Monday, September 18, 2017

Another FDA Approval for Follicular Lymphoma: Copanlisib

The big Follicular Lymphoma news from the weekend was the FDA's approval of Copanlisib, also known as Aliqopa, for relapsed FL.

Copanlisib is a type of kinase inhibitor. Like other inhibitors, it doesn't work by directly killing a cancer cell, the way traditional chemotherapy does. Instead, it works by stopping (or inhibiting) a process that keeps the cancer cells alive.

In this case, Copanlisib stops an enzyme that is part of a long chain called the PI3K/AKT/mTOR pathway. In that pathway, a bunch of reactions happen -- an enzyme tells a protein to tell something else that something needs to happen for the cell to grow, or divide, or just stay alive. there are other treatments that target different parts of the pathway, but Copanlisib targets that first part, the PI3K part. Idelalisib is another PI3K kinase inhibitor -- it's a good one to target for Follicular Lymphoma. There are least two other kinase inhibitors being developed for FL.

Copanlisib was given accelerated approval by the FDA, which means it went through the approval process quicker than it normally would. It also means that the approval isn't complete yet. The approval was given based on a phase II clinical trial, that showed good results on a smaller patient population. A phase III trial will need to confirm that Copanlisib is as good as it seems.

The approval is also for a fairly narrow group -- Follicular Lymphoma patients who have relapsed, and who have had at least two prior systemic treatments (a treatment that involves the entire body or "system" -- something like chemotherapy).

The approval points out that many patients who have this kind of treatment history are having a hard time finding something that works, and Copanlisib does seem to work for a lot of them. That phase II trial found that Follicular Lymphoma patients in the study had a 59% Overall Response rate, with a median response of just over a year. Pretty good when you're having trouble finding something that works, and unfortunately, there are a lot of folks in that position.

Of course, there are side effects. Some of them are common in lymphoma treatments -- since they go after immune cells, the side effects involve different types of lowered immunity. But Copanlisib also has some other different side effects, like hyperglycemia, or high blood sugar. Copanlisib effects an enzyme that is involved in insulin production, so the body doesn't process blood sugar as efficiently as it should.

So we have another arrow in the quiver -- another treatment that can be used if the situation is right. That's always good news.

In addition to the phase III trial that will confirm that the approval was justified, there is at least one other trial involving Copanlisib for FL. This one combines it with immunochemotherapy (R-CHOP or R-Bendamustine). Lots of treatments these days seem to work better as a combination with other treatments, so it makes sense that this is being explored.

Lots to look forward to -- potential treatments that could help us all in the future.

(This is a good time to remind you all that treatments can't be studied and approved with people joining clinical trials. So if you are in the unfortunate position of needing treatment, talk to your doctor about clinical trials that might be appropriate -- check here to learn more.)

Friday, September 15, 2017

Happy Lymphoma Awareness Day!

A happy World Lymphoma Awareness Day to you all!

It's an important day for us all. Our special day. Kind of like Mother's Day is for moms, but it's less likely that we're getting breakfast in bed.

It really is an important day, though. I say this a lot when this day rolls around, and it's still true -- it feels strange to set aside a day like this, when I have been aware of lymphoma every day since January 15, 2008.

And if you're reading this blog, my guess is that you are also feeling the same, or something like it. Awareness isn't really an issue for a lot of us.

But Lymphoma Awareness Day isn't just for us. I've been spending a lot of time on various internet support groups and discussion boards devoted to lymphoma, and I'm always amazed at the misinformation people have gotten about lymphoma and other types of cancer.

Part of that is not knowing where to turn. Part of it is, honestly, people looking for shortcuts to getting better, and believing that those shortcuts exist. And for a lot of people, that lack of awareness is from fear -- they either don't want to know because it's easier to just not think about it all, or they fear things like the side effects of chemo, so they look for other ways that they hope will cure them.

Some knowledge would go a long way. there's so much to be hopeful about, so much less to fear than it seems.

OK, my shameless plug -- I talk about some of this in a piece I wrote for The Mighty for Lymphoma Awareness Day. You can read it here. Feel free to share.

Lots of other great resources out there, too, for yourselves and for sharing with others:

And lots more out there. The important thing is, you can do your part -- very easily -- to help raise awareness today, and to do a little extra something to make yourself more aware of your disease. And if you missed The Day, no worries -- it's Lymphoma Awareness Month, too, so you still have plenty of time to spread the word.

Enjoy the day. And if no one served you breakfast in bed today, then have two desserts at dinner. You deserve it.

Monday, September 11, 2017

The Emotional Side Effects of Cancer Treatments

This past week, the European Society for Medical Oncology (ESMO) annual meeting took place. There's some good stuff coming out of it. I know I tend to focus on oncology meetings that take place in the United States, like ASCO and ASH, but I'm becoming more aware of some of these meetings outside the U.S. lately. I plan to look at a couple of Follicular Lymphoma-related presentations over the next week or so.

But first, a report about a session called "Change of patient perceptions of chemotherapy side effects in breast and ovarian cancer patients." I came across this on Facebook, where it was posted by Patients Against Lymphoma, the folks who put together (While I'm here, I might as well link to their Facebook page, too -- consider Liking it if you're on Facebook.) I'm not focusing so much on the breast and ovarian cancer part of this, but on the results that are talked about in the link -- the emotional side of cancer treatments.

I've been focused on this subject a lot lately -- the idea that Follicular Lymphoma is as much an emotional disease as a physical disease, since for so many of us, we watch and wait. Sometimes that watching comes before we even get treatment, and sometimes it comes after we get treatment, even if the treatment was successful. It's kind of the way it goes with an incurable cancer -- we're always waiting for the Big Return that we're told is coming at some point. There's an emotional side effect to all of that, even when there are no physical side effects.

The ESMO presentation was a follow-up to research done 15 years ago. Patients were give chemotherapy for breast or ovarian cancer, and given a survey before, during, and after they had chemo. Patients were presented with two sets of side effects of chemo. One set listed physical side effects, and the other non-physical side effects. they were asked to choose the 5 from each list that concerned them most. then those ten were put together, and they were asked to choose the top five in the combined list.

What the researchers found was that, over time, the concerns change. At the beginning of chemo, there is more emphasis on physical side effects. But as they get used to these, and they get treatment (anti-nausea drugs for example), the non-physical side effects become much more of a concern.

And the researchers noticed. As the lead researcher said, "As doctors, these findings might lead us to consider possible improvements to the accompanying therapies we offer our patients....There is also a clear case for providing stronger psychological support to address patients' social anxieties and family-related concerns."

I like to hear that. I like when doctors recognize the emotional needs of patients, because I think they too often forget about them.

And that matters a lot for Follicular Lymphoma patients in particular. My blood work might be "rock solid," as Dr. R used to say to me. But my anxiety might be spinning like the centrifuge that separated my blood sample -- anything but "rock solid." I'm not so much worried about right now. I might be worried about what happens six months from now, when my daughter starts looking at colleges, and I worry about how I'll pay for it if I get sick. With FL, the worry always seems to be about later.

More from one of the research team members: "The results show that there might be a gap between what doctors think is important or disturbing for patients, and what patients really think. Physical, psychological, social and spiritual support is needed at every stage of the disease....Going forward, similar studies also need to be done for other types of cancer - including analyses of how an optimal management of side effects influences the disease trajectory."

Amen to that. I would welcome and encourage researchers to keep looking into issues like the emotional needs of patients, the ways Quality of Life are affected by treatments, and the unique needs that come with different types of cancer.

In the meantime, you can help yourself by being honest with your doctor and asking for help if you need it. Most hospitals have some kind of emotional assistance programs (a social worker, or psychologist, or some other therapist), so a good oncologist should know about where you can get help.

And there's no shame in needing help. You wouldn't try to tackle the physical problems of having cancer all by yourself (at least I hope you wouldn't), so why would you try to deal with the emotional problems by yourself?

Thursday, September 7, 2017

Vitamin C and Follicular Lymphoma

So while we're on the subject of Vitamins and Lymphoma, let's talk about Vitamin C.

In my last post, I wrote about a recent study involving Vitamin D -- it showed that low Vitamin D levels might result in lower survival rates for Follicular Lymphoma. The researchers admit that more study is needed on this, so don't go swallowing bottles of Vitamin D pills just yet. Talk to your doctor about checking your levels and why it's important.

The journal Cell recently published a heavy research article on Vitamin C called "Restoration of TET2 Function Blocks Aberrant Self-Renewal and Leukemia Progression." When I say "heavy," I mean it has some serious discussion of cell-level processes and genetics. Cell is not a journal about clinical oncology and how doctors treat patients. It's about what goes on in our cells, on the smallest level -- the normal and the abnormal.

So I was happy to get some help with this heavy stuff from an article on Lymphoma News Today, which included some explanation from the researchers in the study.

Apparently, Vitamin C has been an alternative treatment for cancer for a long time -- people think that taking lots of it will stop their cancer. While there is some truth to that (Vitamin C was shown to kill cancer cells in a test tube), research in 2008 on real people showed that giving a large dose of Vitamin C by infusion had few side effects, but also had no effect on cancer. But there was some suggestion that maybe Vitamin C needed some help if it was going to work.

The recent article in Cell helps explain why. Basically, one of the ways that blood cancers form is because of a problem with an enzyme called TET2. When TET2 isn't doing its job, stem cells can't turn into white blood cells. Think of stem cells as baby cells that are supposed to grow up in to different kinds of adult cells. TET2 helps that happen. When TET2 doesn't work, the stem cells don't grow up, but they don't die, either. They go into the blood stream and take up room and cause problems.

So when TET2 isn't working, your body is basically overrun by mutant zombie babies. Let that image sink in for a minute.

Vitamin C seems to help TET2 work again the way it is supposed to by blocking the thing that makes TET2 stop working. No more zombie babies.

But the Vitamin C needs help, too. The researchers found that something called a PARP inhibitor helps the Vitamin C do its job. Inhibitors of different types are becoming more common in all kinds of cancers, including Follicular Lymphoma. The PARP inhibitor stops a protein from fixing DNA in cancer cells, causing them to die. A PARP inhibitor is used now on some kinds of ovarian cancer.

The lymphoma connection here is that there is at least one PARP inhibitor being tested on Follicular Lymphoma.

All of this sounds great. But like the Vitamin D study, there needs to be a lot more research. All of the work done for this article was done on mouse models. there are a lot of steps that need to be completed before this is ever shown to be safe and effective on real FL patients.

So that's the good thing about this study -- we might have an actual treatment strategy come out of it someday (years from now).

In the meantime, while you are avoiding the Vitamin D section at the pharmacy, go ahead and avoid the Vitamin C section, too. At least until you talk to your doctor about whether or not you need Vitamin C for something other than cancer.

Bottom line, as always -- stay informed, talk to your doctor, and if a cancer "cure" sounds too good to be true, it probably is.

Monday, September 4, 2017

Vitamin D and Follicular Lymphoma

The Blood Cancer Journal just published an article "Vitamin D Insufficiency is Associated with an Increased Risk of Early Clinical Failure in Follicular Lymphoma." This isn't the first study on Vitamin D and FL, and it builds on the others in some important ways.

Let's go back a couple of years first. In 2015, the Journal of Clinical Oncology published a study on Vitamin D and FL that said low blood levels of D were associated with lower Overall Survival in patients who had been given Immunochemotherapy (Rituxan or RIT + CHOP). There were lots of alarming headlines in the cancer media about the study, and is the case too often, many of them misrepresented what the study actually said. I wrote about it in the blog -- the study's conclusion said "serum vitamin D might be the first potentially modifiable factor to be associated with FL survival." Might be. It was an interesting study that called for more research before we could know for sure.

The Blood Cancer Journal study gives us some of that research. But let's get this out there right away -- even these researchers say we need more research ("Further investigations are needed to determine whether outcomes could be improved in FL by supplementation with this readily available vitamin.")

I know I haven't even gotten to what's in the research yet, but I think it's really important to make sure, near the beginning of this post, to remind everyone to not jump to conclusions. I've been reading a lot of stuff online lately where people are taking small bits of information about cancer and making them into Big Things that they aren't. This study isn't saying Vitamin D will cure your cancer. I want to be clear about that.

So, about that research.

The researchers looked at 642 Follicular Lymphoma patients who were enrolled in the study between 2002 and 2012. Unlike the earlier JCO study, which looked only at patients who were given R or RIT + CHOP, the patients in this study had a number of different treatments, including R + chemo (CHOP, CVP or Bendamustine), but also straight Rituxan, watch and wait, and other treatments (which they don't list separately). That range of treatments is important, given that there really isn't a standard treatment for FL.

The researchers measured whether low Vitamin D levels had an effect on Overall Survival, Lymphoma-Specific Survival (whether lymphoma was the cause of death), and EFS12, or Event Free Survival at 12 months (this same research team had found that EFS12 was a predictor of Overall Survival -- that is, having FL get worse or come back within 12 months was a sign that Overall Survival was lower than with other patients).

The results (after a median follow-up of just under 5 years) --
For patients given R + chemo, low Vitamin D levels were associated with lower Overall Survival, Lymphoma Specific Survival, and EFS12.
For patients who watched and waited, low Vitamin D levels were associated with lower Overall Survival, but not EFS12. Lymphoma Specific Survival could not be calculated.
For patients given just Rituxan, low Vitamin D levels were NOT associated with lower EFS12, and Overall Survival and  Lymphoma Specific Survival could not be calculated.
When all patients receiving any kind of Rituxan treatment were lumped together, low Vitamin D was associated with all three -- lower OS, LSS, and EFS12.

The researchers are careful to say that more research needs to be done to confirm all of this, though they are especially hopeful that the study can help patients with low EFS12. While different studies have shown that low EFS at 12 or 24 or 30 months can predict low Overall Survival, the challenge is finding a treatment that can help those FL patients with an aggressive form of the disease. Maybe low Vitamin D levels are one way to help?

There are no easy answers here, as the calls for more research demonstrate.

But from my perspective as a patient, I would say that asking your doctor about your Vitamin D levels is probably a good idea. My own doctor (my regular doctor, not my oncologist) had me start to take Vitamin D supplements many years ago, and I continue to take them. She thought D levels were important for lots of reasons (none of them related to Follicular Lymphoma). Did my good D levels help when I took Rituxan? Have they helped me not need treatment since then?

Who knows? Follicular Lymphoma is a funny disease, and it goes down such a strange path that it's hard to know if any of the things we do (aside from actual treatments) have any effect. Follicular Lymphoma is like a toddler on a walk through the woods. It runs ahead sometimes, then stops and looks at bugs, then walks back in the direction it started, then lies down and cries in the grass, then walks ahead again. Same with FL, with its slow progression, waxing and waning, speeding up a little and slowing down again. We really can't know if our diet or exercise routine or supplement regiment is really doing anything for us. We really can't put our hope in something we can buy from a grocery store.

That said, ask your doctor about Vitamin D. It's worth having that conversation.

Friday, September 1, 2017

CAR-T Approval

Some really excellent news yesterday, one of those stories that's all over the internet, and not just getting talked about in the Lymphoma community --

The FDA approved the first CAR-T treatment. This is a big deal. It's a real victory for Immunotherapy -- using the body's own immune system to fight cancer.

Just a quick reminder of what CAR-T is. First, it stands for Chimeric Antigen Receptor T cell therapy. Basically, what happens is T cells are removed from the body. T cells are types of immune cells -- they attack invaders. But not cancer cells, which find ways to make T cells ignore them.

After the T cells are removed, they are changed so they DO recognize cancer cells as bad guys. They are put back into the body, and then the changed T cells attack the cancer cells. The treatment is personalized -- only the patient who had them removed and changed will benefit from having them put back.

(Dana Farber Cancer Institute has a nice article explaining how it works, with a very helpful video.)

The new treatment is called Kymriah, though in clinical trials it was called CTL019 or Tisagenlecleucel. It has been approved for pediatric and adult Acute Lymphoblastic Leukemia, a very aggressive type of blood cancer. Another CAR-T treatment is under review for aggressive lymphomas, including transformed Follicular Lymphoma.

How big a deal is this? I'll let Ben tell you. He runs the blog CAR-T and Follicular Non-Hodgkin's Lymphoma, with help from William -- both are active readers of Lympho Bob, and their blog does an excellent job of keeping up with new developments in the CAR-T world. Ben is a Follicular Lymphoma patient who received CAR-T, and William's wife is also a CAR-T patient with FL. Ben called it "Truly a momentous day in the long and winding history of this life-saving therapy," and he is "Excited to finally see it becoming more widely available to many more patients."

But Ben also points out that there is a high price tag for this treatment -- about $475,000, making it one of the most expensive cancer treatments ever. The company that makes it  has responded to criticism about the price by saying that it is an expensive process -- each patient gets their own personalized treatment. They have also said that any patient who doesn't get a Response within a month will not have to pay for the treatment. (Of course, if the treatment fails on day 45, you're out of luck -- in a couple of ways.)

The treatment has been very effective in trials, but it certainly is not without risks. The biggest of these is cytokine release syndrome, a response from the body to all of those T cells that results in possible fever and brain swelling. One patient in the Lymphoma trial died from this side effect.

Still, the overall news is very positive, and the approval for Kymriah is considered a positive sign for KTE-C19, the Lymphoma CAR-T treatment. It will be interesting to see how many more cancers get a CAR-T treatment, or if the cost will discourage patients and doctors, and thus pharmaceutical companies. But if not, this could be big news for all three.

And I'm always in favor of more options for us as patients.

Monday, August 28, 2017

FDA Priority Review for Obinutuzumab

The FDA announced today that  it will grant Priority Review for Obinutuzumab for patients with untreated Follicular Lymphoma. It's good news.

Let's break this down.

First, "Priority Review" is one of the categories that the FDA (which approved cancer treatments and other things in the United States) developed to try to speed up approvals. A Priority Review is given for a treatment that make provide a significant improvement over what is already available, and it means that a decision will be made within 6 months. For Obinutuzumab (also known as Gazyva), the approval should come before the end of the year.

So what is Obinutuzumab improving on? Why, Our Old Pal Rituxan. They are both Monoclonal Antibodies (which is why "mab" is at the end of the name, like it's at the end of the name Rituxumab and the beginning of Mabthera -- other names for Rituxan).

Like Rituxan, Obinutuzumab targets the CD20 protein on B Lymphocytes (the white blood cells that cause Follicular Lymphoma). What makes it different is that it is humanized (Rituxan was developed from mouse cells) and in theory, that should cut down on some of the allergic reactions that people have to Rituxan (like the one I experienced).

Obinutuzumab is also glycoengineered. That means that sugar molecules are added to them in a way that makes them better at their job (which is to call out to the immune system to attack the cancer cells). The company that makes Obinutuzumab has a cute video that explains it all.

The FDA granted Priority Review based on the results of the GALLIUM trial, which compared Obinutuzumab + chemotherapy with Obinutuzumab maintenance to Rituxan + chemotherapy with Rituxan maintenance. In the trial, after 41 months, the Obinutuzumab patients had a 32% less chance of the disease getting worse.

It will be interesting to see what happens. I think there's a good chance that Obinutuzumab gets approved after the review. (Obinutuzumab is already approved for Follicular Lymphoma as a second line treatment -- for use by people who had taken Rituxan, but had it stop working within 6 months.)

I'm curious what happens after that. Will oncologists start using it in place of Rituxan? There are going to be a bunch of choices in that area soon -- biosimilars might be used in place of Rituxan, too. I have no idea where Obinutuzumab comes in as far as cost goes, and if the cost will make it worth choosing it over Rituxan, even if Obinutuzumab might work slightly better. old habits die hard -- lots of oncologists still go with CHOP, just because that's what they've always done.

As always, it's going to come down to an honest discussion with your doctor.

The important thing, though, is that we might have another choice when it comes to treatment.  And that's good news.

Friday, August 25, 2017

Follicular Lymphoma Videos: The Evolving Landscape for Treatment

We're in that slow period for Follicular Lymphoma news. After the big conferences in June and July, when all of the really interesting research gets shared, everyone seems to go on vacation for the month of August. I'm guessing we will see some more new FL material in a couple of weeks.

In the meantime, though, here are two things to keep you going.

First, OncLive has another video series on Follicular Lymphoma. I've linked to these before -- they post a series of short videos on a topic, putting up a new one every few days, so they form a series when they're all done.

This series is on the topic "The Evolving Landscape of Therapy for Follicular Lymphoma," and it features two of my favorite Lymphoma Rock Stars -- Dr. Bruce Cheson and Dr. Anas Younes. There are four videos in the series so far. I'm guessing there will be a few more.

It starts off with a short video on Diagnosing and Staging FL. At the end, Dr. Cheson mentions the Ann Arbor staging system vs. the Lugano system (named after the conference that takes place every year in Lugano). As he says, the Lugano system is very recent -- from 2016. The Lugano system involves using a PET-CT scan to help with staging. I don't know if it is used "officially" yet, though there are probably lots of people using it.

Other videos in the series (so far) look at Risk Stratifying (figuring out which patients are low, medium, or high risk), and figuring out the best treatments for those risks; and Triggers for Therapies (figuring out when to actually give treatments), something we all worry about, especially those who have watched and waited. There might be some more videos added to the series, so check back there in a few days.

It's all good stuff from two great Lymphoma experts. Not necessarily anything new, but always nice to see something that shows the up-to-date thinking of people in the lymphoma community.


My second item is about the WEGO Health Awards. As I wrote in July, I have been nominated for two awards from WEGO Health -- Best in Show: Blog and Best Kept Secret. A whole bunch of you endorsed me for these awards, and I am so very grateful. The endorsement period ends on September 1, so if you are inclined, please consider endorsing me if you haven't already done so. You can endorse me by clicking here; they will ask for an email address to make sure people don't vote more than once.

After the Endorsement period ends, the three health advocates with the most endorsements in each category will move on to the finals, along with two others who are chosen by a panel of judges. Overall winners will be announced in October.

Thank you all once again for reading. As I've said before, I would write this blog even if no one but my family actually read it (and for a few years, that was true). But it's even better when I have such great readers who don't feel obligated to send me birthday cards and make conversation with me at Thanksgving dinner.

Monday, August 21, 2017

Not Knowing What to Say

Someone I care about a lot was diagnosed with cancer a few weeks ago.

I remember those first few weeks myself. It was a very tough time. For me, the first 10 days or so was such a whirlwind -- getting the diagnosis, telling my young children, getting a bone marrow biopsy, seeing a specialist -- there was no time to think about it all, even as I was in the middle of it all. Once things slowed down a little, that's when things got real. That's when the fear really kicked in. That's when I held it all inside and fell into a deep, black well. It was not a good time.

My wife also remembers all of that, and, being a wonderful person, has been buying and mailing cards to our loved one since her diagnosis.

I bought a card, too, a few weeks ago. I felt like I should send one just myself, not one from our whole family.

But I haven't sent it. I just didn't know what to say.

Which is so strange. I mean, if anyone should know what to say, it should be me, right? I've heard the words "You have cancer." I've been through the testing, and some treatment, and the deep, dark well. I know.

But I've also been through all of that other stuff that comes with a cancer diagnosis -- the people saying nothing, or saying dumb things, or saying the exact wrong thing on the day that you really didn't need to hear it, and it throws you into another deep, dark well.

Fortunately, I saw my loved one yesterday. We don't live near each other (which is why we've been sending cards). And I got a chance to give a big hug (which often works better than any words can) and at least get a sense of how things are going (without coming out and asking, because we all get that question more then we want to hear).

Fortunately, my loved one is blessed with a what I think of as an Irish Outlook on the world -- knowing that life is hard sometimes, absurd most of the time, and best met with a big dose of humor. And an understanding that sometimes people say stupid things when they don't know what else to say, and that they mean well. Face-to-face, it was an easy conversation. My loved one is handling things.

But it still bothers me that sometimes I don't know what to say. Not just because I've been through this, but also because I've written a few thousand words about cancer every week for almost 10 years.  I learned that lesson, too, long ago -- sometimes people don't now what to say, but they say nothing, or they say something stupid. But in the end, they're saying what they think is the right thing to say.

Not many of complain about the words I use here, so I'm happy about that. But just in case, I'm sending a big hug to all of you, just in case. Sometimes that's better than words, anyway.

Thursday, August 17, 2017

Oncologist Appointment

Saw my oncologist today. Everything looks good.


Before I get to that, I want to give myself a plug for another article that I had published on The Mighty.  It's called "Monetizing My Cancer (Or, How I Almost Became a Kardashian)," and it tells the tale of how I tried to make some money off of this blog (and failed). Please take a look if you get a chance.


As for my oncologist appointment:

I was pleased that I was able to see Dr. V again. You might remember my recent history with oncologists. I saw Dr. R for a long time, since I'd been diagnosed, and then he moved away. I was given an appointment with another doctor, a general oncologist who didn't listen to me  at all and talked to me like I was a child. I was getting ready to leave him when he retired. Dr. V was his "temporary" replacement, coming into the office only once a week, and teaching and seeing patients at a medical school for the rest of his time. He is still coming once a week. When we met last time, he and I talked about some of the treatments for Follicular Lymphoma that were being studied and were close to approval. We both got very excited about it all. I really liked him.

So I was happy to see him again. We didn't talk about treatments this time -- it was enough to know that I could if I needed or wanted to.

As always, the exam consisted of three parts: blood work, physical exam, and asking me questions. My blood work looked good (he said there was one number that was borderline high, but he wasn't worried about it). No new lumps or bumps. I had nothing to report as far as chills or fevers or night sweats.

We had a pleasant chat about my kids.

Nothing too exciting.

Which is something I appreciate in an appointment with an oncologist.

He again offered to make the next appointment for a full year from now, but said I could come back earlier if I wanted to. I took him up on the 6 month appointment offer.

So I guess you're stuck with me for a while longer.

Thanks for reading.

Sunday, August 13, 2017

Video Journal of Hematological Oncology

A few days ago, I posted some videos from the Video Journal of Hematological Oncology. This morning, I tried to watch a video that they had posted on Twitter, and I got this message:

I'm not a healthcare professional, so I didn't click. Which is too bad, because the video looked interesting.

I don't understand the logic of this apparently very new policy. It shows a deep misunderstanding of what it means to be a blood cancer patient in 2017. We have access to information -- lots of information. And a lot of it is crap. The VJHO has the opportunity to give patients (and not just healthcare professionals) access to that information in a way that is very easy to find and understand. Videos like theirs provide information that makes it easier for us to talk to our doctors about our conditions.

There are plenty of medical journals that are subscription-based; you can see an abstract, but not the full article, unless you pay. I completely understand that. But that's not what the VJHO is doing -- they are keeping it available for free, just telling patients that they can't come in.

That's really discouraging.

Their YouTube channel is still wide open, though. I won't post anything from it, but you might be able to find something interesting on there. (For now.)


Update (Tuesday, Aug 15):
I wrote to the VJHO, and received a reply from their editor. He explained that contributors to the journal, and the editorial board, are concerned about non-healthcare professionals misinterpreting what they see in the videos, which has some legal implications, especially for things that involve prescription medications. I understand the legal issues, though I disagree with some of the other reasoning. Still, I respect their decision. More importantly, he said that they were planning another video channel aimed at patients and caregivers, with some input from patients. I applaud them for that, and I hope their plans for the patient-focused video channel actually happen. I'll update you when I hear more.

Friday, August 11, 2017

Alternative Therapies & Follicular Lymphoma: It's Complicated

Yesterday, the Journal of the National Cancer Institute published an article called "Use of Alternative Medicine for Cancer and Its Impact on Survival." It looks at the use of Alternative Thrapies, and the news isn't good for people who make that choice. And while Lymphoma, especially Follicular Lymphoma, wasn't a cancer that was studied, it's important to think about this topic as it relates to that cancer that effects our lives.

The study looked at 840 patients with several types of cancer -- breast, prostate, lung, and colorectal.Two-thirds of the patients received Conventional Cancer Therapies, which the researchers define as Chemotherapy, Radiotherapy, Surgery, or Hormone Therapy. The rest took Alternative Therapies, by themselves, without Conventional Cancer Therapies. The main finding of the study is that those who took only Alternative Therapies had a lower survival rate than those who took Conventional Cancer Therapies.

There are a couple things that should be pointed out here. While they don't get into what the Alternative Therapies are exactly, they do see the problem with them as being that they are "ineffective and unproven." So while something like Rituxan doesn't exactly fall into any of their categories, it has been around for 20 years and saved and extended thousands of lives, so that doesn't qualify as either "ineffective" or "unproven." They mean treatments that have not been through a rigorous clinical trial process.

And it's also important to note that they are looking at Alternative Therapies on their own, not those that are combined with Conventional Cancer Therapy. That combination approach is sometimes called using a "Complimentary Therapy," since it is used as a compliment to traditional medicine, not as an alternative to it. does a nice job describing these three different approaches. Alternative Practice (they don't call it "medicine," and I agree with that choice) is unproven. Complimentary practices, as they say, help you work through Conventional Therapies: "Yoga for pain or stress relief is an example.  Exercise to help manage fatigue is another.  Such activities are sometimes called integrative medicine when used by medical doctors."  They refer to Conventional Cancer Therapies as "Evidence-Based Medicine," since those treatments have gone through trials to back up the science that created them. I think they do a really nice job of distinguishing between those three things.

Now, my guess is that anyone who has been reading Lympho Bob for a while knows that I am a strong advocate for Evidence-Based Medicine, and not so much into Alternative Therapies. So I will assume that you feel the same way.

Still, it's worth talking about why Alternative Therapies are tricky when it comes to Follicular Lymphoma.

As you know, Follicular Lymphoma is often slow-growing. And sometimes, it "waxes and wanes" -- gets better on its own, and then gets worse on its own, often while we are watching and waiting. So while we might be watching our FL, trying to be healthy, doing yoga three times a week and eating broccoli with every meal, it's tempting to think that it's the yoga and broccoli are the reason we  haven't needed treatment yet. But they probably aren't the reason -- it's just the nature of our disease.

Not that there is anything wrong with yoga and broccoli. They are both great. And if they make you feel good, that's even better. But they probably won't cure your cancer.

And I "probably" because maybe someday we might find out that yoga and broccoli, in some way, do have an effect on cancer. But that would only be after some very rigorous, scientifically-designed, evidence-based testing. And not because you saw on a message board that they might, or that a friend of a friend swears that they do.

As someone who watched and waited for two years before initial treatment, and then who has waited for almost 8 years since then, I know how easy it would be to think that there was something that I was doing that put me in the good position that I am in. But, off the top of my head, if I had to think about something I've done consistently in all that time, that might explain why I haven't needed treatment, it's probably been blogging. Writing about cancer has certainly been helpful for me, emotionally, anyway, but probably not physically. And there are lots of cancer bloggers who have unfortunately not survived for as long as I have.

Also, I have a hamburger and fries about once a week. I don't think that's helped either. Also, I drink Scotch, which probably hasn't helped, either. (Although I'm willing to sign up for a trial for that one.)

The point, of course, is that Follicular Lymphoma is a complicated disease. It acts all weird, and that makes it hard to know what has been helping and what hasn't. The only real way to tell is to trust science.

Monday, August 7, 2017

Follicular Lymphoma Videos

The Video Journal of Hematological Oncology just published a couple of videos on Follicular Lymphoma, featuring Lymphoma Rock Star Dr. Nathan Fowler of MD Anderson.

(I think one of you loyal readers is a patient of his, though I might be thinking of someone in the support group.)

The videos were posted a couple of days ago, though they were recorded at the ASCO conference in June. Dr. Fowler reports on some of the Follicular Lymphoma research that was highlighted at the conference.

The first video is called "Novel Therapies for the Treatment of CLL, MCL, and FL," so he discusses some of the research for a couple of other slow-growing lymphomas as well. But he has a lot to say about FL in particular. He focuses on the long-term follow-up data for the BRIGHT study and the STiL study. Both involved some FL patients who ad not received treatment.

The BRIGHT study looked at Bendamustine + Rituxan, compared to R-CHOP and R-CVP, and the STiL study looked at B+R vs. R-CHOP.. After a follow-up of 7-10 years, the Overall Survival was not different for the treatments, in both studies. It also found that there was not an excessive death rate. This is important, because, as Dr. Fowler points out, a study at ASH involving Bendamustine seemed to point to increased risk of death. Good to have some evidence that goes against that.

The second video is called "Ibrutinib in Combination with Rituximab -- The Future of Treating FL." In this video, Dr. Fowler discusses a trial that he reported on at ASCO.  He discusses the combination of Ibrutinib (a BTK inhibitor) and Rituxan, and points out that the Response Rate (around 80%) is higher than it is for either of those two treatments by themselves. The focus was especially on patients who wouldn't be able to tolerate chemotherapy (either because they were elderly or had other health problems), and they will start a phase III trial looking especially at those populations.

The idea in the title of Ibrutinib and Rituxan being "the future of treating FL" might be a little over-enthusiastic (Dr. Fowler doesn't really say that), but it does highlight the trend toward more targeted treatments, and away from traditional chemotherapy (though, as the BRIGHT and STiL trials show, there is still a place for that.)

I want to put in a small plug for The Video Journal of Hematological Oncology. They post mostly short videos (under 5 minutes) from experts in their fields. I sometimes use them as starting points -- they usually give a good summary of research, and then I can look into it for more detail somewhere else. Plus, it's always fun to see videos of researchers who are obviously excited about the work they are doing.


Thursday, August 3, 2017

Keytruda and Rituxan for Follicular Lymphoma

We're back to looking at some recent research in Follicular Lymphoma treatments.

At the 2017 International Conference on Malignant Lymphoma biennial meeting in Lugano, Switzerland in June, researchers presented early results from a phase II clinical trial for Rituxan and Pembrolizumab, also known as Keytruda (and since that's easier to spell, it's what I'm going to use).

Keytruda is an interesting treatment -- it has been tried out on a bunch of different cancers, not just FL, or even blood cancers. It is perhaps most famously been used in treating former U.S. President Jimmy Carter's brain cancer. It is the first treatment approved by the FDA for a biomarker, rather than a body part. In other words, most cancer treatments are approved for a cancer in the blood, or the lungs, or the colon. But Keytruda targets a genetic abnormality that is present in lots of different types of cancer. There are some oncology experts who say that is the future of cancer treatment, focusing on genes and not body parts.

Keytruda is a humanized monoclonal antibody (which explain the "-mab" at the end of its harder-to-spell name), like Rituxan (also known as rituximab). Just like Rituxan targets a protein on the surface of an immune cell, Keytruda targets the PD-1 receptor on an immune cell. PD-1 stands for Programmed Cell Death -1. The PD-1 receptor is important because it tells the body not attack itself -- it is known as an "immune checkpoint."

So here's where the problem comes: the cells for many different types of cancer will attach to the PD-1 receptor and block it. That means that the immune system can't recognize the cancer cell as an invader. While it would normally kill off the cancer cell, now it doesn't even know it's there, and the cancer cells grows and grows.

Keytruda is a "checkpoint inhibitor." It attaches itself to the PD-1 receptor, so the cancer cells can't. This lets the immune cell see the cancer cells as invaders, and destroy them. It's a great example of Immunotherapy, where the treatment helps the immune system do it's job normally to kill of invaders like cancer cells.

The phase II clinical trial that combined Keytruda with Rituxan involved a small number of patients (only 30), but the results were very good, with an 80% Overall Response Rate. Keytruda seems to help out certain types of immune cells that kill invaders in a particular way (that particular way is called Antibody-Dependent Cellular Cytotoxicity, or ADCC, in case you want to look it up). Conveniently, Rituxan works through ADCC. So the thinking of the researchers was that combining Keytruda and Rituxan would work well for Follicular Lymphoma.

The patients in the study have all had treatments with Rituxan in the past. As I said, the Overall Response Rate was 80%, with 60% achieving a Complete Response, after a follow-up of 7 months. Pretty good numbers. There were some side effects, particularly related to immune system problems (which is expected when you give a treatment that blocks the things that keep immune cells from controlling themselves). But they were considered manageable.

There are lots of limitations to this study -- it's a small number of people (just 30), and it was done at just one institution (MD Anderson), and the follow-up time is pretty short (7 months). But the researchers argue that these numbers are good enough to expand, and that would seem to be the case.

Keytruda is an interesting treatment, and it has seen a lot of success in lots of different cancers that are affected by the PD-1 receptor. But it's not perfect, by any means. In fact, about a month ago, trials for a combination therapy that included Keytruda for patients with Multiple Myeloma (another blood cancer) had to be stopped because of several deaths. Again, this treatment can do a number on the immune system, and certain combinations will probably make that affect worse. It's important to note that the Keytruda/Rituxan trial reported no deaths, but it's a good reminder that every treatment carries some risk.

For now, though, this may represent yet another non-chemotherapy treatment that is worth keeping an eye on.

[I didn't include a direct link to the abstract for this presentation at the International Conference on Malignant Lymphoma, because the ICML doesn't have a search function for their abstracts, so I can't give a direct link to just this one. However, if you want to see the abstract for yourself, then follow this link to the Abstract Book, then scroll down to abstract #109, "HIGH RESPONSE RATES WITH PEMBROLIZUMAB IN COMBINATION WITH RITUXIMAB IN PATIENTS WITH RELAPSED FOLLICULAR LYMPHOMA: INTERIM RESULTS OF AN ON OPEN‐LABEL, PHASE II STUDY.]

Monday, July 31, 2017

Pan Mass Challenge

I'm asking, once again, for you to consider making a donation to cancer research.

As he has for many years, my brother is again riding in this year's Pan Mass Challenge, a bike ride through Massachusetts that raises money for cancer research at the Dana-Farber Cancer Institute in Boston. Over 37 years, the PMC has raised over $500 million for research.

Last year, riders raised $47 million, and a pretty good chunk of that went directly to research on blood cancer -- $3.1 million, or about 15% of the total raised.

My brother works hard all year to train for the ride. He has personally raised almost $60,000, and this will be his 10th year riding. I was just one of the inspirations for him to start riding; like many families, we've had our share of losses to cancer, including our mom. I'm proud of my brother and grateful to him for all of his hard work.

The PMC will take place this weekend, and if you are looking for a place to make a donation to cancer research (even a small donation), please consider supporting my brother. You can get to his donation page by clicking here, and then entering the EgiftID MM0386.

Thanks for considering it.

And have a good ride, Mike.

Thursday, July 27, 2017

Patient Distress Guidelines from NCCN

I've been thinking (and writing) a lot lately about the emotional effects of Follicular Lymphoma. I know I keep saying it, and you all already know it, but Follicular Lymphoma is as much an emotional disease as a physical one. Many of us show no symptoms, and need no treatment, for long periods. But that doesn't make our emotional needs any less important -- in fact, it might make them even more important.

I recently came across an article that followed up on the National Comprehensive Cancer Network (NCCN) national conference, which took place in March. Some participants were asked about "what's hot" in their fields, and one pointed to the NCCN's new Distress guidelines for patients (they were new in March, anyway).

This was the first I had heard of the Guidelines, and they actually look great. NCCN, which is made up of oncologists and the institutions they work for, has published guidelines of different types for oncologists for a long time. They have only recently started putting the same information into publications for patients. So while doctors and nurses and other cancer professionals had guidelines for helping patients in distress, there weren't any guidelines for the patients themselves.

And that's a problem.

There's no guarantee a doctor or nurse will read the distress guidelines, let along use them to help cancer patients. (Not sure how long the doctor guidelines have been out, but of all the doctors and nurses I have seen, no one has mentioned them to me before). And, as the head of counseling at one hospital pointed out in that article, “A lot of cancer patients want to be ‘good patients,’ which can mean they don’t want to be whiners or give providers a reason to pull back on treatment; therefore, they may under-report symptoms…. We depend on patients to speak up about their challenges, so we can help them.”

Amen to that.

The NCCN Guidelines for Patients: Distress is pretty good. It's about 40 pages long, and easy to read. It starts with a description of what distress is, and some common situations for cancer patients that cause distress -- things like getting a diagnosis, or finding a new symptom, or learning that a treatment stopped working. We're all different, and we may have other things that add to our distress.

It goes on to give some tools to help you measure how distressed you are, using the "Distress Thermometer." It also gives some advice about how to create a team of professionals to help you manage your distress. (Lots of cancer centers have this kind of service. I don't think they get used enough, given how many people I see online who are experiencing distress.)

The guidelines also provide some help with having a conversation about distress with your healthcare provider. I think this is especially important. I get the sense that lots of doctors assume that, if we are asymptomatic, we don't have much to worry about. It is important to have those conversations with your doctor.

The guide is definitely worth reading, even if you aren't feeling lots of distress at the moment. To be honest, I'm not feeling much, at least not about my Follicular Lymphoma. (Now, as a father of three kids, 20, a8, and 16, plus a crazy dog, I have lots of other things to be distressed about. But my FL? I'm good right now.)

Maybe the time to be aware of these resources is exactly when you don't need them. Look over the guidelines with a clear head, and be prepared for a time when they might come in handy. (Though, of course, I hope that time never comes for us.)

And if you are feeling distressed, then this is a great time to take a look. You might find a source of your distress that you hadn't realized was a problem. Or you might find some resources that you didn't know existed.

But most importantly, I commend the NCCN for putting the focus on patient emotions -- making us and our health providers more aware of what';s going on in our heads and hearts, not just our lymph nodes and bone marrow.

I wish you all peace of mind and body.

Sunday, July 23, 2017

Cancer, Stress, and Social Interaction

The journal Network Science published a fascinating article a couple of weeks ago called "Social Influence on 5-Year Survival in a Longitudinal Chemotherapy Ward Co-Presence Network." It isn't about Follicular Lymphoma, but I think it has some real implications for all cancer patients.

The researchers looked at records from 4691 cancer patients in the UK who received chemotherapy. From those records, they could tell when those patients were in a treatment room with other patients who were also receiving chemo.

They were also able to look at what happened to those patients. And this is the fascinating part -- they found that if someone was in a treatment room with another patient who survived for more than 5 years, then that patient would also be more likely to survive for 5 years. And, likewise, if they were getting chemo in a room with a patient who survived less than 5 years, then they were also more likely to survive for less than 5 years.

The researchers didn't study why this was the case, but they think it might have something to do with modeling behavior and stress. At times of greater stress (and getting chemo is certainly one of those times), having social interaction can be a way of reducing stress. Supporting one another might be a way of making a stressful situation less stressful, and helping one another's survival. Without that stress relief (say the researchers), stress hormones like adrenaline can build up and create problems (since adrenaline prepares you to fight or run away, and you can't really do either in a treatment room.)

I think back to my own time in a treatment room. I got Rituxan, a monoclonal antibody, not traditional chemotherapy. But it was a stressful time anyway. The treatment room at my oncologist's office was kind of large -- it probably held 20 chairs.. It was in a U shape, with a nurse's station in the middle, with glass walls so they could keep an eye on us. When we arrived at the room, it was clear that the nurses wanted to give us some privacy -- we were given chairs far away from one another. So I might be on one side of the "U," and two more patients might be on the other sides of it, and we might never even see one another, let alone interact with one another.

And, to be honest, I was OK with that. I was there for hours, and I mostly wanted to sleep, or read, or watch TV. I wasn't really up for small talk. I usually had my wife with me, though my mom came once, and my kids came to visit me once. I had opportunities for interaction if I wanted them, and I was lucky that my loved ones' schedules allowed them to be there with me.

But now I'm thinking about other people in that big room. It was almost 8 years ago, so I don't remember them. I think some of them had company. But I'm sure some of them didn't. Would they have wanted to talk? It really is a stressful place -- would they have been less stressed if we could have chatted for just a few minutes? Would just a silent nod have helped -- just a small sign that said, "This sucks for me, and I know if sucks for you, and I hope your day gets better when you get out of here." Just something that let someone know how they felt?

It brings up a larger issue -- the importance of social interaction for cancer patients, in general, especially interaction with other cancer patients. I hear lots of sad stories from cancer patients who lost friends, or whose family members fell out of touch after a diagnosis. I think people don't know what to say and do, so they say and do nothing. That has to do some damage, to your mind and spirit, if not your body.

That's what makes support groups so important, whether face-to-face or online. There is almost always someone there who has been through what you have been through, who has felt what you have felt, or who has wondered what you are wondering. It's a huge stress relief.

I've talked before about the support group I found online just days after I was diagnosed. I still check in every day (though I don't post very often anymore.) It was a huge help to me, especially early on. I got support and I learned a lot about Follicular Lymphoma. I learned I wasn't crazy for thinking what I was thinking. There are even more of those groups online now, thanks to Facebook and other social media. And, of course, lots of face-to-face groups to join. (And, of course, I like to think Lympho Bob plays a small role in that, too. I get emails from some of you, and I'm happy to talk about whatever you want to talk about.)

But the point is, interact -- talk to someone, especially someone who truly understands what you are going through. It's a great stress relief, and, apparently, good for your physical health, not just your mental health. I've said it before -- Follicular Lymphoma is an emotional disease as much as a physical one. And sometimes those two things are closer than we realize.