NCCN Guidelines for FL Patients

The National Comprehensive Cancer Network (NCCN) recently published a series of Patient Guides for lymphoma. One of the guides focuses on Follicular Lymphoma.

The NCCN is a group made up of 27 well-known cancer centers. One of their main projects is to publish clinical guidelines for different types of cancers (including, of course, Follicular Lymphoma) -- basically, instructions for how oncologists should treat a particular cancer, based on what symptoms the patient is showing. The guidelines are created by experts in the area.

The guidelines seem to be especially useful for general oncologists -- doctors who treat lots of different types of cancer, rather than specializing in one type. Generalists can't really keep up on all of the research on all types of cancer and still have time to take care of patients. (Goodness knows I have a hard enough time keeping up with one type of cancer and still keep my job.) So the guidelines are useful in squishing all of that research into one set of recommendations.

That seems to be how my oncologist, Dr. K, uses them, and how he approaches my treatment. (I've said before that this is a little frustrating for me. I want to have a conversation about current treatment options, and he's not prepared for that. Which is fine -- at least for now.)

I've looked at those clinical guidelines myself, and they do seem useful. The downside to them is that they kind of limit options -- for the most part, they say if a patient is in X state, then the treatment should be Y. That's not always bad -- these are recommendations from experts -- but in the wrong hands, they could cut out some good options.

The other problem, from a patient perspective, is that they just aren't meant for patients. They're a little technical. Cancer Nerds (like me) kind of enjoy them. (They're set up as flow charts, so it's fun to guess what the next step they recommend will be, to see if I'm right. So I end up sitting on the couch by myself, looking at the guidelines, talking to myself. "Asymptomatic stage 1 FL? Watch and Wait. That's right. OK, symptoms show up? I say Rituxan.....Hah! I was right!" That's what happens when my wife is out and the kids are in school and I'm along. It's a real party in my house.)

So the guidelines are fine for Cancer Nerds, but kind of hard to read if that's not your thing. So that's where the new Patient Guidelines are for -- the same information, in a much easier-to-read, patient- friendly form, with simpler language and nice graphics.

The Follicular Lymphoma guide is fairly long -- about 72 pages -- which might be one of the downsides. But that might also encourage people to really read and understand their disease.

I think they do a good job of describing the different treatments (though I think I would have listed Rituxan first under "Targeted Treatments," not Idelalisib, given how much we know about Rituxan over its long, long-term use). I think they do a less good job in the section on deciding on a treatment. While they stress that the treatment choice is up to the patient, they also don't say much about how to make those decisions. They recommend some very good questions to ask the doctor, but in the end, they're saying "It's up to you, just ask your doctor and do what she says." Kind of trying to have it both ways but leaning toward the doctor.

Which, I suppose, is how it should be. In the end, we do all need to listen to our doctors. And these guides will be especially helpful for patients who aren't reading medical journals or NCCN clinical guidelines, anyway. Not everyone wants to do the work of searching and learning. And that's fine -- we all handle our cancers in the way that makes most sense to us. The NCCN patient guides will be a great resource for certain types of patients. And for the rest of us, we can probably learn something in there, too.

But a good guide shouldn't stop us from continuing our search for the newest and best information. And there are plenty of places to find it, and if you find one that works for you, stay with it. (I don't make any secret of my love for Lymphomation.org.) I hope this one will work for some folks.

Pan-Mass Challenge

OK -- shameless plug.

Once again, my brother is participating in the Pan-Mass Challenge, a bike ride across my home state of Massachusetts, to raise money for cancer research at the Dana Farber Cancer Institute in Boston. Dana Farber is making an especially big push for genetic-based cancer research, sequencing the genes of cancer patients to see where things are going wrong, and how those problems lead to cancer. A good chunk of the money raised by the PMC goes specifically to blood cancer research. 

One of Dana Farber's programs is called The Center for the Prevention of Progression of Blood Cancers. It looks at blood cancers that begin as "precursor conditions" that then turn into cancer. It also looks at asymptomatic indolent blood cancers that might progress, or might stay indolent, or might transform. Sound familiar? Of course it does. So some of the money raised by the PMC goes directly to research on Follicular Lymphoma.

So my shameless plug isn't really about my brother -- it's about all of us.

The Pan-Mass Challenge has raised about a half billion dollars over 36 years. This will be my brother's 9th year riding. he has personally raised over $50,000 for the cause. I'm extremely proud and grateful to him.

If you are considering donating money to cancer research, please consider donating to my brother's ride. His appeal message is below, along with a link to his fundraising page. Every little bit helps.

Thanks for considering it.

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This year on August  6th , I will ride for  my 9th year in the Pan Mass Challenge to raise research funds for the Dana Farber Cancer Institute in Boston.

As many of you may know from sponsoring me in the past, this cause is especially personal to me as I have had several immediate family members and close friends that have been diagnosed and treated successfully for many different types of cancers.  This year, I'm  riding in support of my brother, and several other close friends and colleagues that are in various stages of cancer treatment.  All are either patients at the DFCI, or beneficiaries of their ongoing research. 

Since 1980, the PMC has raised over  $350 million for cancer research and treatment at Dana Farber. The majority of this impressive total is considered unrestricted support -- critical, flexible funding that can be directed where and when it is needed most. As the PMC generates nearly half of the Jimmy Fund's annual revenue, every rider supports the efforts of more than 3,000 DFCI faculty and staff members as they make countless advances that have become the standard of cancer care and research.

I’m asking you to join me in the fight against cancer by sponsoring me in my ride with the 2016 Pan Mass Challenge.  The doctors and researchers at the Dana Farber Cancer Institute in Boston are making tremendous progress in finding a cure for this terrible disease, but we need to continue to fund the fight and bring this to an end.

The easiest way to donate is to give on-line.  The PMC site is a secure site. 

To give on-line, you can go to the following link to my personal fundraising site:

http://www.pmc.org/profile/MM0386

Many thanks,

Mike

Rocky Balboa, Cancer, and Me

My wife and I finally watched the movie Creed yesterday. It features the character Rocky Balboa, who has already been featured in seven "Rocky" movies. I'm going to talk about the movie Creed below, so if you haven't seen it and you plan on seeing it, don't read any further.

Here's a photo of Rocky punching some meat to block your way:




Rocky Balboa is one of my favorite characters of all time. The original Rocky came out in 1976, when I was 8 or 9 years old. I loved the story of the underdog who got a chance to make it big, and I especially loved that he had a goal -- just going the distance. And I loved that in the end, he got what he wanted -- he went the distance, and he won Adrian's heart. He's a true champion for a cancer patient.

Sometimes, when my wife has time to sneak in a nap, I'll wake her up by sitting next to her on the edge of the coach, and going through this scene:


And she's pretty good about doing Adrian's lines, even if she's still half asleep. She's good about going along with the goofy stuff that she knows will make me happy. Best of wives and women, as Alexander Hamilton would say about his Eliza.

I could go into a lot more of my love for the other Rocky movies, but let's talk about Creed.

In the movie, Rocky Balboa, now about 70 years old and grieving the death of his wife Adrian, when he agrees to become the trainer for Adonis Creed, the son of his friend and former opponent Apollo Creed.

Along the way, Rocky learns that he has cancer. This was pretty widely known even before the movie came out last year, but it was a surprise to me -- even more a surprise when the doctor told him he had Non-Hodgkn's Lymphoma!

I'm very interested in how NHL is portrayed in movies, TV shows, and in the news, because a lot of what people know about it is learned from those places. Misinformation is not good -- it creates fear (of how horrible a cancer diagnosis is) and ignorance (of what it means to be a cancer patient).

So I want to take a look at Rocky's cancer experience and see how ti holds up.

• First, Rocky gets the news: This was pretty realistic. Rocky was doing a pretty intense late night training session with Adonis when he got nauseous and fainted. He went for some tests, and then got a call from the doctor. And here's where it got very real -- he spoke calmly on the phone, and then in the next scene, he was in the doctor's office getting the diagnosis. Same thing happened to me, and it was the WORST way to get the news -- the doc said by phone, "Come on in and we'll talk about the test results," and then I had to wait four hours for the appointment. I asked what the news was while we were still on the phone, and she refused to tell me until I came in. Well, obviously it's bad news, right? That was not a good four hours. I understand wanting to be there for the patient, but I asked for the news -- tell me. I guess she wanted to be face-to-face so she could answer my questions. (Oh, wait -- she refused to answer my questions and told me I should ask the oncologist instead. But, hey -- she did offer my wife some valium.  My wife calmly refused, pointing out that we had three kids to take care of, and this was not a good time to be high as a kite. Best of wives and women, I tell ya.)
• The diagnosis: The doctor told him he had "Large Cell Non-Hodgkin's Lymphoma." Now, as far as I can tell, there is no straight up "Large Cell NHL." There are two more specific types, though: Diffuse Large B Cell Lymphoma, and Anaplastic Large Cell Lymphoma. DLBCL is a B cell lymphoma, and ALCL is a T cell lymphoma. Both of them are treated with CHOP. I'm not sure which one of these was the one that Rocky was supposed to have, but I'm going with ALCL. Mr. T, who co-starred in Rocky III, is a T cell Lymphoma survivor (though I don't think he has ALCL). So I'm going to assume that Rocky's diagnosis is a loving tribute to Mr. T. Either that, or he just made up a type of NHL that sounded real. 
• The treatment:  The doctor describes the treatment -- surgery to remove the tumors in his lymph nodes, and then chemotherapy. Rocky refuses treatment. He'd already been through this with Adrian, and it didn't work for her. He eventually gives in and gets chemo. I think he skips the surgery, which is good, because I've never heard of removing tumors from lymph nodes. If anything, oncologists want the lymph nodes to stay, since lymphomas are systemic -- the cancer cells travel through the body, so removing a lymph node where they are gathering really won't do any good. And "removing the tumor from the lymph node" is kind of silly. Rocky is shown in a treatment room, with what looks like three IV bags. I assume they are Cytoxan, Adriamycin, and Vincristine (the C, H, O of CHOP)? 
• The aftermath: I have to say, they did a pretty good job of making Rocky look tired and weak after he has the chemo. They show him getting sick, with Adonis taking care of him. I'd call that part pretty realistic, both in how the chemo affects Rocky, and in how Adonis acts as a loving caretaker. That was nice.

One problem with it all -- while Rocky had a realistic reaction to the diagnosis, in real life, he should have gotten a second opinion. The diagnosis might have been the same, but a specialist could have told him about some other possible treatment options, including clinical trials. In fact, he could have gone to the easy-to-use clinical trial search tool at Lymphomation.org and found that there are 14 ongoing trials for ALCL in Pennsylvania right now.

That's the kind of product placement I'd really like to see in a movie. An aging boxer sitting with his laptop, making informed choices about his cancer treatment.

So Creed does a decent job of handling cancer, though there could be a few changes without affecting the plot too much.

But more importantly, one of my movie heroes and I now have something in common. Besides being underdogs who won't give up the fight.

If I gave Nodes of Gold honors for fictional characters, Rocky Balboa would definitely have earned them.

I'll be back soon. I've gotta fly now.  (Rocky joke.)

Chemo-Free in Follicular lymphoma

A quick post to share a quick video:

Dr. Gilles Salles, a well-known lymphoma researcher from Lyon, France, gave a summary of strategies for going "chemo-free" in Follicular Lymphoma. He gave a presentation at the 2016 Annual Meeting of the British Society of Haematology (BSH) and International Society of Hematology (ISH), held in beautiful Glasgow, Scotland recently.

In the interview, Dr. Salles mentions some of the problems with traditional chemotherapy use in FL: mostly, it doesn't cure it, and it has some terrible side effects. Newer, more targeted treatments tend to have fewer side effects, and might give us hope for a cure.

Some of the newer, non-chemo treatments include Rituxan and other monoclonal antibodies, immune modulators, and kinase inhibitors. As we understand more about Follicular Lymphoma, we see that the micro-environment is important, and while chemo attacks the cells themselves (along with other healthy cells), more targeted treatments help deal with what surrounds those cells. Mess with the micro-environment and you mess with the cells. Combinations of different treatments seem especially valuable.

You can watch the short (2.5 minute) video here. Not really anything new, but I always like hearing a Lymphoma Rock Star talk about what he sees as the future of Follicular Lymphoma treatment.

Some Articles on Follicular Lymphoma

If you're enough of a Cancer Nerd that you like reading medical journal articles, then the most recent issue of Blood is just what you have been waiting for. They have a special section that reviews Indolent Lymphomas, including Follicular Lymphoma. There is one article devoted to FL, and another that looks at Stem Cell Transplants, which also focuses a lot on FL (along with other slow-growing lymphomas).

If you're not enough of a Cancer Nerd to read medical journal articles, then I'll try to hit some highlights for you.

The Review Series starts off with an introduction called "The Paradox of Indolent B-Cell Lymphoma."

A Paradox is something that seems to contradict itself, even though both parts of it are true. Like watching and waiting: we don't actively treat our cancer, but we might be better off doing nothing. That's a paradox -- everyone knows that not getting aggressive treatment for cancer isn't good, and yet....

Follicular Lymphoma is full of paradoxes. Sometimes I think about them, or try to explain them to people, and I realize just how messed up and weird a cancer it really is. Like

• It's a slow-growing disease, and maybe doesn't need to be treated for a long time, maybe never. Which is good. But it's also incurable. Which is bad.
• It's a quiet disease, so quiet we can almost forget about it. That's good. But that quiet can be a problem if it transforms, and you're not paying close attention to it. That's bad.
• We have a good bunch of treatments that work well, with more on the way. That's good. But there are so many treatments that work well, we don't have an protocol that we agree on. Some oncologists say to watch and wait, while others, for the same patient, might suggest Bendamustine, or CHOP, or even CVP. No agreement. That's less good.
• Treatments often work for a long time. That's good. But they can work for so long, and there are so many options, that it's hard to construct any kind of clinical trial that looks at sequencing of treatments -- comparing how well a large group of patients do when trying a certain treatments after other treatments. That's not as good.

Isn't it fun to be part of such a weird disease, gang?

But even with all of those paradoxes and contradictions, we're still doing OK. The Introduction article says our median overall survival is probably greater than 12-15 years. When I was first diagnosed in 2008, Wikipedia said it was 8-10 years. So something is going right for us.

(I'm pretty sure that something is Rituxan....)

And that's kind of the theme of the main review article for FL, "Follicular Lymphoma: Evolving Therapeutic Strategies." It's a review article, meaning it is reviewing what we know about FL -- not really adding anything new. It discusses what we know about the Biology of FL, and how gene mutations lead to Follicular Lymphoma; and how the microenvironment (the stuff that surrounds the cancer cells, noy just the cancer cells themselves) play a role in FL growing and thriving; the kind of prognostic tools used to evaluate it (various FLIPIs, including the m7-FLIPI for more aggressive FLs). And it finally looks at transformation, the Big Monster We Fear. Good news there -- recent studies have shown a longer Overall Survival -- more than 5 years -- than we had previously thought.

The article then looks at some of the treatment options available for FL patients at different stages. It is summarized in this neat graphic:



It's a nice flow-chart, maybe something worth thinking as you consider different options. But be warned -- it's not a substitute for a conversation with your oncologist, and it doesn't really mention specific treatments. It certainly doesn't mention treatments available in clinical trials. We don't want to leave them out, do we?

The article does get into some more specifics of different treatments, their effectiveness, and what they might be good for. So you might be forced to read this article anyway.

Finally, the Blood issue has an article called "The Role of Autologous and Allogeneic Stem Cell Transplantation in the Management of Indolent B-cell Lymphoma." Like the FL article, this is a review article, looking at what we already know about SCTs, rather than offering anything new. I wrote about Stem Cell Transplants last month, and the basics remain the same: Auto SCTs are safer, but not always as effective. Allo SCTs might offer a cure, but can have some dangerous side effects like Host-vs-Graft Disease. The article goes into more detail about what we know and don't know.

What I know is this: We have a weird, messed-up cancer. But in all of those paradoxes, even if we say something is bad, or less than good, there is still plenty of good -- for many of us, it's a disease without symptoms that allows us to live our lives (at least our physical lives) in a fairly normal way, and we have lots of treatment options to try. And that's all good.

So we can keep our focus on that until we need to think about the less-than-good stuff.