Pay Me

Today is "Pay a Blogger Day," as declared by the web site Flattr.

Here's their description:
"Blogs are something that we read almost daily but how often do we step back and think about the time and effort that goes into writing an enjoyable, informative and entertaining post? Day after day, week after week, and keep the enthusiasm that writing brings the author? Pay a Blogger Day is our effort to put the bloggers in the spotlight to recognize the value they bring to the internet."

So, basically, I've been providing all kinds of great information and entertainment to you all for almost 4 years now, and it's time to give me something back.  Flattr suggests giving me about $10 by clicking my "donate" button, or buying my merchandise.

Of course, I have no "donate" button, nor any merchandise (although I've considered selling "Nodes of Gold" t-shirts). I don't even have any advertising that you can click on to make Google send me some cash.

Which is fine. This blog is at least as much for me as it is for you. Besides, Flattr made up the whole Special Day because they're a micropayment service and they want me to set them up as my donation administrator, so really it's just a way for them to drum up business. Which is also fine. I don't begrudge anyone the chance to make money. (But I don't plan on helping them, either.)

You still feel the need to pay me? Buy me a beer some time if you see me. Or make a donation to a cancer organization. The Pan Mass Challenge, maybe? Or LLS? Or maybe Patients Against Lymphoma? I've benefited, directly or indirectly, from all of them.

And if you still want to pay me, but you have no money to spare, then leave me a comment. Writers love to know they are being read. Tell me you like the blog. That's worth plenty to me.

Thanks for your support -- monetary or otherwise.

ASH: Cal-101 +

Another abstract from ASH, this one called "A Phase 1 Study of the Selective Phosphatidylinositol 3-Kinase-Delta (PI3Kδ) Inhibitor, Cal‑101 (GS-1101), in Combination with Rituximab and/or Bendamustine in Patients with Previously Treated, Indolent Non-Hodgkin Lymphoma (iNHL)."  


Quite the mouthful, but here's what it's all about:
 
Studies have already been done on a treatment called Cal-101, a type of treatment called a kinase inhibitor. In a nutshell, it works by blocking several pathways that the cancer cell needs in order to survive. In this way, it causes apoptosis -- the cell kills itself. It's been used in several types of blood cancers -- lymphomas and leukemias; a few people in the support group have taken it, with excellent results.
 
This ASH study looks at Cal-101 when it is combined with either Rituxan or Rituxan + Bendamustine. It's a phase 1 study, which means it looks at a fairly small group of patients, and is interested in effectiveness, but especially in safety.
 
What this study found was that the combinations were both effective and safe. All three treatments -- Cal-101, Rituxan, and Bendamustine -- are effective and safe on their own, for certain populations. This study wanted to measure in particular how well the side effects of the three treatments would balance out.
 
The conclusion is they balance out fairly well. As a phase 1 study, it's not trying to come up with all of the answers. But it did find some great information that will be used to design phase 2 and 3 studies. 
 
This kind of study is especially important, in my humble opinion, because I believe the future of cancer treatment -- especially Follicualr NHL treatment -- will not be in single-agent solutions, but in combinations that attack the cancer in different ways. More studies like this, exploring combinations of different, effective treatments, may be the key.

ASH

This year's ASH (American Society of Hematology) conference will take place December 10-13 in San Diego, and the abstracts and press releases for some of the sessions have been popping up in the last couple of weeks.

The conference brings together researchers and practioners in hematology. Hematology is, of course, the study of blood diseases, and a good chunk of the ASH conference is devoted to lymphomas. It's exciting to see what goes on every year with new treatments, updates on clinical trials for treatments that have been around for a while, and other interesting research related to lymphoma, and especially (for me) to Follicular NHL.

I'll write about some of the more interesting abstracts over the next few weeks (though you're free to search the abstracts yourself on the ASH conference homepage).

The first one on my list: research that says a mini-Stem Cell Transplant may cure some Follicular NHL.

The paper is titled "Nonmyeloablative Allogeneic Stem Cell Transplantation with/ or without 90yttrium Ibritumomab Tiuxetan (90YIT) Is Curative for Relapsed Follicular Lymphoma: Median 9 Year Follow-up Results."  Here's my translation:

Researchers have been working for a while on determining if a mini-STC can be a cure for fNHL. With a Stem Cell Transplant, heavy duty chemo is given to essentially wipe out a patient's immune system. This is necessary for fNHL because the immune system is unfortunately the source of the cancer. After the heavy chemo, the body will restore the immune system in about 30 days, but this leaves the patient open to (potentially deadly) infections. To help the patient, stem cells (which will grow into blood cells) are injected back into the patient after the chemo does its job, keeping things in check until the immune system is restored. Sometimes the patient's own cells are removed and then put back (this is called an autogeneic STC); sometimes a matching donor's cells are put in (this is an autogeneic STC). There's also a variation called a mini-STC, which involves less harsh conditioning (the step that wipes out the immune system). Mini-STCs are easier on the patient, but potentially less effective.

In this study, the researchers report a follow-up on mini-allogeneic STC's. The conditioning agent was a chemo combo of Fludarabine (a faurly common chemo aget for several types of NHL), cyclophosphamide (another common chemo agent),and rituximab (or Rituxan, my old pal the monoclonal antibody). In an updated version of the trial, some patients were given Zevalin (the RadioImmuno Therapy agent) instead of Rituxan. After 10 years, the Lymphoma-free Overall Survival for the Rituxan group was 82%, and the Progression-Free Survival was 76%.  Pretty dang good for a group of fNHL patients. The group that had the Zevalin had a 2 year check up, and their OS and PFS rates were 88% and 85%, about the same as the 2 year rates for the first group.

The researchers' conclusion: "Nonmyeloablative allogeneic transplant can induce complete responses lasting over a decade in the majority of patients with relapsed follicular lymphoma. The addition 90YIT to the regimen appears to be particularly effective in relapsed refractory patients."

In other words: this might be a cure for some patients.

Not for all, so don't get excited. STCs have long been a cure for some patients. I think the significance here is that the mini-STC seems to do the job, too: much easier on the patient, and still very effective.

Just the first bit of good news from ASH -- at least the first to be reported in this blog. I'm sure it won't be the last, though.

Thanksgiving

Each year since I started Lympho Bob (I'm up to four now), I've tried to take a little time at Thanksgiving to think about what I'm thankful for. We cancer patients can be a thankful bunch. If we're around to give thanks, we have a clear number one on our list.

I usually try to start thinking about this post sometime around the beginning of November, and I've been throwing around some ideas. Seems like it's been harder this year. We have a high schooler now, and that's changed our schedules in small but significant ways. Less time for sustained thinking and writing. But a few days ago, my daughter showed me what she's thankful for, and it's given me some things to think about.

Last week, her class has put together a bulletin board of a large turkey. Each of its tail feathers was designed by a kid in the class, and each one lists what that kid is thankful for (along with pictures they drew). My daughter's list:

My family
My dog
Cancer doctors
Food
Water
Teachers
Life
Art

That's a pretty nice list. A lot of it is typical for a 10 year old girl: family, teachers, and dog, for example. I share in her thanks. My family -- my wife and kids, but also my parents and brother, along with so many other rxtended family members -- have been very supportive over the last four years. I'm thankful for my own teachers, too; not just the ones in school, but the ones who have taught me how to deal with cancer, emotionally and intellectually. And the dog...yeah, I guess I'm thankful for her, too. (Which reminds me -- it's been a while since Strudel wrote a guest blog post. I'm sure she'll read this one and insist on writing one soon.)

I like that my duaghter is such a pragmatist -- she gets that from me, I'm sure. So, water and food make her list. I'm thankful for them, too. Especially meatballs. Yeah -- I'm thankful for meatballs.

And art. My daughter loves art. It's her salvation sometimes. Her way of entertaining herself when she's bored, of calming herself when she's frustrated, of expressing herself when she's scared or worried.  She'll make a great artist some day. For now, I'm glad she has that outlet. And I'm thankful that I have outlets like that, too. Like running, as much as that can be a struggle sometimes. And even work -- I like my job, and I'm almost always happy to be there, doing work that I find fulfilling. And I'm thankful that I'm still healthy enough to enjoy those things.

Some of my daughter's answers are surprising from a 10 year old girl. Like, say, cancer doctors. She's had more than her share of cancer doctors than a 10 year old girl should. Fortunately, she's had reason to be thankful for them lately (and not just for my cancer doctor).

I'm thankful for all of those doctors, too.

And I like that my daughter included "life" on her list. I think there's something really mature and self-aware about that. It's connected to her thankfulness for cancer doctors, I'm afraid; she's had to think about stuff like "the preciousness of life" a little too much. At least I have an excuse for that kind of thinking.

A few days ago, I learned that a colleague at work had a heart attack about a month ago. I finally got to talk to her Monday and see how she's doing. She's feeling better, and, she said, much more appreciative of every day. Which was interesting, because she's someone who struck me as probably being appreciative of every day even before the heart attack, so hearing that from her just amplified it all.

Pragmatist that I am, I can't say that I'm one of those people who has learned to appreciate every day the way my friend has. I know people like my friend, or other cancer patients, who contemplate sunrises and the taste of sun-ripened strawberries on their tongues. I like those things, too (especially the taste of a slightly cooled, slow-cooked meatball on my tongue), but I can't say I usually stop and connect those things to cancer, or appreciating things because I know life is short.

I'm certainly thankful more often than once a year -- that's not what I mean. But sometimes the best way to show it is by living life each day, day-to-day, rather than trying to live it moment by moment.

Zevalin

Some good news for Zevalin -- the FDA has agreed to drop one of the required steps, which should make it more attractive to oncologists.

Some background (since I haven't talked about Zevalin in a while): Zevalin, like Bexxar, is a type of RadioImmuno Therapy (RIT). It's essentially Rituxan (a monoclonal antibody that attaches to the protein CD20 on B cells, and then kills them off) with a little something extra: a tiny dose of radiation that gets delivered directly to the cancer cell (something that can't be done with traditional radiation treatments, since blood cells are moving targets). Zevalin has proven to be extremely effective for many patients, on its own and in combination with other treatments.

But Zevalin has some problems, too, mostly with the way it is administered: it's not given in an oncologist's office, like many treatments, but needs to involve a team of nuclear medicine folks.  There are also some problems with reimbursement that make it unattractive for some doctors.

The FDA's decision may help with some of this. There will no longer be a bioscan required as part of the procedure. Up until now, patients were given doses of Rituxan and Zevalin, with a bio distribution scan in between. The scan would help evaluate the effectiveness of the first doses to determine their effectiveness. The step, the FDA ruled, is not necessary. As a result, patients will be exposed to less radition, and there will be less coordination required between the oncologist and the nuclear medicine team.

The hope is that this will all make Zevalin a more attractive option. Its effectiveness has never been a question; the problem has always been the difficulty of making it happen.

Gold Nanorods

I've written about this before: the cool nanotechnology that uses the tiniest gold particles to combat tumors.

(It promopted me to write "There's gold in thar tumors!", which I thought was one of my better lines in Lympho Bob.)

It's come up again, in a new and improved version. (The gold treatment, I mean, not the funny line.) Researchers at Rice University have found a way to put 200  million gold particles into a single cancer cell. Obviously, they aren't doing this for kicks; it's the first step in figuring out how to kill the cell. The plan is to eventually fire a low-power laser at the cell, which will heat the gold nanoparticles and kill the cell. Such tiny particles create a very small amount of heat, so the challenge has been trying to get a sufficient number of them into the cell. The Rice University research seems to have accomplished this task.

I like this kind of research. It's sort of weird, which makes me think it might be useful. Sometimes a route other than the familiar surgery/chemo/radiation trio is necessary to get us to rethink what we are doinga dn why. So maybe this will work, or spark some other way of thinking about how to wipe out cancer cells.

Fighting a Smarter War

We are quickly coming up on the 40th anniversary of the War on Cancer: Nixon signed the National Cancer Act on December 23, 1971. This act strengthened the National Cancer Institute and increased funding for cancer research. In signing the act into law, Nixon used the phrase "War on Cancer," making the search for a cure into a big ol' battle.

The war has, of course, had mixed results. (Don't they all?) We've certainly made a ton of progress in 40 years, though we're still far from wiping out all cancer.

Medscape.com, a service which publishes and promotes medical research, has a nice video previewing a symposium taking place next month in Washington, DC. The symposium is called "Fighting a Smarter War Against Cancer: Linking Policy to Patient," and will get at some of the policy issues (political, economic, and cultural) that have complicated the War on Cancer.

The symposium will be chaired by Dr. John Marshall, who is the subject of the Medscape video interview. He previews some of the issues in the current version of the War on Cancer: differences in emphasis in cancer research; the problems of implementing personalized medicine; and, perhaps greatest of all, the cost of cancer treatment.

The video doesn't solve any problems (and I'm guessing the 3 day symposium won't either, given how big the problem is), but it does bring up some interesting issues. It's nice to see that so many people are interested in the Big Issues surrounding cancer, in addition to all of those who fight the day-to-day battles.

Things Not to Say

I've covered this topic before, though it's been a while: the insensitive things that people say to someone with cancer, usually in an attempt to be sensitive.

(There -- I've already revealed my take on this whole subject. I always give people the benefit of the doubt, and assume they want to say the right thing, but just don't know what that is, or are too thrown by the whole "cancer" thing to think rationally. I know there's a real possibility that people who say insensitive things are just jerks. But giving them the benefit of the doubt helps keep me sane.)

The most recent discussion I have seen of this was just few days ago, from Hillary St. Pierre, a nurse and "Patient Advocate-Activist," as she is listed in her article, "Things to Never Do When Someone Tells You They Have Cancer."


I like her opening: "The first time someone uttered the words, "You still have hope" in response to my cancer, I almost slapped them. When an RN said these words -- meant to comfort me -- I raged. I was planning on a little more than hope."
 
Nice attitude. I love a fighter.
 
St. Pierre lists 17 things you should not say or do in this situation. I'm always amazed -- though I know I shouldn't be -- that I've had so many of the same things said or done to me. It's a universal experience, which is comforting, in its way (if you consider knowing that so many other people have cancer, and that so many other people are dumb or insensitive, at all comforting).
 
Some of the experiences I have in common with St. Pierre:
 
2. Do not say, "Oh, my great aunt Millie's cousin (or whoever) died from that."  Yeah, I've gotten that one a lot. I think it starts as an attempt to connect -- this person talking to you has had experience dealing with the situation you are in. But it breaks down quickly. It's supposed to be an expression of concern, I guess, that you will also have a hard time. I had someone tell me (as I was going through treatment) that her great Aunt Millie's cousin probably would have survived, but it was probably the chemo that killed her. Gee, thanks.

7. Do not ask if the disease comes from something the person did (Ex: "Don't people with STDs get that?"). Well, I've never had the STD thing come up, exactly, but I have been asked what caused my cancer. "I don't know, and it doesn't really matter" doesn't seem to get them to stop probing. This, too, I think is a genuine expression of concern, as if knowing what I did to get NHL might also make it go away, if only I stopped. And, hey, if I could stop my body from producing an excess of B cells, I would.

8. Do not suggest asparagus, shakes or any other miracle cure that is "proven to work."   Got this one, too, from someone who suggested she was in an industry that would know that it worked. She suggested some weird fruit juice that cost $60 a quart. Sorry. Not enough proof for me to spend that kind of money. I'm not desperate enough (yet).

12. Do not start on a rampage lecture about how someone somewhere has the cure and is hiding it in a conspiracy theory to make money from your suffering. While I, too, recognize the problems with income disparity in this country, and believe that those in power sometimes do things to remain in power, I cannot believe that someone is holding off on revealing a cure. I've met too many people who work on finding a cure for cancer because they've lost a loved one (or two) to cancer, and I can't believe that they would ever hold back on letting the world know about it if they'd found a cure.

St. Pierre offers some very sane advice for what to do/say instead. To sum up: Take a deep breath. Admit it if you don't know what to say. Be honest and open, and put the needs of the cancer patient first.

It's all good advice. And, to other patients, I say again: give people the benefit of the doubt. In the end, there's nothing truly good that can be said about cancer, or to a cancer patient. Let people's insensitivities slide. Put your energy into getting better, not seething at someone else's mistakes.

The Body's Secret Army

The official Nobel Prize web site recently posted a very cool video called "The Body's Secret Army," which explains how the immune system works.

The very cool part? It features explanations from a bunch of researchers who have won the Nobel Prize for their work in helping us understand the immune system.

The video begins with some history of immunology (the study of the immune system), and then moves on to more recent developments in the field. One of the developments discussed is monoclonal antibodies -- like my old pal Rituxan (though Rituxan isn't mentioned specifially). It's interesting to see how Rituxan fits in with immunology -- basically, how a monoclonal antibody does the job that the body's immune system should do (but can't).

In fact, there's quite a bit in the video about cancer, and the role that the immune system plays (or fails to play) in malignancies. I was especially fascinated by the segment on how monoclonal antibodies are being used for cancers other than lymphoma.

Neat stuff. The video is about 30 minutes long, and slightly graphic in at least one place (a woman's swollen face). But I recommend it as a nice way to increase your knowledge of how your own body works (or doesn't).

Paps

OK, I know in a cancer blog you might be expecting "Paps" to refer to something else, but I'm writing about Jonathan Papelbon, the now former Red Sox closer, signing with the Phillies.

I'll admit, I'm going to miss him. Even though I saw one of his few big blown saves live, in a playoff game no less, I'll always love him for 2007 -- both his many saves and his Riverdance with Dropkick Murphy's, in a kilt, during the parade after they won the Series.

(And if you're looking  for a cancer connection in all of this, Dropkick provides it. They gave our family a big lift a couple of months after I was diagnosed. Look it up in the Lympho Bob archives. March 2008.)

As much as I appreciate all of Paps' saves, and his Riverdance, I think what I'll miss most is his entrance. Imagine it's the top of the ninth at Fenway, the Sox have a small lead, and they're three outs away from a win. There seems to be some hesitation on the bench before the Sox fielders jog to their positions. And then you hear the opening chords to Dropkick's "Shipping Up to Boston": DUH DUH...DUH DUH...DUH DUH....And Papelbon pauses at the bullpen door, fists bumps the police officer assigned to guard the bullpen, and then sprints from the bullpen, all alone on the field, to the mound.

As cool as it is on video, to see it live is just amazing. 30,000 fans on their feet when the Dropkick song comes on, then clapping to the music, so completely pumped up with confidence. I hope Philly fans get that same experience. And I'm glad, a couple of months ago, I got to experience it live with my boys. It's a very cool memory.

Good luck, Paps. Thanks for the memory.

Wider World

I want to give another plug to Betsy de Parry, who has done so much to publicize the problems of cancer patients. She's done it with books (including her new one), webcasts, and now on TV.

Betsy will be part of the PBS show A Wider World, which focuses on people with disabilities; the show will now feature regular segments on cancer issues, with experts from the University of Michigan.

The first segment aired a couple of days ago. Betsy's website lists days and times when different PBS affiliates show A Wider World, plus a link to the show's YouTube channel in case it's not shown locally.

I'm all about publicizing accurate cancer information these days, so I'm happy to see something like this happening.  As always -- well done, Betsy.

Scanxiety

Any cancer patient will know the feeling, even if they don't know the word -- in my support group, it's called "scanxiety" -- the anxiety that comes from having a CT or PET scan scheduled real soon.

It's not the scan itself that causes the anxiety (though sometimes the process of having a scan is less than pleasant); the anxiety comes from not knowing what the results might be.

Of all the advice I've seen about dealing with scanxiety, I think some of the best advice is from Laura Dolson, who maintains a site on gyn cancers. Dodson calls it "Test Anxiety," and says there are two ways to deal with it: confrontation or distraction. With confrontation, you deal with the situation head on. With distraction, you push it out of your mind as much as possible. They both work, and sometimes they even work together. Dodson offers some excellent practical advice for using both strategies.

It's funny -- when I get a scan, I use distraction. To me, there's no sense in worrying. The scan is going to happen, and the results are going to come in, and there's nothing I can do to change that, so I try not to even think about it until it's over and I need to do something.

On the other hand, I think I approached my treatments with much more of a confrontation attitude. I didn't fret over them. I knew it was time to battle, and I met that enemy head on.

So we all deal with things in whatever way makes sense for each of us. I've come to believe that with cancer, there are no right ways for everyone to do things, just right ways for each of us individually. Whatever decision gives us peace is the right decision.

Lymphoma Stinks

So I went out for my Saturday morning run today. I was up at 6:00, and hoping to get out by 6:30, because my daughter's first basketball game (a scrimmage) was this morning.  Isabel is coaching her team, and I needed to get them up by 7:30.

It was very dark and very cold at 6:30 this morning. But that was OK. I felt good about running, I'd slept well, and I had enough energy to decide to run a route that would be a little bit challenging. So I left my driveway, ran down the street, feeling good. Some downed branches blocked the sidewalk a few houses down from mine, so I moved out into the street. Still feeling good, and then....I stopped dead in my tracks.

About ten feet in front of me, a large skunk crossed the road. He (she?) stopped in the middle of the street and turned to look at me. I live with an animal lover, so I know to look for certain signs of distress in the skunk: stomping his feet, standing on his front legs -- these are not good signs.

But this skunk didn't do that. He just stared at me. I took a couple of steps backward. Satisfied, he kept on walking. I turned and ran really fast in the other direction.

I didn't do the challenging route I had planned (since a skunk was likely to be hanging out along there somewhere), and, full of adreniline, I ran much faster than I had planned and pooped out halfway through the run.

This is a cancer blog, but I can't really connect all of this to cancer in any way, other than to say:

But you already knew that....



Marcus Cannon Update

Last spring, I wrote about the New England Patriots taking a chance on a young man with cancer. Marcus Cannon was diagnosed with an aggressive form of NHL; he was projected to be a 2nd round draft pick, and the Pats picked him in the 5th round.

Last week, the NFL announced that Cannon had begun practicing with the Patriots. His chemo ended in June, and he took some time to rebuild his strength and make sure he was healthy. It's a nice story. As the NFL.com piece says, "So often, the only players in the spotlight are those who star on the field or create tumultuous Twitter drama. But Cannon's fight to get back to a simple practice required something from within that few of us ever will know."

The Boston Herald also ran a couple of pieces (a little more in-depth) about Cannon's comeback. One kind of gives the facts of his return. For the other, Karen Guregian wrote a nice column about the impact that Cannon's return has had on his teammates and on fans in general.

It's certainly cause for celebration. Of course, it would have been even more cause for celebration if he was a cornerback instead of a guard, given the way Pittsburgh picked apart the Pats secondary on Sunday. But, then again, Green-Ellis needed some help, too, so maybe Cannon can open up some holes for him soon .

One more article from that edition of the Herald that's worth mentioning:  a piece about the "troubling trend" of the increase in cases of NHL. It appeared on the sports page because of Cannon -- plus former Patriot Joe Andruzzi and Sox ace Jon Lester -- having NHL. It's a short article, and doesn't give a more than the absolute basics in describing what NHL is. But at least it gives correct information for what it does provide. So they get a thumbs up for that.

I hope Cannon ends up making some impact, and proving to be an inspiration for NHL and other cancer patients. Good luck, Marcus.