Tuesday, April 15, 2014

Lymphoma Survey

The Lymphoma Coalition is once again asking Lymphoma patients (and caregivers) of all types, and from  all countries, to take their survey. You can find the English version of the survey here; if you want a different language, you can change it on the English survey, or you can find some language links on the Lymphoma Coalition home page. (You can also find a bunch of other interesting items, including a section of links titled "In the Node,"  a very funny play on "In the Know." I love lymphoma humor.)

The Lymphoma Coalition is a group of lymphoma-related organizations, most of which are national-level groups from different countries, though there are a few others that help either smaller or larger populations (including our pals at Patients Against Lymphoma, who run Lymphomation.org). They band together for things like this -- their global survey to look at trends in the experiences of lymphoma patients around the world. The results of the survey, especially when compared to previous surveys, help the organizations focus their missions and bring help to lymphoma patients.

Their last survey took place in 2012 (you can find the results here), and they found some interesting trends:

"a) A general lack of understanding and awareness of the signs and symptoms of an increasingly complex disease on the part of both patients and healthcare professionals that can typically result in late diagnosis ;
b) Misunderstanding about clinical trials as an effective option to treatment; and
c) A quality of life being experienced by lymphoma patients that requires improvement."

So it's definitely worth taking the survey. It will cost you, at most, about 10 minutes, and the result will be possible improvements in your life as a patient.

Friday, April 11, 2014

Living with Follicular Lymphoma

A few days ago, someone wrote a comment on an older post. It read:

My husband was diagnosed with FNHL in January 2014 and I read your story. Best wishes to your five years and can you tell me how I can help him. My kids are 13, 9, and 7. Just tell me how to make five years like you. Thanks.

The comment just broke my heart. Partly because I suddenly remembered pretty clearly how it felt for those first few months. The helplessness. The not knowing. The worry, especially about my kids.

But then I felt helpless again, because I'm being asked to give some advice about how to stay alive for 5 years. I've never felt like my survival has been under my control. If cancer is a game of poker, then getting the diagnosis is like getting dealt a really crappy hand of 5 cards with no connection. But my diagnosis was Follicular Lymphoma. That's like tossing 3 of your cards and getting a dealt a couple of 3's. Still a crappy hand, but hey, you're in the game still. You might be able to bluff your way to a pot. But it's all still beyond your control.

So what can I say? What kind of advice can I offer to someone who wants to know how I got to 5 years (now 6 years)?

Well, I can't say how I got there. I can't tell you that there is some miracle cure. There are no quick fixes to Follicular Lymphoma. As much as I's like to be able to sell you a bottle of something, I have nothing to sell.

All I can offer is some insight into the journey. Take it for what it is -- my story.
  •  The first advice I can give is the hardest to take. Try not to panic. I didn't say "Don't panic," because you're going to, I know that. But try not to. Follicular Lymphoma shows up in lots of different ways, some very slow growing, and some very aggressive. There's no way for me to know which type that the person who wrote the comment is dealing with. But it's been about four months since diagnosis, and there's no mention of treatment yet, so maybe it's slower growing. Here's what I say, and I know it's a risky thing to assume, but: when you are diagnosed with FL, you're probably not going to die tomorrow. You're probably not going to die next week, either. In fact, let's be conservative and say you're probably not going to die in a month, either. Let's not worry beyond that. Focus on what happens in the next four weeks. A scan? An appointment with the oncologist? A treatment? Yes? Focus on those things and think about how much they will help you. No? Nothing scheduled? Then  your oncologist is a little less worried than he might have been in other circumstances. In that case, take a deep breath. Go to your son's soccer game or your daughter's play. Have dinner with a friend. Kiss your spouse. Worry about this month, and only this month. Until you can breathe again, don't look to far into the future. It will only get you worried.
  • Start telling yourself that it gets easier with time. You're probably not ready to believe it yet. But you will at some point. I have found, and heard from other FL patients, that it takes about six months to start to relax and breathe more easily. Practice now. One day you will realize that it is noon and you haven't thought about cancer all morning. And that will be a really great day.
  • Learn what you can about your disease.  For me, knowing as much as I can about Follicular Lymphoma is a source of comfort. I feel like I can have a conversation with my oncologist and ask the right questions. And knowing for me is also a source of hope. I can track the progress of new treatments, get excited about trial results, and look toward the future. That gets easier with time, when you can see (and believe) that there's a future beyond the next month. 
  • Don't learn what you can about your disease. But sometimes this strategy doesn't work. Sometimes, especially early on, it's too overwhelming to learn so much, and it just does more harm than good. Every little detail can make you think, does this apply to me? And that, of course, is the opposite of the comfort and hope that we're looking for. So while I think that knowledge is power, I also think we all have to deal with this disease in the way that makes the most sense for us. I had a friend who had Hodgkin's Disease, and was pregnant at the time. She couldn't even look at the bag or the line during her chemo treatments. She is an incredibly strong, incredibly intelligent woman. But she wanted nothing to do with her disease while she was going through it. That's how she coped. So learn what you can about Follicular Lymphoma, unless that doesn't help. If you trust your oncologist, then do what he says and don't think about it.
  • Most importantly, live your life. It's easy to become paralyzed by all of this. I remember one day early on going through a nasty chain in my head. I had been given an opportunity at work, and I thought, I have no idea what's going to happen to me. I can't commit to this thing. I need to say No. And then I thought, if I say No to this, there's not much point in even working. I can't commit to much of anything long-term at work. And if that's the case, why even work? And if I'm not going to work, why even get out of bed? I might as well just be dead now, if I can't let myself commit to anything. It was not a happy day for me. I realized that I couldn't stop my life because of this disease. We never know the future, even the cancer-free among us. You don't need to act as if there's nothing wrong, but you can't let your emotions block you from doing the things that you can handle physically. Now, I'm not a big "Bucket List" guy. There are things I want to do, but it's too much pressure for me to keep a list and feel like I have to accomplish it all. I take opportunities as they come up. I try not to let Lymphoma hold me back. (Lack of money? Lack of time? Oh yeah. They hold me back. Lymphoma? No way.)
I don't know if I've answered the question. I'm guessing you were hoping for something that was easy and fast, some secret to reaching 5 years. I don't have one.

All I have is some advice for how to stay as sane as possible on the way there. As I said, there's a pretty wide range of possibilities with Follicular Lymphoma (where you fall on that scale is probably one thing that is worth knowing, and people have lived with the disease for a very long time.

Try to stay healthy, eat well and exercise, love your spouse and kids, do stuff that makes you happy, make your small corner of the world a better place, and do all of those other things you should have been doing before you were diagnosed.

And all of this applies to caregivers, too.

Tuesday, April 8, 2014

Shoulder Update

It's been almost 6 weeks since my shoulder surgery, and the last couple of days were significant in my recovery. things seem to be going well.

Yesterday was my first day of physical therapy. Normally, after a torn rotator cuff, PT would start 3 weeks after surgery. However, my shoulder was such a mess that the surgeon is delaying everything by two weeks.

Physical Therapy wasn't horrible. Some light, therapist-assisted stretching, some pulley exercises, and some finger wall-climbing. Nothing too strenuous. I'm not exercising the injured tendon yet; I'm working on loosening up and strengthening the other shoulder muscles that have been inactive all this time. The therapist said my muscles were very tight, which was a good thing -- it meant I was probably inactive for the last six weeks, and that increased my odds of a successful recovery.

Of course I was inactive. I was told to be. And I always do what I'm told......

So it's PT three times a week until...I don't know....until the insurance company says they'll stop paying for it, I guess.

Then this morning, I had a follow-up with the surgeon. I hadn't seen him for about a month. He was pleased with the ways things were going, and he showed me a couple of additional exercises to help loosen up my shoulder. I'll work on them with the therapist tomorrow.

He's also having me taper off the heavy drugs he's been prescribing for me. As much as I joke to people about how great the drugs are, I'm happy to be getting off them. I don't need an Oxycodone addiction on top of all of my other problems.

One thing I found strange: I asked how we would know that the operation was a success. Maybe an MRI?

No. He said we'll know because of the progress I make with the therapy. No MRI or other imaging tom take a look inside and see if it's attached. I think that's kind of messed up. Why not take a look inside? Probably my cancer patient bias, but I see some real value in a picture or two. I haven't bothered tom look it up, but I assume this is normal procedure.

Most importantly, he says I can take the sling off when I'm home. I should wear it at night, and when I go out, as a signal to others to be careful around me. In two more weeks, I can be rid of the sling completely.

And best of all, he said I can drive again! That's been the worst part of all of this. I have three very active kids, who frequently travel in three different directions. Friends have been good about helping us out with rides, but I'm happy to take at least a little bit of some of that burden off of my wife, who has some health issues of her own these days. Maybe she can rest just a little bit now while I transport the kids to at least some of their activities.

So overall, it's been a good couple of days, as far as my shoulder is concerned. It's been a tough few months for my family, and a little bit of good news goes a long way around here.

Back to cancer stuff soon. Stay tuned.

Sunday, April 6, 2014

The Importance of Clinical Trials for Follicular Lymphoma

Patient Power's latest video is called "Refining Modern Transplant Therapy: Current Studies in Myeloma."
Refining Modern Transplant Therapy: Current Studies in Myeloma - See more at: http://www.patientpower.info/video/refining-modern-transplant-therapy-current-studies-in-myeloma#sthash.ABqY7xuf.dpuf

Now, Myeloma ain't Follicular Lymphoma. It's a semi-distant cousin, another kind of blood cancer, so the information in this video (which describes a specific clinical trial) isn't directly relevant for us, but it has some important lessons.

(And I should point out that I am sharing this at the request of Karl from Lymphomation.org, who posted it to the support group and asked that it be shared widely. Given all that Lymphomation as done for me, and all of us, it's the very least I can do.)

So what does a trial for Myeloma have to do with us, as Follicualr Lymphoma patients?

It's the idea of clinical trials in general that's so important.

As the Patient Power video points out, clinical trials are vital to us as cancer patients. Without trials, there is no progress. If new treatments don't ever get tested out, then they don't ever get approved. All of those arrows in the quiver that I like to talk about just end up on the ground, not ready to come to our aid.

Dr. James Omel, who is featured in the video (and who is both an MD and a cancer patient) reminds us in the video that "we owe a deep amount of gratitude to the patients that went before us, and we need to pass that on to patients who come after us by joining trials." Karl likes to call clinical trial participants as "heroes." It should be clear why.

Here's the connection to Follicular Lymphoma. Myeloma is another of those cancers that has a bad habit of coming back even after a seemingly successful treatment. If that's the case, as it often is with Follicular Lymphoma, then if we are taking a "management" approach to our disease (getting treatment as it is needed, rather than going for a cure), then a trial seems like a pretty natural choice.

Why? Well, here's how I think of it: if Dr. R were to tell me that I needed treatment, and I knew, or assumed, that I would likely need treatment again in a few years, and maybe again a few years after that, then it really wouldn't matter which treatment I had, would it? Of course, I'd want one that would be effective, and with few side effects as possible. But that opens up a lot of possibilities, doesn't it?

So why not include a clinical trial on that list of choices?

Now, I'm encouraging clinical trial participation, even though, as many of you know, I have never been a participant myself. And I think maybe my own experience might explain why some of us don't participate.

I've had the discussion about trials with Dr. R, and he knows I am open to them. But I didn't do it when I needed treatment, mostly because of convenience -- or inconvenience. Despite my living so close to some major cancer research centers, a trail really wouldn't have been convenient.

Like lots of asymptomatic Follicular Lymphoma patients, I haven't really missed a lot of work because of my disease, or had too many major disruptions to my life. I think if my FL were presenting is a different way, and it was keeping me from working, then, ironically, it would be easier to participate in a trial. I could go to Boston or New York for treatment as frequently as necessary.

But for me, the most convenient place to go, the one that would have caused the fewest disruptions, would have been Yale. And back then, Yale's lymphoma trials were focused msotly on T-Cell lymphomas. Just not convenient.

So maybe the nature of our lymphoma works against us, in a way. We want our treatments to be effective, with minimal side effects, but also convenient. And we don't always live near a research center that is conducting a trial that fits our situation. Easier to just go with Rituxan or Bendamustine in the doctor's office.

If that's the case for you, too, then I suggest you do what I do. While our need for convenience might put us at a disadvantage, one advantage that we asymptomatic folks have is time. You have the time to educate yourself, which is why you read this blog (I assume). So add something else to your reading list: every now and then, take a look at the list of clinical trials to see if one is happening near you. Talk to your oncologist about it. See if it fits your situation. And then, if the time comes for treatment, you'll know if there's one nearby for you.

If you've never looked for trials, it's incredibly easy. The good folks at Lymphomation make it even easier for you to search. Click here and see for yourself.

Be a hero. (If it's convenient.)

Thursday, April 3, 2014

Diagnosing Lymphoma: Yale Cancer Center Answers

I've been meaning to post this for a while (it's been a crazy couple of months):

Yale's Smilow Cancer Hospital sponsors a weekly show on our local public radio station called "Yale Cancer Center Answers." Each week, the hosts (a pair of oncologists at Yale) bring on a guest from the oncology community (usually affiliated with Yale) to discuss some topic related to cancer. Topics range from advances in research on a specific cancer, to information about nutrition and exercise for cancer patients, to advice for supporting caregivers. It's a nice show. I think I didn't really, fully understand stem cell transplants until I heard them discussed on YCCA.

At one time, I had reason to be in the car regularly on Sunday nights, when the show airs. Lately, not so much, so I forget to listen, or to check their web site, where all of the shows are archived (by date and topic, as a sound file or as a text transcript of what was said).

The most recent one to get me curious was the show on "Research in Hematopathology," with Dr. Samual Katz, who teaches Pathology at the Yale Medical School. It was on the radio on February 9.

Hematopathology is the pathology of blood diseases. That is, looking at blood cells and trying to figure out which disease, cancerous or otherwise, is affecting the patient. It sounds like a pretty fascinating field. According to Dr. Katz, a lot of hematopathology is kind of Old School -- looking at cells under a microscope. This is the way it used be done, up until fairly recently. Follicular Lymphoma is called what it is called because of its appearance under a microscope, just as various "Large" and "small" celled cancers got their names.

So while a quick look under a microscope can start to narrow things down, Dr. Katz says a couple of other tools work better to get at some of the more crucial information that is necessary to guide treatment options: flow cytometry can look into individual cells, and cytogenetics can look at the chromosomes (so he can tell if, for example, there was a 14;18 switch that resulted in Follicular Lymphoma). You can see how the pathologist plays a crucial role in guiding treatment decisions, especially as treatments are becoming more geared toward information at the chromosome level.

And Dr. Katz does address some of those decisions, too. He mentions the "small molecule" treatments that have been in the news lately -- those treatments that can identify and target "touch points" on proteins that disrupt the processes that cancer cells are going through. He discusses BCL-2 in particular, a protein that prevents cells from dying naturally. Treatments are being designed to turn off BCL-2, allowing cancer cells to die off like normal cells. Dr. Katz calls BCL-2 a "guardian," and mentions that there are 4 others: "There are at least five total guardians, there is BCL-2, BCL-XL, BCL-W, those three are targeted by the first of these compounds that have been designed. There is also BFL1 and MCL1 two other guardians which are not touched at all by that." In other words, we're figuring out how to identify these guardians, and then work on getting past them.

Dr. Katz isn't really saying anything new, but he does explain things in a different way than I've heard before. And that's the value of a show like Yale Cancer Center Answers.

The February 9 show is definitely worth 30 minutes of your time (or a little more or less, if you'd prefer to read the transcript). You might want to check out a couple of others, too, from December: "Discussion of Hematological Malignancies Part II," from December 29, and "Clinical Trials for Hematological Malignancies" from December 22. Both feature Dr. Steven Gore, Director of Hematologic Malignancies at Smilow Cancer Hospital.


Monday, March 31, 2014

Age, Race, Sex, and Follicular Lymphoma

An article that will be published in the next issue of The American Journal of Hematology looks at "The Impact of Race, Age, and Sex in Follicular Lymphoma: A Comprehensive SEER Analysis Across Consecutive Treatment Eras." Basically, the authors looked back at the records of about 18,000 patients with Follicular Lymphoma from 1992 to 2009 to see how they did. (A SEER analysis is a look at the Surveillance, Epidemiology, and End Results database from the National Cancer Institute. That's important to know -- the researchers looked at electronic records, not actual patients.)

One of the things they really wanted to look at was the differences between two eras of treatment: 1992 to 2000, and 2001 to 2009. The separation, of course, is due to Rituxan; era 2 in this study is often called "The Rituxan Era," though it sometimes is given an earlier starting date. The 2001 date here is probably a reference to when Rituxan was used widely.

So, this is a study of statistics from the past. It doesn't say much of anything about any of us in the present. That's important to know, too.

Researchers found that, basically, things got a whole lot better once Rituxan came to town. We already knew that, of course, but this is the first time we get a sense of who seems to have benefited, in a general way, and how.

I'm not going to break down how particular ages, races, sexes, and classes did. I think there's some value for researchers in knowing those things. Maybe knowing that (and I'm making this up) working-class white men in their forties with blue eyes did worse in the Rituxan era than they did before (and, again I just made up that statistic) would lead some researchers to start asking why Rituxan wasn't working for them, and figure out if age or race or something else plays a role in Rituxan's effectiveness. I don't see how else something like this -- a study of the past -- can help patients in the present. At worst, it can just get some of us thinking too much about things that don't really matter.

Here's the one statistic that does matter, as far as I am concerned: "Overall survival (OS) was superior in Era-2 versus Era-1 for all patients (5-year: 76.7% versus 67.4%, respectively)."

In other words, Rituxan has made our lives better, and our survival last longer.

That's not just a pitch for Rituxan (though goodness knows I'm happy to sing its praises). Era 2 in this study goes until 2009. We're in era 3 now. We're in the post-Rituxan era. The era of humanized monoclonal antibodies. The era of prohibitors. The era of targeted therapies.

If Rituxan did that much for us, as a group, imagine what all of this other awesome stuff will do for us. A cure? Maybe. But even if it means a way of controlling Follicular Lymphoma, taming it,  making it truly a chronic disease, that would be something pretty awesome, too.

So look at those statistics from the past if you're curious. But remember that stats from the past have not much to do with you in the present. 

And even less to do with your future.

Friday, March 28, 2014

Vorinostat! Zolinza!

Before I get into this, let me just say how great the name Zolinza is for a cancer drug. It's kind of hard to say it without smiling. Seems like there should automatically be an exclamation point after it, or maybe a few extra Zs at the beginning. Zzzzzolinza! I'd almost be happy to take it.

Oncologist: "Well, it looks like your Follicular Lymphoma has returned."
Me: "Gosh, doc, what are my options?"
Onc: "Well, there's Bendamustine. Or we could try Idelalisib. Or maybe.....Zzzzzolinza!"

And then the oncologist hands me a plate of guacamole and tortilla chips.



Anyway, a phase 2 study shows that Zolinza is effective for Follicular Lymphoma.

In a study soon to be published in the British Journal of Hematology, researchers gave Zolinza to 50 NHL patients, 39 of whom had Follicular Lymphoma, all of whom had relapsed form  a previous treatment (most of them had Rituxan + chemo).  About half of them showed a response, and the median Progression Free Survival was 20 months. There were some side effects, but for the most part, the results seem to justify a larger phase 3 study.

Zolinza is also known as Vorinostat. It has already been approved for relapsed Cutaneous T Cell Lymphoma (a skin-based lymphoma), so we have a pretty good idea of what we're dealing with. It has also been tried on some other blood diseases, and on small cell lung cancer.

Zolinza is another inhibitor, a treatment that doesn't aim to kill off cancer cells, but rather to stop a function that is crucial for the cancer cell's survival. In this case, it is a histone deacetylase inhibitor. It's kind of a cool mechanism to disrupt. In a nutshell, histone deacetylase is an enzyme necessary for DNA to function. It removes certain compounds from the DNA that keep it from wrapping up tightly. Since cancer cells rely on that rogue DNA to multiply, then interrupting that function will keep the cancer cells from multiplying.

As always, it's hard to predict where Zolinza will go from here, and what the results of the phase 3 trial will be. But I think it helps that this works through a mechanism that's different from others that are being explored or have been approved. If the trend really is to combine treatments in a way that attacks the lymphoma from a few different directions, then this one would certainly e worth exploring further.

Another potential arrow for the quiver.