Treatments for Relapsed and Refractory FL

Every now and then, someone will publish an article that lists the treatments available for Follicular lymphoma patients. It's nice to read. Even if there's nothing new on the list, I always feel better having it all laid out in front me, knowing what's out there if (when) I need it.

Best Practice and Research: Clinical Oncology has gathered some recent articles on indolent lymphomas into its March 2018 issue. A few of them look at Follicular Lymphoma, including one of those articles that lays out treatment options.

It's called "Novel Agents for Relapsed and Refractory Lymphoma," written by Dr. Chan Yoon Cheah and Dr. Nathan Fowler. As the title says, the focus is on treatments for patients who have already been treated at least once, and either did not have a response to the treatment, or who had a response and then had the FL come back.

(Since I've already had treatment, I'm especially interested in all of this.)

The article starts out with a description of indolent lymphomas like FL -- slow-growing, often manageable, usually incurable. Ideally treatment will result in remission that lasts a long time and allows for a good quality of life.

The authors recommend that, if a relapse is suspected, a new biopsy be taken, to make sure the FL has not transformed into a more aggressive form. If it has, then there's a whole different set of considerations (and a whole different article to look at in this issue of the journal).

If there is no transformation, then there are a bunch of options: if no organs are threatened and there are no problems, then watching and waiting is OK. If treatment is necessary, they recommend that patients go into a clinical trial "whenever possible."

That's worth repeating. Patients should consider clinical trials whenever possible. If the symptoms are not life-threatening, then a trial may end up giving a response. If not, there's probably time to try something else (again, the relapsed FL isn't aggressive). And at the very least, the patient has helped us all by trying out something that might be approved for the rest of us (or might not -- that's valuable, too).

From there, the authors list some options:

• Anti-CD20 Monoclonal Antibodies. Rituxan is the biggie here, but Obinutuzumab has been recently approved. They work on their own (I had straight Rituxan), or in lots and lots of combinations with other treatments.
• Lenalidomide. Also known as Revimid, and R-squared when combined with Rituxan. Lenalidomide worked just OK on its own, but it has been great in that R-squared combination. I think it's one of the treatment that gets lymphoma specialists most excited. 
• PI3K Inhibitors. Idelalisib is the one they focus on most, though they also mention Copanlisib and Duvelisib. While these inhibitors have been successful, the authors also point out some serious side effects.
• BTK Inhibitors. Like other inhibitors, these stop (or inhibit) processes that cells go through in order to grow and survive. Ibrutinib is their main example, though there are some others in development. BTK inhibitors are another treatment type that seems to work better when it is combined with something else. (That's a big theme these days.)
• Bcl-2 Inhibitors. Again, these treatments stop cancer cells from doing the things that the immune system can't. Venetoclax is their main example here.
• Antibody Drug Conjugates. Monoclonal antibodies like Rituxan work by seeking out a protein on a lymphoma cell and attaching to it. A conjugate takes advantage of that -- while the antibody is attached, it delivers something else to the cell to kill it. 
• Epigenetic Therapies. This is another group of inhibitors, thugh it targets something different than the ones above. Vorinostat is an example (though it is one that seems to work well on its onw, instead of in combination with something like Rituxan). Abexinostat and Tazemetostat are two others.
• Immune Checkpoint Inhibitors. Nivolumab and Pembrolizumab are two examples. Another type of inhibitor, this one stops something that stops something else. The result is that the immune system is able to find and attack lymphoma cells.
• Chimeric Antigen Receptor T Cell therapy. Also known as CAR-T, which has been in the news quite a bit lately. T cells, part of the immune system, are removed from the patients and changed so that the T cells recognize the lymphoma cells as something that doesn't belong. A very promising treatment. Read more about it at CAR-T and Follicular Non-Hodgkin's Lymphoma, the blog run by our friends Ben and Will.

Note that these are novel agents -- new ones. You may have noticed that they don't even inlcude chemotherapy, RIT, and some other treatments that have been around for a while.

A couple of trends -- lots of these treatments seem to work better when they are combined with others. And lots of newer treatments are kind of anti-chemotherapy -- instead of trying to kill the cancer cells directly, they try to to stop (inhibit) other things from happening that the cancer cells need in order to survive.

The good news with this list is that there are a lot of options being tested for us. Some of them will end up working, though not all of them will.

And it's important to remember that all of these treatments come with side effects. They might be anti-chemo, in a way, and more targeted, but that doesn't mean they won't cause some problems. Ideally, researchers are finding ways to make sure the problems aren't as bad as the solutions -- the success of the treatment is worth the side effects.

Lists like this are valuable because they give you something to talk about with your doctor, if and when the time comes to treat.

And it's worth repeating -- none of this stuff becomes available to patients until it goes through a few clinical trials and then gets approved. "Whenever possible," we should think about participating in clinical trials, and helping to make it all happen.

Nicola Mendelsohn

This is another one of those Follicular Lymphoma news stories that a few of you have told me about. I've been thinking about it for a few weeks now.

On February 4 (World Cancer Day), the Sunday Times published a piece by Nicola Mendelsohn.

She is Facebook’s Vice President for Europe, the Middle East, and Africa – someone with a loud voice when it comes to spreading the word about something. In the piece, she describes her experiences as a Follicular Lymphoma patient.

I know that story.

As many of you know, I was diagnosed with Follicular Lymphoma a little over 10 years ago, and reading about her experiences was like reliving my own past.

She writes, “It was a terrible shock. I didn’t even feel ill….So when the doctor told me, I just kept thinking: ‘But I’m fit. I’m young’.”

Yup. As many of us know, lots of FL patients have no symptoms when they are diagnosed. At most, maybe a lump that won’t go away, that gets worrisome after a few weeks or months. Like Mendelsohn, I found a lump near my hip bone. And like her, I was in the best shape of my life at the time.

And like Mendelsohn, I was young – 40 years old (she was 46) – diagnosed with a disease that usually gets diagnosed in people in their 60s.

“[My husband Jon and I] gathered our four children — aged 13-20 — together and sat them down to explain my condition. Zac is our youngest and his first question was: ‘Are you going to die?’ That’s always the thought that comes into your head when you hear the word ‘cancer’. It is not a conversation I could ever have imagined having with them, not even in my worst nightmares, until it hit me in the face. It was the hardest moment of my life.”

Yup to that one, too. My kids were younger than Mendelsohn’s – 6, 8, and 10 – but telling them was also the hardest thing I’ve ever had to do in my life. Mine didn’t ask about death. They didn’t say anything. But I had my arms around my boys, and I felt my oldest child’s body tense up as I said the word “cancer.” It relaxed only when I mentioned the name Jon Lester, a pitcher for the Boston Red Sox, his favorite team, who had come back from aggressive Lymphoma a few months before.

There are other similarities between us, too. For both of us, our spouses have been our greatest gift. We both chose to watch and wait, holding off on treatment until symptoms get worse.  We are both able to enjoy a good quality of life. We both quickly found how important it is to have a community of people who understand what we’re going through (for Mendelsohn, that came, naturally, through a Facebook group, one that I have also been a member of for a while).

But the thing that connected with me most was the title of her article:

“My Life Sentence.”

Follicular Lymphoma is, as we all know, incurable.

About a month ago, I celebrated the 10^th anniversary of my diagnosis. When I was diagnosed, I read that the median survival rate was 8-10 years for Follicular Lymphoma patients. So 10 years was always kind of a special milestone for me. It was always something to reach for.

Many cancer patients hit a 10 year anniversary, and it’s a pretty clear sign that the cancer isn’t coming back. Not so much with an incurable cancer like Follicular Lymphoma.

10 years with FL requires a different kind of celebration. It’s not so much celebrating the day of the diagnosis.

For me, that day was about celebrating the 3,653 days since my diagnosis.

And it was celebrating all of the days that are to follow.

I guess that’s two more ways that I see my story in Mendelsohn’s.

The first is our shared desire to use our diagnosis to help others. For Mendelsohn, that means using the power of Facebook and its communities to bring people together for education and inspiration. For me, it’s the same thing, using my blog to listen, respond, help, and inspire.

The second is our attitude.

“Sometimes, when people receive a diagnosis like this, it can really change them: who they are, what they stand for, the choices they make. That hasn’t really happened to me. I’m on a different path now, but I’ve always been an optimist — someone who cherishes life and is grateful for what I’ve been given. Now I just feel even more grateful.”

It can be hard some days to feel optimistic and grateful. And that’s OK. That’s one of the things that online communities can be good for – to get you through the hard days.

But other days, you wake up and put your feet on the floor and try to be grateful for day number 3,654. You hug your spouse and kids a little tighter. You try to find ways to make your small corner of the world a better place. You cherish life.

So thank you, Nicola Mendelsohn, for sharing your story. For being a model for how to face adversity. For having a voice and using it to help us. I’m sorry you had to join this crappy club. But I’m really glad to have you here.

New Stanford Immunotherapy

A few of you have left comments or sent emails about this news story, and I'm finally getting around to writing about it. (I've been unusually busy these days. It's a good problem to have -- it means I'm healthy enough to be busy.)

The news comes out of Stanford University. The press release from Stanford is called "Cancer 'Vaccine' Eliminates Tumors in Mice."

This is one of those pieces of news that gets reported in a lot of places and gets people very excited. But those kinds of stories (for those of us who have been through this before) usually mean we need to slow down and read carefully and not get too excited.

The study being reported deals with an Immunotherapy method that seems simpler and less expensive than some others. (I'm thinking about CAR-T, for example.) In this method, two very very small amounts of two agents are injected directly into tumors. (In the study, which used mice, there were tumors in many different locations in the body, not just lymphomas.)

And these are really small amounts -- measured in micrograms (a microgram is one millionth of a gram). That's so small I can't even think of a way of comparing it.

The two agents that are injected are, first, a CpG oligonucleotide, which is a short piece of DNA. This works with cells nearby to hep activate a receptor on T cells called OX40. It's basically sending a  signal to cells that they need to get ready to attack. The second thing is an antibody that latches on to the OX40 on those T cells. When that happens, the T cells (part of the body's immune system that attack invaders) now know which cells to attack -- that antibody has told them what to look for.

The T cells do their thing and find and attack cancer cells. But even better -- T cells don't stay in one place in the body. They move around and look for more of those same cells to attack. So if there are tumors is in more than one place, the activated T cells will find them and attack them, too.

The T cells are targeted -- they will only look for the cancer cells they are told to look for. So when the researchers used a mouse with both Lymphoma and colon cancer, but only set t up for the T cells to look for the Lymphoma cells, the colon cancer cells were ignored.

The results were impressive. 87 of 90 mice had their cancer cells wiped out. The other 3 were given a second round, and that did the trick.

the results were good enough to have a phase I clinical trial start last month. While the mouse study involved lots of types of cancer, this trial will look at 15 Lymphoma patients.

There are lots of reasons to be hopeful about this. Immunotherapy is big these days, and this treatments seems to work in a way that makes sense -- finding ways to stimulate the immune system to do its job on cancer cells, which normally find ways to fool the immune system. It also has Dr. Ronald Levy as its senior researcher (he's a genuine Lymphoma Rock Star -- he played a big part in developing Rituxan).

But the usual cautions apply here. It was tested on mice, not humans. Obviously, there are going to be some differences.

But that's why we have clinical trials. A phase I study will see if it really works the way we think it will (and hope it will). It will give us a sense of safety -- what kinds of side effects that might come from this treatment, short term and longer-term.

We know that lots of promising treatments sound great when they are given to mice, but never make it to phase 2 or 3, let along to approval.

The good news is, even if it doesn't work, we'll learn something from that and try again.

(I know, I'm an optimist.)

Definitely something to keep an eye on.

(And again thanks to everyone who sent me the link.)

Oncologist Appointment

I had another oncologist appointment today. Everything looks good.

It's been 6 months since my last appointment. That's a little longer than usual. In fact, my oncologist told me last time that he'd be OK with seeing me once a year. I know lots of long-time patients will wait that long between appointments. I also know that the majority of the time, if Follicular Lymphoma progresses, it's the patient who notices, rather than a blood test or scan or doctor's check-up.

Still, I like knowing that it's only 6 months between visits. It's comforting.

(We all deal with this in the whatever way makes most sense to us, right?)

I've been seeing Dr. V. Unlike my last oncologist, Dr. V is a lymphoma specialist. I have nothing against generalists, but I like having an oncologist who knows a lot about my disease. We usually have good conversations.

The appointment was pretty standard. I had blood drawn first, and then went in for a chat with the doctor. He asked if everything seemed OK, if I was experiencing any problems he should no about. Yes, everything seems OK. And No, nothing unusual. He did a physical exam, feeling around for any swollen nodes or organs I might have missed. No problems there.

We talked about my next appointment. Again, he offered to let me go for a year. "If there are any problems before the next appointment," he said, "you can always call me...or someone else...."

Wait -- what is that supposed to mean?

And then he told me -- he was offered a job doing Immunotherapy research at Memorial Sloan Kettering in New York.

Ugh.

But I can't blame him for going. He's fairly young, and getting the chance to do that kind of work in that kind of hospital is fantastic. As he said, he'll be surrounded by established researchers and he will learn a lot. If I had the chance to do something similar, I'd jump at it, too.

And so, I came home with the good news of having good blood work and no new symptoms, but the bad news of needing to find a new oncologist. This will be my 4th one in a little over 3 years.

And so, I start the search again.

I will say again, as I have said before, I realize that I am lucky that I even have a choice. There are plenty of Lymphoma patients who do not -- they live in an area where there is only one oncologist, or their health care system tells them who they are able to see. As unlucky as I am to keep losing oncologists, I'm very lucky that I can look at a few and be the one to decide which one is for me.

The most important thing, though, is that I had a good check up, with no signs of my FL being anything but stable.

I wish you all that same good luck.

The Policy, Politics, and Law of Cancer: A Patient's Perspective

A few days ago, I was fortunate to be able to attend a conference called The Policy, Politics, and Law of Cancer, put on by the Solomon Center for Health Law and Policy at the Yale Law School.

I've written before about how much I'd like to attend a cancer conference, like ASH or ASCO, in person. This one worked out: I live nearby, my work schedule let me take a couple of days off, and the Solomon Center was kind enough to let people like me attend.

This wasn't like ASH or ASCO -- it wasn't a meeting of cancer researchers who were presenting information about the results of clinical trials. Instead, it was about policy in the United States -- the laws and regulations behind clinical trials, treatment approvals, insurance payments, and those kinds of things.

My Cancer Nerdiness has no limits. Give me a medical journal with BTK Inhibitor trial results, and I'm all over it. Let me be in a room with a bunch of law professors talking about legal rulings for the ownership of cancer patient tissue samples? Yes, please.

And the lineup of speakers was pretty amazing. One of the organizers called it "astonishing," and that wasn't really an exaggeration. The people who spoke included a winner of the Nobel Prize in Medicine; the winner of a Pulitzer Prize for his book on the history of cancer; the President-Elect of the American Medical Association; the Chief Medical Officer of ASCO (the American Society of Clinical Oncology); the Chief Medical Officer of the American Cancer Society; the Director of the National Cancer Institute; a former FDA Commissioner; Acting Director of the FDA's oncology office; heads of cancer-related nonprofits; officers from large and well-known cancer research hospitals; a whole bunch of professors from some big name law schools and medical schools; and a few others with important positions (and opinions) that have an effect on how cancer patients are treated.

As patients, we tend to focus on the clinical part of it all -- which treatments are available, which will work best, and which will give me the fewest and most manageable side effects. But before we sit down in the treatment room, there is so much to the process that we don't see, and that we aren't much involved in. And that process has problems. That's what this conference was all about.

The conference lasted a little more than a day -- a panel and a keynote speaker Thursday night, and four more panels and a speaker on Friday. I have about 20 pages of notes from the sessions. I'm not sure how much detail is worth sharing here. But there are definitely some lessons for patients to be learned.

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The overwhelming feeling that I had as I sat there listening to these folks was, This is all really, really complex. The panels were put together really well, with each of the panelists representing a different perspective on a topic. So, for example, for a panel on the costs of developing drugs, the panelists included someone from an investment firm (who might put up the millions of dollars it costs to develop a drug), a pharmaceutical company (who does the research, testing, and marketing of the drug), the FDA (who approves and regulates the drug), a cancer hospital (who gets it to patients and figures out how to make sure it is paid for), a law professor (who studies legal and policy issues on this topic), and the head of a nonprofit (who represents the interests of patients).

With each of those people giving their point of view, it was pretty easy to see why there are problems with the whole process -- getting patients into trials, the high cost of cancer treatments, deciding who gets government support for their research, the frustrations that companies have with the approval process. Everyone makes a good case for why their problems are important.

And that was just one panel. There were four more like this, with even more perspectives being given. With everyone doing a good job of representing their perspective, it's easy to see why it all came off as overwhelmingly complex.

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If there was a perspective that seemed to me to be under-represented, it was the patients'. Of course, being a patient myself, I would think so. And I also get that, when they were putting this all together, there were only so many chairs that could be filled on the stage, and honestly, if I had to choose between a Nobel Prize winner or a legal expert and a patient, I'd probably leave out the patient.

And that isn't to say patients' voices were left out completely. Just that I would have liked more of them.

But the voices that did represent patients were loud. And that made me happy.

Those voices included Nancy Goodman, founder of Kids V Cancer, who openly disagreed several times with panelists who seemed to put other interests ahead of patients' interests; Ellen Sigal, founder of Friends of Cancer Research, who had to remind her panel a few times that the patient perspective had to be included in these discussions; and Dr. Barbara McAneny, incoming President of the AMA and a community oncologist (one who doesn't work in a big research hospital), who pointed out the problems that clinical trial design have that result in difficulty with recruiting patients (making it hard for those who have to travel, for example).

These weren't the only voices representing patients. But they were the ones that I drew big stars next to in my notes.

Now, given the lineup, I wasn't really expecting most participants to be patients advocates. Most of them would probably argue that they do have patients in mind. Drug makers ultimately want to develop treatments that help patients, after all. But they also need to make money for shareholders -- that's their first priority. Even hospitals are pro-patient. But they also need to make sure the hospital stays open -- they have to focus on getting paid. No one expects them to give away care for free. (At least not in our current system.)

Ultimately, the purpose of the conference was not to come up solutions -- no one expected 24 hours in Connecticut would solve problems that are this complex. The purpose was to shine a light on the problems, as one speaker put it.


And a light was certainly shone. If there was one thing that everyone agreed on, it was that the system was broken.

How to fix it is the problem. Everyone wants a solution that will benefit them, or at least not make them give up too much of whatever benefit they have now.

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So what does all of this mean for patients?

Well, to me, it seems clear that most of the players in this game are in it for themselves. That's not a criticism, really -- it's a reality. As several speakers pointed out, the system of developing, approving, and paying for cancer treatment has evolved in a way that will make it unsustainable. At some point in the future, treatments will simply be too expensive, even for patients with health insurance. At some point, something -- or many things -- will need to change.

So patients need to make sure our voices are heard.

The easiest way to do that is to become an advocate. (And when I say "easiest," I mean the way that is most straightforward, not the way that will involve the least work). I know from your comments and emails that you are all used to being advocates for yourselves, making sure you get the best care. It's a lot more work to be an advocate for other patients, too.

Sometimes it's lonely work.

If that's too much (and I completely understand that it can seem overwhelming), the next best thing is to support organizations that work for patients. Many voices, speaking together, can get very loud.

Patients Against Lymphoma, the folks who run Lymphomation.org, are active in representing patients. Their site has an advocacy page that is worth looking at.

The Leukemia and Lymphoma Society is also active in advocacy. They make patients aware of issues that need patient voices.

The Lymphoma Research Foundation does the same thing.

And there are plenty of local agencies, too, that fight for patients in their states.

The fact is, there are limited resources when it comes to helping cancer patients, and they are even more limited when it comes to helping lymphoma patients, specifically. You don't need to lead your own nonprofit organization -- not all of us can do that. (Pretty sure I can't.)

But a phone call or an email, letting people know what you think, can go a long way toward making sure that decisions are made in ways that give the most help to patients.

If I learned anything at the conference, it was that those patient voices are desperately needed.

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I want to thank the organizers of the conference, for getting all of those great people together in one place, and for letting me be a part of it.

I'm glad I could see that light being shone.

(But there's still lots of work for all of us to do.....)

RCHOP + RIT + Rituxan Maintenance in FL

There was a lot of comment a few weeks ago when I wrote about CHOP vs RIT, so I thought I'd add more to that conversation.

A couple of weeks ago, The Lancet Haematology released the article "R-CHOP, Radioimmunotherapy, and Maintenance Rituximab in Untreated Follicular Lymphoma (SWOG S0801): A Single-arm, Phase 2, Multicentre Study."

This study is a little different from the one I wrote about last month. That study was a much longer follow up, and compared CHOP + Maintenance to CHOP + RIT + Maintenance.

This study from Lancet Haematology is a single-arm study -- it isn't comparing two treatments directly, but instead looks at just one group of patients. It also looks at a much shorter follow-up period (just 3 years).

Still, it has some interesting things to say.

The participants were Follicular Lymphoma patients who had not had any treatment. They were given R-CHOP for 6 cycles, followed by RadioImmunoTherapy within 12 weeks after the last CHOP dose (in this case, the RIT was ¹³¹iodine tositumomab, or Bexxar), and then up to 4 years of Rituxan Maintenance (every 3 months).

The results were about what we expect from RIT -- Progression Free Survival at 3 years was 90%.

The researchers' interpretation of the results is where it gets interesting. They say there was "near universal responses" from the R-CHOP and RIT. However, 84 patients signed up for the trial, 73 completed the R-CHOP and RIT, 69 registered for the maintenance, and only 41 completed all 4 years.

That's a big drop. The researchers note that most of the people dropping out the study did so during the maintenance phase, and suggest that 4 years might be too long for a lot of patients. (Standard length for maintenance is usually 2 years, though that can vary for different patients.)

There was a decent list of side effects from this treatment as well, mostly related to nerve issues and blood count drops (which are fairly typical for these treatments). But there were also 7 cases of patients developing another cancer in that 3 years, with 4 of them resulting in death, with 9 patients overall with "possible treatment-related deaths" (it's hard to know for sure, for example,  if the patient who died from cardiac arrest had that result from CHOP, which can cause heart damage).

This seems, at first, like bad news for Rituxan Maintenance (which is still kind of controversial). I think, though, that it says something about extra long Maintenance, rather than Maintenance in general. And it's worth pointing out that, even though a lot of patients didn't complete the full 4 years of Maintenance, it's possible that not all of them did so for health reasons -- some might just not have been able to commit to 4 years of doctor's appointments, or got good news after 2 years and decided that was plenty. So 4 years might be too long, but it could be for a bunch of reasons.

As for the RIT, this strikes me as more evidence that it works. (This is a good time to remind you all that I'm not a doctor or a cancer researcher, just a patient who reads a lot.) It fits with other studies of CHOP + RIT, in terms of PFS and side effects (secondary cancers have been reported with other studies of RIT as well).

Like with the other study from a few weeks ago, it frustrates me that a treatment that seems to work so well is not used more. There is a newer RIT treatment being tested in Europe called Betalutin that has shown some success in trials. One trial protocol suggests that it could be tested in clinical trials in the U.S., but I'm not sure anyone has enrolled yet. I'm looking into that a little more -- maybe I'll write about it soon. (I have a bunch of other posts already on my list.)

So, perhaps mixed results from this one, but still some good news, and worth looking to see if it goes to a phase III trial (which would be hard, since Bexxar isn't available anymore) or there is a longer-term follow up.

Happy World Cancer Day!

Happy World Cancer Day, everyone!

I know it's traditional to wish someone a "happy" holiday, and I also know that a day focused on cancer isn't necessarily a time to feel happy.

But I look at it this way:

Every year, on my diagnosiversary, I tell people that I am celebrating the day. And my wife is always a little uncomfortable with the idea of "celebrating" the anniversary of being told I have cancer.

But I always tell her this: We're not celebrating that day. We're celebrating the 3,650 days since that day. All the days I've been alive and able to find some reason to celebrate each day.

Am I really that positive all the time? Yes. Yes I am. Last week, my daughter and I went to the gym for a workout, and as we were leaving, the young woman at the reception desk stopped us to say there was something wrong with our paperwork.

We stopped for a few minutes to straighten it all out. The young woman said to me, "This might be a stretch, but do you have your driver's license with you? I know lots of people don't take it into the gym with them."

"Oh, I have my license," I said to her, taking it out to show her. "My photo looks so good, I carry it with me everywhere."

The young woman laughed -- probably not so much because of what I said, and more because of how embarrassed my 16 year old daughter was that I would say such a thing to a stranger.

But that's not the point. Even with cancer, we have to find the joy.

And even in things worse than cancer, like driver's license photos.

The theme of World Cancer Day this year is, again, "We Can. I Can."

As individuals, we can do things to try to prevent cancer, like do monthly checks. Tell your family and friends to subscribe to Check 15, a monthly cancer check reminder. They release a funny video every month on YouTube (and Facebook and Twitter) reminding you to check for cancers (breast, testicular, skin -- things that someone might notice by looking and feeling around). They just released their 50th monthly video a could of weeks ago. If you watch carefully (about two and half minutes in), you might even catch a glimpse of Lympho Bob. Fun stuff!

And together, we can make things happen, too. We can make others more aware of cancer-related issues, like funding for research, and the importance of clinical trials. Many voices working as one will always have a greater impact than single voices.

So find reasons to celebrate today. And the days that led up to today.
And think about ways to make tomorrow better -- for yourself, and your loved ones, and the rst of the world.

But whatever you do, take the day as a reminder to find the joy.

Two Surveys

I want to pass on two surveys to you all, and encourage you to take both of them.

I have taken both, and they each take about 10 minutes to complete.

Both are meant for Lymphoma patients of all kinds, and are meant to gather information about our experiences as patients so the organizations can find ways to better help us.

The first one is the 2018 Lymphoma Coalition Global Patient Survey.

 The Lymphoma Coalition is an organization made up of other Lymphoma support organizations -- 71 different organizations from 48 different countries (including my friends at Patients Against Lymphoma/Lymphomation.org and Lymphoma Canada).

So this survey is truly "global." It is conducted every 2 years, and the information is used to make the world aware of trends -- things like how accessible lymphoma treatments are. The information can be used by individual organizations to advocate for patients.

The second survey is from WEGO Health. (You might remember that I made a video for WEGO Health a few months ago.)

WEGO is looking for information about how much Lymphoma patients know about Lymphoma, especially about sub-types other than their own. (It's not a quiz about Lymphoma sub-types or anything like that -- just asking you how well you think you know about them.)

Like the first survey, this one takes about 10 minutes. Read carefully -- you have the choice to answer one about Leukemia OR one about Lymphoma, so respond to the right one.

You can find the WEGO Health survey here.

Thanks for your help -- both organizations appreciate it.