Thursday, January 30, 2014

Idelalisib for Indolent/Follicular Lymphoma

Back in September, Gilead applied for FDA approval for Idelalisib for indolent lymphomas (including Follicular Lymphoma) that had stopped responding to Rituxan and to alkylating chemotherapy (including CHOP and Bendamustine). They based the application on phase 2 clinical trial results (which is early).

A couple of weeks ago, the FDA granted Idelalisib "Breakthrough Therapy" designation, meaning it has the potential to be a major advance over anything that is currently available. This ain't no fourth-generation Rituxan wannabe. This is Pulp Fiction at the Cannes Film Festival -- something very new.

The results from that phase 2 trial were published in The New England Journal of Medicine a week ago. That's important, because it means they have been peer-reviewed, with experts in the field looking over the data and the methods for collecting it, and giving their approval.

The Background section of the article is pretty interesting (and more informative than other things I've read about Idelalisib:

Idelalisib  targets something called Pl3K, a lipid kinase that helps to regulate growth and death in cells. Pl3K comes in four different types, and is present in most cells. The fourth type, known as delta, is especially present in  blood cells. Idelalisibwas created to target this particular form of Pl3K, so it is ideal for use with indolent lymphomas. It's a kinase inhibitor, which means it stops Pl3K from doing its evil job of keeping cancer cells alive when they would otherwise die.

The study was fairly small -- 125 patients -- but pretty successful.  I'm not going to get too much into methods and results (you can read on your own, all you people with two healthy shoulders), but basically, 90% of the patients had their lymph nodes shrink. the overall response rate was 57%, including 6% who had a complete response. (Not sure what the difference is between that 90% with shrunken nodes and the smaller number who were classified as "responding.") For what it's worth, the 72 Follicular Lymphoma patients in the study had a 54% response rate, which wasn't the bast, but which was decent. Maybe more important was that "responses were rapid and durable" as patients kept taking the Idelalisib. Side effects were common, though they seem manageable, and doesn't overlap with other treatments, so some combinations might be in the future.

Overall, a bunch of good news in the last month for indolent lymphoma patients. The FDA review will take place later this year; let's hope it's fast and positive, and we have another arrow in the quiver soon.

Monday, January 27, 2014


My kids try to scare me all the time. That jumping-out-from-behind-something kind of scaring, yelling Boo! to see if I'll jump.

I never do.

I might get a little startled, but never heart-racing scared. It frustrates them, which is kind of fun. And they ask, "How come you never get scared?"

What I think to myself (but never tell them) is, "Because once you've had a doctor tell you that you have cancer, there's really nothing else that can scare you." On the scare scale, it's really all downhill from there.

I've been thinking about this lately, as I contemplate life with an immobilized right arm for six weeks. I've been reading a little bit about rotator cuff surgery and its aftermath. Not fun -- either of them. I'm reading about the potential complications, about failure rates, about long-term prognoses. Ugh. Bad enough that I probably won't be able to write for six weeks, at least. What happens if things don't go as planned?

Of course, I'm a cancer patient, so I know enough to step back and think all of this through. I know that what is presented online isn't necessarily the whole truth. And I know all about the tendency we have to see the worst, even if we know, rationally, that the worst happens only a small percentage of the time. What I really need to do is start a blog about rotator cuff injuries and start to review current research. It seems to work in helping through my journey with Follicular Lymphoma, so maybe I'll give it shot. Call me a Rotator Cuff Nerd and read my blog Roto Bob. (Do rotator cuff surgery blogs exist? Of course they do. That's because the internet is awesome.)

So back to fear: I can spend my time worrying about the surgery, and what will happen afterwards, but why bother? It's going to suck, no question. But am I afraid of it? No. I've been to the top of Fear Mountain. It's all downhill from there.

Now, don't get me wrong; I'm not saying a cancer diagnosis SHOULD be the scariest thing thing we ever hear. But for most of us, it is. We've all been conditioned to hear the word "Cancer" and think the worst. It's just the way it is, culturally, I guess.

But maybe that's not so bad. Because if Cancer, however we have built it up, is the worst thing that can ever happen, then everything else should be easy.

That's about as "bright side" as it gets.

Friday, January 24, 2014

BioVax: Vaccine for Follicular Lymphoma (In Eurpoe?)

First off, my shoulder: got the results of my MRI, and I have a torn tendon in my rotator cuff. (I've been avoiding words like "torn" when I tell most people this, but I don't think cancer patients and their loved ones are among the squeamish, so I'm going for it). It means I'll need surgery, and then six weeks in a sling. Still not sure how all that will affect either my job or my blogging, but I'll know more in about 10 days. Surgery won't be for at least a few weeks, so I'll keep plugging away as well as I can for now.


Given what that article from my last post said about vaccines, I thought it was interesting that BioVaxID, an attempt at a lymphoma vaccine, was being considered for approval for use against NHL by the European Union.

I've been interested by BioVax because it was mentioned by Dr. C, the lymphoma specialist that I saw six years ago, right after I was diagnosed. He was very excited about it way back then (six years is like an eternity in lymphoma research), though it has had mixed results in clinical trials, at least for treating Follicular Lymphoma.

That was a little disappointing to me. And I'm not sure if BioVax is included in the vaccines that people are getting so excited about. My guess is not, considering that it's been around for about 10 years and still hasn't been deemed a success.

But it also seems like it was a necessary step in the right direction, and now we know more about what made it less successful than we would have liked. So maybe we another form of it sometime in the future?

Whatever the case, we have lots of promising options in the pipeline, and it will be fun to see where we go from here.

Wednesday, January 22, 2014

More on Immunotherapy

I have to say, it's very frustrating being able to write so little. I have to write a lot for my job, and it stiffens up my shoulder a lot, so by the time I get around to the blog, I just don't have much left in me. I'll get MRI results tomorrow.

But today was a snow day, so I'm working from home, and I have the flexibility to sneak in a quick blog entry before I get back to the other stuff.

A few days ago, the Cancer Research Institute published a piece on their blog called "Cancer Immunotherapy: The Next Decade?" Seemed kind of timely, with Science magazine calling immunotherapy their Breakthrough of the Year a few weeks ago, and Dr. R bringing up anti-PD1 treatments when I saw him last week.

The writer, Matthew Tontonoz, asked some leading cancer researchers what they though lay ahead for cancer research. He describes them as having "A level of optimism that would not have been the case just five years ago."
a level of optimism that would not have been the case just five years ago.  - See more at:
Cancer Immunotherapy: The Next Decade?

What do they see? One sees combinations of immunotherapy treatments (inlcuding anti-PD1), working together to do an even better job than they do alone. (This is an old strategy, but with some exciting new pieces to work with.)

Another sees more anti-PD1-like treatments being developed. Right now, there are as many as 35 ligands and receptors that have been identified, but only two treatments that target them (anti-PD1 being one of them). (A ligand is a substance on the surface of a molecule that binds with another substance, and the combination usually acts as a trigger for another process. Anti-PD1 binds and triggers a shut off. The cancer cell blocks the T cell that would normally kill the cancer cell. The anti-PD1 blocks that block, and tells the T cell to do its job.) So there are potentially another 33 ligands that could do something similar.

There is also some cancer vaccine research that people are excited about.

Finally -- and perhaps most interestingly -- researchers are looking again at traditional radiation and chemotherapy, and discovering more about how they work. Apparently, in addition to killing cancer cells directly, they may also release antigens -- receptors that the body's immune system can attach to to help kill off the cancer cells.

As for Immunotherapy, one researcher believes we have only covered about 2% of what Immunotherapy has the potential to do for us. So that makes for a pretty exciting future.

And while this article discusses Immunotherapy very broadly, if you'd like to read more about anti-PD1 in lymphoma, the good folks at updated their section on that topic just a couple of days ago. Clear explanations, and lots of links to explore (including a link to an entry on this blog, which I appreciate.)

Coming soon: another update on my health.

Friday, January 17, 2014

Two Doctor Visits

Saw two doctors yesterday: the orthopedist for my shoulder, and Dr. R, the oncologist, lymph nodes (?). Reports below.


In the morning, I saw the orthopedist and was with him for about 5 minutes. My shoulder still hurts from my fall 10 days ago, and I can't lift my arm more than about halfway up if I hold it out to the side. But it's actually feeling a little better, and even that halfway movement is an improvement over a week ago.

The orthopedist wants me to have an MRI next week to see what kind of damage I did. If it's only a partial injury to the rotator cuff, it will heal on its own. Otherwise, surgery and a long recovery. (And probably switching this blog to one that features videos of me on my web cam instead of writing. Nobody wants that, really, so let's hope for the best.)


Much more importantly, I met with Dr. R in the afternoon afternoon. He sympathized with the shoulder injury, and showed me an exercise that he often has breast cancer patients do to strengthen their shoulder muscles.

Then we talked about cancer. As always, my appointments with him involve three parts: blood work, a physical exam, and self-reports of how I am feeling.

Blood work is "perfect," to use his word.

Physical exam was fine. Nothing popping up anywhere, nothing swelling that shouldn't be.

Self-report was good. Other than the shoulder, I'm feeling OK.

I asked him if there was any new lymphoma research that stood out for him. He mentioned that there were some new monoclonal antibodies in the pipeline, but time would tell if they were an improvement over Rituxan. He said that he knew that he and I had talked about Bendamustine a few years ago, and now that he had a few years of experience with it, he was impressed. He thinks that, depending on particular circumstances, he would likely recommend Bendamustine + Rituxan for the next time I need treatment. He likes its effectiveness, and its tolerability.

He also talked a little bit about the immunotherapy treatments that have made so much news lately (the anti-PD1 treatments). He and his colleagues at Yale Medical School are especially excited about these general approaches. They are mostly being used for solid cancers, and he couldn't remember if there were any results yet for blood cancers [there are], but he was impressed that the anti-PD1 approach was working on so many different types of cancers. Always cool to see a pro get all excited about a treatment.

We talked about my getting a scan, too. He said maybe in the spring or summer. Still no great urgency. Plus he knows I have that MRI coming up, and he doesn't want to put me through more lying still any time soon.

I will see Dr. R again in May.

Still hurts if I write too much, but it's worth it if the news is good.

Wednesday, January 15, 2014

Six Years: Leaps of Faith

Today is my Diagnosiversary. It was six years ago today that I found out I have Follicular Lymphoma.

And four years ago today, I had my first Rituxan treatment.


A couple of months ago, my younger son went on an outing with a club he belongs to at his high school, dedicated to the great outdoors. He's definitely our outdoorsman; his brother and sister enjoy being outside, but not the way he does; he spends time walking through forests and picking through animal scat to learn what he can. He was like that even as a baby -- when we couldn't get him to stop crying, we'd take him outside, and it would calm him to just look around.

The outing he went on involved rappelling -- using a rope and harness to get yourself down from the top of a mountain, building, or whatever other tall object you happen to find yourself on with a rope and harness. In his case, it was a tall tree with a platform about 50 feet up. He was with a group of about 14 guys.

Now, my son isn't really afraid of heights, as such, but he really doesn't like the feeling of falling. Roller coasters are not his thing -- the sudden drop makes him really uncomfortable.

Of course, rappelling is pretty much ALL feeling like you are falling. The whole thing is about controlling yourself as you make your way down. 

This particular rappel was especially tough. Rapelling can be "free," just hanging in the air on your rope as you come down, or it can involve pushing off of the building or mountain, hopping down the structure a few feet at a time. For this rappel, my son needed to stand on the edge of the platform and lean back, push off the platform and then swing under it, so his feet hit the tree. Then he could hop down the tree, holding on to the rope.

This isn't an actual picture, but it should give you a sense of what it was like for him after he swung under the platform:

So this was a literal leap of faith. He was dangling off a platform 50 feet in the air and was supposed to jump and trust that his feet will land on a spot that he couldn't see.

Of course, he told me about all of this after it was all over. Ten guys went first, and he and three others remained, all scared to go. But he did it. He said it wasn't fun dangling on the edge of the platform, but once it was over, he felt like he could do it again.

Hours later, and with my feet firmly on the ground, I said to him, "But you didn't need to be scared. Think about it -- ten guys went before you. The rope was strong enough to hold them. And the guys who run the course wouldn't have put you in any danger. You should have known you were going to be fine."

Easy for me to say, since I wasn't the one dangling on the edge.

I was proud of him for taking the leap.

My mind kept coming back to this for a few days. And it finally occurred to me that this was all very much like having cancer.

We get that diagnosis, and we feel like we're hanging off the edge of something very tall, and we can't see anything below us. We suspect it's a forest floor. We can't even see the floor, but we imagine it must be full of sharp, painful things, or poisonous snakes, or deep water, or whatever else goes beyond whatever we have feared before. And we keep being told to take the leap, that everything will be OK. But we can't actually see the tree we're supposed to land on. And even when we do, we still need to lower ourselves down to whatever is waiting below. It's terrifying.

What helped me most, six years ago, was having someone say, "But you didn't need to be so scared. Think about it --people have gone before you. The rope was strong enough to hold them. And the guys who run the course will do their best to not put you in any danger."

If I was going to give advice to someone newly diagnosed with Follicular Lymphoma, it would be this:

There have been people who have been through this before. Seek them out. They have dangled off the edge. They have taken the leap. They know that the rope is strong, and that the tree is there, even if you yourself can't see it. Even better, they know where the footholds are. They will loan you gloves. They will be there to catch you at the bottom. They will shout your name all along the way.

No one needs to do this alone. It feels like you're alone, at the top of that tree, but you never really are. I've told the stories before: The best things I ever did, early on, were to open myself up and start talking to my wife, and then to join a support group online.

There are always people who can help.

Thanks for another good year, everyone.

Wednesday, January 8, 2014

No Oncologist Visit Today

I had an appointment scheduled for today with Dr. R, the oncologist, but I had to cancel it. I'm feeling fine (other than the painful shoulder), so it's no emergency to see him (just a four-month check up). I'll get in to see him as soon as I can, so I can confirm that I'm as healthy as I feel.

I'll keep you updated.

Tuesday, January 7, 2014

Shouldering Responsibility

The title puns just keep rolling in....

Sunday night, I slipped on some ice while taking out the garbage and landed right on my right shoulder. I'm lucky I didn't land on my head. Went to an ortho yesterday afternoon. Nothing's broken, thank goodness, but I probably have some rotator cuff damage. I won't find out just how much until next week when the inflammation goes down.

In the meantime, I'm in a sling, which makes typing hard. So I may need to take a few days off.

I do have a 4 month appointment with Dr. R tomorrow, and  I'll definitely report on that. Then we'll see how it goes.....

Monday, January 6, 2014

The Buzz on Cancer

I called this post "The Buzz on Cancer" because it's about bees. Ha! Funny stuff.

I'm cleaning out some old links from  last month, and this one is from Smithsonian magazine, called "Can Bees Be Trained to Sniff Out Cancer?"

Apparently, bees have an amazing sense of smell; they can detect even just a few molecules of a scent in a room. Scientists have even been able to train them to detect substances such as methamphetamines, explosives, and diseases such as diabetes.

So it's really not too much of a leap to think that bees could be trained to sniff out cancer.

A British designer created a two-chambered glass diagnostic device for just such a purpose. Bees are trained with a food reward to react to specific scents. A patient blows into the device, and if bees sense the presence of cancer, they swarm to it.

The project was created as part of  Master's thesis in Art. Very cool.

Bees aren't the only animals to be trained to sniff out cancer. Dogs, for example, have also been trained to do so. As this article notes, though, bees have an advantage in that their antennae can pick up individual scent molecules more effectively than dogs' noses. In fact, dogs need about 3 months of training, and have a 71% accuracy rate. Bees have a 98% accuracy rate, and can be trained in about 10 minutes.

Now, I have written about cancer-sniffing dogs before. I find them fascinating because the first cancer-sniffing dog was a standard schnauzer named George, and my own dog, Strudel, is a standard schnauzer.

I've also pointed out that, despite having had her for nearly a year, my Strudel gave no indication whatsoever that I might have cancer. No sniffing around and acting agitated. No pulling on my sleeve and leading me to a phone book open to "Oncologists." Nothing. Just the occasional leg hump, and a lot of whining to go out to go to the bathroom or eat dinner.

I'm not saying she isn't cute....

....just kind of useless in the cancer detection department.

So I guess I'll take the bees. And as an award-winning gardener***, I'm OK with that.

(***My kids fine me $1 for every time I call myself an award-winning gardener, but frankly, it's worth it.)

Friday, January 3, 2014

Dr. Cheson on Follicular Lymphoma: Part 2

Late last month, Lymphoma Rock Star Dr. Bruce Cheson offered part 2 of his self-interview on Follicular Lymphoma and how he treats it.

Part 1 was published by Clinical Oncology News in November. In part 1, Dr. Cheson discussed several topics, including the "watch and wait" controversy (whether or not patients with no symptoms should be advised to wait, or whether they should be treated right away with Rituxan). Dr. Cheson still believes that watching and waiting is a valid option, given what research tells us. I like that he is just a little skeptical about research, and doesn't jump on whatever the latest results are. (Of course, if I'm being honest, it's probably because what he suggests is what I already agree with. I like it when a Lymphoma Rock Star validates my choices....)

He gets into more issues in part 2. Some highlights:

  • He acknowledges that there is still no widely accepted standard first treatment for Follicular Lymphoma. While W & W does remain a valid option, about 15% of previously untreated patients receive straight Rituxan, which has an Overall Response rate of about 80%, median Progression-Free Survival of 24 months, and durable responses of more than 5 years in about 25% of patients. However, there is no Overall Survival benefit compared to patients who are only observed (which is a big reason he favors watching and waiting).
  • Most patients receive some combination of chemotherapy + Rituxan. In the 2009 LymphoCare study, about 55% of patients has received R-CHOP, about 23% had received R-CVP, and about 15% had received Rituxan + Fludarabine. All had fairly comparable results, but other research showed R-CHOP to be superior to the other two. (That said, results that were reported in 2009 reflect some fairly old research -- patients received their treatments at least 5 years ago, and a ton has happened since then.)
  • Bendamustine has emerged as an excellent alternative to R-CHOP, with better response rates and fewer side effects -- at least in some research. Other research, however, shows more similarity between them, particularly in terms of side effects. There may be less toxicity with Bendamustine (and thus less nausea and hair loss), but similar or worse chances of infection, anemia, and fatigue, for example. All things considered, Dr. Cheson still favors BR over R-CHOP.
  • In perhaps the most controversial segment, Dr. Cheson discusses Rituxan Maintenance -- the practice of following up a chemo + Rituxan treatment with regular doses of Rituxan over two years. He reviews several studies of R-Maintenance, none of which seem to show definitively whether or not it is superior to observation (basically, going back to watching and waiting). Dr. Cheson does not use R-Maintenance. He calls it "expensive, time-consuming and inconvenient," and since it does not show an improvement in Overall Survival, he favors simply trying another treatment when necessary.
  • He addresses FLIPI scores and their role in treatment decisions, and points to recent research that shows that the model might need to be revised or scrapped.  (FLIPI stands for
    Follicular Lymphoma International Prognostic Index, and is used as a general measure of prognosis, based on factors such as age, stage of disease, number of lymph nodes groups involved, etc.).
  • Finally, Dr. Cheson addresses future prospects for Follicular Lymphoma treatment. There are a bunch, as we cancer nerds all know: R Squared (Rituxan plus Revlimid/Lenalidomide), with a 98% response rate in a phase 2 trial; and the various kinase inhibitors, which mess with lymphoma cells in different ways. These include Ibrutinib, which keeps B cells from maturing; Idelalisib, which keeps them from migrating and surviving, and ABT-199, which helps trigger cell death. 
I think this is about as good a review of the state of the field as you're going to find, complete with references to all of the research that has gone on. Obviously, Dr. Cheson has his own biases when it comes to all of this (and the title of the article makes that pretty clear), but it's all very well informed.

For me, the value comes in being able to have an informed discussion about all of these options with my oncologist -- a discussion that we will continue next week, when I have a 4 month (or so) follow-up appointment. I don't anticipate needing treatment immediately, but we can have a discussion about things like Bendamustine and some of the kinase inhibitors so we both have a sense of where we might want to go, once treatment becomes necessary.

Communication is key, after all.