no good that comes from having cancer," and more apt to look for the good things.
And maybe one of those good things is that we as cancer patients can see others hurting, and understand where they are just a little more. Not just physical hurting, because that's only part of being a cancer patient. But emotional and mental and spiritual healing, too.
In a world that seems increasingly less compassionate, and more interested in looking at a screen than looking into someone else's eyes, maybe our own compassion can be an example for others.
Monday, April 28, 2014
Bendamustine for Follicular Lymphoma
This month's Medical Oncology journal offers a review article on Bendamustine (aka Treanda) as a possible first-line treatment for Non-Hodgkin's Lymphoma. To be clear: it isn't offering any new research about Bendamustine. Instead, it discusses some of the recent research to argue that it might be time to consider Bendamustine as first choice.
Right now, in the U.S., the FDA has approved Bendamustine as a second-line treatment for indolent lynphomas (including Follicular Lymphoma), used within six months of treatment with Rituxan (or a combination involving Rituxan) if the disease has progressed. It gets used in ways other than that, but the authors of this article think we should make that official.
(If the link above doesn't take you to the article, try this one, the journal's home page, and scroll down to the link "Bendamustine-based therapy as first-line treatment for non-Hodgkin lymphoma.")
The article looks at studies of Bendamustine as it is used for patients with indolent lymphomas (including Follicular Lymphoma), Mantle Cell Lymphoma, and aggressive lymphomas (including DLBCL). The indolent lymphomas are the ones that matter most to me (and probably you, if you're reading this).
The section on indolent lymphomas looks at a bunch of published studies, as well as some recent conference presentations. The biggies are there, including studies that compared Bendamustine and Rituxan with CHOP, and again with CHOP and CVP. Bendamustine, of course, came out on top of these studies, with greater effectiveness and, just as importantly, less toxicity.
The low toxicity (and few side effects) of Bendamustine are big part of the authors' argument. The reasons for its low toxicity are still not fully understood, and the authors recommend more long-term study of side effects, but for the most part, Bendamustine is safer than other options. It is more cost-effective than COP or CVP, in part because there is less need to deal with side effects.
So, again, this article doesn't present anything new. But it does suggest that it's time to consider Bendamustine as an approved first-line treatment. It's certainly used that way now, but it would be nice to make it all official.
Right now, in the U.S., the FDA has approved Bendamustine as a second-line treatment for indolent lynphomas (including Follicular Lymphoma), used within six months of treatment with Rituxan (or a combination involving Rituxan) if the disease has progressed. It gets used in ways other than that, but the authors of this article think we should make that official.
(If the link above doesn't take you to the article, try this one, the journal's home page, and scroll down to the link "Bendamustine-based therapy as first-line treatment for non-Hodgkin lymphoma.")
The article looks at studies of Bendamustine as it is used for patients with indolent lymphomas (including Follicular Lymphoma), Mantle Cell Lymphoma, and aggressive lymphomas (including DLBCL). The indolent lymphomas are the ones that matter most to me (and probably you, if you're reading this).
The section on indolent lymphomas looks at a bunch of published studies, as well as some recent conference presentations. The biggies are there, including studies that compared Bendamustine and Rituxan with CHOP, and again with CHOP and CVP. Bendamustine, of course, came out on top of these studies, with greater effectiveness and, just as importantly, less toxicity.
The low toxicity (and few side effects) of Bendamustine are big part of the authors' argument. The reasons for its low toxicity are still not fully understood, and the authors recommend more long-term study of side effects, but for the most part, Bendamustine is safer than other options. It is more cost-effective than COP or CVP, in part because there is less need to deal with side effects.
So, again, this article doesn't present anything new. But it does suggest that it's time to consider Bendamustine as an approved first-line treatment. It's certainly used that way now, but it would be nice to make it all official.
Friday, April 25, 2014
Predicting a Follicular Lymphoma Diagnosis
Fascinating research from France published in the Journal of Clinical Oncology: a genetic test might predict a Follicular Lymphoma diagnosis long before the disease shows up. (Not that any such test exists at the moment. Read on.)
Researchers from France (and I mean pretty much every lymphoma researcher in France, from the looks of the list of authors) tapped into the 520,000 people participating in a European study of cancer and nutrition and found 100 people with Follicular Lymphoma. Going back to earlier blood samples from this group, they found that there was a link between Follicular Lymphoma and a translocation of the (14;18) chromosomes.
This particular bit of information isn't new; we've known for a while that (14;18) translocation is present in Follicular Lymphoma cells. I'm not going to get too much into genetic stuff, but basically what happens is this: chromosomes play a key role in cell division and replication. They make sure that DNA (the blueprint for cells) divides properly when a cell divides. Humans have 23 pairs of chromosomes, so it's easy to number them. "Translocation" means the chromosomes have changed their location. As you can imagine, when something that supposed to help organize a cell splitting gets mixed up itself, there are problems. It's kind of like putting a drunk guy in charge of a bakery -- you're going to get some messed up cupcakes.
And that's what cancer is, really -- a bunch of messed up cupcakes.
Anyway, for Follicular Lymphoma, there is a translocation of the number 14 and number 18 chromosomes. Drunky McBaker added a half cup of salt when he should have added a half cup of sugar. Your salted caramel cupcakes end up way too sweet, and your red velvet cupcakes end up way too salty. And the baker is passed out behind the stand up mixer, so he's no help.
Back to Follicular Lymphoma: when the (14;18) translocation happens, the normal signals to the cells get mixed up, and we end up with problems. In this case, the problem is a bad one: a cell that has lost the ability to die. And that's what cancer is, in a nutshell. (Or a cupcake wrapper.)
What is significant about what this group of researchers from France have discovered is that the (14;18) translocation can be detected long before there is an official diagnosis of Follicular Lymphoma: up to 15 years before diagnosis.
That's pretty amazing.
Now, the real question is, what are the implications of this?
For us, as current patients, probably not much, at least directly. Knowing that I might have had a better shot at getting lymphoma 15 years ago doesn't do much for me now.
Will it help others in the future? Maybe. But I'm not sure, at this point, that it will. It would mostly give them something else to worry about for 15 years.
The really helpful thing it might do, though, is help researchers track changes over time that lead from the translocation to the need for a diagnosis. Maybe they can track changes in the microenvironment that cause the translocation to develop into full-blown FL. Understanding the disease's path will provide information on ways to impede that path before it gets out of hand.
In some ways, the indolent nature of Follicular Lymphoma may be a blessing, if its slow growth allows us to see a clearer picture of what's happening.
I think this is one of those research reports that is a bigger deal than it seems at the moment. It's not a "Hey, we added 2 years to Overall Survival!" report. But it's one that adds just a small piece to the big puzzle, and it might turn out later to be a very key piece.
Researchers from France (and I mean pretty much every lymphoma researcher in France, from the looks of the list of authors) tapped into the 520,000 people participating in a European study of cancer and nutrition and found 100 people with Follicular Lymphoma. Going back to earlier blood samples from this group, they found that there was a link between Follicular Lymphoma and a translocation of the (14;18) chromosomes.
This particular bit of information isn't new; we've known for a while that (14;18) translocation is present in Follicular Lymphoma cells. I'm not going to get too much into genetic stuff, but basically what happens is this: chromosomes play a key role in cell division and replication. They make sure that DNA (the blueprint for cells) divides properly when a cell divides. Humans have 23 pairs of chromosomes, so it's easy to number them. "Translocation" means the chromosomes have changed their location. As you can imagine, when something that supposed to help organize a cell splitting gets mixed up itself, there are problems. It's kind of like putting a drunk guy in charge of a bakery -- you're going to get some messed up cupcakes.
And that's what cancer is, really -- a bunch of messed up cupcakes.
Anyway, for Follicular Lymphoma, there is a translocation of the number 14 and number 18 chromosomes. Drunky McBaker added a half cup of salt when he should have added a half cup of sugar. Your salted caramel cupcakes end up way too sweet, and your red velvet cupcakes end up way too salty. And the baker is passed out behind the stand up mixer, so he's no help.
Back to Follicular Lymphoma: when the (14;18) translocation happens, the normal signals to the cells get mixed up, and we end up with problems. In this case, the problem is a bad one: a cell that has lost the ability to die. And that's what cancer is, in a nutshell. (Or a cupcake wrapper.)
What is significant about what this group of researchers from France have discovered is that the (14;18) translocation can be detected long before there is an official diagnosis of Follicular Lymphoma: up to 15 years before diagnosis.
That's pretty amazing.
Now, the real question is, what are the implications of this?
For us, as current patients, probably not much, at least directly. Knowing that I might have had a better shot at getting lymphoma 15 years ago doesn't do much for me now.
Will it help others in the future? Maybe. But I'm not sure, at this point, that it will. It would mostly give them something else to worry about for 15 years.
The really helpful thing it might do, though, is help researchers track changes over time that lead from the translocation to the need for a diagnosis. Maybe they can track changes in the microenvironment that cause the translocation to develop into full-blown FL. Understanding the disease's path will provide information on ways to impede that path before it gets out of hand.
In some ways, the indolent nature of Follicular Lymphoma may be a blessing, if its slow growth allows us to see a clearer picture of what's happening.
I think this is one of those research reports that is a bigger deal than it seems at the moment. It's not a "Hey, we added 2 years to Overall Survival!" report. But it's one that adds just a small piece to the big puzzle, and it might turn out later to be a very key piece.
Tuesday, April 22, 2014
Watch and Wait in Follicular Lymphoma....Yet Again
A couple of weeks ago, I wrote about an article from The Lancet that compared Watching and Waiting to an immediate treatment with Rituxan, and those two to Rituxan plus Rituxan Maintenance. According to the authors of the study, Rituxan Maintenance won across the board, not only in holding off the disease best, but also in measures of Quality of Life such as "Mental Adjustment to Cancer" and "Illness Coping Style."
That Quality of Life measurement is pretty important. That choice of first treatment for an advanced Follicular Lymphoma patient with no obvious symptoms is pretty important -- if there's no immediate physical need for a treatment, then being mentally ans spiritually satisfied is important. Quality of Life measures like "Mental Adjustment to Cancer" and "Illness Coping Style" have to be taken into consideration.
So R-Maintenance is the clear choice, right?
Well now, just hold your lymph nodes, partner.
A few days ago, Lymphoma Hub published a summary of an article from the European Journal of Haematology that looked at Health-Related Quality of Life in Follicular Lymphoma patients who had received treatment or who had watched and waited. The patients had received either R-CVP, R-CHOP, R-Chlorambucil (another type of chemo not commonly used in FL in the United States), radiotherapy (not sure what that consisted of) or watched and waited. The patients took two Quality of Life surveys a year apart, and their responses were compared to non-cancer patients' responses.
The survey found that those taking chemo had a lower Quality of Life than the comparison group, but the watch and waiters (and those receiving radiotherapy) had a Quality of Life in line with the comparison group (though they did report more fatigue).
So Watch and Wait won that round, right?
Really, the studies can't be compared. Chemo isn't Rituxan Maintenance.
But comapring the two studies does say something interesting about the relative nature of Quality of Life for Follicualr Lymphoma.
Call it a "grass is always greener" thing. "I might be tired, and I'm worried about when I'm going to need treatment (again), but golly, I'm doing better than that guy who had chemo."
And it all, once again, emphasizes the need to talk to your own doctor, and to really think carefully about your own mental and spiritual needs. I don't know if getting Rituxan right away is the best answer. It wasn't for me. But there are plenty of Follicular Lymphoma patients who will benefit, physically and mentally, from doing something right after being diagnosed.
There are not too many easy answers with cancer, and the messed up version of it that we are affected by has even fewer easy answers. When do I treat? What do I choose to treat with? Do I consolidate and follow up immediately with a second treatment? What do I do for a second treatment when I do need one? Do I consider a trial?
How the hell should I know?
The important thing is to make a decision that feels right now, that is approved by your oncologist as likely being effective, and don't look back on your decision.
Because the thing that affects Quality of Life the worst is regret. We have enough to worry about already.
That Quality of Life measurement is pretty important. That choice of first treatment for an advanced Follicular Lymphoma patient with no obvious symptoms is pretty important -- if there's no immediate physical need for a treatment, then being mentally ans spiritually satisfied is important. Quality of Life measures like "Mental Adjustment to Cancer" and "Illness Coping Style" have to be taken into consideration.
So R-Maintenance is the clear choice, right?
Well now, just hold your lymph nodes, partner.
A few days ago, Lymphoma Hub published a summary of an article from the European Journal of Haematology that looked at Health-Related Quality of Life in Follicular Lymphoma patients who had received treatment or who had watched and waited. The patients had received either R-CVP, R-CHOP, R-Chlorambucil (another type of chemo not commonly used in FL in the United States), radiotherapy (not sure what that consisted of) or watched and waited. The patients took two Quality of Life surveys a year apart, and their responses were compared to non-cancer patients' responses.
The survey found that those taking chemo had a lower Quality of Life than the comparison group, but the watch and waiters (and those receiving radiotherapy) had a Quality of Life in line with the comparison group (though they did report more fatigue).
So Watch and Wait won that round, right?
Really, the studies can't be compared. Chemo isn't Rituxan Maintenance.
But comapring the two studies does say something interesting about the relative nature of Quality of Life for Follicualr Lymphoma.
Call it a "grass is always greener" thing. "I might be tired, and I'm worried about when I'm going to need treatment (again), but golly, I'm doing better than that guy who had chemo."
And it all, once again, emphasizes the need to talk to your own doctor, and to really think carefully about your own mental and spiritual needs. I don't know if getting Rituxan right away is the best answer. It wasn't for me. But there are plenty of Follicular Lymphoma patients who will benefit, physically and mentally, from doing something right after being diagnosed.
There are not too many easy answers with cancer, and the messed up version of it that we are affected by has even fewer easy answers. When do I treat? What do I choose to treat with? Do I consolidate and follow up immediately with a second treatment? What do I do for a second treatment when I do need one? Do I consider a trial?
How the hell should I know?
The important thing is to make a decision that feels right now, that is approved by your oncologist as likely being effective, and don't look back on your decision.
Because the thing that affects Quality of Life the worst is regret. We have enough to worry about already.
Friday, April 18, 2014
Rituxan Maintenance in Follicular Lymphoma
It's a few weeks old, but there's some nice research from the journal Cancer on Rituxan Maintenance for Follicular Lymphoma.
The research comes from the massive (and massively important) LymphoCare Study. It compares patients who received R-Maintenance after a Rituxan + chemotherapy with patients who were only observed. The patients had received their R-Maintenance between 2004 and 2007, and there were 1186 patients in this study. (That's a lot.) The researchers were interested in measuring Progression Free Survival (PFS), Time To Next Treatment (TTNT), and Overall Survival (OS).
The results showed that Rituxan Maintenance did a better job than not doing anything in measuring PFS and TTNT, but not in improving OS. More on that in a second.
The study also has some interesting little nuggets about who was more likely to receive R-Maintenance: patients who were grade 1 or 2 (that is, less aggressive forms of FL); stage 3 or 4 (more advanced disease, affecting several regions of nodes); receive community-based care (that is, the patient goes to an oncologist in a medical building down the street, rather than in a university hospital); and lives in a region of the U.S. other than the West. The stage and grade are easy to explain: the disease is advanced enough to see, but slow moving enough to watch. The community-based might also be explainable -- a clinical oncologist has maybe seen good results, and thinks the R-Maintenance is worth it, while a research-based oncologist is more interested in statistical measures that don't fully justify it? (I'm thinking of Dr. Bruce Cheson here, and his concerns about R-Maintenance).
As for why it's used less commonly in the West, I have no idea. Maybe just a regional medical school bias or something?
One more interesting thing that the researchers point out, even as they say that this might study justify making R-Maintenance a more common practice, is the lack of agreement on whether Progression Free Survival and Time To Next Treatment are really valid measures of how good a treatment is. So while it's great that these measures keep us out of the chemo chair, the real measure (some argue) should be Overall Survival. And that's been the toughest nut to crack in treating Follicular Lymphoma.
But it's also the squishiest, since it measures survival by any means -- the patient can die because of lymphoma and its complications, or because of getting hit by a bus. It all counts. The researchers are hoping that longer follow-up (this one was for more than 5 years) will make the picture a little less cloudy.
Finally, they address some of the other concerns that people like Dr. Cheson have about long-term use of R-Maintenance -- toxicity (harmful side effects) and Rituxan Resistance (for some patients, for some reason, Rituxan just stops working after a while). Their research seems to calm some of the fears about these two issues. It will be interesting to see what the response is from the oncology community.
A lot of what comes out of this study seems to support the positive conclusions of other recent studies on Rituxan Maintenance, which would maybe tip things in favor of R-Maintenance becoming more common and more accepted. But even the researchers here acknowledge that the picture is still a little cloudy: because this study looked at how people were given R-Maintenance "in the real world, rather than a study that they controlled, there isn't any consistency in the treatment that could be truly comparable to the other studies. In other words, they didn't say to 1000 people, "Hey, we want you to do R-Maintenance for 2 years, stating two months after your R+ chemo, with one treatment every month over that time." Instead, they ;looked back at what people got when they said they did R-Maintenance, and some people got different doses, or started at different times, or went for 6 months or a year or two years. So while the study results look great in many ways, there's still more to be learned if we want to compare it to some of the other studies out there.
So what does it all mean? Well, your oncologist will know that best. If you're coming off initial treatment or haven't started yet, then a conversation about Rituxan Maintenance is worth having. In my own case, Dr. R argued against it, and I accepted his argument. He said most research dealt with R-Maintenance after chemo, and I had straight Rituxan, so there wasn't much evidence for how well it would likely work for me. Plus, he's kind of a minimalist, believing in doing only as much treatment as necessary. It's been over 4 years since my treatment, so he was right about that working, I guess.
The bottom line, as always, when thinking about treatment decisions: inform yourself and talk to your doctor, and work together to decide what's best for you.
The research comes from the massive (and massively important) LymphoCare Study. It compares patients who received R-Maintenance after a Rituxan + chemotherapy with patients who were only observed. The patients had received their R-Maintenance between 2004 and 2007, and there were 1186 patients in this study. (That's a lot.) The researchers were interested in measuring Progression Free Survival (PFS), Time To Next Treatment (TTNT), and Overall Survival (OS).
The results showed that Rituxan Maintenance did a better job than not doing anything in measuring PFS and TTNT, but not in improving OS. More on that in a second.
The study also has some interesting little nuggets about who was more likely to receive R-Maintenance: patients who were grade 1 or 2 (that is, less aggressive forms of FL); stage 3 or 4 (more advanced disease, affecting several regions of nodes); receive community-based care (that is, the patient goes to an oncologist in a medical building down the street, rather than in a university hospital); and lives in a region of the U.S. other than the West. The stage and grade are easy to explain: the disease is advanced enough to see, but slow moving enough to watch. The community-based might also be explainable -- a clinical oncologist has maybe seen good results, and thinks the R-Maintenance is worth it, while a research-based oncologist is more interested in statistical measures that don't fully justify it? (I'm thinking of Dr. Bruce Cheson here, and his concerns about R-Maintenance).
As for why it's used less commonly in the West, I have no idea. Maybe just a regional medical school bias or something?
One more interesting thing that the researchers point out, even as they say that this might study justify making R-Maintenance a more common practice, is the lack of agreement on whether Progression Free Survival and Time To Next Treatment are really valid measures of how good a treatment is. So while it's great that these measures keep us out of the chemo chair, the real measure (some argue) should be Overall Survival. And that's been the toughest nut to crack in treating Follicular Lymphoma.
But it's also the squishiest, since it measures survival by any means -- the patient can die because of lymphoma and its complications, or because of getting hit by a bus. It all counts. The researchers are hoping that longer follow-up (this one was for more than 5 years) will make the picture a little less cloudy.
Finally, they address some of the other concerns that people like Dr. Cheson have about long-term use of R-Maintenance -- toxicity (harmful side effects) and Rituxan Resistance (for some patients, for some reason, Rituxan just stops working after a while). Their research seems to calm some of the fears about these two issues. It will be interesting to see what the response is from the oncology community.
A lot of what comes out of this study seems to support the positive conclusions of other recent studies on Rituxan Maintenance, which would maybe tip things in favor of R-Maintenance becoming more common and more accepted. But even the researchers here acknowledge that the picture is still a little cloudy: because this study looked at how people were given R-Maintenance "in the real world, rather than a study that they controlled, there isn't any consistency in the treatment that could be truly comparable to the other studies. In other words, they didn't say to 1000 people, "Hey, we want you to do R-Maintenance for 2 years, stating two months after your R+ chemo, with one treatment every month over that time." Instead, they ;looked back at what people got when they said they did R-Maintenance, and some people got different doses, or started at different times, or went for 6 months or a year or two years. So while the study results look great in many ways, there's still more to be learned if we want to compare it to some of the other studies out there.
So what does it all mean? Well, your oncologist will know that best. If you're coming off initial treatment or haven't started yet, then a conversation about Rituxan Maintenance is worth having. In my own case, Dr. R argued against it, and I accepted his argument. He said most research dealt with R-Maintenance after chemo, and I had straight Rituxan, so there wasn't much evidence for how well it would likely work for me. Plus, he's kind of a minimalist, believing in doing only as much treatment as necessary. It's been over 4 years since my treatment, so he was right about that working, I guess.
The bottom line, as always, when thinking about treatment decisions: inform yourself and talk to your doctor, and work together to decide what's best for you.
Tuesday, April 15, 2014
Lymphoma Survey
The Lymphoma Coalition is once again asking Lymphoma patients (and caregivers) of all types, and from all countries, to take their survey. You can find the English version of the survey here; if you want a different language, you can change it on the English survey, or you can find some language links on the Lymphoma Coalition home page. (You can also find a bunch of other interesting items, including a section of links titled "In the Node," a very funny play on "In the Know." I love lymphoma humor.)
The Lymphoma Coalition is a group of lymphoma-related organizations, most of which are national-level groups from different countries, though there are a few others that help either smaller or larger populations (including our pals at Patients Against Lymphoma, who run Lymphomation.org). They band together for things like this -- their global survey to look at trends in the experiences of lymphoma patients around the world. The results of the survey, especially when compared to previous surveys, help the organizations focus their missions and bring help to lymphoma patients.
Their last survey took place in 2012 (you can find the results here), and they found some interesting trends:
"a) A general lack of understanding and awareness of the signs and symptoms of an increasingly complex disease on the part of both patients and healthcare professionals that can typically result in late diagnosis ;
b) Misunderstanding about clinical trials as an effective option to treatment; and
c) A quality of life being experienced by lymphoma patients that requires improvement."
So it's definitely worth taking the survey. It will cost you, at most, about 10 minutes, and the result will be possible improvements in your life as a patient.
The Lymphoma Coalition is a group of lymphoma-related organizations, most of which are national-level groups from different countries, though there are a few others that help either smaller or larger populations (including our pals at Patients Against Lymphoma, who run Lymphomation.org). They band together for things like this -- their global survey to look at trends in the experiences of lymphoma patients around the world. The results of the survey, especially when compared to previous surveys, help the organizations focus their missions and bring help to lymphoma patients.
Their last survey took place in 2012 (you can find the results here), and they found some interesting trends:
"a) A general lack of understanding and awareness of the signs and symptoms of an increasingly complex disease on the part of both patients and healthcare professionals that can typically result in late diagnosis ;
b) Misunderstanding about clinical trials as an effective option to treatment; and
c) A quality of life being experienced by lymphoma patients that requires improvement."
So it's definitely worth taking the survey. It will cost you, at most, about 10 minutes, and the result will be possible improvements in your life as a patient.
Friday, April 11, 2014
Living with Follicular Lymphoma
A few days ago, someone wrote a comment on an older post. It read:
My husband was diagnosed with FNHL in January 2014 and I read your story. Best wishes to your five years and can you tell me how I can help him. My kids are 13, 9, and 7. Just tell me how to make five years like you. Thanks.
The comment just broke my heart. Partly because I suddenly remembered pretty clearly how it felt for those first few months. The helplessness. The not knowing. The worry, especially about my kids.
But then I felt helpless again, because I'm being asked to give some advice about how to stay alive for 5 years. I've never felt like my survival has been under my control. If cancer is a game of poker, then getting the diagnosis is like getting dealt a really crappy hand of 5 cards with no connection. But my diagnosis was Follicular Lymphoma. That's like tossing 3 of your cards and getting a dealt a couple of 3's. Still a crappy hand, but hey, you're in the game still. You might be able to bluff your way to a pot. But it's all still beyond your control.
So what can I say? What kind of advice can I offer to someone who wants to know how I got to 5 years (now 6 years)?
Well, I can't say how I got there. I can't tell you that there is some miracle cure. There are no quick fixes to Follicular Lymphoma. As much as I's like to be able to sell you a bottle of something, I have nothing to sell.
All I can offer is some insight into the journey. Take it for what it is -- my story.
All I have is some advice for how to stay as sane as possible on the way there. As I said, there's a pretty wide range of possibilities with Follicular Lymphoma (where you fall on that scale is probably one thing that is worth knowing, and people have lived with the disease for a very long time.
Try to stay healthy, eat well and exercise, love your spouse and kids, do stuff that makes you happy, make your small corner of the world a better place, and do all of those other things you should have been doing before you were diagnosed.
And all of this applies to caregivers, too.
My husband was diagnosed with FNHL in January 2014 and I read your story. Best wishes to your five years and can you tell me how I can help him. My kids are 13, 9, and 7. Just tell me how to make five years like you. Thanks.
The comment just broke my heart. Partly because I suddenly remembered pretty clearly how it felt for those first few months. The helplessness. The not knowing. The worry, especially about my kids.
But then I felt helpless again, because I'm being asked to give some advice about how to stay alive for 5 years. I've never felt like my survival has been under my control. If cancer is a game of poker, then getting the diagnosis is like getting dealt a really crappy hand of 5 cards with no connection. But my diagnosis was Follicular Lymphoma. That's like tossing 3 of your cards and getting a dealt a couple of 3's. Still a crappy hand, but hey, you're in the game still. You might be able to bluff your way to a pot. But it's all still beyond your control.
So what can I say? What kind of advice can I offer to someone who wants to know how I got to 5 years (now 6 years)?
Well, I can't say how I got there. I can't tell you that there is some miracle cure. There are no quick fixes to Follicular Lymphoma. As much as I's like to be able to sell you a bottle of something, I have nothing to sell.
All I can offer is some insight into the journey. Take it for what it is -- my story.
- The first advice I can give is the hardest to take. Try not to panic. I didn't say "Don't panic," because you're going to, I know that. But try not to. Follicular Lymphoma shows up in lots of different ways, some very slow growing, and some very aggressive. There's no way for me to know which type that the person who wrote the comment is dealing with. But it's been about four months since diagnosis, and there's no mention of treatment yet, so maybe it's slower growing. Here's what I say, and I know it's a risky thing to assume, but: when you are diagnosed with FL, you're probably not going to die tomorrow. You're probably not going to die next week, either. In fact, let's be conservative and say you're probably not going to die in a month, either. Let's not worry beyond that. Focus on what happens in the next four weeks. A scan? An appointment with the oncologist? A treatment? Yes? Focus on those things and think about how much they will help you. No? Nothing scheduled? Then your oncologist is a little less worried than he might have been in other circumstances. In that case, take a deep breath. Go to your son's soccer game or your daughter's play. Have dinner with a friend. Kiss your spouse. Worry about this month, and only this month. Until you can breathe again, don't look to far into the future. It will only get you worried.
- Start telling yourself that it gets easier with time. You're probably not ready to believe it yet. But you will at some point. I have found, and heard from other FL patients, that it takes about six months to start to relax and breathe more easily. Practice now. One day you will realize that it is noon and you haven't thought about cancer all morning. And that will be a really great day.
- Learn what you can about your disease. For me, knowing as much as I can about Follicular Lymphoma is a source of comfort. I feel like I can have a conversation with my oncologist and ask the right questions. And knowing for me is also a source of hope. I can track the progress of new treatments, get excited about trial results, and look toward the future. That gets easier with time, when you can see (and believe) that there's a future beyond the next month.
- Don't learn what you can about your disease. But sometimes this strategy doesn't work. Sometimes, especially early on, it's too overwhelming to learn so much, and it just does more harm than good. Every little detail can make you think, does this apply to me? And that, of course, is the opposite of the comfort and hope that we're looking for. So while I think that knowledge is power, I also think we all have to deal with this disease in the way that makes the most sense for us. I had a friend who had Hodgkin's Disease, and was pregnant at the time. She couldn't even look at the bag or the line during her chemo treatments. She is an incredibly strong, incredibly intelligent woman. But she wanted nothing to do with her disease while she was going through it. That's how she coped. So learn what you can about Follicular Lymphoma, unless that doesn't help. If you trust your oncologist, then do what he says and don't think about it.
- Most importantly, live your life. It's easy to become paralyzed by all of this. I remember one day early on going through a nasty chain in my head. I had been given an opportunity at work, and I thought, I have no idea what's going to happen to me. I can't commit to this thing. I need to say No. And then I thought, if I say No to this, there's not much point in even working. I can't commit to much of anything long-term at work. And if that's the case, why even work? And if I'm not going to work, why even get out of bed? I might as well just be dead now, if I can't let myself commit to anything. It was not a happy day for me. I realized that I couldn't stop my life because of this disease. We never know the future, even the cancer-free among us. You don't need to act as if there's nothing wrong, but you can't let your emotions block you from doing the things that you can handle physically. Now, I'm not a big "Bucket List" guy. There are things I want to do, but it's too much pressure for me to keep a list and feel like I have to accomplish it all. I take opportunities as they come up. I try not to let Lymphoma hold me back. (Lack of money? Lack of time? Oh yeah. They hold me back. Lymphoma? No way.)
All I have is some advice for how to stay as sane as possible on the way there. As I said, there's a pretty wide range of possibilities with Follicular Lymphoma (where you fall on that scale is probably one thing that is worth knowing, and people have lived with the disease for a very long time.
Try to stay healthy, eat well and exercise, love your spouse and kids, do stuff that makes you happy, make your small corner of the world a better place, and do all of those other things you should have been doing before you were diagnosed.
And all of this applies to caregivers, too.
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