Sunday, November 30, 2014

ASH: Young Folks with Lymphoma

If you have read enough of Lympho Bob, you know I was diagnosed a few months after I turned 40.

I've seen a few studies of "Young Adults" who have been diagnosed with Follicular Lymphoma, and the usual definition of "Young" is under 40. Personally, I felt pretty dang young when I was diagnosed. Cancer is for old people, and this particular cancer was especially for old people, typically diagnosed in those over 60.

Well, I have found a study that defines "Young" as 18-40. Woo hoo! 40 is young!

(Of course, I'm closer to 50 now, and feeling old, but we'll ignore all of that.)

Another of the interesting ASH abstracts is called "Disease Characteristics, Treatment Patterns, and Outcomes of Follicular Lymphoma in Patients 40 Years of Age and Younger: An Analysis from the National LymphoCare Study," written by a bunch of researchers from impressive institutions all over the U.S.

They call Follicular Lymphoma in the 40 and under crowd "extremely rare," and point out that little is known about disease characteristics and outcomes for this group. They looked at 164 Young Adult patients in the National LymphoCare Study (about 6.2% of the total).

As for treatments, 19% did watch and wait, 12% got straight Rituxan, and 47% got some kind of chemo + Rituxan (about 61% of that group got R-CHOP).

As for outcomes, Overall Survival at 2 years was 97.4%, and at 5 years, 93.7%. After 7 years, it was 92%. Those are pretty good numbers. In fact, the researchers call them "outstanding."

What's really interesting was that they compared the numbers to people who had been diagnosed between the ages of 41 and 60 -- you know, older folks.

They found that the survival numbers were pretty much the same.

In other words, younger patients really don't need to be treated any differently than older patients.

I think that's encouraging for younger folks. While there haven't been a lot of  studies that have looked at them (us) directly, there was some slight worry that younger patients might have more aggressive disease. That doesn't appear to be the case.

And it's encouraging for the Old Timers, too. Just in case you thought those young folks were somehow better off  than you, that doesn't seem to be the case.

And the really encouraging thing is those "outstanding" Overall Survival numbers. There's no guarantee, of course, that our disease will ever behave like the statistics say it will. But if you're young and looking for a reason to be happy, that's a good one to hang on to.

Thursday, November 27, 2014

Happy Thanksgiving

I'm aware that some Lympho Bob readers do not live in the United States. So as some of you may or may not know, today is Thanksgiving Day in the U.S.

It's a day set aside for us to give thanks, as the name implies. The cynical will say it's really a day to not go to work, eat 3 times the calories that a normal person needs in a day, watch football, and get mad at relatives. I might be leaving something out, but I think that about covers the basics. According to the cynical, anyway.

But many of us do take at least a few minutes to think about what we are thankful for.

Especially those of us who are cancer patients. Sometimes that can be tough -- it seems like there is so much bad stuff happening, it's hard to think about something good that's worth being thankful for. But even in the darkness, there's got to be a little bit of light. Or maybe even a little bit of hope? Look at the good stuff coming out of ASH this year (I haven't finished with that preview). Maybe it's dark, but at the very least, you can be thankful that somewhere, in one of those kitchen drawers, there's a flashlight. Don't give up looking for it.

For me, this year I am especially thankful for my family. I've been thinking about my lymphoma journey lately (I'm coning up on my 7th diagnosiversary in less than two months), and the part my family played. I've had lots of reason to think about them lately, and how important they have been to me.

My wife, of course, has always been a rock for me. We have a way of balancing each other out, being strong for one another when the other needs it. I'm very thankful for that.

And my kids. I have three teenagers now. They're good kids. not perfect, but very good. The things they give us to worry about are really not so bad. I don't brag about them here as much as I used to, but they're still doing lots of things worth bragging about.

And my father. He's always been a good model for me. I'm thankful that he's still here for me, helping whenever and however he can.

And my brother. When I was first diagnosed, he was there for me in so many ways. Things have calmed down over time, of course, and the heat and danger that comes with a cancer diagnosis has slowed and slipped away. But I still appreciate all that he did for me. I'm thankful that he was there, and I know if I ever need that again, he'll be there again.

And my nieces, my nephews, my in-laws, and the rest of my extended family -- I'm thankful for them, too. As we get older, and our lives get crazier, and there's more distance between us, it's easy to forget about them. But when I get the chance to be all nostalgic, I think about good times, and they make me happy.

I have lots of other things to be thankful for (including that upcoming diagnosiversary, and the 7 good years I've had since then), but this is a year to be thankful for family.

I hope all of you can take a little time to be thankful for something today. It's good to think about the good things.

Monday, November 24, 2014

ASH: Bendamustine + Zevalin

I think my ASH posts over the last couple of weeks have been kind of mixed. A couple of negative ones. I don't like writing those, but I think they're necessary. And I've avoided writing about some potentially positive ones that deal with new treatments, because I think those new treatments are kind of piling up, and I feel like I should hold off until we at least get to a phase II trial and have some evidence that they work. Overall, I think ASH this year is positive for Follicular Lymphoma. I'm just searching for the right news to show that it's true.

So here's a bit of good news: It looks like Bendamustine + Rituxan (B-R), followed by Zevalin, is a really good combination.

Bendamustine is, of course, a chenotherapy that seems to match CHOP in effectiveness, but with fewer side effects. That's a pretty nice combination. It seems to have replaced CHOP as an initial treatment for a lot of oncologists.

Zevalin, on the other hand, despite its effectiveness, is not nearly as popular. A type of RIT (RadioImmunoTherapy), Zevalin delivers a dose of radiation directly to lymphoma cells, unlike traditional radiation therapy, which needs a non-moving target. Studies have shown Zevalin and other RITs to be very effective. However, in the U.S., there are issues that keep it from being used as often as it might be (the way doctors who administer it get paid; the complexity of delivering a radiation treatment -- issues that are related to efficiency, rather than effectiveness).

It's too bad RIT is not used more often, given its effectiveness. I keep looking for new research that might be the incentive to say, "Damn to efficiency issues -- let's use it!" Maybe we'll get lucky with this ASH research.

Researchers from the U.S. wanted to see how well Zevalin worked after B-R for Follicular Lymphoma. Previous studies have looked at Zevalin as a consolidation therapy after R-CHOP. (Consolidation therapy means it was given right after a frontline treatment: R-CHOP, then Zevalin to kind of clean up anything left over.) Given how effective B-R has been for Follicular Lymphoma, it seems worth trying Zevalin with it.

And it was indeed worth it.

B-R was given to 38 patients. 22 of them received a Complete Response. 15 had a partial response. That's a 97% Response Rate (37 out of 38). The other one had stable disease. Still pretty good. Bendamustine + Rituxan is pretty darn good on its own.

Of those 38 patients, 30 were able to receive Zevalin as consolidation. 25 of them finished with a Complete Response, and 4 remain in Partial Response. Of the 14 who stayed in the study who had a Partial Response after Bendamustine, 7 of them moved to a Complete Response immediately after Zevalin. Three more achieved a Complete Response within 16 months.

So the final tally: 83% of the patients achieved a Complete Response. 96% achieved either a Complete or Partial Response. And 71% who had a Partial Response after B-R achieved a Complete Response after Zevalin.

That's pretty dang good.

I think what really stands out for me is that these numbers are achieved with treatments that are already available. I know I've written before about how I think chemo is slowly on its way out, and maybe some day we can all deal with Follicular Lymphoma with easier targeted treatments that disrupt pathways and control the disease. But I've also said that there is a role for chemo, and this certainly shows that it's true. Until we have treatments like Inhibitors that have been proven to work, we have B-R and RIT.

And with numbers like these, it certainly seems like a combo worth considering.

Saturday, November 22, 2014

ASH: Stem Cell Transplants for Transformed Follicular Lymphoma?

More from the ASH preview: "Is Stem Cell Transplantation for Transformed Follicular Lymphoma Required in the Rituximab Era?"

As most of us know, Follicular Lymphoma sometimes transforms from a slow-growing indolent disease into a more aggressive lymphoma (often Diffuse Large B Cell). This happens to about 3% of FL patients every year, and the prognosis isn't good.

However, researchers from Royal Marsden Hospital in London say that much of what we know about Transformed Follicular Lymphoma comes from the pre-Rituxan Era, and doesn't consider the full effects of Rituxan on the disease. For example, in evaluating Transformed FL, patients who have had Rituxan Maintenance are often excluded from clinical trials. So they want to know what role Rituxan might play in Transformed FL, and whether or not Stem Cell Transplants (an aggressive treatment for an aggressive disease) are really necessary.

The researchers did a retrospective study, looking at records from Follicular Lymphoma patients from the past (2003 to 2013) who had transformed. They found 56 patients who fit the criteria.

The median time from diagnosis to transformation was just over 5 years. Of the 56 patients, 4 received an autologous Stem Cell Transplant (where stem cells come from the patient) and 2 received an allogeneic transplant, where a matched donor provides the stem cells.  50 patients received chemotherapy + Rituxan. Of those patients, 38 received R-CHOP, 13 recieved a different cho + Rituxan, and 9 received Involved Field Radiation Therapy (IFRT). 8 received Rituxan Maintenance after their post-transformation treatment. (There's some overlap with those numbers involving the IFRT and R-M.)

As for how well they did after treatment, measured by Overall Survival (OS) and Progression-Free Survival (PFS):
The R + chemo patients had a 2 year OS of 84.5% and PFS of 70.9%, and 5 year OS of 58.7% and PFS of 49.3%.
The R-CHOP patients had a 2 year OS of 89% and PFS of 76%, and 5 year OS of 59.5% and PFS of 51.7%.

But the patients who had R-Maintenance after their post-transplant treatment? They had a 2 year OS and PFS of 100%.

The researchers' conclusion: even the R-CHOP numbers are better than the numbers reported for Stem Cell Transplants, but the R-Maintenance numbers are clearly superior. They call for a closer look at using Rituxan Maintenance after treatments for patients who have transformed.

They are also very clear that their numbers are very small -- only 8 patients, and only after 2 years (not 5, as with the other treatments). So while it's very hopeful, it is a very small sample.

Transformation is a fear for many of us (if not all of us), and it's good to know there is another option being considered -- a fairly easy one that we already know something about.

Wednesday, November 19, 2014

ASH: Survival After One Year in Follicular Lymphoma

Interesting research from ASH on Overall Survival, one year after diagnosis: If things are quiet after one year, you're in pretty good shape.

Researchers wanted to know how important 12 Month Event Free Survival (EFS12) was in predicting Overall Survival (OS). In other words, if a Follicular Lymphoma patient went 12 months from diagnosis without needing treatment, having the disease behave more aggressively, or relapsing, would that be an indication that they had a better chance at longer Overall Survival? The quick answer is, yes, is does indicate that.

The researchers (from the Mayo Clinic and the University of Iowa) looked at 936 FL patients treated between 2002 and 2010, and then at another 153 from Lyon, France. They looked only at patients with grade 1, 2, or 3a Follicular Lymphoma -- no one with B symptoms, transformed lymphoma, or DLBCL. (That's important -- these tend to be the least aggressive stages of Follicular Lymphoma, though about 23% had other factors that made them "high risk" on a FLIPI scale.)

The results: Overall, patients with Follicular Lymphoma had a lower Overall Survival than the general population, no matter what stage they were diagnosed at. But patients who had an Event (progression of disease, relapse, need for treatment) within 12 months after diagnosis had a much lower Overall Survival.

This study is pretty interesting, but it requires a whole bunch of comments:

First, in a way, it isn't surprising: No events in 12 months indicates a fairly slow-growing variety of Follicular Lymphoma. For patients who maintain that slow growth (and I include myself), improved OS just makes sense. Assuming that slow growth stays.

Second, not everyone maintains that slow growth. As much as I'd love to think that things will always stay this way, I also know that there's no indication that slow growth at first means slow growth forever. Something like Transformation is unpredictable. It happens to people with more aggressive FL, and it happens to people who have gone years without treatment.

I think that's important to remember. Don't get cocky, Indolent Lymphoma People.

Third, this research looks at people who were diagnosed, in some cases, over 10 years ago. The world of Follicular Lymphoma is changing. The stats look at patients that were mostly treated with chemo + Rituxan, straight Rituxan, or Watch and Wait. Any of those approaches might be mostly off the table in a few years, given the pretty rapid development of targeted therapies like various inhibitors. There's the chance that those treatments change the game in huge ways, and that they halt the kind of aggressive disease growth that this research assumes is happening. No guarantees there, either, but it's worth remembering.

Fourth -- and maybe this is important enough that it should have been First -- statistics are numbers, not people. Particularly with such an unpredictable disease as Follicular Lymphoma, an Event within 12 months ultimately means nothing for an individual. This research describes trends, not guarantees. And they are historical trends at that -- stuff that happened to other people in the past.

We always look to what happened in the past, I know, when we're trying to predict the future. And really, that's mostly we have to go on. But this is a good reminder to keep the focus on what each of us has to deal with now, what is available to us now. No sense in worrying over what happened to someone else 10 years ago (or bragging about it, either.)

Sunday, November 16, 2014

ASH: Ibrutinib Not So Effective for Follicular Lymphoma?

As I promised, I've been trying to make my way through the abstracts for the annual meeting of the American Society for Hematology (ASH). Lots of good stuff comes out at this meeting. Not necessarily stuff that can be used immediately, but good stuff to keep an eye on.

The first one I want to look at (kind of briefly, I'm afraid) is "Ibrutinib Monotherapy in Relapsed/Refractory Follicular Lymphoma (FL): Preliminary Results of a Phase 2 Consortium (P2C) Trial." It has some not-so-good news.

As the title suggests, this one reports the results of a phase 2 trial on Ibrutinib, a BTK inhibitor that has been approved for use in Mantle Cell Lymphoma and CLL. As a BTK inhibitor, Ibrutinib targets a particular enzyme that is necessary for a cell to function properly. In this case, it's a cancer cell. Inhibiting it, or blocking it from doing its job, means keeping the cancer cell from living.

The trial looked at 40 Follicular Lymphoma patients who had already had at least one chemotherapy treatment, and who were need of another treatment of some kind. (The link will take you a breakdown of age, gender, and previous treatments, if you're interested.)

The Overall Response Rate was 30%, but 65% showed some reduction in tumor size. Interestingly, only 2 out of 18 patients who were Rituxan-refractory (that is, Rituxan stopped working for them) showed a response, while 8 out of 19 who were still Rituxan-sensitive showed a response, as did 2/3 of patients who had never had Rituxan before.

So, overall, the numbers aren't great. Their conclusion says, "Single agent ibrutinib is well tolerated with a modest ORR in relapsed/refractory FL at this early assessment. Continued follow-up is warranted to capture late responders and to establish response duration.  Ibrutinib appears less active in FL than in MCL and CLL. Early PET scans (C1D8) do not reliably predict for response."

But I think there is some room in there for hope. The Rituxan connection seems like the best place to look, with some reason to think that straight Ibrutinib might not be so effective, but a combination with Rituxan might work better. (That seems to be a trend -- targeting multiple pathways with multiple agents, recognizing that sneaky cancer can find a way around just one.)

I'm also hopeful that, as they suggest, a longer follow-up might show some better results. This one was pretty quick -- about 6 months. They raise the possibility that Ibritunib might work over the long term.

So I wouldn't count out Ibrutinib as a treatment for Follicular Lymphoma just yet.  More to come, I'm sure.

Wednesday, November 12, 2014

ASH Abstracts 2014!

It's Blood Cancer Christmas Time again!

OK, that's a little sick, but when I see that the abstracts for the annual conference for the American Society of Hematology are available, I feel like a little kid on Christmas morning. The ASH conference is where some of the more cutting-edge research on blood cancers is presented every year. It's not necessarily research that can be put into practice immediately. In fact, it's more likely to be the first time that promising research gets presented to other experts in the field. But it's also at a stage where researchers are excited about sharing it with the world. So even if it isn't a big ol' stuffed Teddy Bear under the Cancer Christmas Tree, it's certainly a letter to Santa with all of the things we hope we'll get this year.

You can find the abstracts related to Follicular Lymphoma here. There are 191 of them, which is more than last year.

I've only done a quick scan of them, but it looks like maybe a few new focused treatments are being tested, there's some further testing of some established treatments, and a few surprises here and there. My plan is to look at and comment on some of these over the next few weeks -- the ones that excite me most.

I'll say it now, and say it again as I review things -- a lot of the stuff presented at ASH is in very early stages. It's stuff to keep an eye on for the (hopefully near) future, not necessarily stuff to ask your oncologist about when the subject of your next treatment comes up. But we can be hopeful,and excited about it anyway.

Stay tuned.

Monday, November 10, 2014


This is my 1000th post to Lympho Bob.

I've seen it coming for a couple of months, and I've kind of had it in the back of my mind that I should do something special for it. I thought maybe it could match up with Thanksgiving, but the timing wasn't right. Would have been nice to be thankful in the 1000th post.

But, really, I am thankful, and I don't need a federal holiday to do it.

I'm thankful to all of you who read and comment and encourage me to keep writing.

If you've been reading for a while, or if you read some of the posts from the beginning, you know why I started this blog. Like so many of you, when I was diagnosed, I had no idea what I was dealing with. I heard CANCER and assumed the worst. Even for a few months, I still didn't quite grasp what an indolent cancer was, and why watching-and-waiting made sense, and what it all meant.

When I started, the blog became a way of letting people know what was happening. My wife and I know from experience, when someone we know and care about is sick, sometimes we're in a position to say, "How is it going? How are you feeling?" But we also know that sometimes, there are people that you care about, but that you aren't close enough to that you can call anytime and ask how they're doing.

So we decided that I would start this blog. It would be a way for people to know what was going on without wondering, "Is it OK if I call?" or hearing something from someone else who might have heard something about how I was doing and not getting the whole story. Basically, the blog would be a place for people to keep up without having to ask.

And it worked that way for a while. Friends and family visited regularly, and checked in on me, and made comments. And after a while, my doctor visits weren't so frequent, and I ran out of things to say about my lymphoma. And fewer of my friends and family read and commented.

Eventually, it became clear that I probably wasn't going to die any time soon, at least not from my indolent Follicular Lymphoma.

And eventually, my family and friends found other ways to gather together online. Which was fine. I was happy for the reason.

And every now and then, I'd get a comment from someone with Follicular Lymphoma who had somehow found the blog and who appreciated what they read. That was always nice.

And one time, someone who ran social media for a cancer drug company (I don't remember which one) started posting links to my posts on the company Facebook page and Twitter feed. That was pretty cool.

And then, somehow, more people found the blog. And I started to hear from more and more Follicular Lymphoma patients that they enjoyed reading what I'd written. And that was very cool.

Writers love to be read, and when I write on this blog, I always have readers in mind. But in the end, I write this for myself. If all of you went away (not that I want you to), I'd still keep writing. The blog gives me incentive to keep learning about my disease and what's being done to make it go away. I won't stop doing that -- I'll always be a Cancer Nerd. And every now and then, the blog is a place to express a frustration, or work through an idea. I won't stop doing that, either.

I don't know if I could have ever imagined, when I was first diagnosed, that the blog would last as long as it has, or that it would become what it has become. But I'm glad it has.

So I thank you all for reading. I promise I will continue to do my best to write about things that matter to Follicular Lymphoma patients, and I will do it as clearly and accurately as I can.

Expect another thousand posts -- at least.

Thursday, November 6, 2014

Vaccines for Follicular Lymphoma

I've been swamped lately, folks. It's one of those busy times of the year at work, and I took on a project that  is taking way more time than I expected. Not to mention my oldest is applying to colleges now, and that's taking time and energy from all of us. I haven't even had time to respond to your comments, let alone write full posts. Ugh.

So here's a quickie so you know I'm still around:

A fast video from Targeted Oncology. Dr. Joshua Brody, Director of the Lymphoma Immunotherapy Program at Mt. Sinai Hospital, gives a quick take on Vaccines for Follicular Lymphoma. He points out that previous attempts at vaccines haven't been successful because they have targeted one Idiotype. Newer attempts take a more "holistic" approach, and target any antigens related to cancer cells.

The video is only about a minute long, but it gets at the pint that we shouldn't give up on vaccines -- they may be an important part of immunotherapy for us. (As I have mentioned before, the lymphoma specialist I saw soon after I was diagnosed was very excited about vaccines, and so they have always fascinated me.)

If you want to read a little more about Dr. Brody's work, check out another piece from Targeted Oncology, describing the results of a Phase I/II trial run by Dr. Brody, involving another immunotherapy treatment. To be honest, I read it but didn't look into it, so I while I get the overall idea of the approach, I don't know much about the parts.

But it's something else to be hopeful about.

(I'll get to those comments soon, I hope.....)

Saturday, November 1, 2014

The "Fab Five" for Lymphoma

A few weeks ago, Medscape featured a video discussing some highlights from the 2014 Congress of the European Society for Medical Oncology (ESMO) in Madrid. The speaker is Dr. Martin Dreyling, professor of medicine at the University of Munich Hospital in Germany, and his focus is on recent developments in lymphoma.

The link will bring you to the video (it's about 12 minutes long) and a transcript (if you'd rather read his comments than watch).

In the video, Dr. Dreyling discusses the "Fab Five" (playing on the nickname for The Beatles, who were very popular in Germany before they came to the U.S.). But Dr. Dreyling is referring to the five compounds that are offering possible ways of avoiding chemotherapy for lymphoma patients (the unofficial theme of the ESMO conference). The Fab Five are: Bortezomib (Velcade), Ibrutinib, Idelalisib, Lenalidomide (Revlimid), and Temsirolimus (another kinase inhibitor, used for kidney cancer, now being tested for Mantle Cell Lymphoma). The Fabs, he says, "will help us."

Dr. Dreyling focuses on developments related to several specific lymphomas, including Follicular Lymphoma.He calls this section "Defying the Status Quo," by which he means moving beyond the current preferred approach in Europe, which is chemotherapy + Rituxan. Research shows that Follicular Lymphoma is sensitive to "targeted therapy," rather than the shotgun approach of chemotherapy. Idelalisib, for example, has been very effective (with over 50% response rates) for patients who have had chemo + Rituxan, but for whom that combination no longer works.

As an example of an approach that is used as a first-line treatment, he points to the RELEVANCE study, which involves Rituxan + Revlimid (R + R). The combination seems to work better than the two treatments given separately, and the RELEVANCE study involves over 1000 patients, very large even for a phase III trial. The response has been very good, and we'll know soon if it is as good, over time, as chemo + Rituxan.

The challenge for the next few years, as he sees it, will be to determine which of the Fabe Five compounds (and others like them) are working, but also what kind of markers will be found that will help identify which treatments will work best with which patients, and which will work best for all patients.

So while this wasn't a review of a lot of particular studies, I did find it valuable to see what is going on in Europe. I think they are dealing with a lot of the same challenges that we are dealing with in the U.S., and having some of the same successes.

And it's always fun to watch a lymphoma expert express optimism fore the future.