Someone posted a really interesting link in the online support group I've been a part of for 10+ years. It's a piece about financial planners who are helping cancer patients for free.
The piece is called "How advisers can help cancer patients tackle financial distress," and it is written for other financial advisors. It describes the work of the Foundation for Financial Planning and their Pro Bono for Cancer Campaign. In this program, Financial Planners (professionals who help other people with advice about saving, investing, and spending their money) give free advice to cancer patients about their finances.
As the Pro Bono for Cancer site says, financial issues are the second most frequent cause of distress among cancer patients. That makes sense. Even for people with private insurance, Medicare, or Medicaid (in the U.S.), cancer can keep patients and their caregivers from working, can create unexpected bills, and can cause financial problems of all kinds.
Cancer patients are almost 3 times more likely to go bankrupt than people the same age who do mot have cancer.
The Pro Bono for Cancer program will provide planning advice for patients. As we all know, most of us have other things on our minds, and that kind of planning might be more than we can handle. Some help there would be great for lots of people.
But what about help with money for paying bills?
There are a few places FL patients can turn for help. If you're in that situation, and you need assistance, look into these programs:
The Lymphoma Research Foundation offers support for paying for treatments.
The Leukemia and Lymphoma Society can help with co-pays, travel, and other urgent needs.
Cancer. net has a list of other general cancer-related organizations that offer different types of assistance.
Many companies that make Lymphoma treatments offer programs that assist patients with cost. They are easy enough to find online, and your oncologist's office might be able to help find them, too. I'll give you a quick example -- Rituxan, since that was the treatment I had (though I didn't use this program to help with payments). The manufacturer will help with co-pays.
In the last few years, I've been trying to learn and write more about emotional and mental health for Follicular Lymphoma patients. Those issues get ignored a lot.
Lately, I've been trying to learn more about financial issues, too. I've been very lucky that FL hasn't had too big a problem for me financially. But it certainly affects others.
More and more Lymphoma advocates are pointing out financial issues. Treatments have to show what kinds of physical toxicity that patients can expect (physical side effects), but we don't hear much about what is called "Financial Toxicity." New treatments can help us live longer, but patients need to know the financial cost. It's a major Quality of Life consideration.
I hope none of you reading is having Financial Toxicity problems, and if you are, I hope you're finding resources to help you.
Saturday, September 29, 2018
Tuesday, September 25, 2018
Duvelisib Approved for R/R Follicular Lymphoma
Good news for us -- the FDA has approved Duvelisib for Relapsed/Refractory Follicular Lymphoma.
Duvelisib, which is also known as Copiktra, was given Priority review by the FDA in April. The review looked at two clinical trials (the other one was for CLL/SLL, another type of slow-growing blood cancer).
Duvelisib is a PI3K inhibitor (Phosphoinositide 3-kinase inhibitor). It works (as all inhibitors work) by stopping something from happening, in this case, some signals that cancer cells receive that allow them to live and grow and not die.
There are a few PI3K inhibitors out there. Duvelisib is different because it works on two different isoforms of PI3K, the delta and gamma isoforms. (An isoform is a different type of a protein -- the different isoforms do the same job, but they might be controlled by different genes. So an inhibitor that works on more than one isoform should, at least in theory, do a better job than one that works on just one isoform.) It is taken by mouth twice a day, which should make it easier to administer.
The trial that the FDA looked at was called the DYNAMO study. It involved 83 FL patients weho were refractory to Rituxan and then either chemotherapy or RadioImmunoTherapy (RIT). In other words, they had to have had at least two treatments that stopped working. (The approval is for these patients -- it's not approved as a first treatment.)
42% of the patients in the trial had a response (1 Complete Response and 34 Partial Responses). Of those patients who responded, 43% were still responding at 6 months and 17% were still responding at 12 months.
Like all treatments, Duvelisib has side effects. They include things like diarrhea or colitis, nausea, increased risk of respiratory infections or pneumonia, and problems with blood cell counts (among others).
Duvelisib is one of those treatments that a lot of Lymphoma experts have been excited about (see this interview with Dr. Lori Leslie, for example). It's another option, and I think that's always a good thing.
The numbers aren't spectacular (42% is very good, but it's not a cure by any means). It will be interesting to see where it goes from here. My guess is that we'll see it in combination with other treatments (that seems to be where things are going these days).
Overall, though, it's good news. Another arrow for the quiver.
Duvelisib, which is also known as Copiktra, was given Priority review by the FDA in April. The review looked at two clinical trials (the other one was for CLL/SLL, another type of slow-growing blood cancer).
Duvelisib is a PI3K inhibitor (Phosphoinositide 3-kinase inhibitor). It works (as all inhibitors work) by stopping something from happening, in this case, some signals that cancer cells receive that allow them to live and grow and not die.
There are a few PI3K inhibitors out there. Duvelisib is different because it works on two different isoforms of PI3K, the delta and gamma isoforms. (An isoform is a different type of a protein -- the different isoforms do the same job, but they might be controlled by different genes. So an inhibitor that works on more than one isoform should, at least in theory, do a better job than one that works on just one isoform.) It is taken by mouth twice a day, which should make it easier to administer.
The trial that the FDA looked at was called the DYNAMO study. It involved 83 FL patients weho were refractory to Rituxan and then either chemotherapy or RadioImmunoTherapy (RIT). In other words, they had to have had at least two treatments that stopped working. (The approval is for these patients -- it's not approved as a first treatment.)
42% of the patients in the trial had a response (1 Complete Response and 34 Partial Responses). Of those patients who responded, 43% were still responding at 6 months and 17% were still responding at 12 months.
Like all treatments, Duvelisib has side effects. They include things like diarrhea or colitis, nausea, increased risk of respiratory infections or pneumonia, and problems with blood cell counts (among others).
Duvelisib is one of those treatments that a lot of Lymphoma experts have been excited about (see this interview with Dr. Lori Leslie, for example). It's another option, and I think that's always a good thing.
The numbers aren't spectacular (42% is very good, but it's not a cure by any means). It will be interesting to see where it goes from here. My guess is that we'll see it in combination with other treatments (that seems to be where things are going these days).
Overall, though, it's good news. Another arrow for the quiver.
Saturday, September 22, 2018
My Cancer Rainbow
My latest for Blood-Cancer.com 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:
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.
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:
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.
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.
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 Blood-Cancer.com, 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.
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 Blood-Cancer.com, 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.....)
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.....)
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