500

'Tis indeed a day for celebration: This is my 500th posting to Lympho Bob.

I've had the opportunity recently to go through some old postings, beginning with the very first one. It's amazing how, over the course of almost 3 and a half years, the blog has changed. My attitude (about NHL) has changed, too.

Lympho Bob started out as a way of keeping family and friends informed about what was going on with my health. Especially in those early days, everything was kind of crazy. So many unanswered questions, so little information about me to be able to share, and so little information about my disease. So much worry.  So much concern about my day-to-day health. So many comments and well wishes from everyone. It's hard to believe today that I was so worried every day back then. I knew so little in those days, and the blog really reflects it.

People in my support group say it takes about six months to get used to the idea of Watching and Waiting, and I think that's accurate. After about six months, my own feelings about having Follicular NHL began to change. You can see it in the blog. I was much less concerned with what was happening to me every day. I was much more interested in the future. And I started to get interested in the future of other people, too -- and the research nerd in me came out.  The blog started changing, and it became not just a place for family and friends to get some hope when I got excited about new treatments in the news. It became a place for other people to find out about fNHL, too.

Lympho Bob is still very much about family and friends who care about me -- the videos of my kids playing in bands is a testament to that. But it fascinates me to see how many people read the blog -- people from all over the country, people from other countries, people who come to it because an entry has been linked on someone else's Facebook page or Twitter feed.

This blog has been extremely helpful for me. It's given me an opportunity to learn more about the disease, to learn a little more about myself, to vent (though there's a still a lot that I keep to myself), to share, to hear back from others. It's very cool to see how things have evolved. If it's been helpful for others, too, then that's been a really wonderful bonus.

And as much as the blog has helped me as a cancer patient, I have to acknowledge that it's helped with my career, too. After I was diagnosed, things changed for me. I slowly began to take on the attitude that, given how secure I am in my job, I don't have to waste time or energy on dealing with things that I just don't care about. I'm lucky to have a job that lets me take such an attitude. A few months after my diagnosis, I did a serious career re-evaluation, and the blog played a big part in that, as I experienced firsthand the things that social media can do, the problems it can cause, and the way it related to my job. I think, in the last two years, I've had more fun at my job than I'd had since I started. And that's happened at a time when lots of my co-workers are starting to burn out. One more thing to be thankful for, Lympho Bob blog.

Social media can be a very useful thing. Blogs, social networks, video channels, wikis, microblogs -- they allow people to connect in ways that weren't imaginable even five years ago. They provide information that was unobtainable before. If I've been able to add to someone else's knowledge, even a little, then that makes me happy. But if there's one thing I've learned in the three and a half years I've had cancer -- the three and a half years I've been writing this blog -- it is this:

Information is the lifeblood of a cancer patient. No one should keep it from us. Much of the information you can find online is comforting. Much of it is scary. But even the scary stuff needs to be made available. We cancer pateints can choose what to cling to, what to ignore, what to ask more about. But it mustn't be kept away. There's just too much good stuff out there, too many opportunities to connect with people who can help, in so many ways. Bad enough that people can't get things that will make them better. It's a tragedy that people don't even know that those things exist.
Thanks for reading Lympho Bob. It's been a fun three and a half years. I look forward to another 500 posts.

(And thanks to Stephan Pastis for not suing me for using this Pearls Before Swine strip. It's my kids' favorite comic strip --  they fight over the Sunday paper to see who gets to read it first. And it's certainly given me more than one laugh to start off my day. Here's your plug, Pastis.)

ASCO: Revlimid

OK, this is what I think will end up being the Big News from ASCO this year for Follicular NHL, and it actually involves a fairly small number of fNHL patients.

I'm hoping you'll be able to see this link, though you may need a Facebook account to be able to see it. It's from a Facebook site called Lymphoma Resources, and the post is called "ASCO11: Lenalidomide-Containing Front Line Regimens for DLBCL and Indolent Lymphoma Show Promising Results." Lymphoma Resources is written by Dr. Anas Younes, a lymphoma expert at M.D. Anderson.

In case you can't see Younes' summary from ASCO, I'll summarize his summary:


Lenalidomide, also known as Revlimid, is a newer treatment. It seems to work in several ways, most importantly by messing with the microenvironment of the cancer cells -- the areas surrounding the cells, and which the cell needs to grow -- as well as on the cells themselves. It's reasonably effective when used on its own; it has about a 27% response rate for fNHL. However, because it effects the immune system, it seems to be even more effective when used with monoclonal antibodies like Rituxan.

One presentation at ASCO reported that Lenalidomide combined with Rituxan was very effective as a first-line treatment, with 87% of the 41 fNHL patients achieving a response, and most of them achieving a complete response. The overall response rate is similar to patients receiving R-CHOP and R-Bendamustine, though the the complete responses are higher than for those two treatments.

In a second study, researchers combined Lenalidomide with R-CHOP in 30 patients, some with fNHL and some with Diffuse Large B Cell Lymphoma, an aggressive type. This combination yielded a 100% response rate, with 83% achieving a complete response.

As I said, I think Revlimid is going to be the Big News from this year. I'm guessing there will be further trials that combine it with other agents, and we may begin to see more and better results in the next few years. Combinations like these are likely to be where we get the best results; it seems to me that the more we understand just how comples cancer is, the more likely it is that we'll need to attack it in multiple ways in order to beat it.

ASCO Research

As promised, I wanted to review some of the Follicular NHL-related research from last week's ASCO conference. There are a few things creating some buzz around the web, plus a few things that aren't so buzzy, but that I found kind of interesting, given my own situation.

One of the less-buzzy things is a session called "Second-line therapy in follicular lymphoma in the United States: Report of NLCS observational study." Clicking on that link will take you to the ASCO web site and the official abstract or summary of the research. I'll try to interpret here, and say why I think it's important:

The NLCS is the National LymphoCare Study, a large project that looks back at the treatment history of a whole bunch of lymphoma patients. So the study isn't offering anything like new treatments; it's looking back at what has happened in the recent past and figuring out significant patterns. For this study, they wanted to see if there were trends for second-line therapies (what they call Rx2 in the abstract). We know that there is very little consensus now for first-line treatment. In other words, fNHL patients might get any one of about 5 or 6 treatments the first time they need treatment: maybe watch-and-wait; maybe straight Rituxan; maybe a chemo like R-CHOP, or R-CVP, or Fludarabine, or Bendamustine. Or maybe Bexxar or Zevalin. And that doesn't include the choices from clinical trials that haven't been approved yet.

But what happens when the inevitable relapse comes around? That's what the study looks at.

There were 2736 patientss enrolled in the study. 1841 were still being followed after just under 5 years. 991 of them had received a second round of treatment; about 850 of them had started that second round within a year (or less) after finishing the first round. [As a side note: this is good news for me. I'm on that group that's gone over a year. Knock on whatever piece of wood is nearby for me.]

Second-line treatments are still all over the place; like first-line, there's no consensus on what the best approach should be. (Which makes sense: having so many different first choices eliminates lots of second choices.) But, as they note, some interesting patterns were discovered.

1) Straight Rituxan is used more often as a second-line ttreatment than as a first-line treatment. I find that fascinating, given that I had Rituxan as my first-line. I think lots of oncologists (and no doubt lots of patients) want to hit the lymphoma hard the first time. That approach certainly has some merit. For me, management was key -- my lifestyle hadn't changed yet, and I was happy with that continuing. It's unclear whether Rituxan maintenance is included in this statistic, but that would certainly explain a lot.

2) Rituxan is used in combination with chemotherapy very frequently in second-line treatment. The authors seem to think this is surprising because if there is a short time before the second treatment, this would "represent rituximab resistance by common definitions." I'm no oncologist, but I don't think Rituxan in combination works that way. Failure of the chemo doesn't necessarily mean failure of the Rituxan, if it's job in the combo is to support the chemo, no replace it. Interesting trend, but an odd interpretation.

3) "Most pts remain anthracycline naïve": CHOP, which contains anthracycline, is being used less frequently in both first- and second-line treatments. Not surprising. And it will become even less common now that Bendamustine is getting NCCN recommendation as a first-line therapy (not that everyone listens to those recommendations, obviously). Anthracycline, with its potentially heart-damaging side effects, is going to be reserved for fNHL transformations. So sayeth I, the English teacher who reads a lot and makes good guesses.

The authors think this is all especially significant because it gives a better picture of what they may see when they recruit for clinical trials. In other words, they'll know they have a larger pool of people who, for example, haven't yet had CHOP.

I think it will have some significance, too, in the way oncologists consider certain  treatments. Maybe there will indeed be less CHOP and more straight Rituxan (or other monoclonal antibodies) as time goes on, as oncologists see that good results can be achieved.

For me, it's just nice to see what other people are doing, and how my own plans compare.

More ASCO analysis soon.

Mike's PMC Ride

I talked to my brother today. His training rides are getting a little longer every week, and he's going to be ready for the Pan-Mass Challenge in August.

The PMC is a very long bike ride that raises money for cancer research at Dana-Farber in Boston. In 30 years, the riders have raised over $270 million. A lot of that money goes to research on NHL, and all the money raised goes straight to cancer research.

Won't you consider sponsoring Mike? It's avery worthy cause, and very easy to give.

Read the letter Mike sent out earlier this week, and consider making a donation:


The warm weather is finally here, and training season is in full swing.

On August 6th and 7th I will participate for the fourth year in the 32nd Pan-Massachusetts Challenge (PMC) by raising $5,000 and cycling 163 miles on the Wellesley to Provincetown route. Donations to my PMC ride will help cancer patients by supporting life-saving cancer research and treatment at the Dana-Farber Cancer Institute (DFCI) in Boston, Massachusetts.

The PMC is an annual bike-a-thon that raises more money for charity than any other single event in the country. In 2010, the PMC raised $30 million. The organization was founded in 1980 and it has raised over $300 million for cancer research and treatment at the DFCI through its Jimmy Fund. The PMC is a model of fundraising efficiency. Since 2007, the PMC donated 100 percent of every rider-raised dollar directly to the cause. The PMC generates half of the Jimmy Fund's annual revenue and it is Dana-Farber’s single largest contributor. DFCI has been ranked as the best cancer hospital in New England and fifth best in the nation by U.S. News and World Reports.

I was moved to ride my first PMC after seeing too many friends and relatives stricken by cancer in its many forms. For most, the diagnosis comes without warning. We go along in our lives quite comfortably, and suddenly our lives have changed in a moment.

Funds raised by the PMC support the efforts of more than 3,000 faculty and staff members as they make advancements in cancer care and research. The PMC’s annual donations to the DFCI have resulted in:


• Increased survival rates of pediatric cancers.


• Decreased incidence rates for colorectal cancers and lung & bronchus cancers.


• Providing financial assistance to patients and their families in need.


• Funding investigator-led clinical trials.

Riding the PMC for three years now has been an amazing experience. Every year, I feel the support of the staff, the volunteers, all the other riders and my sponsors. I ride because I can. And because riding the PMC is a positive effort that combines with the positive efforts of thousands of other riders and creates something much bigger than all of us. In the face of a disease that leaves me feeling so helpless, riding the PMC gives me hope.

Please make a difference and support my PMC ride. Your donation is 100% deductible.

HOW TO DONATE:


Credit Card: go to http://www.pmc.org/egifts/MM0386

Matching Gifts: The Human Resource Department at your company can provide information on your company’s matching gift policy.

Many thanks in advance for joining me in this challenge. I do believe that together we can make a difference. I will be in touch after PMC weekend to share my PMC weekend experience.

Mike

The Genomic Era

The American Society of Clinical Oncology (ASCO)'s annual conference has been taking place this week in Chicago. It's a very big deal: about 4000 presentations from cancer researchers will be given, and clinicians (the ones that deal with patients) will learn about some of the latest advances in cancer treatment. It's always an exciting time for research nerds like me.

I've been following the news all week, and for the week or so before that, reading about research results for different treatments that are in the pipeline. They give me something to look forward to. A couple of years ago, the Big News for NHL was about Zevalin, the radioimmunotherapy treatment. Last year, everyone was excited about Bendamustine. This year, the Big News in fNHL is....well, I'll be giving some updates over the next few days. You'll just have to keep reading.

But I will share a post from Dr. Len's Cancer Blog, written by Dr. Leonard Lichtenfeld, from the American Cancer Society, who is attending ASCO this week. The blog post is called "The Genomic Era: We Have Reached A New Tipping Point In Cancer Research And Treatment." Dr. Len discusses the dominant theme in this year's ASCO conference: the use of genome testing to detect cancer and to further research on potential treatments. The really Big News from the conference has to do with Melanoma, a particularly dangerous cancer: genome testing has identified a marker in half of patients; treatments can now be targeted to that marker.

I liked Dr. Len's summary of the "eras" of cancer treatment:

"In the past, we have had the chemotherapy era, where we were able to put combinations of toxic drugs together to cure and control some forms of cancer. We have had the adjuvant era, when we learned that using chemotherapy could delay the progression of cancer after primary treatment, usually surgery. We have most recently had the targeted therapy era, when we learned that drugs targeted at genetic changes in cancer cells could impact survival, sometimes substantially. We wish we had a vaccine era, although there have been some practical successes and hopeful research that continues in that arena. And now we have the genomic era."

What I like most about the description is how fast it has moved. We aren't out of the "chemotherapy era," really; there are lots of very effective chemo treatments for lots of cancers, including NHL (Bendamustine is a chemotherapy). But we're also dealing with treatments that add to chemotherapy, or make it better, or maybe replace it. As Dr. Len says, we're at a "tipping point" now, where maybe a whole new approach to treating cancer will happen soon.

It's all very exciting. Over the next few days, I'll share what I've learned about new NHL treatments.

Survivors Day

Today is National Cancer Survivors Day.

On its website, The National Cancer Survivors Day Foundation asks the question, Who is a Cancer Survivor? This is their answer:

The National Cancer Survivors Day Foundation defines a "survivor" as anyone living with a history of cancer – from the moment of diagnosis through the remainder of life. National Cancer Survivors Day affords your community an opportunity to demonstrate that it has an active, productive cancer survivor population.

So that makes me, and anyone else who has received The Diagnosis, a survivor.

A couple of months ago, I wrote about a column that Lymphoma Rock Star Betsy de Parry had written about the term "survivor." She doesn't like it -- she thinks sometimes it makes cancer the defining thing about her, and she knows there is so much more to her than that. I agree with her, at least sometimes. But I also know that there are days when "survivor" is a badge of honor.

The LiveStrong Foundation and Stand Up 2 Cancer are asking survivors to "donate their Facebook status" for the day by sending a  message to cancer by saying something like "I am a survivor. Cancer, you do not define me."

It's kind of nice to think about what you'd want to say to cancer. For some survivors, I'm sure it's a hindsight message -- "Cancer, I kicked your ass!" And for others of us who are still in the fight, the message will be different.

Survivors, what will your message be?

Vaccine News

M.D. Anderson Cancer Center issued a press release a couple of days ago touting the results of a phase III clinical trial for a follicular lymphoma vaccine. They are (justifiably) calling it a success: it added about 14 months to pateints' remissions before they relapsed.

Fourteen months might seem like not a long time, but as the lead researcher pointed out, most new treatments are approved for use only because they add two or three months. So, when you look at the big picture, this is a big deal.

I've been fascinated by lymphoma vaccines for a while; the specialist I saw just after I was diagnosed told me about them, very excitedly. In the almost three and a half years since then, vaccine studies have produced some mixed results. They sound great in theory: give the patient some of his own lymphoma cells that have been manipulated in a way that makes them override whatever it is that makes the cancer cells fool the immune system. It seems, though, like every failure reveals something new that will help the next attempt work even better.

The vaccine described in the press release was developed by a team led by Dr. Larry Kwak; he was named one of Time Magazine's 100 most influential people last year. As he explains, these vaccines must be personalized, since each patient's lymphoma will be just a little different. Which may explain why some patients in the study with a certain protein marker achieved even better results.

The method Kwak and his team used might even be adapted for other types of cancer.

Since this is a phase III study, it is likely that the vaccine will be put through for approved use at some point soon. The problem, of course, will be price: because each individual patient needs to get his own personalized vaccine made, it takes a lot of time, and costs a lot of money. Maybe that will be another next step: figuring out how to do it not only better, but faster and cheaper, too.