Saturday, September 22, 2018

My Cancer Rainbow

My latest for is called "My Cancer Rainbow."

It's written in honor of Lymphoma Awareness Month, which we have another week or so of.

As you may know, lime green is usually the color associated with Non-Hodgkin's Lymphoma awareness, so that covers those of us with Follicular Lymphoma as well. Here's the cover photo I've been using this month on Facebook:
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But the NHL awareness color, and the ribbons that go along with it, have an interesting history. Who decides on these things? Who says "Lime green is our color now"?

Well, different organizations have their own ideas, and eventually one color wins out over another. (Or maybe not).

We've actually had a few different colors that could represent us. And I love them all. They're my cancer rainbow.

Click on the link to read more.

Tuesday, September 18, 2018

How Health Insurance Affects FL Survival

The Blood journal has published a study that shows that Follicular Lymphoma patients with private health insurance have a better survival rate than patients on public insurance, or no insurance.

The study looked at 43,648 FL patients who were diagnosed between 2004 and 2014. Researchers looked at two groups -- patients under 65 and patients over 65.

Some quick background, especially for those of you who don't live in the United States.

Unlike countries like Canada and Great Britain, health insurance in the U.S. is paid for a few different ways. Most people with health insurance have private insurance, paid for by the individual, usually offered through an employer, who pays for some of the cost.

However, there are some people who have government-subsidized health insurance. People over 65 may be eligible for Medicare, which is funded by payroll taxes (when we are working, we pay into the system so we can have the insurance later in life). Medicare is also eligible to some young people with certain health problems.

Others get health insurance through Medicaid. This program is run by federal and state governments, and provides healthcare for people with lower incomes, whatever their age.

Medicare and Medicaid are more complicated than that, but that's a pretty basic breakdown.

And, of course, there are people with no health insurance at all, because they can't afford it, aren't eligible for it, or just choose not to get it.

In the study, 47% of patients had private insurance, 3% had no insurance, 4% had Medicaid, and 46% of patients had Medicare. 

As for the results of the study, the researchers found that, for patients under 65, the 5 year Overall Survival for patients with private insurance was 90%. For patients with Medicare, it was 78%. With Medicaid, 80%, and with no insurance, 78%. The low number for patients with Medicare is probably influenced by other health issues -- people on Medicare who are under 65 usually are eligible for it because of other health problems.

For patients over 65, the Overall Survival at 5 years was 69% for those with private insurance and 62% for those with Medicare.

So in both age groups, FL patients with private insurance had significantly better outcomes than those without it, no matter how they paid for their health care.

There are a lot of questions that could be asked about the groups, and the researchers do point them out. With such a large study, it's not really possible to get as much information as they would have liked. The patient records were taken from the National Cancer Database, so they do have information about their insurance and the treatments they got. But they don't have information about some other factors that might have affected their health.

Now, as with any study like this, it's important to remember that it doesn't say anything about us as individual patients. Having one type of insurance or another will not predict our own survival.

But it does say something about the state of healthcare in the United States. It's still unsettled. Some people have access to private insurance (and the apparent benefits of that insurance) and some don't. Some people like the changes that have come about with the Affordable Care Act (which really came into full force in 2014, at the end of the period being looked at it in this study). Some people don't like those changes. Some want a system with a single payer (like Canada's or Great Britain's), and some don't.

I think I'll agree with the researchers, who say that studies like this, that look backwards, aren't enough. We need to start collecting information now about patients, their insurance status, their socioeconomic status, their genetics, and other information, and use that to help shape public policy -- the laws that decide how people get healthcare.

That won't be easy. But it's probably the best way to make sure that politics isn't the thing that decides our healthcare.

Saturday, September 15, 2018

World Lymphoma Awareness Day

Happy Lymphoma Awareness Day, everyone!

That might be a strange thing to be happy about, especially for a bunch of lymphoma patients and caregivers.

But as a 10+ year survivor, I think we do have a lot to be happy about.

Lymphoma researchers have made some great strides, with new treatments available now that weren't there for us 10 years ago. And more in the pipeline.

Overall Survival is up. When I was diagnosed, I read that the median survival was 8 to 10 years. Now researchers are saying it's close to 20.

Plus, I'm still here. we're all still here. That's worth being happy about.

And as happy as the Big Things are, it's worth focusing on the Little Things, too.

The Lymphoma Coalition, which is made up of 75 Lymphoma-related organizations in over 50 countries, has chosen a theme for this year's World Lymphoma Awareness Day:

Small Things Build Confidence.

As much as those big things like survival rates should give us a reason to be happy, the Lymphoma Coalition is asking patients to think about (and share) the small things that give them confidence and make you feel better.

Maybe a small trick that you learned that's helped you deal with a side effect.

Maybe some positive habit you have formed.

Maybe a person you make sure to think about or talk to every day who has helped you feel like you're going to be OK.

I'll share one.

I embrace this disease. Some people don't want to think about it, and if that's how they deal with it, then that's great. we should all do what works for us.

For me, I think about it every day. I check in with support groups, go through my Lymphoma-heavy Twitter feed, watch videos, and do research.

I don't want to forget that I have it. I always want to be ready that I can take it on.

And I'm confident that I will.

Enjoy the day. Eat some ice cream, take a walk, scratch a puppy's ears -- do something that makes you feel good today.

Thursday, September 13, 2018

In Praise of Support Groups

Hey, everyone. I have a new piece on Lymphoma News Today. It's called "In Praise of Support Groups."

I've been using the Lymphoma News Today column to write about things that have given me hope over the last 10+ years. If you've been reading for a while, you know how important support groups have been to me. They were especially important when I was first diagnosed. It was great to hear the stories of people who have been through what I was going through. I could ask questions and get answers. I could speak my fears, and get them relieved.

The unknown always seems worse than the reality. Support groups help with that.

The group I first encountered (and the one I talk about in the Lymphoma News Today piece) is still around (you can find the link in the "Sites I Like" section on the right hand side of the blog). And I still check in every day.

I've also joined a couple of Facebook groups, I am active in the communities on, and I consider this blog a community as well.

If you haven't joined a support group (especially if you're new to all of this), consider it. There are lots to choose from, and some of them might not give you what you are looking for, and that's OK. The important this is to connect with people who give you what you need.

Monday, September 10, 2018

More Questions about R-Squared

In my last post, I wrote about the most recent research on R-Squared, the combination of Rituxan and Revlimid (also known as Lenalidomide). Results from a phase 3 trial were published in the New England Journal of Medicine last week. The combination has the potential to be the first non-chemotherapy treatment to be as effective on Follicular Lymphoma as standard immunochemotherapy (Rituxan + chemo).

I came across a very interesting podcast discussion of the article.

The podcast is hosted by Dr. Vinay Prasad of the Oregon Heath and Science University. I like Dr. Prasad -- he had a reputation on Twitter for being kind of a pain in the butt.

I mean that in the best way. He liked to point out problems in medical journal articles that made them seem more successful than they really were. I'm not a "numbers" person, and my background in statistics isn't great. But I learned a lot from Dr. Prasad and others who had Twitter conversations with him (like Karl, who runs Lymphomation). They've helped me understand clinical trials a lot more.

I'm talking about Dr. Prasad and Twitter in the past tense, because he seems to have deleted his Twitter account. There is some speculation about why he did. I'm going to be optimistic about this and say that he's now doing a podcast instead of using Twitter because a podcast gives him more room to explain himself. There's only so much you can say in 240 characters, even if you string a bunch of Tweets together.

If there's any question about whether Dr. Prasad will continue his work, then the podcast on the NEJM article on R-Squared should answer it. He spends about 18 minutes tearing it apart.

Among his complaints: the trial is not successful, but it is presented in as successful a light as possible.

The trial was set up as a "superiority" trial. In other words, to be successful, it would have to show that R-Squared was better than R-chemo. A trial can be set up as non-inferior, too -- showing that a new treatment was about as good as the old treatment -- but that's not how this one was set up, and it did not show that R-squared was better (superior) to R-chemo. But the article doesn't say that.

Dr. Prasad also has issues with the surrogate endpoint. A trial can take a very long time to run. Ideally, we want to see how a treatment for FL works over 10 years or so. But, statistically, we can look at other trials and say "Well, the people who did well after 10 years also had a 3 year PFS." So now we can say the 3 year PFS is a surrogate endpoint for 10 year survival. We can guess that something in the short term will tell us something accurate in the long term.

Dr. Prasad doesn't think the surrogate they chose was an accurate choice.

He also points out that the Rituxan doses are not equivalent. For the R-chemo arm of the study, oncologists could choose R-Bendamustine, R-CVP, or R-CHOP. The standard doses for those regiments are different (you get more or fewer doses of Rituxan, depending on which chemo you are getting). Could more Rituxan have shown greater success?

Dr. Prasad points out that the patients in the R-Bendamustine group actually did better than the R-Squared group. So maybe this was the wrong comparison? Maybe R-Squared should go up against just R-B, especially since that seems to be the more popular Immunochemotherapy choice these days?

There are more issues that he pints out (8 in all). But you get the point. The study has some problems.

I have mixed feelings about the podcast.

On the one hand, the Cancer Nerd in me thinks it's very cool, and I really love having things shown to me that I hadn't noticed. I learned a lot. And I do admire a pain in the butt, especially when he's really good at it.

On the other hand, as a cancer patient, I want the R-Squared combo to work. I want that option. I want it to be approved. I don't want flaws pointed out.

So, as I said last time, we'll see where this goes. Will flaws in the study be enough to question its effectiveness? Will it be approved? Will oncologists not worry about surrogate endpoints, and focus more on the "chemo-free" aspect of it? Will patients demand it?

Follicular Lymphoma is already a complicated disease, with no easy answers. It would have been nice to read an article that provided some. But I'm not surprised it doesn't.

(But that does nothing to make me less hopeful about the future.....)

Thursday, September 6, 2018

R-Squared for Follicular Lymphoma

The New England Journal of Medicine today published "Rituximab plus Lenalidomide in Advanced Untreated Follicular Lymphoma." This is the official peer-reviewed publication of the research on R-Squared that was presented at ASCO in June.

That's significant. When research is presented at a conference, it's usually in a big room full of other researchers. They can ask questions, have discussions, etc. But it's all still kind of unofficial.

When the research is published in a peer-reviewed medical journal, it's worth taking more seriously. "Peer-reviewed"means that, before it is published, it is given to some other experts, who can look at it more deeply and make sure that the data that was collected is actually doing what the researchers say it is doing. 

So the research about R-Squared is now "official." 

R-Squared, in case you're new to all of this, is a combination of Rituxan and Revlimid (also known as Lenalidomide). This combination is significant, because neither of the two agents is traditional chemotherapy. If the combo is effective, it is a big step forward in one day eliminating chemotherapy. Instead, we'd rely on treatments that target cancer cells and not healthy cells (like chemo can do), causing, in theory, fewer side effects.

The results of the study show that the R-Squared combo is about as effective as chemo (R-CHOP, R-CVP, or R-Bendamustine). Both also received Rituxan Maintenance.

The numbers don't seem to have changed from the ASCO presentation, so you can read more detail from my post from May.

As I said in a post a few days after that, the authors of the study seemed to be very cautious in how significant this is. They do the same thing here. They are both effective options, and they both have side effects, though those side effects are different.

As I'm writing this, I'm starting to see a few medical sites publishing stories about it, and most seem to be pushing the idea that R-Squared is as effective as the R+chemo is was compared to. 

That's good. The question now is, what comes next? Since this comes from a phase 3 trial, we can assume that the combination will be put up for approval by the FDA and other regulatory bodies at some point, and the numbers suggest it will do pretty well. 

From there, it will be up to oncologists to recommend it to patients, as an alternative to chemo, as a first treatment. If enough do that, it could really change the way FL is treated. 

Time will tell. For now, it's more waiting an seeing. But definitely something to be hopeful about.


Monday, September 3, 2018

Early Stage FL: Best Treatment?

I don't write a lot about early stage Follicular Lymphoma -- stage 1 or 2. Honestly, it's partly because I was diagnosed at stage 3, and later stage stuff catches my eye more.

But in reality, there isn't much written about it. Most of us (at least 75%, probably more) are diagnosed with stage 3 or 4 FL. It's just harder to catch when it's early. And so later stage FL gets much more of the research attention.

The Journal of Clinical Oncology just published some of that less-common research, in an article called "Randomized Trial of Systemic Therapy After Involved-Field Radiotherapy in Patients With Early-Stage Follicular Lymphoma: TROG 99.03."

One of the potentially positive things about stage 1 or 2 FL is that it might be curable. For about 50% of patients, localized radiation treatments in affected nodes can result in a cure. That doesn't work with later stage FL (and obviously doesn't work with everyone with early stage, either).  For most of us, that kind of focused radiation doesn't work, since cancer cells are moving all around our blood stream. (We have RadioImmunoTherapy, though. Same idea, but for a moving target.)

The JOC article describes a long-term study (it took place from 2002 to 2012) in which early stage FL patients were given either radiation of their affected nodes, or radiation plus the chemotherapy combination CVP (and after 2006, CVP + Rituxan). There were 75 patients in each group. The results: the Progression-Free Survival (PFS) over 10 years was 41% for just radiation, and 59% for radiation + immunochemotherapy. (Overall Survival, however, was not significantly different.)

It's an interesting study, but one that has some flaws. For one thing, it's fairly small (150 patients). It also changed, with the addition of Rituxan after 4 years (making the full comparison harder). The amount of radiation recommended in 2002 was higher than it is now. And PET scans were recommended, but not required, for participants (it's pretty much standard now to use PET scans as a way of measuring results in a study like this).

(All of those flaws, by the way, were pointed out in a commentary about the study, published in the same issue of JOC. Just so you don't think I came up with that stuff myself...)

So it's not a perfect study, but it does teach us some things. And as the writers of the commentary point out, it raises some interesting questions:

  • A lot of the increase in PFS came after 2006, when Rituxan was added to the chemo. Would radiation + Rituxan do the job, leaving out chemo altogether?
  • Would other non-chemo options also work? Maybe R-squared (Rituxan + Lenalidomide)?
  • Would those options be less expensive? Should cost also be measured in a follow-up trial? [My answer is Yes -- it should be measured in every trial.]
  • Given that, even with just the radiation, 41% of patients had a 10 year PFS, should early stage FL patients not be put on watch and wait? Is it better to treat immediately and take a chance of a cure?
Part of the problem with this study is that there are relatively few stage 1 and 2 FL patients, so there were fewer people to recruit for the trial. That's why it took 10 years to complete -- it took that long to recruit patients. And with a trail that long, you have some of the problems that came out -- practices change over time.

So, if you are a stage 1 or 2 Follicular Lymphoma patient, especially one who is newly diagnosed, I think the big lesson here is that there are some things to talk about with your doctor. Radiation could be an option, as could radiation + something, whatever that might be. Treatment options might not be as simple as they seem.

The other lesson -- if you are early stage, consider doing a clinical trial. More good stuff like this can only come if people volunteer.

I'm glad I got the rare chance to write about stage 1 and 2 FL research. I hope there's more to come.