I hope everyone is doing well during this difficult time.
My family and I are doing OK. We're keeping busy, which is good. My wife and I are able to work from home, which is a blessing. My two younger kids, both college students, are taking all of their classes online. They have plenty of work to do -- also a blessing. My oldest, who finished college a few months ago, has moved back in with us. He's been working a job that cannot be done at home. I'm glad they've given him and his colleagues the time to stay at home (with a little bit of pay), but he's the least busy of us. He is taking a course online, which is good, and he has created a Dungeons and Dragons campaign for the family, so as Dungeon Master, he has a lot of work to do.
(If you're not a D & D fan, and you don't care what it is, that's fine. If you're curious, you can find out the basics here. If you are a fan, know that I am a Dragonborn Rogue, and not a good one, since I rolled a natural 1 the first time I tried to use my Thieve's Tools and almost got us all killed by palace guards. Also, my best friend is a Gnome Barbarian, and a really bad influence.)
The point is, we're managing to stay home and stay safe.
Which isn't to say my mental and emotional health is completely good.
My wife and I have been trying to take a walk every day, which is good for us, physically. We live in a neighborhood of friendly and kind people who say hello as they are crossing the street so we can all keep a safe distance from one another.
On one of our walks, I told my wife that, in some ways, being a Follicular lymphoma patient has been pretty good preparation for all of this. I've always been very careful about staying away from sick people, washing my hands frequently, and generally trying to stay healthy.
I've also been preparing myself mentally for this. I have long followed a "3 Day Rule." All the cancer patients and survivors I know get that awful feeling when we find a new bump or unexplained pain. I've learned to give it 3 days. If I can't come up with an explanation for it, or it doesn't get better in 3 days, then I can call the doctor. It gives me a little time to stay calm. I rarely have to call the doctor.
But the last two weeks have been tough. I know the COVID-19 symptoms. I know what to look for. But it seems like every day, I've been feeling something. A headache. A slight cough. A scratchy throat. And I keep saying to myself, "Dammit. Here we go. It's starting." And then a half hour later, the headache is gone. Or I take a big drink of water, and the sore throat disappears.
It happens every day. I don't even have to wait 3 days -- the "symptoms" go pretty quickly. And I do have a reasonable explanation, as I look out the window and see trees budding and spring allergies kicking up.
But the stress is still awful.
As you know, I try to pay attention to mental and emotional health. It's a really important part of our overall health as Follicular Lymphoma patients. It's a disease (as you know) where physical symptoms are sometimes easier to deal with than emotional symptoms.
So if you're feeling the kind of stress and anxiety that I'm feeling, maybe one of these resources will help. Some of the advice is repeated, but maybe that means it's good advice worth listening to.
The Yale School of Medicine (with which I have a relationship) offers some general advice about Anxiety and COVID-19.
Blood-Cancer.com (a website that I write for) has some self-care tips.
The American Psychiatric Association's Center for Workplace Mental Health has a guide to maintaining well-being while working from home.
And finally, the National Alliance on Mental Illness has some coping strategies for dealing with COVID-19.
I think they are all useful, and if you are struggling with stress and anxiety, one or more of them may speak to you.
And if nothing else, know that there are plenty of us who are feeling the same way. I often take comfort in knowing that I'm not the only one who has certain feelings.
Most of all, if you're feeling isolated, reach out. Online communities aren't always great (I'm spending a lot less time on Twitter these days, because there's a lot there that upsets me), but online communities can be a great source of interaction and connection, too, if you find the right ones.
Feel free to reach out to me. Tell me how you're feeling. Share some coping strategies. And any D & D tips would be greatly appreciated.
Take care of yourselves.
Friday, March 27, 2020
Sunday, March 22, 2020
Hope and Daffodils
The daffodils in our yard are out a little early this year.
As you may now, daffodils, the yellow flowers that come up in early spring, are a symbol for hope for cancer patients. The American Cancer Society often hosts a fundraiser centered around daffodils. And a couple of years ago, there was a lot of news about the possibility of a compound in daffodils being used to kill cancer cells. (Of course, that was one of those "maybe this could work someday after a whole lot of research on it" that turned into "Daffodils could soon cure cancer!" Maybe some day. These things take time.)
Daffodils are special, though, because they are often one of the first flowers to come out in the spring. Mine are a beautiful bright yellow, which stands out against any snow that might still be around, or the brown earth that hasn't yet turned green.
They are symbols of hope because they manage to give us something great even when they are surrounded by something not so great.
Some years, I don't see daffodils until late April. This year, they bloomed about a month earlier than that.
Maybe nature knows we could use a shot of hope right now?
I've written about my daffodils before. I had a piece published with The Mighty a couple of years ago that talks about my daffodils and why they are especially important to me. They grow in the middle of a blackberry patch.
Here's a picture I took this morning:
(The daffodils are joined by some crocus friends. The crocuses usually come up even earlier than the daffodils, but are usually long gone by the time the daffodils arrive.)
You can see the daffodil is surrounded by the brown canes of the blackberries, which are covered with thorns.
If you remember the story of my blackberry patch, or you click above and read it again, then you know that I didn't plant the blackberries. We think a squirrel may have found a berry and then buried it in what used to be a shade garden, full of ferns and hostas. I used to see little thorny stems come up and I would pull them out, not knowing what they were, but treating them like other weeds. Six years ago, I needed shoulder surgery, and I couldn't do my weeding. Those stems grew into blackberries, and my shade garden is now a really productive blackberry patch. But some of those old plants still come up, including the daffodils.
So for me, daffodils are even more of a symbol of hope than they might be for other cancer patients.
I didn't ask for Follicular Lymphoma, like I didn't ask for that blackberry patch full of thorns. But they both came anyway. And growing in the middle of it all is a bright yellow piece of hope, a small bit of beauty, reminding me to look for the good in the middle of the bad.
And these days, the whole symbol might be eve more appropriate. Thorns are, after all, a plant's way of saying "keep your distance."
I'm not one to say "stay positive," because I think the message there is to ignore the bad stuff.
Instead, I say "stay hopeful," because that message recognizes that the bad stuff exists, but there are good things in the middle of it, and a wish that more good things will come.
So stay hopeful, everyone. Look for the daffodils among the thorns.
And take care of yourselves.
Friday, March 20, 2020
LRF Webinar on COVID-19 and Lymphoma
As I discussed in my last post, the Lymphoma Research Foundation conducted a webinar yesterday called "Coronavirus and What the Lymphoma Community Needs to Know."I listened in. I thought it was very helpful.
The LRF said they will post a recording of it later today. I will link it here when it is available, in case anyone would like to listen to it. But I'll make some comments on it here, too, if anyone is interested.
[Update: Here's the link. Thanks, William, for finding it.]
The webinar featured Dr. John Leonard of Weill Cornell, an expert in lymphoma. The webinar was an hour long, and he spent about the first 30 minutes giving some basic information about COVID-19 and the Corona virus, and what we know about it all so far. He was very careful to make clear that what he was saying was true for the United States on March 19. Different parts of the world are experiencing this differently, and things are changing quickly -- what was true a week ago might not be true anymore. So a local expert (like the CDC in the U.S.) or a local doctor are the best sources for the most current information.
For that reason, I'm not going to get into what he said during the first half. There was some good basic information about the virus -- and I value good information. As I've said before, I find comfort in it.
What we do know, we know from only about 2 months of experience, since the virus was first identified and named in January.
We know from that data that when people are infected with COVID-19, about 80% of people will have fairly mild symptoms, and may not even realize they have been infected. It will be, for them, like having a cold. About 20% will end up with more severe symptoms, including about 5% who may end up in Intensive Care.
I'm not bringing up those numbers to scare anyone -- my guess is that you're probably at your "scare" level at this point, whatever numbers you hear.
I'm bringing them up to remind you how to read numbers. Just like reading survival statistics usually means we focus on the worst of them, it's important to remember to take things slowly and carefully. Reading that FL has a survival rate of 10 years doesn't mean you'll die in 10 years. Don't automatically put yourself into the 5%. (More on statistics in a minute.)
Now, the Big Question on my mind, and on everyone's mind, is: How vulnerable am I?
According to Dr. Leonard, there are definitely some higher risk groups among us: people who are older, who have had cardiovascular or immuno-suppressive disease, respiratory disease, and cancer. Those people are not guaranteed to have a bad course of COVID-19, but they are at higher risk. Again, this is about statistics -- a set of numbers that described a big group, not any of the individuals within that group.
So some of us may be in higher risk groups, but it's important to remember that there are not any NO RISK groups. As Dr. Leonard says, everyone should be taking the highest precautions. Don't worry about whether you are higher risk or not -- behave like you you are, and do the things you are being asked to do (from washing your hands to staying away from groups of people to allowing healthcare professionals to do their jobs if you don't need them right now.
In one of the questions he took at the end, Dr. Leonard addressed the question of how to tell if you are immunocompromised or not -- if you are in a higher risk group. I really liked his answer.
He said, basically anyone who has been diagnosed with lymphoma has an "imperfect immune system." You could be newly diagnosed and watching and waiting, or in active treatment with chemo, or in Rituxan Maintenance, or years after treatment. You probably have an immune system that is weaker in some ways than others who have not had the lymphoma diagnosis. If a healthy immune system is a 10, and you had treatment years ago, maybe you're a 9. If you're in treatment now, maybe you're a 5 or a 7.
But no doctor can give you that number. There's no way to tell. It will depend on your own individual experience. If you had treatment a while ago, and you have found yourself prone to infections, then you should take extra precautions. If you seem to get infections at the same rate as people around you, then maybe your immune system is a little less compromised -- but you should still take precautions. Even people with a perfect immune system should be more careful, because it protects others who may not be so perfect.
I found all of that a little comforting. I think about how I have felt over the last few years, and I give myself a number. (I'm not sharing it with you. Figure out your own number.) For me, it's a number that I am fairly comfortable with -- one that makes me feel not too vulnerable, but also one that reminds me to be extra careful. It's a number I can live with.
I hope you can find your own number -- one that keeps you from worrying too much but that also reminds you and others to be extra careful. (And since the problem with numbers is that they seem so definite and real, you can use that to get others to take things seriously if you need to -- "Please wash your hands and stay 6 feet away! My immune system is at a [your number] out of 10!" The number doesn't really mean anything -- you made it up yourself -- but it might help others understand your situation. Just make sure you don't let that number make you upset. Find one that helps you maintain some balance.)
Some other specific issues:
Dr. Leonard says that people who are watching and waiting should continue to do so, as long as they are able. If there's no reason to start treatment, then keep holding off. As he said, "We'll all be smarter in 2 months." We'll know a lot more about the virus and how to handle it. Wait if you can.
If the virus sticks around for a while, it will be better to get infected a few months from now than it is right now. Better to not get infected at al, obviously, but in a couple of months, the health care system will be better equipped to handle things, and we'll know more about it.
If you do feel like you have been infected, call your doctor. Avoid going to the hospital if symptoms are in that 80% group of people with mild symptoms. Certainly go if symptoms get worse, but if you can ride it out at home, do so.
What if you're in active treatment? Should you keep it up? Continue with appointments?
Dr. Leonard said he has been keeping his clinical appointments -- meeting with patients who are in treatment or who are having problems. If you need to see your oncologist, then keep that appointment. Work with the doctor to figure out if the appointment is necessary. For follow-up appointments or non-emergencies, consider video visits, if possible, or talking to the doc on the phone. If it's possible to put something off, then put it off. Dr. Leonard gave the example of Rituxan Maintenance -- it's optional for lots of people. Maybe skipping this month's treatment is fine.
Again, talk to your doctor. Make the choice after a full conversation.
There is more that Dr. Leonard had to say, and I encourage you to listen when's it's available. (As I said, I will post it when I can.)
But, for me personally, I found it all fairly encouraging -- at least as encouraging as it could be in uncertain times. It helped me find my number -- that balance between being cautious (which we should all be) and not obsessing too much over things I can't control. I hope you can find that, too.
If you listened to the webinar, I'd like to hear your thoughts.
But remember the most important takeaway from everything I write -- I'm not a doctor or a cancer researcher, just a Cancer Nerd, a patient who reads and listens a lot. ALWAYS ask your doctor if you have questions. Doctors, not Nerds, are the best sources of information about your own situation.
Take care, everyone.
The LRF said they will post a recording of it later today. I will link it here when it is available, in case anyone would like to listen to it. But I'll make some comments on it here, too, if anyone is interested.
[Update: Here's the link. Thanks, William, for finding it.]
The webinar featured Dr. John Leonard of Weill Cornell, an expert in lymphoma. The webinar was an hour long, and he spent about the first 30 minutes giving some basic information about COVID-19 and the Corona virus, and what we know about it all so far. He was very careful to make clear that what he was saying was true for the United States on March 19. Different parts of the world are experiencing this differently, and things are changing quickly -- what was true a week ago might not be true anymore. So a local expert (like the CDC in the U.S.) or a local doctor are the best sources for the most current information.
For that reason, I'm not going to get into what he said during the first half. There was some good basic information about the virus -- and I value good information. As I've said before, I find comfort in it.
What we do know, we know from only about 2 months of experience, since the virus was first identified and named in January.
We know from that data that when people are infected with COVID-19, about 80% of people will have fairly mild symptoms, and may not even realize they have been infected. It will be, for them, like having a cold. About 20% will end up with more severe symptoms, including about 5% who may end up in Intensive Care.
I'm not bringing up those numbers to scare anyone -- my guess is that you're probably at your "scare" level at this point, whatever numbers you hear.
I'm bringing them up to remind you how to read numbers. Just like reading survival statistics usually means we focus on the worst of them, it's important to remember to take things slowly and carefully. Reading that FL has a survival rate of 10 years doesn't mean you'll die in 10 years. Don't automatically put yourself into the 5%. (More on statistics in a minute.)
Now, the Big Question on my mind, and on everyone's mind, is: How vulnerable am I?
According to Dr. Leonard, there are definitely some higher risk groups among us: people who are older, who have had cardiovascular or immuno-suppressive disease, respiratory disease, and cancer. Those people are not guaranteed to have a bad course of COVID-19, but they are at higher risk. Again, this is about statistics -- a set of numbers that described a big group, not any of the individuals within that group.
So some of us may be in higher risk groups, but it's important to remember that there are not any NO RISK groups. As Dr. Leonard says, everyone should be taking the highest precautions. Don't worry about whether you are higher risk or not -- behave like you you are, and do the things you are being asked to do (from washing your hands to staying away from groups of people to allowing healthcare professionals to do their jobs if you don't need them right now.
In one of the questions he took at the end, Dr. Leonard addressed the question of how to tell if you are immunocompromised or not -- if you are in a higher risk group. I really liked his answer.
He said, basically anyone who has been diagnosed with lymphoma has an "imperfect immune system." You could be newly diagnosed and watching and waiting, or in active treatment with chemo, or in Rituxan Maintenance, or years after treatment. You probably have an immune system that is weaker in some ways than others who have not had the lymphoma diagnosis. If a healthy immune system is a 10, and you had treatment years ago, maybe you're a 9. If you're in treatment now, maybe you're a 5 or a 7.
But no doctor can give you that number. There's no way to tell. It will depend on your own individual experience. If you had treatment a while ago, and you have found yourself prone to infections, then you should take extra precautions. If you seem to get infections at the same rate as people around you, then maybe your immune system is a little less compromised -- but you should still take precautions. Even people with a perfect immune system should be more careful, because it protects others who may not be so perfect.
I found all of that a little comforting. I think about how I have felt over the last few years, and I give myself a number. (I'm not sharing it with you. Figure out your own number.) For me, it's a number that I am fairly comfortable with -- one that makes me feel not too vulnerable, but also one that reminds me to be extra careful. It's a number I can live with.
I hope you can find your own number -- one that keeps you from worrying too much but that also reminds you and others to be extra careful. (And since the problem with numbers is that they seem so definite and real, you can use that to get others to take things seriously if you need to -- "Please wash your hands and stay 6 feet away! My immune system is at a [your number] out of 10!" The number doesn't really mean anything -- you made it up yourself -- but it might help others understand your situation. Just make sure you don't let that number make you upset. Find one that helps you maintain some balance.)
Some other specific issues:
Dr. Leonard says that people who are watching and waiting should continue to do so, as long as they are able. If there's no reason to start treatment, then keep holding off. As he said, "We'll all be smarter in 2 months." We'll know a lot more about the virus and how to handle it. Wait if you can.
If the virus sticks around for a while, it will be better to get infected a few months from now than it is right now. Better to not get infected at al, obviously, but in a couple of months, the health care system will be better equipped to handle things, and we'll know more about it.
If you do feel like you have been infected, call your doctor. Avoid going to the hospital if symptoms are in that 80% group of people with mild symptoms. Certainly go if symptoms get worse, but if you can ride it out at home, do so.
What if you're in active treatment? Should you keep it up? Continue with appointments?
Dr. Leonard said he has been keeping his clinical appointments -- meeting with patients who are in treatment or who are having problems. If you need to see your oncologist, then keep that appointment. Work with the doctor to figure out if the appointment is necessary. For follow-up appointments or non-emergencies, consider video visits, if possible, or talking to the doc on the phone. If it's possible to put something off, then put it off. Dr. Leonard gave the example of Rituxan Maintenance -- it's optional for lots of people. Maybe skipping this month's treatment is fine.
Again, talk to your doctor. Make the choice after a full conversation.
There is more that Dr. Leonard had to say, and I encourage you to listen when's it's available. (As I said, I will post it when I can.)
But, for me personally, I found it all fairly encouraging -- at least as encouraging as it could be in uncertain times. It helped me find my number -- that balance between being cautious (which we should all be) and not obsessing too much over things I can't control. I hope you can find that, too.
If you listened to the webinar, I'd like to hear your thoughts.
But remember the most important takeaway from everything I write -- I'm not a doctor or a cancer researcher, just a Cancer Nerd, a patient who reads and listens a lot. ALWAYS ask your doctor if you have questions. Doctors, not Nerds, are the best sources of information about your own situation.
Take care, everyone.
Wednesday, March 18, 2020
COVID-19: What the Lymphoma Community Needs to Know
I want to make everyone aware of an online event that's happening tomorrow (Thursday, March 19, at 1:00pm Eastern Daylight Time).
It's called "Coronavirus and What the Lymphoma Community Needs to Know," and it is sponsored by the Lymphoma Research Foundation.
Click on the link above for more information. It's free, but registration is required. After you register, you'll get instructions on how to sign in to the event.
Here's the description from the site:
I can't tell you for certain how valuable this will be. But I do know that the Lymphoma Research Foundation is certainly one of the most reputable sources of information about Lymphoma that is out there. (I went to one of their events a few weeks ago, you might remember.)
And their guest, Dr. John Leonard, who will be taking questions, is a Lymphoma Rock Star, one of the world's leading lymphoma experts. (He did the Cancer Cast podcast that I linked to a few weeks ago.) If anyone knows how COVID-19 will affect lymphoma patients, it will be him.
So if you have the opportunity to listen in, go to the link and register. I'm going to try to listen in, too, and report back on what I hear.
If you listen in and you find something helpful, please share it in the comments.
I hope this is helpful to some of you.
Take care of yourselves.
It's called "Coronavirus and What the Lymphoma Community Needs to Know," and it is sponsored by the Lymphoma Research Foundation.
Click on the link above for more information. It's free, but registration is required. After you register, you'll get instructions on how to sign in to the event.
Here's the description from the site:
Program Overview:
• Introductions and LRF Overview
• COVID-19 and What the Lymphoma Community Needs to Know
• LRF’s Support Services and Resources Overview
• Questions for Dr. John P. Leonard
The wellbeing of people with lymphoma and their caregivers is the top priority of the Lymphoma Research Foundation (LRF). People with cancer, who are in active cancer treatment or have been previously been treated for cancer, older patients, and people with other serious chronic medical conditions, may be at higher risk should they contract the coronavirus (also called COVID-19). As a member of the LRF’s Scientific Advisory Board, Dr. John P. Leonard from Weill Cornell Medicine will address what people with lymphoma should know about the virus.
• Introductions and LRF Overview
• COVID-19 and What the Lymphoma Community Needs to Know
• LRF’s Support Services and Resources Overview
• Questions for Dr. John P. Leonard
The wellbeing of people with lymphoma and their caregivers is the top priority of the Lymphoma Research Foundation (LRF). People with cancer, who are in active cancer treatment or have been previously been treated for cancer, older patients, and people with other serious chronic medical conditions, may be at higher risk should they contract the coronavirus (also called COVID-19). As a member of the LRF’s Scientific Advisory Board, Dr. John P. Leonard from Weill Cornell Medicine will address what people with lymphoma should know about the virus.
I can't tell you for certain how valuable this will be. But I do know that the Lymphoma Research Foundation is certainly one of the most reputable sources of information about Lymphoma that is out there. (I went to one of their events a few weeks ago, you might remember.)
And their guest, Dr. John Leonard, who will be taking questions, is a Lymphoma Rock Star, one of the world's leading lymphoma experts. (He did the Cancer Cast podcast that I linked to a few weeks ago.) If anyone knows how COVID-19 will affect lymphoma patients, it will be him.
So if you have the opportunity to listen in, go to the link and register. I'm going to try to listen in, too, and report back on what I hear.
If you listen in and you find something helpful, please share it in the comments.
I hope this is helpful to some of you.
Take care of yourselves.
Monday, March 16, 2020
More on COVID-19: Knowledge and Comfort
I have a bunch of stuff lined up to write about -- some FDA news, for example, and some other research results related to Follicular Lymphoma. But it doesn't seem right to get into those things right now when there seem to be immediate concerns about Covid-19 and what it means for us as FL patients.
I'm not quite sure what to say, because I'm as confused and unsure about things as all of you probably are. I don't know where individual readers come from (unless you tell me), but I know which countries people come from in general (I have readers from about 80 countries in all). So I now a big portion of you come from countries that are dealing with the Corona Virus -- many from the U.S.A., lots from Europe, a few from South America, and then from other parts of the English-speaking world like Australia and Canada. It seems like the virus is affecting all of us in some way --
or it will soon.
My response to this is my usual response to anything related to FL -- try to find information. For me, knowledge is comfort. I feel much better if I know what I'm dealing with.
Unfortunately, I can't find anything that really addresses what all of this means for Follicular Lymphoma patients, specifically. As I said in my last post, I feel like I'm in that "in between" that most FL patients find themselves in at some point -- not really sick, exactly, but maybe not completely well, either. I had a check-up with the oncologist about 5 weeks ago. My blood counts seemed fine. Does that mean I am not immuno-compromised?
I don't feel like I can contact my oncologist to ask, because, honestly, I think other people's problems are bigger than mine, and the oncologist should be spending time on them, not me.
I did, though, find someone in an online group who copied an email from the oncologist with a little more info about that patient's particular situation:
"In regards to your diagnosis, you have follicular lymphoma, which is a cancer of the lymphatic system, and the lymphatic system's function is to help the body get rid of wastes/toxins whole also transporting the infection fighting cells of your immune system to help fight off any viral/bacterial/pathogen that enters the body. As of your most recent visit with blood work on [date], your White Blood Cell and Absolute Neutrophil count were normal, which means you do have an adequate supply of neutrophils (white blood cells that are the first responders to fight off infections). That being said, because you have follicular lymphoma, you are likely at somewhat of an increased risk for infection compared to the average healthy adult without follicular lymphoma. The degree of increased risk is not known."
A few things about this -- I am assuming this was an actual communication from an oncologist, as the person said, and not something that was made up. (If I was going to make something up, I'd be a lot more creative about it, so I assume this is all truth.) It's also written specifically for this patient, but I assume it is generalizable to ALL Follicular Lymphoma patients.
So working on those assumptions, I at least have a little more information than I had just a few days ago. Yes, I am probably "normal" in some ways right now. But in other ways, I do need to be more careful than most people.
I wish I had something more than that last line -- "The degree of increased risk is not known." But, as I said before, I'm used to being "in between" these days. I can't know much for certain. I will work with the informaton that I have.
And so, my family and I will continue to behave as we have been. We're spending a lot of time in the house these days. We have a 1000 piece puzzle laid out that we continue to work on. My wife and I are working from home, and our kids' college classes are online. We're keeping busy.
But we're not shut-ins, completely. We're going for walks. We're going to ask a neighbor to have a tea party -- we'll meet outside, between our two houses, each of us bringing our own cup of tea, and sit 10 feet apart from each other. Far enough to stay safe, close enough to feel like we are with someone we like to spend time with. We're trying to be creative about maintaining social distance while not falling into social isolation.
In terms of self-care and getting comfort from knowledge, my next step is to find some information about how to deal with the fear and anxiety that comes from this very unusual situation. Follicular Lymphoma is, and always will be, an emotional disease as much as it is a physical one. We need to find ways to take care of our mental health.
I'll share what I find.
Take care, everyone. I wish you all peace and safety through al of this.
I'm not quite sure what to say, because I'm as confused and unsure about things as all of you probably are. I don't know where individual readers come from (unless you tell me), but I know which countries people come from in general (I have readers from about 80 countries in all). So I now a big portion of you come from countries that are dealing with the Corona Virus -- many from the U.S.A., lots from Europe, a few from South America, and then from other parts of the English-speaking world like Australia and Canada. It seems like the virus is affecting all of us in some way --
or it will soon.
My response to this is my usual response to anything related to FL -- try to find information. For me, knowledge is comfort. I feel much better if I know what I'm dealing with.
Unfortunately, I can't find anything that really addresses what all of this means for Follicular Lymphoma patients, specifically. As I said in my last post, I feel like I'm in that "in between" that most FL patients find themselves in at some point -- not really sick, exactly, but maybe not completely well, either. I had a check-up with the oncologist about 5 weeks ago. My blood counts seemed fine. Does that mean I am not immuno-compromised?
I don't feel like I can contact my oncologist to ask, because, honestly, I think other people's problems are bigger than mine, and the oncologist should be spending time on them, not me.
I did, though, find someone in an online group who copied an email from the oncologist with a little more info about that patient's particular situation:
"In regards to your diagnosis, you have follicular lymphoma, which is a cancer of the lymphatic system, and the lymphatic system's function is to help the body get rid of wastes/toxins whole also transporting the infection fighting cells of your immune system to help fight off any viral/bacterial/pathogen that enters the body. As of your most recent visit with blood work on [date], your White Blood Cell and Absolute Neutrophil count were normal, which means you do have an adequate supply of neutrophils (white blood cells that are the first responders to fight off infections). That being said, because you have follicular lymphoma, you are likely at somewhat of an increased risk for infection compared to the average healthy adult without follicular lymphoma. The degree of increased risk is not known."
A few things about this -- I am assuming this was an actual communication from an oncologist, as the person said, and not something that was made up. (If I was going to make something up, I'd be a lot more creative about it, so I assume this is all truth.) It's also written specifically for this patient, but I assume it is generalizable to ALL Follicular Lymphoma patients.
So working on those assumptions, I at least have a little more information than I had just a few days ago. Yes, I am probably "normal" in some ways right now. But in other ways, I do need to be more careful than most people.
I wish I had something more than that last line -- "The degree of increased risk is not known." But, as I said before, I'm used to being "in between" these days. I can't know much for certain. I will work with the informaton that I have.
And so, my family and I will continue to behave as we have been. We're spending a lot of time in the house these days. We have a 1000 piece puzzle laid out that we continue to work on. My wife and I are working from home, and our kids' college classes are online. We're keeping busy.
But we're not shut-ins, completely. We're going for walks. We're going to ask a neighbor to have a tea party -- we'll meet outside, between our two houses, each of us bringing our own cup of tea, and sit 10 feet apart from each other. Far enough to stay safe, close enough to feel like we are with someone we like to spend time with. We're trying to be creative about maintaining social distance while not falling into social isolation.
In terms of self-care and getting comfort from knowledge, my next step is to find some information about how to deal with the fear and anxiety that comes from this very unusual situation. Follicular Lymphoma is, and always will be, an emotional disease as much as it is a physical one. We need to find ways to take care of our mental health.
I'll share what I find.
Take care, everyone. I wish you all peace and safety through al of this.
Thursday, March 12, 2020
COVID-19 and Follicular Lymphoma
I've been considering writing about COVID-19/Corona Virus for a week or so. It seems like the last 24 hours have really changed the way people are looking at it, at least in the part of the USA that I live in.
I'm working from home. I've been told I will work be working from home for about 3 weeks, at least. It might be more.
This morning, my wife and I drove to get my daughter, who is in her first year of college, to bring her home. She's not too far away, so that wasn't too bad. She's on a planned break next week, and then she'll be home with us for two weeks, taking her classes online.
My middle child is also away at school, about 6 hours away from us. He's coming home Saturday, and then it's the same thing as my daughter -- a week of planned break, and then two weeks of online classes, staying at home with us.
My wife is encouraging us all to play "The Glad Game." There's lots to be worried about, or inconvenienced by, or just unsure of. So we're focusing on things that make us glad. We'll have our kids home with us. It's less worrying when they're in our sight. And we get to spend some unexpected time with them, which is always great.
Our oldest just graduated from college a few months ago. He lives nearby. We'll have him over, too. His band was supposed to play a gig tonight, and it got cancelled. He could probably use a lift. (And a meal.)
I had thought about giving some advice about dealing with this whole situation, but my guess is that no one reading this would need that advice. Those of us who have had treatment have been immuno-compromised at some point or other, or maybe still are. That's unavoidable. Our cancer involves cells that are part of the immune system, so treatments (no matter what they are, from Rituxan to chemo to Stem Cell Transplants) end up wiping out some immune cells. So a common side effect is a less effective immune system, at least for a while. So we're used to being careful in situations like this -- staying away from sick people, washing our hands, etc.
And I also know how I feel now -- the same feeling of being "in between" that comes with being a Follicular Lymphoma patient/survivor/whatever label you want to use. I haven't had treatment in 10 years, so I'm not in that state of immuno-compromise that cancer patients are in when they are actively going through treatment. But I'm also not sure that I'm someone with a completely healthy immune system. And I'm certainly not one of those young healthy people who supposedly "don't have anything to worry about."
So what to do?
Well, I plan to keep up the good habits I've had for 10 years -- washing my hands a lot, staying away from sick people, and generally being careful.
And trying not to worry too much. Trying, as best as I can, to live my life, while still staying careful. I can't keep myself shut up inside my house. I'm not in a place now where I think I have to, so I won't. But I won't do anything crazy, either. And that includes obsessing over the news, or over what people have to say on Twitter or Facebook, either about our overall behavior being too much of an over-reaction, or that we're all doomed because we're not taking it seriously enough. I've been dealing with being a sick person for a long time. I trust that I'll now how to behave.
And if you are looking for advice, be sure to focus on reputable sources. Like One Cancer Voice, a group of cancer organizations in the UK. And in the USA, The CDC (Centers for Disease Control and Prevention). Or from Fred Hutchinson Cancer Center. Or from this doctor who is also a cancer patient.
You'll probably see that the advice is all very similar. And worth taking.
Take care of yourselves, everyone. Physically and mentally. We're probably in for a long haul here, but there are plenty of things we can control.
As always, stay hopeful.
I'm working from home. I've been told I will work be working from home for about 3 weeks, at least. It might be more.
This morning, my wife and I drove to get my daughter, who is in her first year of college, to bring her home. She's not too far away, so that wasn't too bad. She's on a planned break next week, and then she'll be home with us for two weeks, taking her classes online.
My middle child is also away at school, about 6 hours away from us. He's coming home Saturday, and then it's the same thing as my daughter -- a week of planned break, and then two weeks of online classes, staying at home with us.
My wife is encouraging us all to play "The Glad Game." There's lots to be worried about, or inconvenienced by, or just unsure of. So we're focusing on things that make us glad. We'll have our kids home with us. It's less worrying when they're in our sight. And we get to spend some unexpected time with them, which is always great.
Our oldest just graduated from college a few months ago. He lives nearby. We'll have him over, too. His band was supposed to play a gig tonight, and it got cancelled. He could probably use a lift. (And a meal.)
I had thought about giving some advice about dealing with this whole situation, but my guess is that no one reading this would need that advice. Those of us who have had treatment have been immuno-compromised at some point or other, or maybe still are. That's unavoidable. Our cancer involves cells that are part of the immune system, so treatments (no matter what they are, from Rituxan to chemo to Stem Cell Transplants) end up wiping out some immune cells. So a common side effect is a less effective immune system, at least for a while. So we're used to being careful in situations like this -- staying away from sick people, washing our hands, etc.
And I also know how I feel now -- the same feeling of being "in between" that comes with being a Follicular Lymphoma patient/survivor/whatever label you want to use. I haven't had treatment in 10 years, so I'm not in that state of immuno-compromise that cancer patients are in when they are actively going through treatment. But I'm also not sure that I'm someone with a completely healthy immune system. And I'm certainly not one of those young healthy people who supposedly "don't have anything to worry about."
So what to do?
Well, I plan to keep up the good habits I've had for 10 years -- washing my hands a lot, staying away from sick people, and generally being careful.
And trying not to worry too much. Trying, as best as I can, to live my life, while still staying careful. I can't keep myself shut up inside my house. I'm not in a place now where I think I have to, so I won't. But I won't do anything crazy, either. And that includes obsessing over the news, or over what people have to say on Twitter or Facebook, either about our overall behavior being too much of an over-reaction, or that we're all doomed because we're not taking it seriously enough. I've been dealing with being a sick person for a long time. I trust that I'll now how to behave.
And if you are looking for advice, be sure to focus on reputable sources. Like One Cancer Voice, a group of cancer organizations in the UK. And in the USA, The CDC (Centers for Disease Control and Prevention). Or from Fred Hutchinson Cancer Center. Or from this doctor who is also a cancer patient.
You'll probably see that the advice is all very similar. And worth taking.
Take care of yourselves, everyone. Physically and mentally. We're probably in for a long haul here, but there are plenty of things we can control.
As always, stay hopeful.
Sunday, March 8, 2020
A Cure for Cancer: An Update
I was reading something recently that discussed the difficulties of finding "a cure for cancer," and it got me thinking about a few things.
First, there's not really such as thing as "cancer." There are actually about 200 different diseases that are considered forms of cancer. In fact, some experts say there are as many as 60 different types of Non-Hodgkin's Lymphoma. Heck -- even what we call "Follicular Lymphoma" shows itself in lots of different ways, and overviews like the ones I looked at in my last post separate differnt types of FL when discussing them.
My point is, when we talk about "cancer," we're not really talking about one thing.
My other thought was, "Didn't some company say they were going to cure cancer in the next year? I wonder how that's going?"
Sure enough, it's been a little over a year since I wrote about some folks who claimed to have a cancer treatment that would "be effective from day one, will last a duration of a few weeks and will have no or minimal side-effects at a much lower cost than most other treatments on the market."
The treatment, called MuTaTo, is an immunotherapy. Like other immunotherapies, it uses the body's immune system to go after cancer cells by targeting something on the surface of the cell. But since cancer cells mutate, that target could change, making the immunotherapy ineffective. MuTaTo targets three different things on the cancer cell, making the cancer cells easier to find and eliminate.
It actually sounds like a great idea, at least in theory.
The problem with MuTaTo is that it was still closer to the "theory" stage than the "reality" stage. It had only been tried in vitro, in a laboratory, not on actual patients. It could very well work. Unfortunately, clinical trials with actual patients takes a long time -- years long. As much as we'd like a treatment to be available immediately, we also want to now that the treatment will be effective for a long time, and that any harmful side effects are fully explored. there's no point in approving a treatment that "cures" 100% of patients within a year, but that also stops working after 2 years, or causes heart damage that kills patients after 3 years, but nobody knows that because there were no trials, or only very short ones.
I did a quick search for the company making these claims, Accelerated Evolution Biotechnologies, and there really hasn't been much news from them in about a year. I did find an article that said the company would really like to publish the results of its research in a peer-reviewed medical journal, but it can't afford to. They did, apparently, find the funding to publish in an open-access journal, showing proof of concept, and giving the results of some experiments involving mice. The article essentially gives more detail, in a more reputable place, than the press releases and interviews from a year ago. But they still haven't made much progress in a year.
Which, in some ways, is just fine. As I said, better to take it slow and make sure things are effective and safe over time.
The problem comes with the promise that 1) it will all happen in a year, and 2) it will cure all cancers.
I hope, some day, it does. That would be pretty wonderful.
But,for me, that's the lesson in all of this -- Hope is a beautiful thing, but a kind of informed, slightly skeptical hope is probably a little bit better. It's easy to get excited about big claims, especially when they are about something we want so badly. But better to enjoy the rush of the initial excitement and then step back look a little more closely.
There's still lots to be excited about, and lots to be hopeful for, in our futures as Follicular Lymphoma patients.
And I hope we're al around to see it happen, even if it's a long time from now.
First, there's not really such as thing as "cancer." There are actually about 200 different diseases that are considered forms of cancer. In fact, some experts say there are as many as 60 different types of Non-Hodgkin's Lymphoma. Heck -- even what we call "Follicular Lymphoma" shows itself in lots of different ways, and overviews like the ones I looked at in my last post separate differnt types of FL when discussing them.
My point is, when we talk about "cancer," we're not really talking about one thing.
My other thought was, "Didn't some company say they were going to cure cancer in the next year? I wonder how that's going?"
Sure enough, it's been a little over a year since I wrote about some folks who claimed to have a cancer treatment that would "be effective from day one, will last a duration of a few weeks and will have no or minimal side-effects at a much lower cost than most other treatments on the market."
The treatment, called MuTaTo, is an immunotherapy. Like other immunotherapies, it uses the body's immune system to go after cancer cells by targeting something on the surface of the cell. But since cancer cells mutate, that target could change, making the immunotherapy ineffective. MuTaTo targets three different things on the cancer cell, making the cancer cells easier to find and eliminate.
It actually sounds like a great idea, at least in theory.
The problem with MuTaTo is that it was still closer to the "theory" stage than the "reality" stage. It had only been tried in vitro, in a laboratory, not on actual patients. It could very well work. Unfortunately, clinical trials with actual patients takes a long time -- years long. As much as we'd like a treatment to be available immediately, we also want to now that the treatment will be effective for a long time, and that any harmful side effects are fully explored. there's no point in approving a treatment that "cures" 100% of patients within a year, but that also stops working after 2 years, or causes heart damage that kills patients after 3 years, but nobody knows that because there were no trials, or only very short ones.
I did a quick search for the company making these claims, Accelerated Evolution Biotechnologies, and there really hasn't been much news from them in about a year. I did find an article that said the company would really like to publish the results of its research in a peer-reviewed medical journal, but it can't afford to. They did, apparently, find the funding to publish in an open-access journal, showing proof of concept, and giving the results of some experiments involving mice. The article essentially gives more detail, in a more reputable place, than the press releases and interviews from a year ago. But they still haven't made much progress in a year.
Which, in some ways, is just fine. As I said, better to take it slow and make sure things are effective and safe over time.
The problem comes with the promise that 1) it will all happen in a year, and 2) it will cure all cancers.
I hope, some day, it does. That would be pretty wonderful.
But,for me, that's the lesson in all of this -- Hope is a beautiful thing, but a kind of informed, slightly skeptical hope is probably a little bit better. It's easy to get excited about big claims, especially when they are about something we want so badly. But better to enjoy the rush of the initial excitement and then step back look a little more closely.
There's still lots to be excited about, and lots to be hopeful for, in our futures as Follicular Lymphoma patients.
And I hope we're al around to see it happen, even if it's a long time from now.
Wednesday, March 4, 2020
Follicular Lymphoma Treatment Updates
If you've been reading the blog for awhile, you know I like to read and report on "state of the field" pieces that I find online. These are articles or videos from lymphoma experts that talk about where we are in terms of treatment, and maybe what we might expect in the near future.
I like to think I keep up with things pretty well, so these "where are we now?" pieces don't always give us anything new. But it is nice to see what gets lymphoma experts excited these days.
Here are a couple of them for you:
First, "Deep Data Dive Needed for Upfront Treatment Selection in iNHL." This was published last week on OncLive, and features a review of a presentation from Dr. Sonali Smith from the University of Chicago. The article is set up as a series questions about changes in the way indolent Non Hodgkin's Lymphoma is treated, based on recent clinical trial results. (This isn't strictly about Follicular Lymphoma, then, but FL is the most common indolent, slow-growing lymphoma, so a lot of it applies to FL).
The questions:
Can the “Chemo-Free” R2 Regimen replace Chemoimmunotherapy?
Can Obinutuzumab replace Rituximab?
Should patients receive Maintenance therapy?
The answers?
Well, if you were expecting a simple "Yes/No" answer, you haven't been reading about Follicular Lymphoma too much. There are a lot of "maybe" or "it depends" answers here. R-squared is an alternative to traditional chemo, but not in all cases. It is effective, and does have different side effects than chemo, but not necessarily fewer of them. Obinutuzumab is a good alternative for some patients, but Rituxan still works fine, and there's no difference in Overall Survival between them. And maintenance? I'm not even going to bother answering that one, except to say that, yes, sometimes it's a good thing.
So that's the state of were we are -- lots of questions that still need answers.
Or do they?
You can look at this as being a frustrating lack of definite answers, which is understandable.
Or you can look at it as our having lots of choices. To me, I take comfort in knowing that there are lots of options for me. Rituxan has a way of not working after a while if patients get too much of it. there's some suggestion that Obinutuzumab might work for those patients.
See? Options are good.
The other one to share is called "Follicular Lymphoma: Recent and Emerging Therapies, Treatment Strategies, and Remaining Unmet Needs," published a few months ago in The Oncologist. (Thanks to reader Christine for sharing the link with me.)
Unlike the first one, this article is meant to be comprehensive, giving generalist oncologist (not lymphoma specialists) an overview of Follicular Lymphoma: statistics about who gets it, how it is staged and risk-stratified, and how patients at various places in their FL experience can be treated (newly diagnosed with no symptoms, newly diagnosed with some symptoms, previously treated, etc.).
It also has a pretty good list of treatments that currently in trials -- pathway inhibitors, bispecifics, antibody-drug conjugates. You can read about some of them here and here, if you want a little more detail. If that first article is hopeful because it suggests we have lots of options right now, then this one is super-hopeful because it shows that there are lots of options that might be available to us in the near future.
Of course, it also describes some of the challenges that we face, too -- effective treatments that also mess with our Quality of Life, especially if we need to take multiple treatments over many years (which is the case for a lot of us); we're still unsure of the best sequence for treatments -- which comes first, and after that stops working, what to try next, etc. And difficulty in figuring out which patients are likely to transform, or to need treatment within 2 years after their first treatment (EFS24).
So there are still lots of challenges out there, but lots to be happy about right now, and lots to be hopeful about in the future. I look back at the state of the field in 2008, and I'm amazed at how far we've come since then (there have been 12 treatments for Follicular Lymphoma approved by the FDA in the 12 years since I was diagnosed. How cool is that?)
Stay educated, everyone. But mostly, stay hopeful.
I like to think I keep up with things pretty well, so these "where are we now?" pieces don't always give us anything new. But it is nice to see what gets lymphoma experts excited these days.
Here are a couple of them for you:
First, "Deep Data Dive Needed for Upfront Treatment Selection in iNHL." This was published last week on OncLive, and features a review of a presentation from Dr. Sonali Smith from the University of Chicago. The article is set up as a series questions about changes in the way indolent Non Hodgkin's Lymphoma is treated, based on recent clinical trial results. (This isn't strictly about Follicular Lymphoma, then, but FL is the most common indolent, slow-growing lymphoma, so a lot of it applies to FL).
The questions:
Can the “Chemo-Free” R2 Regimen replace Chemoimmunotherapy?
Can Obinutuzumab replace Rituximab?
Should patients receive Maintenance therapy?
The answers?
Well, if you were expecting a simple "Yes/No" answer, you haven't been reading about Follicular Lymphoma too much. There are a lot of "maybe" or "it depends" answers here. R-squared is an alternative to traditional chemo, but not in all cases. It is effective, and does have different side effects than chemo, but not necessarily fewer of them. Obinutuzumab is a good alternative for some patients, but Rituxan still works fine, and there's no difference in Overall Survival between them. And maintenance? I'm not even going to bother answering that one, except to say that, yes, sometimes it's a good thing.
So that's the state of were we are -- lots of questions that still need answers.
Or do they?
You can look at this as being a frustrating lack of definite answers, which is understandable.
Or you can look at it as our having lots of choices. To me, I take comfort in knowing that there are lots of options for me. Rituxan has a way of not working after a while if patients get too much of it. there's some suggestion that Obinutuzumab might work for those patients.
See? Options are good.
The other one to share is called "Follicular Lymphoma: Recent and Emerging Therapies, Treatment Strategies, and Remaining Unmet Needs," published a few months ago in The Oncologist. (Thanks to reader Christine for sharing the link with me.)
Unlike the first one, this article is meant to be comprehensive, giving generalist oncologist (not lymphoma specialists) an overview of Follicular Lymphoma: statistics about who gets it, how it is staged and risk-stratified, and how patients at various places in their FL experience can be treated (newly diagnosed with no symptoms, newly diagnosed with some symptoms, previously treated, etc.).
It also has a pretty good list of treatments that currently in trials -- pathway inhibitors, bispecifics, antibody-drug conjugates. You can read about some of them here and here, if you want a little more detail. If that first article is hopeful because it suggests we have lots of options right now, then this one is super-hopeful because it shows that there are lots of options that might be available to us in the near future.
Of course, it also describes some of the challenges that we face, too -- effective treatments that also mess with our Quality of Life, especially if we need to take multiple treatments over many years (which is the case for a lot of us); we're still unsure of the best sequence for treatments -- which comes first, and after that stops working, what to try next, etc. And difficulty in figuring out which patients are likely to transform, or to need treatment within 2 years after their first treatment (EFS24).
So there are still lots of challenges out there, but lots to be happy about right now, and lots to be hopeful about in the future. I look back at the state of the field in 2008, and I'm amazed at how far we've come since then (there have been 12 treatments for Follicular Lymphoma approved by the FDA in the 12 years since I was diagnosed. How cool is that?)
Stay educated, everyone. But mostly, stay hopeful.
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