Wednesday, June 29, 2011

Vitamin D

As you might remember, my own Vitamin D levels are astoundingly good. I've been popping D for over a year (and forcing my wife to do the same -- her levels are even better than mine). I've resisted discussing Vitamin D in Lympho Bob because it's kind of controversial, and I don't want to mislead anyone into thinking it's some kind of cure-all.

But last week, Dr. Rebecca Elstrom posted a short piece on the blog New Developments in Lymphoma, which is put out by the Lymphoma Program at Cornell Med. Elstrom does a nice job of explaining the implications of Vitamin D for Lymphoma patients, in a post called, appropriately enough, "Vitamin D and Lymphoma."

Basically, there's some promise in the idea that there might be a link between Vitamin D and lymphoma. This is based on research from last year that found that some patients with lymphoma had a lower survival rate if their D levels were low. Elstrom is clear in pointing out that the low D may not be the cause of the lower survival rate; it might be, for instance, that those patients had other problems that caused both their lymphoma issues and their low D.

But it's certainly an intriguing connection, especially given all of the other news that's come out about the importance of Vitamin D for other health issues. On the other hand, those who decide what our recommended daily allowance should be are not in a hurry to raise that umber. But since my own doctor seems convinced that my levels should have been higher than they were last year, and is pleased that they're up now, I'm going to keep up with the D. And, of course, keep up with research that looks into the D/Cancer connection.

Monday, June 27, 2011

Blog on Bad Doctor Visit

I'm following a really interesting exchange that's playing out on a blog and a Facebook page. The blog entry that prompted it is from Dr. Wendy Harpham; I've linked to her blog, On Healthy Survivorship, in the past. I think Dr. Harpham is fantastic -- she's a cancer survivor herself, so she has a real understanding of what goes on from both sides of a doctor-patient relationship, and her blog is a great resource for the emotional side of survivorship.

A few days ago, she posted a letter from a reader. You can read the post here, but the essence of it is that the patient, who has been dealing with cancer for 10 years, needs to choose between two treatments. She is a well-informed patient, and thinks she should go with one of the two. Her doctor thinks she should go with the other. During the visit to discuss the choice, the doctor cut her off, and the patient raised her voice. Now the patient thinks she didn't handle it well, and is wondering what to do.

Dr. Harpham responded. Again, read the original here. Dr. Harpham says
After acknowledging her pain -- "I’m sorry this happened." -- I encouraged her to:

1.Forgive herself: "Cut yourself a break. You've been under a lot of stress from your illness. The longer you question or blame yourself for the visit, the longer you are diverting energy away from efforts that might help."
2.Focus on the task at hand: "How can you move beyond it and continue to get good care?"
3.Make a decision: "Do you want to continue with this doctor?"
4.If the patient's answer is yes, consider options for repairing the rift: "You can send a note, schedule a visit (although you may need to work out something with the front office about payment), or talk with your doctor’s nurse about your regret, frustrations and concerns."

Now, what comes next in my reading is a reponse from Liz, who runs the Facebook page for Patients Against Lymphoma, the folks who put together the excellent web site. Liz is herself a lymphoma survivor. She posted a response to Dr. Harpham on the PAL Facebook page. If you can't read it there, here it is (long, but very thought-provoking):
1. Forgive herself? The patient might be somewhat embarrassed for losing her equanimity, but she didn't do anything wrong considering the stakes. In the time allowed for the appointment, the doctor was either unclear about the reasons he did not like the treatment for which the patient had a preference, or was perhaps uncomfortably less well informed than the patient about the other option --it wouldn't be the first time. In this day of Google Scholar and non-profit cancer organizations' excellent patient education efforts, there are some very well informed patients who may actually have some nugget of information a general oncologist might not be aware of. It was incumbent upon the doctor to hear the patient out (either then or later) and address both the patient's medical concerns and her legitimate need to be sure every treatment option is being thoroughly considered.

In my opinion, the professional is the one who failed in this interchange, not the patient. Instead of cutting off the patient's line of inquiry, the doctor should have calmly suggested several things: a second opinion with an expert in the particular cancer, perhaps arranging to speak with the patient later for a more in depth discussion at a more convenient time; and where is the review of the appropriate clinical trials, which should be a part of every treatment option evaluation? Being "right" is less important than openly exploring all options for a relapsed patient.

2. Vital here is a second opinion from another oncologist, a leading expert in the particular type of cancer, so that the discussion is between "authorities" and no rank pulling can obscure the real question at hand: what is the best treatment option for this patient? A best treatment option is often a matter of opinion involving conflicting schools of thought and incomplete data. Regardless, the choice should reflect not only recent evidence and theory but also the individual patient's goals for treatment.

Following the rule of "always invoke a neutral authority" when at loggerheads, a patient can easily tell a doctor that they wish a second opinion. No offense should be taken as second opinions are routine. While a patient can express respect and how much they rely on the valued opinion of their primary oncologist, they can also say they need to be diligent before making so big a decision as the next step after relapse. Diligence requires a second opinion. You would do no less when buying a new car. Often a second evaluation of the biopsy slides and tissue by a pathologist expert in the particular cancer is in order as well.

PAL urges a second opinion in all cases, but it is crucial if there is any disagreement or doubt. I am at a loss why this was not suggested by Dr. Harpham. A patient should also ask for a review of all appropriate clinical trials, which can only usually be done by a specialist in their particular cancer, and perhaps even subtype of cancer. Another reason for a second opinion. In lymphoma, there are experts in Hodgkin's, experts in indolent lymphomas, specialists in high grade lymphomas, transplant specialists and the like. It can be dizzying and one of PAL's roles is in pointing patients toward lymphoma experts. The patient can ask their oncologist who they recognize as the leading specialists and researchers in their particular type of cancer. Then call those docs and request a second opinion consult, which can often be done via FedEx, email and phone calls without requiring a patient to travel to the expert. Insurance typically covers second opinions.

3. The patient was well within her rights to not only provide feedback about the inadequate response and unilateral termination of the discussion. Next time she can request that the appointment scheduler pencil in a longer consult time so there will adequate time to address communication and working relationship guidelines and to ask the doctor what opportunities he thinks he has to be more collaborative and communicative in future consultations. Try to get the first appointment in the morning. The doctor will be fresher and less stressed. In such a consult, the patient can clearly and politely state her expectations for their professional relationship --that is not only one of patient and doctor, but also one of a professional employed by a client.

The best tact to take is to open the discussion with a thank you, appreciation for ways your oncologist has helped you or gone out of their way. Be both specific and general in your praise. Next, acknowledge the pressures and stresses your oncologist may be experiencing. Showing understanding of another's needs paves the way for them to be more empathetic toward you. Make all this as succinct and to the point as possible. Time is valuable. Next, the patient can segue into a a brief apology for raising her voice or saying something inflammatory. But she should not, and you should never, be apologetic for the feelings and the situation that led to an outburst. This is not her problem alone to fix. If this patient feels that it is mainly her responsibility to repair the "rift", then a serious reflection on why she feels this unequal burden is needed, hopefully with a psychologist or support group facilitator familiar with the effects of cancer on a patient's needs. Of course, the patient wishes to be diplomatic and considerate but not at the expense of losing dignity or sacrificing a voice in her care. If she has any doubt that her doctor isn't concerned enough about healing any rift to apologize and recalibrate his own behavior, that is a sign that she needs a more compassionate oncologist.

Of course they didn't have problems before. The patient knew less, she is currently being more assertive, there's a conflict now and the stakes are higher with relapse. The real issue is whether there are apt to be more bumps in the road ahead. Is the doctor more willing to listen to the patient's input and respond fully. If not, seek a new doctor.

To be fair to the oncologist, might it just have been a bad moment and the doctor lacked time for the discussion or was unusually tired and stressed? If so, then the patient might request that doctor simply say so in future and schedule another time for the discussion -- after s/he has reviewed the medical literature presented by the patient. If the doctor doesn't offer his/her own apology at some point, then scary as it sounds, the patient should put oncologist shopping on her to-do list before the rising stress level creates more friction and things completely break down.

Doctors should be able to persuasively present their rationale for preferring one treatment option over another and simultaneously recognize that they may be wrong. Doctors are human and have been known to make errors of judgment, particularly in the constantly evolving area of oncology. The cornerstone of modern science is doubt. An honest physician-scientist knows that there can always be new information that can change outlook on care. The wise physician always leaves at least a little room for doubting his or her opinion and being open to new information regardless of the source. Patients don't lose respect for doctors who admit they are human and can't possibly keep up with all emerging data for all cancers. Patients lose respect for arrogant doctors who would rather look right than be right.

4. A very real fear for patients is that offending a doctor can risk incurring the doctor's wrath or resentment and result in less than optimal care and attention (on a subconscious level at least). This common and almost unavoidable anxiety, a kind of medical Stockholm syndrome, sometimes causes patients to retreat from standing up for themselves, to delay or avoid taking sensible steps such as seeking second opinions, or effectively voicing their thoughts and goals for their own treatment. This fear must be worked through, preferably with a therapist or hospital social worker experienced with cancer patients, so that a patient's health care team doesn't become dysfunctional by losing the full, empowered presence of a competent patient in choosing his or her own therapy. Whose life is it anyway?

~ Liz for PAL

Dr. Harpham has responded to the original patient's situation (not to Liz) a couple more times in her blog, and it's also thought-provoking.

I'm not going to take sides on this issue, given the respect that I have for both Dr. H and for Liz. But I will say that I believe strongly in a patient's need to get as much information as she feels she needs, on her own and from her doctor, and to seek out any source (including another doctor) that will give it to her.

It's always interesting to see the perspective of a doctor when it comes to dealing with patients. We don't always get it, and I know from speaking to doctors that it's not an easy job -- especially if you're dealing, quite literally, every day with matters of life and death.

I'll leave it at that, for you to ponder.

Saturday, June 25, 2011


I saw this posted to someone's Facebook page, and I thought it was worth sharing, even though it's old (from 2009) and for the "Young" (those in their 20's and 30's), because it's timeless and ageless.

It's from the site for the book Everything Changes, which is written for people who were diagnosed in their 20's and 30's. Early on after my diagnosis, I avoided sites and books like this -- bitter that being 40 and a half at diagnosis made me no longer a "young" person. I'm over the bitterness now.

The post is called "Your Advice to Someone Newly Diagnosed?", written by Kairol Rosenthal, author of Everything Changes and a young survivor. (It's actually a very good book, and she writes a very good blog, for cancer patients of all ages). In the post, Rosenthal says she often received advice that was "so off it made me want to stick my fingers in my ears and chant 'blah, blah, blah' like a three year old." She talks about interviewing a young woman whose advice for the newly diagnosed was:

"It’s just one day at a time. Remember to breathe. Be a little selfish and don’t feel guilty. Tell people how you feel and be open. Remember to tell people that you love them. Don’t play games, don’t be fake, don’t try to be tough all the time. If you need denial right now to get through, do it. If you need to cry and feel it every day, do that, too. You’re not alone, no matter how alone you feel, and you will feel alone, ’cause you feel like you’re the only one going through it. And we are, because we’re all different in our own way. But there are people out there that can kind of understand, and when you’re ready, they’ll be there for you."

The comments section at the end of the blog post offers more advice from survivors:

"Take someone with you to all appointments. Something about hearing the word 'cancer' shuts down your brain and you don’t hear what they say anymore. Having someone to take notes and remind you of what your questions are helps tremendously. (take someone who is somewhat versed in medicine and not an alarmist if possible….)"

"I learned quickly that I needed to be assertive about my care. I asked lots and lots of questions, I kept track of what they did, and when and why they did it. There were a couple of times that I corrected the nurses. It’s not that they do their job poorly, but everyone is fallible. Questions. Ask questions. Lots and lots of questions. It doesn’t matter if you annoy them — it’s your body and you deserve answers to all of your questions. (And if they’re good, they won’t be annoyed.)"

"I used the free services at the hospital: the counselor, the massage therapist, the music therapist. If you are at a hospital that offers any servies, take advantage of them."

"Feel free to drop the f-bomb on anyone that tries to say anything like 'You’re so lucky, now you can really appreciate life', 'All things happen for a reason' and/or 'God has a plan.' I seriously regret not telling a few more people off when they told me that."

All good advice, and not just for youngsters (however one defines "young"....OK, still a little bitter.....). The blog entry offers even more advice in the comments section. Worth taking a look.

Wednesday, June 22, 2011


I've been interested in new treatments for Follicular NHL almost since the day I was diagnosed. Especially after the initial shock wore off, and it became clear that I had some time, I really got into the research being done on fNHL. I find great hope in seeing what might be coming in the future, and I know that some people are reading because they feel the same way.

With that introduction, I want to make you aware of this: an article in Current Opinion in Hematology, published just a few days ago. The article is called "New Therapeutic Targets and Drugs in non-Hodgkin's Lymphoma," written by Ahmed Sawas, Catherine Diefenbach, and Owen O'Conner from the NYU Cancer Institute (and made available thanks to the wonderful people at Patients Against Lymphoma).

The article reviews some of the most research on NHL. It doesn't focus only on Follicular, and it doesn't present all research in the pipeline (that is, under development, before approval). The reason for this, as the authors say, is because there are so many treatments being developed that it would impossible to put them all in one article. (How's that for hopeful? Even if you don't read the rest of the article, it's worth it just to read that statement).

The article is very thick, written for other medical professionals, but it says some wonderful things about what's being developed.

Here's what stands out for me:

The authors make the point that the reason for the explosion in the number of potential treatments is because we now know so much more about the biology of lymphoma -- where it comes from (though not necessarily what causes it), how it works, what's important about its environment, how it differes from normal cells, etc. So as great as it is to have all of these treatments right now, we have to believe this is only the beginning. The way science works is that playing around with these treatments will inevitably lead to greater understanding of not just the treatments themselves, but also more about the way lymphoma works. That's going to happen. Expect even more potential treatments in the future.

As for the individual treatments and their classes discussed in the article, what stands out for me most is
Kinase pathway teatment called CAL-101. It's being tested on several types of NHL, including Follicular, and I'm familiar with it because several people in my support group are being treated with it (including one whose doctor gave her no hope after a two failed chemos and a failed bone marrow transplant, but who went for a second opinion, was told "There's always hope," and was put on CAL-101. She's been doing well for almost a year now). On top of all that, CAL-101 has a 62% Overall Response Rate, with the median not yet reached (which means it continues to help people in the study).

There's much more to the article, but that should give you a sense of why it's worth wading through. Lots more to look forward to.

Sunday, June 19, 2011

Happy Father's Day

A Happy Father's Day to all you dads, especially to my father and brother.

I've come across a ton of videos, photo galleries, and stories over the past week or so, that claim to "celebrate" fathers, but a lot of them actually just make fun of dads. We have our quirks, to be certain, but there has to be something beyong clownishness worth celebrating, don't you think?

Because the problem is, when dads are seen as clowns, then the every day stuff we do is seen as overly special. The comedian Louis C. K. gave an interview a few days ago that got some attention for other subject matter, but I was really struck by something he said about being a single dad and having joint custody of his kids. He has a TV show where he plays a single dad. In one episode, he attended a PTA meeting and a mom at the meeting says to him "Just by showing up, you're father of the year." In the interview, Louis commented on how that plays out in real life:

When I take my kids out for dinner or lunch, people smile at us. A waitress said to my kids the other day, "Isn't that nice that you're getting to have a little lunch with your daddy?" And I was insulted by it, because I'm like, I'm f-ing taking them to lunch, and then I'm taking them home, and then I'm feeding them and doing their homework with them and putting them to bed. She's like, Oh, this is special time with daddy. Well, no, this is boring time with daddy, the same as everything. If I do something for my kids, I get a medal, because most fathers don't. If a mother makes a tremendous effort for her kids and does incredible things, no one gives a s-t, because she's a mom, and that's what she's supposed to do. It's like giving a bus driver a medal for driving straight ahead. Nobody's interested. And that's really not fair, but it is the way it is.

I agree, it's not fair, to mothers or fathers, and that kind of thing happened to me all the time when the kids were younger. (Pople would say to me all the time, when I was with my kids, "Oh, you're babysitting today?" No, I'm taking care of my kids. Babysitters are 15 years old and get paid to do this.)

So my little Father's Day rant is my way of saying thanks to my father for being  around, when I was a kid, and now, and for teaching me to do the same. No medals necessary.

Happy Father's Day everyone.

Thursday, June 16, 2011


'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.)

Monday, June 13, 2011

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.

Saturday, June 11, 2011

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.

Thursday, June 9, 2011

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.


Credit Card: go to

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.


Tuesday, June 7, 2011

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.

Sunday, June 5, 2011

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?

Thursday, June 2, 2011

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.