Thursday, May 29, 2014

ASCO: Bortezomib (Velcade) for Follicular Lymphoma

More good news from ASCO about that "new, awesome stuff": a positive report on Bortezomib, which I will refer to as Velcade.

Velcade is a proteasome inhibitor. Proteasomes are  necessary for cells to function properly. They break down and clean up proteins in cells (including cancer cells), helping the cell stay alive. When proteasomes are inhibited, the proteins pile up in the cell like dirty clothes in my son's bedroom. This causes the cell to die. Velcade has already been approved for use on multiple myeloma and relapsed mantle cell lymphoma.

The ASCO presentation is focused Indolent NHL, including Follicular Lymphoma, particularly on patients with High Tumor Burden (which means they have a tumor larger than 7 centimeters, or close to 3 inches; they have nodes in 3 different areas that are more than 3 centimeters, or an enlarged spleen, or nodes that are pressing on organs).

The researchers gave Velcade and Rituxan to patients who were getting their first treatment. There were 42 patients overall, with 33 of them having Follicular Lymphoma (the rest had other indolent lymphomas). The results: overall, 70% of patients received a response, with 40% achieving a Complete Response. For the FL patients, the results were even better: 76% Overall Response, 44% Complete Response. Side effects seemed manageable.

The researchers mention that we need more long-term follow-up on treatments like this, and they offer a 4 year follow-up. They divide patients into FLIPI scores (I won't get into what that means, though it's basically a measure to guide treatment, and to compare patients in clinical trials. I recommend for more on FLIPI scores.) Lower scores had better Progression Free Survival and Overall Survival.

And I love this statement from the abstract: "Interestingly, 4-year OS was superior for FL compared with non-FL histologies." "Superior," in this case, means that 97% of the Follicular Lymphoma patients were still alive after 4 years. That's a dang good number.

The bottom line: In this small sample, Velcade and Rituxan worked as well as chemo and Rituxan, but with fewer side effects thanks to the targeted nature of the combination.

Great news. More to come.

Monday, May 26, 2014

ASCO: Lenalidomide (Revlimid) for Follicular Lymphoma

More from ASCO: Great results from a phase 2 trial of Lenalidomide in Follicular Lymphoma patients who have not yet had any treatments.

So let's get a couple of things straight right off. First, this is a study of Lenalidomide, also known as Revlimid, and Rituxan. The combination is often known as R + R, or R-squared, so I'm going with calling it "Revlimid," for the poetry.

Second, this is a look at R + R is Follicular Lymphoma patients who had not yet received any treatment. There was already a phase 2 trial, with results presented at last year's ASH conference, that showed how well R + R worked for patients who had already had some treatment, as well as a few who had been untreated.

There seem to be a bunch of teams working on R + R in Follicular Lymphoma, and this one is kind of stellar. It includes Lymphoma Rock Stars John Leonard and Bruce Cheson, for example.

As for the study: the team looked at 65 patients (a pretty small number, though to be expected in a phase 2 trial). 50 of them were able to receive the R + R. 72% of them achieved a Complete Response, and it came pretty quickly. (The median time to CR was 10 weeks, and 92% of CRs came within 24 weeks. The study involved 12 28-day cycles. Seems fast to me.) There was no correlation between CR rate and FLIPI score, disease grade, or bulky disease. In other words, this stuff worked no matter where they were at on their lymphoma journey.

The researchers conclude that the numbers justify moving on to a phase 3 trial with more patients, because the numbers were comparable to treatment with chemotherapy. More importantly, the numbers are even better than those presented at the ASH conference, where 42% of untreated patients had a Complete Response (compared to the 72% here).

This is all fantastic news.

The ASH presentation was interesting because it tried to explain how R + R (especially Revlimid) works. Basically, it helps keep things working that are supposed to be working, and that stop working when cancer comes along. So R + R works by helping the body work naturally, like encouraging Killer T Cells to wipe out things that don't belong (like cancer cells).

I'm sure this will lead to yet another phase 3 trial for R + R. It will be interesting to see how it all goes down in a larger trial, over a longer term, particularly with long-term side effects.

But for now, we'll call this one a win.

Saturday, May 24, 2014

ASCO: Patterns of Care for Follicular Lymphoma

OK, here we go -- the latest and greatest in Follicular Lymphoma treatment. First up -- just who gets what when it comes to FL treatment?

A group of researchers in Pennsylvania were curious about patterns of care -- who gets what kind of treatment for Follicular Lymphoma. They were particularly interested in differences between academic and community settings; that is, whether there were differences in preferences for treatment between research hospitals and plain ol' oncologists.

The researchers looked at 152 patients, with ages between 30 and 86, over two years. Of those patients, they found that 59% were given straight Rituxan as their first treatment. 21% got R-Bendamustine; and 23% got R-CHOP or R-CVP. (Important to note: there's no mention of Watch and Wait here. I assume that means they only counted the first thing that got put into a patient's bloodstream, and not the first treatment decision that was made. W & W is, of course, a treatment decision.)

They found that there wasn't a huge difference between frequency of treatments for the academic and the community sides: Both prescribed R-Bendamustine about 20% of the time, while the academic side went with Rituxan 56% of the time and R-CHOP/R-CVP 24%; community totals were 53% for Rituxan and 23% for R-CHOP and R-CVP.

They conclude that treatment patterns remain "static," given that Rituxan on its own is by far the preferred treatment. They also call it "a mild, gentle paradigm," since Rituxan has relatively few side effects. They suggest that, given how much more successful Bendamustine is than R-CHOP, we should going in that direction much more aggressively than we are. They also wonder how much more successful we might be in extending Overall Survival if we were to be more aggressive in first treatment (that is, pushing Bendamustine over everything else).

It's an interesting study, with a couple of problems, I think. The first is that their percentages (59 + 21 + 23) add up to 103%. We'll assume that's either a rounding error or a typo, but it doesn't inspire much confidence either way. This is also a very small study, both in the number of patients and the time frame. It would be interesting to compare this to something like the Lymphocare study, with many more patients and a longer time frame. (Results from Lymphocare do look at this kind of data, but it's older and doesn't include Bendamustine in its treatment options.)

I'm also not sure how I feel about the "aggressive" push. Of course, this is influenced by my own treatment history, which began with W & W, and moved on to straight Rituxan, based on my oncologist's philosophy of "do no harm" -- use as little treatment as necessary, and only when necessary. I've come to accept the wisdom of this approach, so starting out with a relatively Big Gun seems unnecessary to me.

So I'm torn. I appreciate their desire to push for Bendamustine; it's a worthwhile treatment, and in my own humble opinion, a better option than R-CHOP for an initial treatment, with R-CHOP being reserved for possible transformation. On the other hand, I'm not sure a one-size-fits-all, we-should-be-more-aggressive approach is the best way to do things, either. (To be fair, they are calling for more research into whether this really is the best approach, though they seem to favor it.)

If anything, the future seems to be moving toward less aggressive treatments, with better targeting based on genetic profiling. We may be able to tell which treatments are likely to work best, with the fewest side effects, based on a better understanding of the differences between individual patients.  That seems to me to be the best place to put our efforts. Of course, we're not quite there yet.

So what this study highlight, for me, is that we still don't have anything resembling a standard of care for Follicular Lymphoma. We don't have anything that tells us we'll be better off if we try A first, then B, and then if we need it, C and D.

What we do have is good doctors who know patients and know treatment options, and who are hopefully up on which ones will work best for each of us. So the best treatment option right now? The one that you and your doctor decide on after a long, careful discussion with lots of questions and lots of listening.

Friday, May 23, 2014

Follicular Lymphoma at ASCO!

The annual meeting of the American Society of Clinical Oncology takes place next week, from May 30 to June 3. It's like Christmas in the spring! One of my favorite times of the year! We get to read about new research, updates on clinical trials, and basically get a big sloppy dose of hope at what might become reality in the months and years to come. Plus, since the focus is on clinical oncology, so it's all about the front line doctors that make the decisions that affect us most directly.

And I like to think that the oncologists are just as excited about all of this. Like, cheerleader-level excited:

We've got a message for you, Cancer!
Ready?! Go!!
We'll make you a fiasco!
We'll punch your gut
And kick your butt
Like we know Tae kwon do!

(That's not bad for off the top of my head. All those basketball games when I watched my daughter cheer, I guess. I would have liked a better rhyme than "tae kwon do," but the punch-kick dance moves would be fantastic....)

**A little update: when I did the cheer for my daughter, she winced and said, "No! No! No!")

Anyway, ASCO starts next week, I'm super-excited, and I'm looking forward to reviewing some of the research abstracts that are available on their web site. A quick search of their abstracts shows that there are 143 presentations that deal with Follicular Lymphoma in one way or another.

I'm certainly not going to talk about all of them. Some are so specialized and obscure that I know they wouldn't apply to me, and I'm not sure how many people they would apply to. Some would, it seems to me, just cause unnecessary panic in people who read about them (like the comparison of men and women with FL. I'm not even going to link it). Some are some darn attractive, just based on their titles, that I'm not sure I can resist (I'm talking to you, SEXIE R-CHOP study of elderly male patients with low serum levels of Rituxan). And some might be interesting, but are less valuable to me, personally, because they seem dated -- like the update on the Italian study comparing R-CHOP, R-CVP, and R-FM, which are all still used, but seem like they are on there way out, except maybe CHOP, given all of the new awesome stuff that is in the pipeline.

So I'm probably going to focus on that new awesome stuff. It's what excites me and gives me hope.

(Incidentally, that SEXIE R-CHOP trial is related to the older SMARTE R-CHOP trial. I'm not making that up. I'm just a little hurt that researchers didn't invite me to participate in both of them. Maybe they're holding out for the FATT BALD TIRED MIDDLE-AGED trial.)

I'm hoping I can spend a chunk of this long weekend doing some reading and sharing the results with you over the next couple of weeks.

Happy ASCO!

Tuesday, May 20, 2014

More on Rituxan Injections for Follicular Lymphoma

The May 12 edition of the Journal of Clinical Oncology had an interesting twist on the Rituxan Maintence issue, reporting on an early study on subcutaneous application of Rituxan -- a quick, single injection rather than a long intravenous drip.

There was actually a report on subcutaneous Rituxan a couple of months ago in the journal Lancet Oncology, which found that the injection was non-inferior to the current IV method, and didn't present any new safety concerns. That was a different study, with a different research team.

The very recent report from the JOC is a little bit different. The focus is on whether or not a Rituxan injection can be useful as a way to deliver Maintenance Rituxan.

The study is in two stages. The first stage focused on figuring out how much of a dose would be the same as the traditional IV. So 124 Follicular Lymphoma patients were divided into two groups, with half receiving the injection, and half getting it through the traditional IV. In the end, the study predicted that the injection would require 1400 milligrams of Rituxan.

In stage 2, a new crop of 154 Follicular Lymphoma patients were divided into two groups. One was given the 1400 milligram dose of the subcutaneous injection, and the other was given the IV. This stage found that the two types of application were pretty comparable -- the same percentage of patients had side effects of various types, and the concentration of Rituxan in the blood was about the same for the two groups.

So, basically, this study was set to determine just what that injection should include if it was going to be the same as the traditional IV. The next step will be to determine if it actually works as well.

While this study doesn't really get into why a Rituxan injection would be preferable to an IV, those of us who have had Rituxan by IV already know -- a quick shot is a heck of a lot better than a 4 hour drip, assuming its as safe and effective as the drip. The earlier study was more clear about its larger aims -- a quick shot can reduce costs.

Two fairly successful studies? I think this thing is going to happen some day. It's still early in the process, but so far, so good.

Saturday, May 17, 2014

Measles and Lymphoma

The big news in the cancer world this week was the news that the measles cured cancer.

Well, not really, but that is, naturally, how a lot of people took the news.

What actually happened was Mayo Clinic researchers changed a measles virus so it would attack the cells of Multiple Myeloma (a blood cancer). They tried the treatment on two patients, giving them a single intravenous dose that was the equivalent of about 10 million doses of a measles vaccine. Both patients responded well at first. They had some immediate reactions (fever, headache, etc.), but they were taken care of quickly. Of the two patients, one didn't do well, with the cancer returning after 6 weeks.

But the other did better -- much better -- and has been in remission for 9 months. The modified measles virus took out most of the cancer, and some local radiation took care of the rest.

There are lots of commentaries online about this research, some of them inaccurate, so better to read directly from the Mayo Clinic Proceedings, or watch this brief video from Dr. Stephen Russell, lead researcher for the project:

There are definitely some things to be excited about here, but also some things to be cautious about.

First, the cold water:

As lots of commentators have noted, this study involved two patients, and only one of them had success. And that one patient has only been in remission for 9 months. That's excellent, especially when compared to the other patient in the study, but we certainly can't call her "cured." The researchers are very open about the fact that this is "proof of principle" study. In other words, they want to show that it is possible to change a virus and have it recognize and attack specific cancer cells. There will still be a lot of work to do, and a lot of testing to conduct, before we know for sure that this will work on a large scale.

So now, the "warm water" -- some things to be excited about.

First, Dr. Russell is pretty excited. I always get a charge out of seeing a researcher get excited about results. Now, everyone is going to excited about his own work, and his excitement is no guarantee that this will all play out the way he wants it to, but I can get a little hop out of it anyway. He made a statement in the video that is very exciting: "We believe it can become a single-shot cure" -- one shot of 10 million vaccines, not six months of infusions like with chemo. Very cool.

Second, also very unlike chemo, the side effects were relatively mild, and were treatable immediately. Dr. Russell describes the patient being given Benadryl to take care of the side effects. That immediately reminded me of my own experience with Rituxan, which had relatively mild side effects for me. You have to love a treatment with side effects that can be taken care of with something you can buy at Walgreen's.

Finally, there is the question of how this affects Follicular Lymphoma. Obviously,  Multiple Myeloma is not Follicular Lymphoma. But I think (in my hopeful, optimistic way) that the "proof of principle" is important for those if us with FL, too. Multiple Myeloma is, like lymphoma, a systemic cancer. In other words, while cells can gather in one place (the way FL cells gather in the lymph nodes), for the most part, the cells are flowing through the blood. This measles virus treatment is designed to go after systemic cancer.

Now, this particular virus was designed to seek out CD46 proteins, which are specific to Multiple Myeloma, so it wouldn't work as it is on Follicular Lymphoma patients. But the principle is there: in theory, a measles virus could be modified to respond to CD20 (or some other protein) and thus seek out Follicular Lymphoma cells. In theory.

As I said, there's a whole lot of work that will need to be done before we can say this is a successful treatment for Multiple Myeloma. And as much as I get excited by Dr. Russell's enthusiasm, it will be years, many years before we can say it is a cure for that blood cancer.

That means it would be even more years still before we could say the same about Follicular Lymphoma.

But it's certainly something to keep an eye on. And most certainly another reason for hope.

Tuesday, May 13, 2014

Another Failed Vaccine for Follicular Lymphoma

The Journal of Clinical Oncology gave us bad news last week: another attempt at a vaccine for Follicular Lymphoma has failed.

I've been trying to wrap my mind around this one for a few days, and I think I'm getting caught up in some of the details.  For example, the study used something called a Keyhole Limpet Hemocyanin, or KLH, which is a protein found in the "blood" of the limpet, a kind of snail that lives off the coast of California. KLH is used in developing antibodies. It's all pretty straightforward, but every time I see "limpet," I can't help but think of the movie The Incredible Mister Limpet with Don Knotts, which I saw about a hundred times when I was a kid because it was Saturday afternoon and there were only 5 channels and there was nothing else good on. He plays a wimpy guy who loves fish, and he wishes he could be one, and then the movie turns into a cartoon, and then he helps us win World War II. I haven't seen it in years. It's all very distracting when I'm trying to read a complicated medical journal article.

 And so, shoving Don Knotts out of my head, we can move on:

As I've said before, I've been very interested in vaccines for Follicular Lymphoma because a few days after I was diagnosed, I saw a Lymphoma specialist who mentioned some treatments in the pipeline, and one that he was particularly excited about was the vaccine. He didn't mean a true vaccine, but an injection that stimulates the immune system to fight off cancer.

It's been over six years now, and the news about vaccines continues to be mixed, at best.

BiovaxID, for example, is based on the idea that each of us has a unique "idiotype" on our cancer cells. BiovaxID works by taking a sample of an individual patient's cancer cells and training the body to recognize and attack them. (How they do that is complicated -- it's where The Incredible Mister limpet comes in.) The results for BiovaxID have been mixed. Pretty good, but not really good enough -- the FDA turned down the request for accelerated approval and asked for an additional trial because they hadn't been able to enroll enough people. But its less-than-ideal numbers actually yielded decent results.

The recent Journal of Clinical Oncology article looked at a different Follicular Lymphoma vaccine, MyVax.

Really, this isn't about the effectiveness of MyVax. The FDA turned down MyVax in 2008 because a phase 3 trial showed that patients who were receiving the treatment weren't any better off than the patients in the control group, as measured by Progression Free Survival. The company that manufactured MyVax declared bankruptcy, and the vaccine hasn't been made since then.

What the JOC article does is provide an update on some older data. How old? The patients in the trial received CVP without Rituxan. (There's a cancer nerd joke to be made in there somewhere. Probably funnier than a Don Knotts movie, if anyone cares to pursue it.)

So that part of the data isn't really new. We've known that for 6 years. What is new is that a group of patients who received the MyVax vaccine -- 41% of them -- had a response, and it was significant. In other words, not everyone who received the vaccine did well, but those who did well did really well.

This raises some questions. What was it about that group of patients that made them respond so well? In a separate article from the same issue of the journal, Dr. John Gribben speculates on some of the reasons (while mostly confirming that vaccines don't seem to work). Maybe there's something about the microenvironment of the cancer cells that makes these patients special? It's possible that the patients had different FLIPI marks and weren't really comparable.

So, as I said, this whole thing was tough to wrap my mind around. And it wasn't just because of Don Knotts. As much as Dr. Gribben makes it clear that this trial was a failure ("This is the third randomized trial to report on the use of different approaches to examine the impact of Id vaccine and adds to the data suggesting that there is little evidence of a beneficial effect of Id vaccine in patients with FL"), there are little bits of hope shining through in spots, enough to make me believe that maybe this isn't dead yet.

And it's not just the memory of speaking with Dr. C six years ago. Almost every commentary about Follicular Lymphoma vaccines starts with some statement about how promising the idea has been, and ends with frustration about why the promise hasn't come true yet. So there's got to be something there. Maybe with all of this other work in immunotherapy going on, the missing piece will be found.

So I'm hanging on to hope. In the meantime, there are plenty of other things to be excited about, right?

Sunday, May 11, 2014

Happy Mother's Day

I'd like to wish all of you Moms a Happy Mother's Day.

I have to say, I've encountered some pretty spectacular moms in the last six years as I've been on my cancer journey.

I've seen some moms in my support group who have had children of their own, adult children and actual kids, and seen their determination in doing what they can to protect their babies. Researching treatments. Fighting with doctors and insurance companies. Providing a shoulder to cry on.

I've seen nurses who have kids of their own, who treat patients like their own kids. (My wife says once you become a parent to one child, you become a parent to the world.)

I've seen my wife worry about our own kids and show me her worry. I've seen her worry and hide it. And I've seen her be a rock when I was worried. Mostly, I've seen her be a rock.

And I saw my own mom's worries about me. Those worries, of course, wouldn't stop her from siting with me all morning for a Rituxan treatment. It certainly wasn't fair that she had to go through it all with me, but it sure didn't stop her from doing it.

If you've ever seen a mom get mad at a coach for not playing her kid, and seen the anger in her eyes, then you can imagine a mom up against cancer -- her own, her partner's, her child's. Just multiply that anger by a thousand, and add a healthy dose of determination.

So that's what I'm feeling today. Sorry for moms whose lives have been touched (and sometimes slapped hard) by cancer, and gratitude that you were there despite it.

I hope you've all had a very happy day.


I think I linked to this during my first Mother's Day with lymphoma six years ago, but took it down because the YouTube comments were rude. My boys were 11 and 9 then. They are 17 and 15 now, and I can pretty easily see them making this same video themselves. Enjoy.

Thursday, May 8, 2014

Oncologist Appointment

I had my four-month check-up with the oncologist yesterday. Things continue to look good.

As always, the appointment with Dr. R involved some blood work, a physical exam, and my own reporting of how I'm feeling.

The blood work was "perfect," as Dr. R said. It was all pretty much in line with my last few.

The physical exam was fine, too. No new nodes popping up, and nothing swollen that shouldn't be.

And my own report? Other than my physical therapist beating the crap out of me three days a week, everything seems fine.

All in all, a nice, boring visit.

The only bad part of it all was that everyone was in a sassy mood, and the whole staff messed with me. Even Dr. R stuck his head into the room while I was getting blood taken, to make fun of the Red Sox. I reminded them that they were picking on a cancer patient, but they didn't care. So mean. At least the phlebotomist, who I had not seen before, was excellent. Talk about smooth -- I didn't even know she had put the needle on. I complimented her work, which she seemed to appreciate.

One final exciting bit of news: I'll be getting a CT scan next month.

I haven't had a scan since August 2011, which was about 18 months after I had my Rituxan treatment. Things looked pretty good then, and Dr. R hasn't seen much need to get one since. But now we're coming up on three years, and he thinks it's probably time to take a look inside. I'll see him again in September, and he said there's really no rush on the scan -- any time between now and September would be fine. I'm going for it near the end of June. Most convenient, and I think I'd like to just get it over with.

It's interesting to look back and think about how much I valued scans early on. When I was first diagnosed, I thought I'd be getting them every month, and I was pretty disappointed when that wasn't the case. Now when he says "Let's hold off a while longer," I'm pretty OK with that. Time helps to ease anxiety. You get used to carrying this thing around with you. It also helps that I've been without symptoms for so long.

So I'm feeling that post-oncologist appointment sense of peace right now.

I wish you all that same peaceful, easy feeling.

Monday, May 5, 2014

Busy, Busy

I realized this morning that it has been a few days since I have posted anything to Lympho Bob. It's that time of year, I'm afraid --busy at work, the kids are all involved in time-consuming activities (and all feeling kind of stressed about it), and I haven't found anything really significant online about Follicular Lymphoma in about a week. Physical therapy for my shoulder is getting more aggressive, and taking a good chunk out of the middle of my day. I get out of there just in time to start dealing with the kids.

As I always say, though -- I'm happy to be busy, because it means I'm healthy enough to run around like a mad man.

Two quick things that I would like to point out, though:

First, it's National Nurses Week. Actually, it starts tomorrow, a Tuesday, rather than Sunday or Monday, as one might expect a "week" to start. This is because it always ends on May 12, which is Florence Nightingale's birthday. This seems appropriate, given the hours that nurses work, and the way so many of them do more than they need to. Definitely not a 9-to-5 job, and definitely deserving of our recognition and praise. I've met some doctors I haven't cared for, but dang few nurses that haven't gone out of their way to make me feel better.

Even some members of the U.S. House of Representatives thinks this is important. House Resolution 540 was introduced on April 3, "Supporting the Goals and Ideals of National Nurses Week 2014."

(Of course, it was immediately referred to the House Committee on Energy and Commerce, where it has languished without a vote, despite 21 co-sponsors from both parties. But I'm sure there's a good reason for that, and they'll get something going before May 12. (Although, voting on the resolution is not on their calendar this week. And they haven't voted on making May the official "Health and Fitness Month" or "National Allergy and Asthma Awareness Month" either, so no one should feel bad about this. They're very busy.)

(Also, as a reminder  -- midterm elections in November!)

The other thing I wanted to point out was that I see my oncologist, Dr. R, on Wednesday. I'll have an update late Wednesday or early Thursday. I'm not anticipating any problems -- I'm feeling good,at least as far as cancer stuff goes,  and I don't feel anything popping up anywhere that shouldn't be. It's been about four months since I've seen him, so we'll probably chat about my shoulder injury and horrible the Red Sox look so far this year. Maybe I'll throw in a question or two about lymphoma. I'll let you know.

And I will be sure to wish the fabulous nurses there a happy National Nurses Week. Be sure to do the same when you get a chance.