Last night, I went to an "Ask the Doctor" event sponsored by the Lymphoma Research Foundation. It's one of the many Education Programs that LRF sponsors. For this event, local lymphoma patients gathered in a hotel conference room to hear from a doctor about lymphoma.
It was, overall, a mixed experience for me, but I do think it's a worthwhile one. If there is an event near you, I suggest you check it out.
This event took place near the hospital where I see my oncologist. (I have an appointment next week, by the way, so I'll have an update on my health in a week or so.) It was an OK location, though the parking garage was tiny and cramped and I dented my car trying to get through it when I arrived. So I went into the event in a bad mood -- I think it's only fair to put that out there. Follicular Lymphoma is an emotional disease, after all.
(I say that half jokingly, but I was kind of surprised to feel a little anxious when I was on my way there. I read and write and think about Follicular Lymphoma literally every day. But going to an event about lymphoma had me just the slightest bit on edge. Maybe that's why I did such a bad job driving in the hotel parking garage.)
We were given dinner, which was very nice, since the event started at 6:00pm. The speaker was a lymphoma expert and professor at the medical school that is connected to the hospital.
He did a good job, but if I have a big criticism, it's that he over-simplified things. His presentation began with on overview of lymphoma -- the different types, their causes, their symptoms, their treatments, etc. To be fair, he had about 45 minutes to give the basics for about 60 different diseases, and he was speaking to about 20 people, and all of us had different types of lymphoma and were at different points in our lives as patients (some seemed newly diagnosed, some, like me, were diagnosed 10+ years ago.) Pretty hard to say something that will satisfy so many needs (I know from experience), so the easiest thing to do is be as basic as possible and make sure that everyone understands what you're saying.
The downside of that is that you can over-simplify. And I think that's what happened. So, for example, he did talk about indolent (slow-growing) lymphomas, and of course, FL is one of them. But he painted the picture for indolent lymphomas as a lot rosier than I would, kind of downplaying some of the side effects of treatments, and pointing out that most people with FL or other indolent cancers may "die with it, rather than of it." All of that is true. But there was no mention at all of transformation or EFS24. Those FL variations affect a pretty significant number of FL patients. If the idea was to give an overview to people, leaving out the difficult stuff seems unfair.
And, again, I admit that he had a tough job to do in 45 minutes. Lots of info, for lots of different people, in a short amount of time.
And I also admit that, given what I do, a "basics" presentation was going to frustrate me. I need to hear some more advanced stuff. That just wasn't the purpose of this event.
All that said (and despite denting my car), there were some good things that came from the event. there were lots of things he said that I would have said differently (more clearly, I think, and maybe less simply), but there were some places where he did a good job of making sure patients understood some very important ideas.
He pointed out that one of the difficulties of having indolent lymphoma is trying to explain it to family and friends. That's a really insightful point. People hear "cancer" and don't understand "watch and wait." And so they think the cancer isn't "serious" or even isn't "a real cancer." There needs to be more done for patients to prepare them for this.
He also did a good job of describing things like "palliative care," which is becoming more of an issue in the oncology community. People associate the term with end-of-life care, but palliative specialists help with pain and comfort at all stages of a cancer patient's disease, nit just when treatment options are exhausted. That's another thing patients need to be aware of.
Probably the most valuable part of the event was the question and answer period -- the whole point of an "Ask the Doctor" event. If the presentation part of things was too basic and simple, this was where the doctor got to really get specific and specialized. People had some very specific questions about their own situations, and he answered them well (based on the reaction I saw from the patients, who seemed satisfied with the answers).
So, overall, there were some things I wasn't crazy about (another one -- there was time for "networking" on the schedule, but it wasn't really set up for talking to any other patients, which is too bad. That's always the best part about being with other patients.)
That I said, I'm happy I went, and I recommend you go to a similar event if you have the chance. (Click here for other LRF events.) You might learn something, and you'll have the chance to ask questions of an expert who may give you a new perspective on things.
(Plus, I got a nice sandwich with bacon and avocado in it, plus a big chocolate cookie. that didn't make up for the dented car, but it came close.)
Wednesday, January 29, 2020
Friday, January 24, 2020
Live Your Life
I have some advice. It's probably especially good for people who were diagnosed recently, but it's a good reminder for all of us:
Live your life.
********************
Last night, I saw my son for the first time in almost a month. He had been away in Peru, working on a project in the rain forest. He studies environmental science in school, and had the chance to go do some work down there for a few weeks.
My son has been obsessed with the South American rain forest since he was about 3 years old, when he started watching videos and reading books about the area. To have the chance to actually go down there was something he just couldn't pass up. My wife and I were all for it. We'd both had the chance to travel when we were younger, and we know how great it is to see a world, and meet people, unlike what and who you encounter in your every day life.
So we've been hearing stories for the last few hours. He saw animals he had only seen in books -- macaws and tamarins and butterflies. He ate plantains and cacao that he picked from trees and fish that he pulled from a river. He was bitten by a fire ant and stung by sweat bees and stalked by a puma. He met people from all over the world at a research center and got beaten by them in volleyball. He stayed with some friendly folks in a rain forest community and got beaten by them in soccer. He came back with stories and pictures and fell asleep before he could tell us and show us even half of it all.
(I've had readers from about 80 countries, but I don't think I've had any from Peru. If you're out there, based on the photos I saw and the stories I heard, you have a beautiful country and wonderful people. Thanks for taking care of my son.)
I'm so glad he went. Obviously, millions of people live in that part of Peru, and his experience was just day-to-day life for them. But it's the complete opposite of his own life, and as strange as it might sound to some, I know it takes some courage to do something like that. I live about two hours from New York City, and when I'm in Times Square, I'm annoyed at all of the people just staring and taking pictures of neon signs. I have to remind myself, as I listen to people around me speaking a dozen different languages, that maybe their lives are the complete opposite of Times Square. It took courage for them to get on a plane and go to a city with millions of people.
********************
All of this took me back, strangely, to when I was first diagnosed.
The first month or two after diagnosis was a blur. Doctors appointments and tests, worry and fear and uncertainty. For a Follicular Lymphoma patient like me, who had very few symptoms, life was actually kind of "normal," at least in what I was physically able to do. I was watching and waiting, not dealing with treatment or its side effects. I was going to work, because work was a good distraction from it all.
But after things settled down after a couple of months, and I had a better idea of what I was going to be dealing with, I got back into my old routine of work and family life. But something had changed. How could it NOT change? A cancer diagnosis is always going to change you.
What had changed was that I found myself saying No a lot more than I used to.
I like my job, a lot, and I'm lucky enough to have a job that gives me lots of opportunities to do things that I haven't done before. And I would always say Yes to those opportunities. I like new challenges.
But after I was diagnosed, I started saying No. It wasn't that I couldn't do the things I was being asked. It was more that I was afraid that maybe, possibly, in the future, I might not be able to do those things. Why say Yes to something when, six months into it, I might have to stop doing it because watch and wait is over and I need treatment?
And then one day, after looking at other people doing the interesting things I could have been doing, I played this out in my mind. I said No to X because I might need treatment someday. So if I said No to that, maybe I should say No to Y, because that could also affect X. And if I say No to X and Y, I should really say No to Z, too.....As I thought it out, I came to one conclusion -- there was really no point in even getting out of bed in the morning. Anything I do could be disrupted by the possibility that maybe, sometime in the future, something could happen and it could ruin my plans and everyone else's. The only logical thing to do was to just stay in bed.
Of course, that's ridiculous. I still had no idea, just a few months after I was diagnosed, of where my disease, and my life, were headed. But I also knew that, whether it was months or years of life ahead of me, I didn't want to spend it lying in bed worrying. That was no way to live a life.
So I started saying Yes to more things. Not to everything -- I still, 12 years later, "play the Cancer card" to get out of things I don't want to do. But I don't let cancer be an excuse to keep me from doing things that will give me joy.
Of course, for many, cancer and its treatment and side effects really do keep us from doing things. Obviously, I wouldn't want anyone to harm themselves doing something that they aren't able to do.
But for many of us, the barriers aren't physical or financial -- they're emotional.
And I think that's especially true when we're first diagnosed, and we just don't know what the future holds. Better to say No or step lightly than take a chance on the future.
So my advice is this -- Live Your Life.
Maybe it's traveling to a rain forest, or to New York City. Maybe it's taking a project on at work, or at church, or at the kids' school. Maybe it's going to the gym more or eating less ice cream. Maybe it's vowing to enjoy yourself, and eating more ice cream.
Whatever it is, find the courage to do it. Don't let uncertainty hold you back. You're here now. Do the things that bring you joy now.
And when you get back, share the photos and the stories.
Live your life.
********************
Last night, I saw my son for the first time in almost a month. He had been away in Peru, working on a project in the rain forest. He studies environmental science in school, and had the chance to go do some work down there for a few weeks.
My son has been obsessed with the South American rain forest since he was about 3 years old, when he started watching videos and reading books about the area. To have the chance to actually go down there was something he just couldn't pass up. My wife and I were all for it. We'd both had the chance to travel when we were younger, and we know how great it is to see a world, and meet people, unlike what and who you encounter in your every day life.
So we've been hearing stories for the last few hours. He saw animals he had only seen in books -- macaws and tamarins and butterflies. He ate plantains and cacao that he picked from trees and fish that he pulled from a river. He was bitten by a fire ant and stung by sweat bees and stalked by a puma. He met people from all over the world at a research center and got beaten by them in volleyball. He stayed with some friendly folks in a rain forest community and got beaten by them in soccer. He came back with stories and pictures and fell asleep before he could tell us and show us even half of it all.
(I've had readers from about 80 countries, but I don't think I've had any from Peru. If you're out there, based on the photos I saw and the stories I heard, you have a beautiful country and wonderful people. Thanks for taking care of my son.)
I'm so glad he went. Obviously, millions of people live in that part of Peru, and his experience was just day-to-day life for them. But it's the complete opposite of his own life, and as strange as it might sound to some, I know it takes some courage to do something like that. I live about two hours from New York City, and when I'm in Times Square, I'm annoyed at all of the people just staring and taking pictures of neon signs. I have to remind myself, as I listen to people around me speaking a dozen different languages, that maybe their lives are the complete opposite of Times Square. It took courage for them to get on a plane and go to a city with millions of people.
********************
All of this took me back, strangely, to when I was first diagnosed.
The first month or two after diagnosis was a blur. Doctors appointments and tests, worry and fear and uncertainty. For a Follicular Lymphoma patient like me, who had very few symptoms, life was actually kind of "normal," at least in what I was physically able to do. I was watching and waiting, not dealing with treatment or its side effects. I was going to work, because work was a good distraction from it all.
But after things settled down after a couple of months, and I had a better idea of what I was going to be dealing with, I got back into my old routine of work and family life. But something had changed. How could it NOT change? A cancer diagnosis is always going to change you.
What had changed was that I found myself saying No a lot more than I used to.
I like my job, a lot, and I'm lucky enough to have a job that gives me lots of opportunities to do things that I haven't done before. And I would always say Yes to those opportunities. I like new challenges.
But after I was diagnosed, I started saying No. It wasn't that I couldn't do the things I was being asked. It was more that I was afraid that maybe, possibly, in the future, I might not be able to do those things. Why say Yes to something when, six months into it, I might have to stop doing it because watch and wait is over and I need treatment?
And then one day, after looking at other people doing the interesting things I could have been doing, I played this out in my mind. I said No to X because I might need treatment someday. So if I said No to that, maybe I should say No to Y, because that could also affect X. And if I say No to X and Y, I should really say No to Z, too.....As I thought it out, I came to one conclusion -- there was really no point in even getting out of bed in the morning. Anything I do could be disrupted by the possibility that maybe, sometime in the future, something could happen and it could ruin my plans and everyone else's. The only logical thing to do was to just stay in bed.
Of course, that's ridiculous. I still had no idea, just a few months after I was diagnosed, of where my disease, and my life, were headed. But I also knew that, whether it was months or years of life ahead of me, I didn't want to spend it lying in bed worrying. That was no way to live a life.
So I started saying Yes to more things. Not to everything -- I still, 12 years later, "play the Cancer card" to get out of things I don't want to do. But I don't let cancer be an excuse to keep me from doing things that will give me joy.
Of course, for many, cancer and its treatment and side effects really do keep us from doing things. Obviously, I wouldn't want anyone to harm themselves doing something that they aren't able to do.
But for many of us, the barriers aren't physical or financial -- they're emotional.
And I think that's especially true when we're first diagnosed, and we just don't know what the future holds. Better to say No or step lightly than take a chance on the future.
So my advice is this -- Live Your Life.
Maybe it's traveling to a rain forest, or to New York City. Maybe it's taking a project on at work, or at church, or at the kids' school. Maybe it's going to the gym more or eating less ice cream. Maybe it's vowing to enjoy yourself, and eating more ice cream.
Whatever it is, find the courage to do it. Don't let uncertainty hold you back. You're here now. Do the things that bring you joy now.
And when you get back, share the photos and the stories.
Sunday, January 19, 2020
"How Long Do I Have?"
"How long do I have?"
That's one of the first tings cancer patients ask after a diagnosis. (I think we all know that.) And it would be great to have an easy answer to that question. Or maybe not. Maybe it's better to not know? Or it would only be good if we liked the answer?
Whatever the case, it's a question that we all ask at some point, and the answer we get can have a huge effect on our lives -- whether it's a good or bad answer, or an accurate or inaccurate one.
The company GoodRx set up a website to help cancer patients answer that question. Their hope is that they can give the answer in such a way that it helps patients.
They failed. It doesn't help.
That's my opinion, anyway, and the buzz I see on Twitter from other cancer patients says the same thing.
The site is called cancersurvivalrates.com, and it asks some pretty simple questions -- what type of cancer you're interested in, your gender, age, cancer stage, and when you were diagnosed. For some cancers (like NHL) you can give a sub-type (like Follicular Lymphoma). You are then presented with 5 year, 2 year, and 1 year survival rates.
And all that is good. In fact, my results are good -- above 90% survival for all three of the time categories. They also present it in terms of 10s -- "About 9 out of 10 people survive." That's one of their big innovations -- they think people can understand that better than some other ways of presenting the information.
They also see this as a "conversation starter." Patients should take this information to their oncologists and ask "What do you think about my prognosis?"
There are so many problems with this site.
First of all, an article that describes the site quotes a couple of people who helped develop it. One is a doctor. Based on what they have to say, I think they just plain don't understand patients and the way they think. A patient may very well find this site and ask those expected questions. But then, who is around to provide the answers? If I don't have another appointment for 6 weeks, does that mean I'm turning all of that over in my head, thinking the worst, until I get a chance to talk to my oncologist again? Heck -- I was actually in a hospital the first time I saw statistics like that, and it threw me into a two week depression. I was surrounded by health professionals. But I had been diagnosed a week before -- I was in no position to think rationally about what I was reading. That's when patients are most likely to look at something like this -- soon after they are diagnosed, when they are looking for answers, but can't think straight about what to ask or who to ask.
Then there's the site itself. They say they want to make things simpler for patients, but of course, with something like cancer, "simple" means it leaves out too much. Every cancer patient is different. We have co-morbidities, for example -- other health issues that can affect our survival. This doesn't account for any of that.
Some other problems:
It gives a 1, 2, or 5 year survival rate. For something like Follicular Lymphoma, a longer OS rate would be much more helpful -- something like 10 years.
In entering information, you can give a range from "just diagnosed" to "diagnosed 2 years ago." Nothing longer than that. It's kind of useless for someone like me.
I have no idea if the rates are even accurate. But if they are even just the tiniest bit off, the whole site should be shut down and re-checked. One woman with breast cancer posted a photo of her results, and it gave her survival rate as "107%." Another had a longer survival at 2 years than at 5 years, which makes no sense -- people don't come back to life after 3 years. Small technical issues make me ask if the information I received is correct. Maybe it's more optimistic than it should be? For a newly diagnosed patient, a worse survival rate than it actually is would be devastating. So would a better one, when they had that conversation with their doctor and found out "the truth."
Were patients even involved in creating this?
And apart from problems with the site itself, there's the whole issue of whether or not patients even understand what survival rates mean. I've written about this a lot in the past -- like I did here -- so I won't get too much into it. But "overall survival" is a complicated thing, and doesn't really reflect much of anything about anyone's individual experience. And since it's a statistic made up of what has happened to other patients in the past, it doesn't reflect what might happen in the future. New treatments are being discovered, tested, and approved fairly quickly. What happens in the next five years might completely change the game for a lot of us, no matter what this website says.
So my advice for all of this?
Be careful about looking at statistics. Some people take comfort in them. Others don't, including me -- the times I have been really depressed about being a cancer patient were all triggered by looking at numbers. Look at this site, if you must, out of curiosity, but don't take it as a final word about anything. Treat like you would treat an internet quiz about which Disney Princess you are. Maybe accurate, maybe not, but something interesting to talk about for a few minutes and then forget.
(And if you're curious, I'm most like Belle from Beauty and the Beast. I love to read, and I look great in yellow.)
That's one of the first tings cancer patients ask after a diagnosis. (I think we all know that.) And it would be great to have an easy answer to that question. Or maybe not. Maybe it's better to not know? Or it would only be good if we liked the answer?
Whatever the case, it's a question that we all ask at some point, and the answer we get can have a huge effect on our lives -- whether it's a good or bad answer, or an accurate or inaccurate one.
The company GoodRx set up a website to help cancer patients answer that question. Their hope is that they can give the answer in such a way that it helps patients.
They failed. It doesn't help.
That's my opinion, anyway, and the buzz I see on Twitter from other cancer patients says the same thing.
The site is called cancersurvivalrates.com, and it asks some pretty simple questions -- what type of cancer you're interested in, your gender, age, cancer stage, and when you were diagnosed. For some cancers (like NHL) you can give a sub-type (like Follicular Lymphoma). You are then presented with 5 year, 2 year, and 1 year survival rates.
And all that is good. In fact, my results are good -- above 90% survival for all three of the time categories. They also present it in terms of 10s -- "About 9 out of 10 people survive." That's one of their big innovations -- they think people can understand that better than some other ways of presenting the information.
They also see this as a "conversation starter." Patients should take this information to their oncologists and ask "What do you think about my prognosis?"
There are so many problems with this site.
First of all, an article that describes the site quotes a couple of people who helped develop it. One is a doctor. Based on what they have to say, I think they just plain don't understand patients and the way they think. A patient may very well find this site and ask those expected questions. But then, who is around to provide the answers? If I don't have another appointment for 6 weeks, does that mean I'm turning all of that over in my head, thinking the worst, until I get a chance to talk to my oncologist again? Heck -- I was actually in a hospital the first time I saw statistics like that, and it threw me into a two week depression. I was surrounded by health professionals. But I had been diagnosed a week before -- I was in no position to think rationally about what I was reading. That's when patients are most likely to look at something like this -- soon after they are diagnosed, when they are looking for answers, but can't think straight about what to ask or who to ask.
Then there's the site itself. They say they want to make things simpler for patients, but of course, with something like cancer, "simple" means it leaves out too much. Every cancer patient is different. We have co-morbidities, for example -- other health issues that can affect our survival. This doesn't account for any of that.
Some other problems:
It gives a 1, 2, or 5 year survival rate. For something like Follicular Lymphoma, a longer OS rate would be much more helpful -- something like 10 years.
In entering information, you can give a range from "just diagnosed" to "diagnosed 2 years ago." Nothing longer than that. It's kind of useless for someone like me.
I have no idea if the rates are even accurate. But if they are even just the tiniest bit off, the whole site should be shut down and re-checked. One woman with breast cancer posted a photo of her results, and it gave her survival rate as "107%." Another had a longer survival at 2 years than at 5 years, which makes no sense -- people don't come back to life after 3 years. Small technical issues make me ask if the information I received is correct. Maybe it's more optimistic than it should be? For a newly diagnosed patient, a worse survival rate than it actually is would be devastating. So would a better one, when they had that conversation with their doctor and found out "the truth."
Were patients even involved in creating this?
And apart from problems with the site itself, there's the whole issue of whether or not patients even understand what survival rates mean. I've written about this a lot in the past -- like I did here -- so I won't get too much into it. But "overall survival" is a complicated thing, and doesn't really reflect much of anything about anyone's individual experience. And since it's a statistic made up of what has happened to other patients in the past, it doesn't reflect what might happen in the future. New treatments are being discovered, tested, and approved fairly quickly. What happens in the next five years might completely change the game for a lot of us, no matter what this website says.
So my advice for all of this?
Be careful about looking at statistics. Some people take comfort in them. Others don't, including me -- the times I have been really depressed about being a cancer patient were all triggered by looking at numbers. Look at this site, if you must, out of curiosity, but don't take it as a final word about anything. Treat like you would treat an internet quiz about which Disney Princess you are. Maybe accurate, maybe not, but something interesting to talk about for a few minutes and then forget.
(And if you're curious, I'm most like Belle from Beauty and the Beast. I love to read, and I look great in yellow.)
Wednesday, January 15, 2020
12 Years
Today is my 12 year diagnosiversary. I was diagnosed with Follicular Lymphoma 12 years ago today.
That means today is also the 10 year anniversary of my first Rituxan treatment. I had 6 weekly rounds of Rituxan, and I haven't needed any treatment since then.
It's a good day.
Let me give you a sense of where my mind has been lately as I have prepared for this day.
**********************
I'm always aware of my diagnosiversary coming up. Probably sometime in October, I start thinking "I need to stop saying I was diagnosed 11+ years ago and start saying I was diagnosed almost 12 years ago." That number is kind of always on my mind. It's probably because I tell my story so much, in so many places.
And probably sometime in December, I start to get reflective and think about what has happened in the last year, and where my mind is in terms of being a Follicular Lymphoma patient. Sometimes a song lyric will trigger some ideas, or an event, or even just thinking about the symbolism of the number of years I've been dealing with this.
But this year? Nothing.
I just couldn't think about anything that truly represented how I feel about having been diagnosed 12 years ago, and being 10 years out of treatment.
Some numbers do keep coming into my head. Like "10 years after treatment." There are some cancers that a patient is considered "cured" of if they have been out of treatment for 10 years. Not Follicular Lymphoma, obviously. There's always a chance that it's coming back, even after 10 years. At least, you're not going to find a group of lymphoma specialists who are willing to say that it's cured. And I tend to agree with them. So I couldn't really write about that -- too depressing. ("Hooray for 10 years! Still waiting for it to come back! Whoopee!")
And that "12 years after diagnosis." There's some hope there. I've read in a couple of places that Transformation is unheard of after 14 (or maybe 15) years. So I have that to look forward to. But that's not something to celebrate this year. Just a happy little smile that I'm a little closer to putting that worry out of my head.
It doesn't really make much sense to spend a celebratory day by discussing the things that I'm NOT -- not cured, and not curable, not transformed, but not really out the woods on that, either. It's that awful state of Living in Between.
**********************
I know I can't really write a diagnosiversary post by reflecting on negative things. That just doesn't make any sense. I mean, every year after diagnosis is another year I'm alive. There's so much to celebrate there. I always remind my wife that we will be "celebrating my diagnosiversary," and she always asks that we use a word other than "celebrate." And I always remind her that we're not celebrating the day I was diagnosed -- we're celebrating the 4383 days since I was diagnosed. That's a lot of days.
I looked back at last year's diagnosiversary post, and, interestingly enough, I said the same thing -- I couldn't really think of a theme or a lesson or a brilliant thing to say.
Two years ago, for my 10th, I had a lot to say. That post was all about emotions, and all I had learned about the emotional life of a Follicular Lymphoma patient. One of those emotions was Fear. It's always there, for all of us. Sometimes it's a big roaring Lion who wakes you up in the middle of the night. Sometimes it's a tiny mosquito, buzzing in your ear, something you can barely hear. But it's always there.
So now I'm looking at two years of diagnosiversaries where I'm not sure what to write about, and a new Fear comes creeping in:
Complacency.
The idea that, since everything is going OK, then it will keep being OK forever.
In other words, maybe I'm not being afraid enough? Maybe after hitting that 10 year diagnosis mark a couple of years ago, and then another 10 year mark this year of not needing treatment, I'm feeling out of the woods? Everything is OK, and it will always be OK? I'm invincible now?
Probably not. That little mosquito of fear is still buzzing in my ear every now and then, but maybe I've stopped swatting at it so much. Maybe I've learned to just live with the buzzing.
I really don't want that to happen. I don't want to be complacent. I don't want to just expect that everything is going to be OK.
Which isn't to say I like the Fear, either. But, in an odd way, maybe the Fear is comforting?
*************************
Last week, there was a small debate on one of the online Lymphoma groups I am a part of. One other group member insisted that CAR-T had cured his FL. A few other people very gently pointed out that, while CAR-T holds a lot of promise, it's probably a little early to say it has cured anyone. And given its track record, it's hard to say it is THE cure for FL. The original poster said that, basically, he is declaring it a cure, and if you disagree, that's fine, but FL patients need Hope, and the idea of a cure is the thing that will give people Hope.
I understand the impulse, but I have mixed feelings about it all.
As I said a few weeks ago, I'm not sure that, even knowing that there is a cure for some of us, I'd be able to fully believe that there is a cure for ME. I haven't even been NED (No Evidence of Disease), for crying out loud. It's always going to be in the back of my mind that it might come back.
But, at the same time, I'm fearing that I'm complacent.
More "living in between," I guess.
That's what it all comes down to, isn't it? That's the life of a Follicular Lymphoma patient. Never really being able to say, for sure, that I'm one thing or another.
12 years of this stuff.
***************************
And then, a few days ago, I wrote about an oncologist who has been going to the ASH conference for 30 years. He wrote about how the conference itself has changed (and hasn't changed) and how treatment for Lymphoma has changed.
I immediately went back in my mind about 11 and three-quarter years.
It's interesting to read the early days of this blog. Lots of stuff about doctor appointments, and then random thoughts to keep my mind busy. But one day, a couple of months after diagnosis, I wrote about "Non-Hodgkin's in the News." It was the first time I had written about research on NHL. It certainly wasn't the last. Almost 1450 posts, and writing about research on Follicular Lymphoma makes up a pretty big chunk of them.
That first post discussed the rise in survival rates for NHL patients over 10 years (1997 to 2007), with credit being given to Rituxan (approved in 1997). It was the first time I had mentioned Rituxan in the blog. Two months after diagnosis, and I still had no real idea what treatments would be available when I needed them. But there it was, in the first sentence of the post, the model for so many other posts to follow: "A hopeful story in the news about Non-Hodgkin's Lymphoma."
News brings hope. That's what it's always been about for me.
And then the last sentence in that post: "Rituxin is likely to be a part of my future."
I certainly got that right.
That oncologist reflecting on 30 years of ASH attendance, and all that has changed in Lymphoma research (and all that has stayed the same) has me doing some of my own reflecting on all that has changed in 12 years.
It's ironic that, just as I was being diagnosed, experts were cheering over improvements in survival rates, thanks to Rituxan. Because now, 12 years later, we have a whole bunch of new treatments, many of them legitimate alternatives to chemotherapy, and survival rates have....stayed the same.
Don't get me wrong -- I'm happy that Rituxan improved things. The day I was diagnosed, Wikipedia told me that Overall Survival for FL was 8-10 years. These days, Wkipedia says 10-15 years, but lots of recent research puts it closer to 18-20 years. The problem is that OS is a measurement of a median -- the middle of a group being measured, and not enough people are dying to be able to reach a median in long-term studies. So 10-15 years is the most recent official number, but 18-20 is probably going to be official sometime in the near future.
But newer treatments aren't giving us much an an improvement in Overall Survival. Still nothing that works on enough people to be called a "cure." Lots of improvements in the time needed between treatments. But we haven't, by that measure, really progressed too far in 12 years.
*******************************
So where does that leave us?
Still "in between"?
Unfortunately, yes, still "in between." Lots of new treatments, but they aren't necessarily keeping us alive much longer than the ones we had in 2008.
When you're in between two things, you have a choice. You can turn one way or the other.
Looking back to a blog post from March 11, 2008, that started "A hopeful story in the news about Non-Hodgkin's Lymphoma," it's clear which way I always turn.
Toward hope.
There will always be something better out there. I will keep searching for it, and sharing it.
That's what I take away from 12 years of doing this. That's the lesson.
Turn towards hope.
Thanks for coming along for the ride. I'm looking forward to another year.
That means today is also the 10 year anniversary of my first Rituxan treatment. I had 6 weekly rounds of Rituxan, and I haven't needed any treatment since then.
It's a good day.
Let me give you a sense of where my mind has been lately as I have prepared for this day.
**********************
I'm always aware of my diagnosiversary coming up. Probably sometime in October, I start thinking "I need to stop saying I was diagnosed 11+ years ago and start saying I was diagnosed almost 12 years ago." That number is kind of always on my mind. It's probably because I tell my story so much, in so many places.
And probably sometime in December, I start to get reflective and think about what has happened in the last year, and where my mind is in terms of being a Follicular Lymphoma patient. Sometimes a song lyric will trigger some ideas, or an event, or even just thinking about the symbolism of the number of years I've been dealing with this.
But this year? Nothing.
I just couldn't think about anything that truly represented how I feel about having been diagnosed 12 years ago, and being 10 years out of treatment.
Some numbers do keep coming into my head. Like "10 years after treatment." There are some cancers that a patient is considered "cured" of if they have been out of treatment for 10 years. Not Follicular Lymphoma, obviously. There's always a chance that it's coming back, even after 10 years. At least, you're not going to find a group of lymphoma specialists who are willing to say that it's cured. And I tend to agree with them. So I couldn't really write about that -- too depressing. ("Hooray for 10 years! Still waiting for it to come back! Whoopee!")
And that "12 years after diagnosis." There's some hope there. I've read in a couple of places that Transformation is unheard of after 14 (or maybe 15) years. So I have that to look forward to. But that's not something to celebrate this year. Just a happy little smile that I'm a little closer to putting that worry out of my head.
It doesn't really make much sense to spend a celebratory day by discussing the things that I'm NOT -- not cured, and not curable, not transformed, but not really out the woods on that, either. It's that awful state of Living in Between.
**********************
I know I can't really write a diagnosiversary post by reflecting on negative things. That just doesn't make any sense. I mean, every year after diagnosis is another year I'm alive. There's so much to celebrate there. I always remind my wife that we will be "celebrating my diagnosiversary," and she always asks that we use a word other than "celebrate." And I always remind her that we're not celebrating the day I was diagnosed -- we're celebrating the 4383 days since I was diagnosed. That's a lot of days.
I looked back at last year's diagnosiversary post, and, interestingly enough, I said the same thing -- I couldn't really think of a theme or a lesson or a brilliant thing to say.
Two years ago, for my 10th, I had a lot to say. That post was all about emotions, and all I had learned about the emotional life of a Follicular Lymphoma patient. One of those emotions was Fear. It's always there, for all of us. Sometimes it's a big roaring Lion who wakes you up in the middle of the night. Sometimes it's a tiny mosquito, buzzing in your ear, something you can barely hear. But it's always there.
So now I'm looking at two years of diagnosiversaries where I'm not sure what to write about, and a new Fear comes creeping in:
Complacency.
The idea that, since everything is going OK, then it will keep being OK forever.
In other words, maybe I'm not being afraid enough? Maybe after hitting that 10 year diagnosis mark a couple of years ago, and then another 10 year mark this year of not needing treatment, I'm feeling out of the woods? Everything is OK, and it will always be OK? I'm invincible now?
Probably not. That little mosquito of fear is still buzzing in my ear every now and then, but maybe I've stopped swatting at it so much. Maybe I've learned to just live with the buzzing.
I really don't want that to happen. I don't want to be complacent. I don't want to just expect that everything is going to be OK.
Which isn't to say I like the Fear, either. But, in an odd way, maybe the Fear is comforting?
*************************
Last week, there was a small debate on one of the online Lymphoma groups I am a part of. One other group member insisted that CAR-T had cured his FL. A few other people very gently pointed out that, while CAR-T holds a lot of promise, it's probably a little early to say it has cured anyone. And given its track record, it's hard to say it is THE cure for FL. The original poster said that, basically, he is declaring it a cure, and if you disagree, that's fine, but FL patients need Hope, and the idea of a cure is the thing that will give people Hope.
I understand the impulse, but I have mixed feelings about it all.
As I said a few weeks ago, I'm not sure that, even knowing that there is a cure for some of us, I'd be able to fully believe that there is a cure for ME. I haven't even been NED (No Evidence of Disease), for crying out loud. It's always going to be in the back of my mind that it might come back.
But, at the same time, I'm fearing that I'm complacent.
More "living in between," I guess.
That's what it all comes down to, isn't it? That's the life of a Follicular Lymphoma patient. Never really being able to say, for sure, that I'm one thing or another.
12 years of this stuff.
***************************
And then, a few days ago, I wrote about an oncologist who has been going to the ASH conference for 30 years. He wrote about how the conference itself has changed (and hasn't changed) and how treatment for Lymphoma has changed.
I immediately went back in my mind about 11 and three-quarter years.
It's interesting to read the early days of this blog. Lots of stuff about doctor appointments, and then random thoughts to keep my mind busy. But one day, a couple of months after diagnosis, I wrote about "Non-Hodgkin's in the News." It was the first time I had written about research on NHL. It certainly wasn't the last. Almost 1450 posts, and writing about research on Follicular Lymphoma makes up a pretty big chunk of them.
That first post discussed the rise in survival rates for NHL patients over 10 years (1997 to 2007), with credit being given to Rituxan (approved in 1997). It was the first time I had mentioned Rituxan in the blog. Two months after diagnosis, and I still had no real idea what treatments would be available when I needed them. But there it was, in the first sentence of the post, the model for so many other posts to follow: "A hopeful story in the news about Non-Hodgkin's Lymphoma."
News brings hope. That's what it's always been about for me.
And then the last sentence in that post: "Rituxin is likely to be a part of my future."
I certainly got that right.
That oncologist reflecting on 30 years of ASH attendance, and all that has changed in Lymphoma research (and all that has stayed the same) has me doing some of my own reflecting on all that has changed in 12 years.
It's ironic that, just as I was being diagnosed, experts were cheering over improvements in survival rates, thanks to Rituxan. Because now, 12 years later, we have a whole bunch of new treatments, many of them legitimate alternatives to chemotherapy, and survival rates have....stayed the same.
Don't get me wrong -- I'm happy that Rituxan improved things. The day I was diagnosed, Wikipedia told me that Overall Survival for FL was 8-10 years. These days, Wkipedia says 10-15 years, but lots of recent research puts it closer to 18-20 years. The problem is that OS is a measurement of a median -- the middle of a group being measured, and not enough people are dying to be able to reach a median in long-term studies. So 10-15 years is the most recent official number, but 18-20 is probably going to be official sometime in the near future.
But newer treatments aren't giving us much an an improvement in Overall Survival. Still nothing that works on enough people to be called a "cure." Lots of improvements in the time needed between treatments. But we haven't, by that measure, really progressed too far in 12 years.
*******************************
So where does that leave us?
Still "in between"?
Unfortunately, yes, still "in between." Lots of new treatments, but they aren't necessarily keeping us alive much longer than the ones we had in 2008.
When you're in between two things, you have a choice. You can turn one way or the other.
Looking back to a blog post from March 11, 2008, that started "A hopeful story in the news about Non-Hodgkin's Lymphoma," it's clear which way I always turn.
Toward hope.
There will always be something better out there. I will keep searching for it, and sharing it.
That's what I take away from 12 years of doing this. That's the lesson.
Turn towards hope.
Thanks for coming along for the ride. I'm looking forward to another year.
Sunday, January 12, 2020
30 Years of ASH
As most of you know, I like to spend some time in November and December looking at the abstracts for ASH, the American Society of Hematology's annual meeting. Because ASH focuses on blood diseases, there is a lot of research related to Follicular Lymphoma presented at this conference. I like to find abstracts or summaries of research that I find interesting, and after it's over in early December, commentaries from experts (actual experts, not just Cancer Nerds like me) about things that they found significant.
Yesterday, I came across what I thought was a really interesting reflection on ASH. Instead of just looking back at this year's conference, the writer (Dr. John Sweetenham of the UT Southwestern Medical Center in Dallas, Texas) looked at the 30 years he has spent attending ASH conferences, and thinking about how much has changed in that time
I'm in a reflective mood these days (as you'll see next week), so I found it kind of a fascinating trip through time. For one thing, the ASH organizers have smartened up a little. Dr. Sweetenham's first ASH in 1990 was in Boston. More recently, they're held in Orlando, Atlanta, and San Diego. Now, I'm a Boston native, and I love my city, but Boston in December isn't always fun. I can't help thinking that there's a connection between advances in Lymphoma research over the last 10 years, and Lymphoma researchers figuring out that they should meet someplace warm in December. It's a sign of how far the field has advanced recently.
More interesting is how he describes those changes in Lymphoma research. In 1990, the Immunotherapy research was focused on things like attempts at a cancer vaccine, and targeting the CD19 protein. It wouldn't be until 1997 that Rituxan was approved by the FDA, and the world of Follicular Lymphoma treatment changed forever. Interestingly, as he points out, Rituxan targets the CD20 protein on Lymphoma cells. It was only recently that researchers found something that targets CD19 -- that's CAR-T, another potential game-changer for us.
Also interesting is Dr. Sweetenham's observation that the field has not paid enough attention to what he calls the "bigger-picture, societal impacts" of those new and better treatments. This is a discussion that many oncologists would like to have. As wonderful as something like CAR-T could be for our future, it is very expensive. Other, newer treatments are also expensive. He wishes there was more discussion at the meeting about the impact this will have on patients, and on the U.S.'s healthcare model in general. (I certainly agree -- great treatments don't mean much if patients can't afford them, and an extended life that is made worse by financial ruin isn't necessarily a great life.)
There's been quite a bit of change in 30 years, and maybe a lot that has stayed the same. I appreciate Dr. Sweetenham's reflection. It's given me lots to think about, too....
Yesterday, I came across what I thought was a really interesting reflection on ASH. Instead of just looking back at this year's conference, the writer (Dr. John Sweetenham of the UT Southwestern Medical Center in Dallas, Texas) looked at the 30 years he has spent attending ASH conferences, and thinking about how much has changed in that time
I'm in a reflective mood these days (as you'll see next week), so I found it kind of a fascinating trip through time. For one thing, the ASH organizers have smartened up a little. Dr. Sweetenham's first ASH in 1990 was in Boston. More recently, they're held in Orlando, Atlanta, and San Diego. Now, I'm a Boston native, and I love my city, but Boston in December isn't always fun. I can't help thinking that there's a connection between advances in Lymphoma research over the last 10 years, and Lymphoma researchers figuring out that they should meet someplace warm in December. It's a sign of how far the field has advanced recently.
More interesting is how he describes those changes in Lymphoma research. In 1990, the Immunotherapy research was focused on things like attempts at a cancer vaccine, and targeting the CD19 protein. It wouldn't be until 1997 that Rituxan was approved by the FDA, and the world of Follicular Lymphoma treatment changed forever. Interestingly, as he points out, Rituxan targets the CD20 protein on Lymphoma cells. It was only recently that researchers found something that targets CD19 -- that's CAR-T, another potential game-changer for us.
Also interesting is Dr. Sweetenham's observation that the field has not paid enough attention to what he calls the "bigger-picture, societal impacts" of those new and better treatments. This is a discussion that many oncologists would like to have. As wonderful as something like CAR-T could be for our future, it is very expensive. Other, newer treatments are also expensive. He wishes there was more discussion at the meeting about the impact this will have on patients, and on the U.S.'s healthcare model in general. (I certainly agree -- great treatments don't mean much if patients can't afford them, and an extended life that is made worse by financial ruin isn't necessarily a great life.)
There's been quite a bit of change in 30 years, and maybe a lot that has stayed the same. I appreciate Dr. Sweetenham's reflection. It's given me lots to think about, too....
Wednesday, January 8, 2020
Are Dietary Supplements Harmful?
Interesting research from a few weeks ago. We like to think that dietary supplements can hep us, but sometimes they do the opposite for cancer patients, and can actually hurt us.
The article, titled "Dietary Supplement Use During Chemotherapy and Survival Outcomes of Patients With Breast Cancer Enrolled in a Cooperative Group Clinical Trial (SWOG S0221)," lwas published in the Journal of Clinical Oncology, and looked at the use of dietary supplements by breast cancer patients who were being treated with chemotherapy.
The study looked at 1,134 patients, and found (maybe surprisingly) that using antioxidants before and during chemo increased the chances of the cancer coming back after treatment. These included vitamin A, vitamin C, vitamin E, carotenoids (like beta carotene), and Coenzyme Q10. Patients taking antioxidants during chemo had a 41% higher chance of the cancer coming back than those who didn't take them.
Other supplements besides antioxidants were also problematic. Patients taking Vitamin B12, iron, and omego-3 fatty acids also had a greater risk of recurrence and death.
Patients taking a multivitamin seemed unaffected by it.
So what's the deal? Aren't dietary supplements supposed to be healthy?
Yes. Usually. Full disclosure -- I take a multivitamin, vitamin D, and fish oil every day. I don't plan on stopping.
The issue is that the patients in the study were being treated with chemotherapy. While the study called for more research on why exactly these supplements had the effect they did, it might be easy to guess why, in a really general way. Antioxidants help keep cells healthy. Chemo is meant to kill them. There's kind of a basic mis-match there. If you're a cancer patient who is trying to kill cancer cells, it doesn't make sense to take something that helps prevent damage to them. There's no evidence that a supplement can distinguish between healthy cells and cancerous ones.
To be clear -- that's my own observation, not something from the research.
A few important things to consider here.
First, the researchers say that, while the results are interesting, the number of patients in the study who were taking single supplements was pretty small. So while more may have been taking a multivitamin, the amount of (for example) Vitamin E in that multivitamin was much smaller than it would be in a straight Vitamin E supplement. Not many patients were taking those straight supplements. A larger, more focused study would be helpful.
Second, this study obviously focuses on breast cancer, not Follicular Lymphoma. We can't say for sure that the same results apply to our disease. Though if my general idea of why supplements make for worse chemo outcomes is really true, then maybe so?
Third, the study looks at chemotherapy, not other types of treatment like radiation or immunotherapy. There's no evidence that they would hurt, or that they would help, people taking those treatments.
Here's the real lesson, I think -- we should talk to our doctors about the things were are taking. All of them. Prescription medicines, over-the-counter medicines, supplements, herbs that someone recommends, whatever. Because even the medicines or supplements that we take to help us with one condition might have a negative effect on another. Unless we know the way those things interact with each other, we won't know if they're ultimately helping us or hurting us. The best person to ask about that isn't a friend or a Facebook ad or a well-meaning co-worker. It's your doctor.
Now, back to my own supplements. As I said, I take a multivitamin, Vitamin D, and fish oil every day. I don't take any of them because I think they will prevent or cure my cancer. I've been taking a multivitamin for years, and I continue mostly out of habit. I do believe that if I stopped, I'd be fine, especially since I'm being better about eating vegetables and fruit. I've been taking the fish oil for a while, too, mostly for heart health. I could probably stop taking that, too; it hasn't done anything for my blood pressure, which has gone up in the last few years.
Vitamin D? Hmm. I started taking that a while ago, too, but it also wasn't to prevent or cure cancer. I'd been reading about its benefits for lots of conditions, and its importance to general health, so I started taking it, with the encouragement of my doctor. Like the other supplements, the upside seemed bigger than the downside -- they're relatively inexpensive, they might help, and they probably won't hurt. Since I started, there has been some suggestion that Vitamin D levels might have a positive effect for FL patients. But like everything else related to supplements and cancer, there just isn't enough evidence either way to know for sure.
So here's what I do not want to happen. I do not want any of you writing to me and asking me how much fish oil or Vitamin D I take, or what brand of multivitamins I buy. I won't give you an answer. I won't add to the false hope that a certain vitamin D dose will help you. That's not my place to say.
If you want advice about supplements, ask your doctor, She's the best one to get advice from. She'll know about your other conditions, and how supplements and medications will interact with each othr, and what you might need for your general health. And if anyone else offers you advice about supplements and cancer and says they know for sure that something will help, I suggest you read what they say very carefully, ask for real scientific studies to back up the advice (on actual people in clinical trials, not "in vitro" or in test tubes), and then run it by your doctor.
In the meantime, if I do come across any other research that gives answers about how to make us healthy, you can believe I will pass it along.
The article, titled "Dietary Supplement Use During Chemotherapy and Survival Outcomes of Patients With Breast Cancer Enrolled in a Cooperative Group Clinical Trial (SWOG S0221)," lwas published in the Journal of Clinical Oncology, and looked at the use of dietary supplements by breast cancer patients who were being treated with chemotherapy.
The study looked at 1,134 patients, and found (maybe surprisingly) that using antioxidants before and during chemo increased the chances of the cancer coming back after treatment. These included vitamin A, vitamin C, vitamin E, carotenoids (like beta carotene), and Coenzyme Q10. Patients taking antioxidants during chemo had a 41% higher chance of the cancer coming back than those who didn't take them.
Other supplements besides antioxidants were also problematic. Patients taking Vitamin B12, iron, and omego-3 fatty acids also had a greater risk of recurrence and death.
Patients taking a multivitamin seemed unaffected by it.
So what's the deal? Aren't dietary supplements supposed to be healthy?
Yes. Usually. Full disclosure -- I take a multivitamin, vitamin D, and fish oil every day. I don't plan on stopping.
The issue is that the patients in the study were being treated with chemotherapy. While the study called for more research on why exactly these supplements had the effect they did, it might be easy to guess why, in a really general way. Antioxidants help keep cells healthy. Chemo is meant to kill them. There's kind of a basic mis-match there. If you're a cancer patient who is trying to kill cancer cells, it doesn't make sense to take something that helps prevent damage to them. There's no evidence that a supplement can distinguish between healthy cells and cancerous ones.
To be clear -- that's my own observation, not something from the research.
A few important things to consider here.
First, the researchers say that, while the results are interesting, the number of patients in the study who were taking single supplements was pretty small. So while more may have been taking a multivitamin, the amount of (for example) Vitamin E in that multivitamin was much smaller than it would be in a straight Vitamin E supplement. Not many patients were taking those straight supplements. A larger, more focused study would be helpful.
Second, this study obviously focuses on breast cancer, not Follicular Lymphoma. We can't say for sure that the same results apply to our disease. Though if my general idea of why supplements make for worse chemo outcomes is really true, then maybe so?
Third, the study looks at chemotherapy, not other types of treatment like radiation or immunotherapy. There's no evidence that they would hurt, or that they would help, people taking those treatments.
Here's the real lesson, I think -- we should talk to our doctors about the things were are taking. All of them. Prescription medicines, over-the-counter medicines, supplements, herbs that someone recommends, whatever. Because even the medicines or supplements that we take to help us with one condition might have a negative effect on another. Unless we know the way those things interact with each other, we won't know if they're ultimately helping us or hurting us. The best person to ask about that isn't a friend or a Facebook ad or a well-meaning co-worker. It's your doctor.
Now, back to my own supplements. As I said, I take a multivitamin, Vitamin D, and fish oil every day. I don't take any of them because I think they will prevent or cure my cancer. I've been taking a multivitamin for years, and I continue mostly out of habit. I do believe that if I stopped, I'd be fine, especially since I'm being better about eating vegetables and fruit. I've been taking the fish oil for a while, too, mostly for heart health. I could probably stop taking that, too; it hasn't done anything for my blood pressure, which has gone up in the last few years.
Vitamin D? Hmm. I started taking that a while ago, too, but it also wasn't to prevent or cure cancer. I'd been reading about its benefits for lots of conditions, and its importance to general health, so I started taking it, with the encouragement of my doctor. Like the other supplements, the upside seemed bigger than the downside -- they're relatively inexpensive, they might help, and they probably won't hurt. Since I started, there has been some suggestion that Vitamin D levels might have a positive effect for FL patients. But like everything else related to supplements and cancer, there just isn't enough evidence either way to know for sure.
So here's what I do not want to happen. I do not want any of you writing to me and asking me how much fish oil or Vitamin D I take, or what brand of multivitamins I buy. I won't give you an answer. I won't add to the false hope that a certain vitamin D dose will help you. That's not my place to say.
If you want advice about supplements, ask your doctor, She's the best one to get advice from. She'll know about your other conditions, and how supplements and medications will interact with each othr, and what you might need for your general health. And if anyone else offers you advice about supplements and cancer and says they know for sure that something will help, I suggest you read what they say very carefully, ask for real scientific studies to back up the advice (on actual people in clinical trials, not "in vitro" or in test tubes), and then run it by your doctor.
In the meantime, if I do come across any other research that gives answers about how to make us healthy, you can believe I will pass it along.
Friday, January 3, 2020
Your Data, Your Privacy, and Lympho Bob
I thought it might be a good idea to start the new year off by addressing the California Consumer Privacy Act, which went into effect a couple of days ago.
The CCPA addresses online privacy issues and gives internet users the right to know what information is being collected by a website owner. You can read more about it here. It's similar in many ways to the GDPR (General Data Protection Regulation) in Europe.
This blog is hosted by Google, which owns Blogger (which bought Blogspot a few years ago, which was the platform I used to start Lympho Bob in 2008). Google is likely collecting information about you. Chances are good that you use Google to search, or Gmail for your emails, or YouTube to watch videos, or some other Google-owned site. Google and other large websites are still working through how they will comply with the CCPA.
I don't have any control over what information, if any, that Google collects when you visit this blog. If data collection and privacy concern you, I encourage you to keep an eye on CCPA developments over the next few weeks and months and find out how you use it to feel safer online.
But as far as Lympho Bob is concerned, I do not collect any information about any of you.
I've been writing Lympho Bob for almost 12 years. I made the decision a long time ago to not use Blogger's advertising feature. I never will, and anyone who leaves comments with links to advertisements or for-profit websites get deleted and reported as spam.
I skip the ads for one big reason -- ads are created by using information about you that is collected online. When I was first diagnosed, internet advertising was fairly primitive. You'd search for something, and a related ad popped up immediately. So when I searched for cancer, I'd get ads (no lie) for funeral homes and life insurance. It was devastating. I didn't want to do that to anyone else, and risk having ad program put ads like that on my blog. Internet ads are more sophisticated these days. They use information from a bunch of sources, not just the site you are on, and put it all together to target ads specifically to you. But back then, I didn't want any information collected through my blog and used to try to sell you something.
The other privacy concern that comes with blogging is mailing lists or alerts. I know that lots of bloggers will include a link on their pages to have people sign up for alerts, so when I a new blog post is published, you'll hear about it right away. There are a few of you who have figured out on your own how to get an alert about this blog from Google, but I haven't put an alerts link on the page, or asked people to send an email address to be a part of an email list. I don't see any reason for it. I don't see myself ever sending out mass emails about anything.
So, like I said, Google might be collecting information about you, and I can't do anything about that. But as far as me collecting information? No. Honestly, I have no idea who most of you are -- even your names. And for those whose names I do know, it's only because you've told me, in a comment or in an email.
In some ways, I'd love to know more about some of you. And about once a week or so, I do get an email from one of you, asking for advice or input (I always remind you that I'm not a doctor), or just wanting someone to share your story with who you know will listen (and I'm always happy to do that).
But as much as I want to know more about you, I value your privacy even more. I want you to know that this is a place to get information and opinion, and maybe ask questions. And to do that anonymously if that's what you need. Or with a name -- if that's what you need. I'm happy to help either way. We all need to handle a cancer diagnosis in the way that makes most sense to us.
But I do have one request.
Sometimes people will email or comment on the blog and share some information about their diagnosis or treatment. I always try to respond, and to ask you to keep me (if it's an email) or all of us (if it's a comment) updated on your treatment or condition. If you get that response from me, I'm serious -- I really do want to know how you're doing. Many of you do send an update, but sometimes I get emails from people, and I write long responses back, and I never hear from the writer again. I hate that.
A few months ago, I heard from someone who was absolutely devastated about her diagnosis. I could hear and feel the pain in her words on the screen. I gave her what I thought was solid advice about how to maintain hope. I never heard back. It haunts me a little. I hope she's OK, that she found a good doctor, and that she has found some kind of peace. But I really wish I knew for sure.
I'm a Follicular Lymphoma patient, like you or someone you love. I have a pretty good idea of how you're feeling.I don't make any money off of this. Not a cent. This isn't a site that was set up to do that. It was always a place to help other patients. I really do care about you. If you want to pay me something, respond when I ask. Let me know you're OK. Keep it anonymous, or use your name, or use a fake name. But let me know how you're doing. That's worth a million dollars to me.
And thank you all for reading. I'm looking forward to another good year for all of us.
Bob
The CCPA addresses online privacy issues and gives internet users the right to know what information is being collected by a website owner. You can read more about it here. It's similar in many ways to the GDPR (General Data Protection Regulation) in Europe.
This blog is hosted by Google, which owns Blogger (which bought Blogspot a few years ago, which was the platform I used to start Lympho Bob in 2008). Google is likely collecting information about you. Chances are good that you use Google to search, or Gmail for your emails, or YouTube to watch videos, or some other Google-owned site. Google and other large websites are still working through how they will comply with the CCPA.
I don't have any control over what information, if any, that Google collects when you visit this blog. If data collection and privacy concern you, I encourage you to keep an eye on CCPA developments over the next few weeks and months and find out how you use it to feel safer online.
But as far as Lympho Bob is concerned, I do not collect any information about any of you.
I've been writing Lympho Bob for almost 12 years. I made the decision a long time ago to not use Blogger's advertising feature. I never will, and anyone who leaves comments with links to advertisements or for-profit websites get deleted and reported as spam.
I skip the ads for one big reason -- ads are created by using information about you that is collected online. When I was first diagnosed, internet advertising was fairly primitive. You'd search for something, and a related ad popped up immediately. So when I searched for cancer, I'd get ads (no lie) for funeral homes and life insurance. It was devastating. I didn't want to do that to anyone else, and risk having ad program put ads like that on my blog. Internet ads are more sophisticated these days. They use information from a bunch of sources, not just the site you are on, and put it all together to target ads specifically to you. But back then, I didn't want any information collected through my blog and used to try to sell you something.
The other privacy concern that comes with blogging is mailing lists or alerts. I know that lots of bloggers will include a link on their pages to have people sign up for alerts, so when I a new blog post is published, you'll hear about it right away. There are a few of you who have figured out on your own how to get an alert about this blog from Google, but I haven't put an alerts link on the page, or asked people to send an email address to be a part of an email list. I don't see any reason for it. I don't see myself ever sending out mass emails about anything.
So, like I said, Google might be collecting information about you, and I can't do anything about that. But as far as me collecting information? No. Honestly, I have no idea who most of you are -- even your names. And for those whose names I do know, it's only because you've told me, in a comment or in an email.
In some ways, I'd love to know more about some of you. And about once a week or so, I do get an email from one of you, asking for advice or input (I always remind you that I'm not a doctor), or just wanting someone to share your story with who you know will listen (and I'm always happy to do that).
But as much as I want to know more about you, I value your privacy even more. I want you to know that this is a place to get information and opinion, and maybe ask questions. And to do that anonymously if that's what you need. Or with a name -- if that's what you need. I'm happy to help either way. We all need to handle a cancer diagnosis in the way that makes most sense to us.
But I do have one request.
Sometimes people will email or comment on the blog and share some information about their diagnosis or treatment. I always try to respond, and to ask you to keep me (if it's an email) or all of us (if it's a comment) updated on your treatment or condition. If you get that response from me, I'm serious -- I really do want to know how you're doing. Many of you do send an update, but sometimes I get emails from people, and I write long responses back, and I never hear from the writer again. I hate that.
A few months ago, I heard from someone who was absolutely devastated about her diagnosis. I could hear and feel the pain in her words on the screen. I gave her what I thought was solid advice about how to maintain hope. I never heard back. It haunts me a little. I hope she's OK, that she found a good doctor, and that she has found some kind of peace. But I really wish I knew for sure.
I'm a Follicular Lymphoma patient, like you or someone you love. I have a pretty good idea of how you're feeling.I don't make any money off of this. Not a cent. This isn't a site that was set up to do that. It was always a place to help other patients. I really do care about you. If you want to pay me something, respond when I ask. Let me know you're OK. Keep it anonymous, or use your name, or use a fake name. But let me know how you're doing. That's worth a million dollars to me.
And thank you all for reading. I'm looking forward to another good year for all of us.
Bob
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