Thanks a Million!

I have some very cool news to share with you all.

The Lympho Bob blog has reached 1 million total page views!

I didn't catch the exact moment that it happened, but this was the page view counter that showed it to me:

 

So, a great big thank you to all of you have read the blog. An especially big thank you to those of you who have been reading for years.

I've told the story of this blog before, but I'll tell it again. I started the blog very soon after I was diagnosed. It was a way to tell family and friends what was happening with my diagnosis, any testing, and any possible treatment. I know from experience how people react when someone else has cancer -- they want to know what's happening, but they don't want to call and ask and feel like they are being a bother. I wanted people to know what was happening with me, so I tried to make it easy. They could just google "Lympho Bob" and read all they wanted, and maybe leave a comment.

And people did leave comments. And they meant a lot in those early days. As I'm sure many of you know, even a little acknowledgement of what you are going through can mean a lot. 

I also used the blog to let people know how I was feeling every day. Most days, that meant telling people I felt good. So if you're wondering why I have a picture of the singer James Brown in my profile, that's why -- his song "I Got You" has the famous line, "I feel good."

Over time, because I was watching and waiting, I kind of ran out of things to write about, regarding my own cancer. My oncologist appointments were less frequent and I had much less news to share. The blog became a kind of gathering place for some family members, and for a while I wrote about a lot more non-cancer topics. And then came Facebook. As a family member told me back then, Facebook gave everyone a new place to gather online, so they stopped coming to my blog.

No problem. At that time, I was reading and writing more about Follicular Lymphoma research. And pretty soon, I started to get comments from people I had never met. And that was really cool. And then at some point, I got a comment from someone overseas. And that was even cooler.

And all of this time, I didn't really know exactly how many people were actually reading the blog. At some point, Google (which owns Blogger, my hosting platform) added a counter and some widgets, and I was able to see just how many people were actually reading the blog. And that was very, very cool.

So where am I now with the blog? Let me share a few numbers.

• I have readers from at least 82 countries, from Argentina to Yemen and many places in between. Blogger doesn't tell me anything about who exactly is reading an individual post, but it does tell me things like how many readers I had from each country for the last week, and which browser they used. So I kind of kept a running list for a while to come up with the 82 different countries. It's fun to look at.
• This post is the 1738th that I have published. I try to post once or twice a week. Once per week is more likely these days, with my schedule.
• This is not the 1738th post I have written, however. I have about 300 more drafts in my folder on Blogger that I started but never published, and probably another 500 that I didn't bother to save. That happens a lot. I'll find something online that seems really interesting and I'll save a draft with a link, and then I'll go back and read it and find that it wasn't all that interesting anymore and I'll never write or publish the post. Other times, I'll find an article in a medical journal, usually something with a lot of science or statistics, that will seem really important. But then as I'm writing, there will be parts of it that I just don't understand, and even with some research, I can't understand it well enough to explain it to you. If I can't explain it, I don't publish it. Like I said, that happens a lot. 
• I probably spend anywhere from 1 to 4 hours per post, between searching for ideas, watching videos, writing things up, researching any information I need, and editing. Some days I just don't have the time, but if I'm getting close to a week between posts, I'll find the inspiration to write something.
  

A lot of the blog has stayed the same since I started it. I resist some "best practices" -- the advice that blog writers get for how to be up-to-date. I am very aware of that advice, but for the most part, I don't make the changes that are recommended. The layout has stayed the same the whole time, even though Blogger offers lots of choices for a more modern look. The banner at the top is still lime green, the color of lymphoma awareness ribbons. I don't use a lot of images, because I have seen some blogs that use them for no real purpose. If it adds something to a post, I'll include a photo. They would help the blog become more visible to search engines, but they also slow things down for a lot of readers. I like that the look of the blog has stayed the same all these years -- simple, with a focus on the words. If you go away for a while and then come back, you know you're in the right place.

I've never had ads in the blog. When I first started writing, internet ads were kind of crude. By that I mean, if you searched for shoes, you'd get an ad about shoes. So 15 years ago, when I searched for information about cancer, I'd get ads for life insurance and funeral homes. I just didn't want those things on my blog, and if I added advertisements, that's what they would have been. Ads are much more sophisticated now, and use a whole lot of information to tailor advertisements to each individual. But I'd still want more control over which ads were shown on the blog. I could make a little money with ads, but to me, it's just not worth it. I'm lucky to have a good job that I love. I can live without the ad revenue.

I also have never collected personal information from readers. I don't have an email list, and I don't use any cookies (though Blogger might use some cookies that I don't have any control over). If you don't leave me a comment or send me an email, I have no idea who you are. I like it that way. I'm always happy to answer an email, whether it's someone asking for advice, or for help understanding something, or just saying hello and thank you. (In real life, I'm a teacher. I'm always happy to help another patient.) But I also know that we all handle our cancer in the way that makes most sense to us. For some, it's being very public. For others, it's being more private. So if you like to read the blog and leave it at that, then that's great. Use it in whatever way that makes most sense for you. I'll never demand to know who you are.

There are days when it's hard to write, and sometimes long stretches when I can't find much to say. But it seems like whenever that happens, I'll get a comment or an email that says something nice and keeps me going. Keep doing that if you are so inclined. It's all the payment I need.

So whether you've only read a handful of posts, or you've read all 1738 of them, thank you so much for reading. As long as there's someone reading, I'll keep writing.

Stay well.

European Approval Application for Odronextamab

I'm about a month late with this news, but the makers of the bi-specific Odronextamab applied for approval with the European Medicines Agency (EMA) in August.

As I've said before, I'm trying to pay more attention to what's happening with Follicular Lymphoma outside of the USA, since so many of my readers are from other parts of the world. And since Odronextamab is a bi-specific, one of the more exciting types of treatments available to FL patients, it's definitely news worth sharing. 

Odronextamab had already been given Orphan Designation by the EMA. "Orphan Designation" is a particular program for the EMA (the FDA has something very similar). It's a program that focuses on treatments for rare diseases, and provides incentives for manufacturers to develop these treatments. It makes sense -- if a drug maker can use it's time and resources for a treatment for high blood pressure or diabetes, something that affects millions of people, they can make billions of dollars every year on an effective treatment. But that means there is little incentive to spend those same resources on a treatment for a rare disease that might only affect a few thousand people every year. Orphan Designation gives them a reason to focus on those potentially less profitable diseases. 

So after Odronextamab got the Orphan Designation and went through some trials, they had good results. As a bi-specific, the treatment targets the CD20 protein on a cancer cell and the CD3 protein on a T cell (an immune cell) and brings them together so the immune cell can take out the cancer cell. 

The application is based on the results of phase 1 and phase 2 clinical trials that were presented at the ASH conference last December. Effectiveness was great -- 82% Overall Response Rate with a 75% Complete Response Rate.

However, as I noted in that link above, there were also some serious safety concerns with the treatment. Apparently, newer data, or something else in the application, has made the EMA feel better about those concerns (it's unlikely that the maker would make the application if there wasn't a good chance that it would be accepted. That Orphan Designation might have been a big help, given them some extra attention by the EMA during the application process). 

As far as I know, the maker hasn't applied to the FDA yet for approval in the USA. They may be waiting to see how things go with the EMA.

The EMA says it can take about 7 months for an application to be reviewed, so it might be a while before we hear more news about this one. In the meantime, I hope there is some updated information presented at ASH in December. If it is approved, it would be available in all European Union (EU) member states, Iceland, Norway and Liechtenstein. 

(I don't think I have any readers in Liechtenstein, which is a shame. I visited there once, years ago, and went to nice restaurant where I ate an ostrich steak. It was a memorable night. If there's anyone out there from Liechtenstein, please say hello in the comments.)

I'll keep you updated on all of this.

New Combinations for Follicular Lymphoma

Targeted Oncology ran a nice piece last week called "Exploring Novel Combinations in Indolent Lymphomas." It highlights a bunch of studies that are being conducted that involve trying different combinations of treatments to find something that improves outcomes without increasing side effects too much.

A lot of the research being done centers around R-Squared, the combination of Rituxan and Revlimid (also known as Lenalidomide). As you may know, R-Squared was approved with much celebration. It was the first treatment that was shown to be as effective as traditional chemotherapy. As such, it showed that it was possible for treatments that are more targeted to be a viable alternative to chemo. (Traditional chemotherapy likeR-CHOP and Bendamustine is often very effective for Follicular Lymphoma. The problem is, while chemo kills cancer cells, it often kills healthy cells as well.)

So while R-Squared is effective, it's not better. And that's an important distinction. It doesn't have the same side effects as chemo, but it also doesn't have fewer side effects. Just different ones. The official term for this is "non-inferior." That was the outcome of the large clinical trial that led to R-Squared being approved by the FDA -- it's not better than chemo, but it's not worse, either. But if it isn't better (that is, either more effective or safer), then it can't really replace chemo.

That's kind of where this article begins -- R-Squared came close to knocking chemo off the throne, but it didn't quite do it. So the next step is to find some way to make R-Squared more effective. That's what will make it superior to chemo, not just not inferior.

An example of this is the combination Tazemetostat + R-Squared, as I wrote about last month. R-Square is great, but adding a third treatment that goes after cancer cells in a different way just might make it better. Again, the problem is that it can also introduce a third set of side effects that can make things worse (though that doesn't seem to be the issue with Tazemetostat + R-Squared).

The article looks at a few others, though they aren't all being tested for Follicular Lymphoma. (The article is about indolent, slow-growing lymphomas, not just FL). This article is a summary of a presentation from the annual meeting of the Society of Hematologic Oncology (SOHO).

Some of the highlights:

• R-Squared is being combined with Epcoritamab, a bispecific antibody. The research is very early, in stage 1 and 2 trials, involving 66 previously untreated FL patients, but the results are good, with about 80% of patients in the trial getting a response.
• Another bispecific, mosunetuzumab, is also being combined with Lenalidomide (but not Rituxan) in a phase 3 trial with similar results. 
• Some other combinations focus on what are known as protumoral macrophages. Macrophages are another type of immune system cell, like the B cells that turn cancerous in FL. When macrophages become pro-tumorous, they allow cancer cells to grow. Some treatments target this process, including the BTK inhibitor Acalabrutinib. It is being combined with R-Squared in an early trial with 29 patients. It's doing well in the trial, with no new side effects when compared with R-squared, but it's also not much more effective. 
• Another BTK inhibitor called Zanubrutinib is being combined with Obinutuzumab (a monoclonal antibody like Rituxan). In a phase 2 trial, the combination is more effective than just Obinutuzumab.
  

A lot of these combinations are in early trials, as the article points out. But it does show that the approach is still very much on the minds of researchers. As exciting as CAR-T and bispecifics are on their own, there might be even more reasons for excitement if they are combined with other treatments. As long as the side effects remain manageable -- not worse than the side effects of the individual parts of the combination -- then there's some promise. 

All some fun things to keep an eye on.

How Smart is Cancer? Some Thoughts

I got a Google alert yesterday for a news release from The University of Miami's Miller School of Medicine. The title of the release is "Blood Cancer is Smart. Research is Smarter."

I was very curious about where this was going. It turned out to be a fairly standard news release from a university, discussing the research that some of its professors are doing (in this case, some of its blood cancer specialists). It's good stuff that they're doing there.

What really caught my eye, though, was the idea that cancer is "smart." I have some mixed feelings about that.

I'm certainly guilty of anthropomorphizing cancer -- talking about it like it's a person instead of a general name for a whole bunch of diseases. Sometimes it's easier to explain things to people if we treat cancer as a thing with a brain that can make its own decisions and take action to grow on its own and do things to evade treatment. I use a whole lot of comparisons when I write the blog. I think they're helpful (I certainly hope so). But I also know that comparisons have their own set of implications.

And it's not just me who does it. Sometimes we explain things to ourselves in ways that make it easier (or harder) to deal with being a patient. I wrote a piece a while ago where I talk about how it feels to have a slow-growing blood cancer. I compared it to being in a bar, seeing someone else who is staring at you, knowing that the other person is looking for a fight.

Making cancer into something recognizable can make it easier to deal with. Calling ourselves "warriors" makes it easier to feel like we're doing something other than watching and waiting. Thinking of cancer as something "smart" makes us feel like doctors might be smarter and can get us out of this mess.

I remember, many years ago when I was first diagnosed, writing in the blog about cancer humor. I still find jokes about cancer very funny (if they're good jokes, of course). You can probably find the blog post easily enough if you search. But I remember saying something along the lines of, I'll never stop laughing, because I  don't want to give cancer the satisfaction of making me sad.

At the same time, reading that title, it felt to me like it was giving cancer too much power. Is cancer "smart"? No. Because it can't make decisions. It can't target us. It can't problem-solve when it is confronted with a new treatment.

And I'm not sure treatments are "smart" in that way, either. I understand why they're called that. Compared to the very "stupid" chemotherapy, which kills whatever it comes across, newer treatments are "smart" in that they do a much, much better job of finding and killing cancer cells, rather than healthy cells. (Though they don't spare all healthy cells.)

And looking at the article, the doctors who are interviewed never call cancer or cancer research "smart." It's a clever headline.It certainly caught my attention.

But for me, it was a good opportunity to think some more about the language we use to talk about cancer, and the ways that our words shape our attitudes, and maybe our actions.That's always worth a little bit of reflection.

 

Blood Cancer Awareness Month

I know I'm a week late, but I want to acknowledge that this is Blood Cancer Awareness Month.

I say the same thing every year, but I'll say it again -- I don't really need to be made aware of my cancer, thanks very much.

But of course, awareness campaigns aren't about patients as much as about everyone else, and making others aware of a disease. I certainly encourage you to do just that.

How to do that? Well, there are some really easy things to do, like posting on your Facebook page or changing your profile picture to something appropriate, like a picture of an awareness ribbon. (speaking of awareness ribbons, Blood-cancer.com was kind enough to recently re-post a piece I wrote for them 5 years ago, "My Cancer Rainbow.")

Or maybe you'd rather not be so public about your diagnosis. I understand -- all deal with our disease in the way that makes most sense. But if you've shared it with just a small circle of people, then remind them that it's important to stay healthy, eat well, get some exercise, do some self-checks for cancer, and go to the doctor regularly. That's plenty of awareness.

And if you're looking for some other ideas, there are plenty more out there.

The Lymphoma Research Foundation is in the middle of their annual Light It Red campaign.

The Leukemia and Lymphoma Society is highlighting their personalized support for patients.

The World Lymphoma Coalition, a group made up of Lymphoma organizations around the world, celebrates World Lymphoma Day on September 15. Their theme this year is "We Can't Wait -- To Focus On Our Feelings." They want to highlight some of the psychological and emotional issues that come with a diagnosis. I am in full support of that kind of awareness.

One more thing -- Blood-Cancer.com (I mentioned above that I write for them) is having a give away to celebrate the month. Sign up using your email address (and getting on their email list), and you could win a Kindle Fire HD 10 with Alexa (64GB). Click here for more details, so you know what you're getting into. (Only open to United States residents.)

At the very least, celebrate your awareness by being good to yourself. Read a good book. Take a nap. Go get some ice cream. Celebrate yourself -- you're doing a great job.

Not Every Cancer Needs To Be Called Cancer?

The New York Times published what I thought was a fascinating opinion piece a few days ago. It was written by two oncologists, and it is called "Not Everything We Call Cancer Should Be Called Cancer." They don't mention Follicular Lymphoma in the article, but our disease does seem like it fits into the conversation.

The authors say that, with all of the advances that have been made in understanding cancer, we haven't updated the language that we use to define it. Cancer is defined as “a malignant tumor of potentially unlimited growth that expands locally by invasion and systemically by metastasis.” (This is the definition that they use in the article, which they got from Miriam-Webster dictionary.)

The problem, as they see it, is that some things that we define as cancer don't really meet that definition. They use prostate cancer and breast cancer as examples. There are forms or stages of these two diseases that ultimately pose very little or low risk. I know a little more about prostate cancer than breast cancer, since I get regular screenings for it. I know that there are very slow-growing forms of prostate cancer that sometimes show up in elderly patients. I had an uncle in this situation. He was old enough, and the prostate cancer was slow-growing enough, that the form of prostate cancer that he had was never going to become a problem. 

There are breast cancer patients in a similar situation. Some  may be diagnosed with "ductal carcinoma in situ, or D.C.I.S.," which is also "low or very low risk, indicating the very earliest, noninvasive stage of the disease." (Again, I'm quoting from the authors -- I don't know enough about breast cancer to know how that works.)

They argue that calling something like that "cancer" -- early stage, non-invasive, unlikely to cause problems at that point -- can lead to unnecessary treatment. People hear the word "cancer" and want something to happen immediately. And so they are given radiation or surgery. And everything that goes along with it -- the financial cost, the emotional cost, the physical cost.

Maybe calling that type or stage of disease something else will not trigger the kind of reaction that "cancer" triggers. Instead, some "active surveillance" might be better, keeping an eye on the disease until it does turn more aggressive (if it ever does) and needs treatment. They suggest calling them "IDLE (indolent lesion of epithelial origin) or preneoplasia — anything but the dreaded C-word." 

It's an intriguing idea. I remember once taking a loved one to doctor's appointment, and the doctor came in with test results. She said she had identified some "abnormal cells" but then went on to something else. I stopped her. "Wait a minute," I said. "What exactly do you mean by abnormal cells?" She said that was  a bad word, and said "Let's call them funky cells instead." I told her that, as a cancer patient, the term "abnormal cells" made me very worried. She assured us that the cells were not cancerous, or even pre-cancerous, and could be taken care of very easily with no problems. 

My point is, I'm very sensitive to the language we use to talk about cancer, and I'm very aware of the complicated nature of that language. 

Of course, all of this immediately got me thinking about Follicular Lymphoma. Like the cancers they discuss in the article, some FL patients experience disease that isn't causing problems (how many of us are diagnosed when they are dealing with a completely separate health issue?). For those FL patients, "active surveillance" -- a fancier name for Watching and Waiting -- is an option. I know, having watched and waited for two years before I began treatment. 

The question is, would my anxiety have been less if the doctor had said, "You have an IDLE, something that could become more aggressive in time, but is really slow-growing now?"

I'm not sure I would have. I think I would have been in the same situation, "watching and worrying," as it's sometimes called. I wouldn't have had treatment right away -- I made the choice to wait when it was called cancer. But I don't think the emotional impact would have been any less.

It's interesting to read the comments to this New York Times article. Lots of people sharing their experience and offering their perspective. But I did read one comment that brought up the idea that, until maybe 50 years ago, the word "cancer" was never used directly with a patient. The family would be told that a patient had cancer, but the patient themselves would not. I always took it as a big step forward when patients were told the truth about their condition, so they had what they needed to make informed decisions. So not calling something "cancer" feels like a step backwards. There's the potential to minimize something that needs to be talked about.

That's an interesting perspective too.

So I'm curious -- for those of you who watched and waited, especially, who didn't need treatment immediately, would you have preferred that your disease was not called "cancer" until it did need to be treated? Would there have been less of an emotional impact if it was called something else?

As I said, I do believe that the language we use has an effect on how we handle the disease. I also believe that talking about cancer is better than not talking about it. I don't think there's a perfect answer to this, but I'd love to know how you all feel.