Bone Marrow Donation

William Hudson, a producer for the CNN medical team, recently donated bone marrow, and wrote a really nice article on why he did it.

Bone marrow transplants, as Hudson points out, can be life savers for people with blood cancers. They are typically accompanied by aggressive, high dose chemotherapy, which wipes out the patient's bone marrow (the source of blood cells, including cancerous ones -- and including white blood cells which are essential to the immune system). The donated bone marrow helps the patient's immune system recover more quickly.

Hudson describes the procedure he went through for getting on the bone marrow donation registry; for being chosen (only about 1 in 500 people on the registry are ever actually matched up with a cancer patient); and donating the bone marrow. He also describes an alternative procedure, a Stem Cell Transplant. Both of them help, though he chose to donate bone marrow and not just stem cells.

I think Hudson does a great job of not only describing the procedures, but of also answering the question, "Why do it?" As he puts it, "Joining the registry is a statement -- that when cancer affects one of us, it affects all of us."

If you're reading this, you're likely a blood cancer patient, or someone who is very close to one. If you're a patient, encourage your family and friends to add this to their New Year's Resolutions. If you're a loved one, then do it yourself.

There might even be a steak in it for you.....

Oncologists' Income

The Journal of Clinical Oncology just released the results of a study that shows that some oncologists could potentially increase their income by over-treating their patients.

The article stated the results of a survey of oncologists, and found that while most oncologists are paid a salary, about 27% of them are paid through fee-for-service; that is, they get paid depending on what they do for a patient. So while some oncologists could send a patient to a hospital for treatment, others will have patients receive treatment in their office; for the latter doctor, he or she, and not the hospital, would get paid for administering the treatment.

As an article from Reuters points out, this has the potential for a lot of abuse. It would be easy to give a patient a treatment that isn't quite needed, or one that's a little more expensive, if there was some kind of cash incentive to do so.

For example: I spend two years watching and waiting, with regular doctor visits, but no treatment. Many oncologists recommend that their patients go through treatment immediately. Current research suggests that there is no harm in watching and waiting, and that there are some benefits to it. But a doctor might look at all of the choices available, and consider: W & W? No income from that. Straight Rituxan? A cheaper option for the patient, but less income for me. CHOP? Maybe we can stretch it out to 6 rounds instead of four -- hope he's got a strong heart. We'll make it R-CHOP, and throw in 6 rounds of Rituxan, too. And let's not forget Rituxan maintenance.....

Now, all of that is a little alarming, but the Reuters article is maybe a little bit alarmist. The study didn't find that there was abuse going on. It did what a good scientific study should do: it raised some questions. So while it's probably not a bad idea to find out of a doctor is benefiting financially from the treatments being prescribed, it's probably not the best idea to assume that your doctor is putting her own pocketbook ahead of your health. If you're thinking that way, you probably need a new oncologist anyway.

Still, it would be nice to see if this was being done by lots of doctors. No one wants over-treatment; it hurts everyone when the cost of health has to go up unnecessarily. But no one wants under-treatment either. There has to be some way of determining the best options, so a patient's health is ultimately the priority. Unfortunately, that's not always easy to do. What "the best" way to treat Follicular NHL? We're still trying to figure that one out.

So I guess the solution is to find a doctor you trust. Always your best bet anyway....

PITS Video

OK, this was just too weird to pass up: a video from almost two years ago, created by the British Lymphoma Association. It's meant to alert people to the typical symptoms of lymphoma, with the acronym PITS: Persistent lumps, Itching, Tiredness, and Sweating. They make excellent use of the whole "pits" visual pun.

The video is aimed at people under 30, who are most susceptible to lymphoma. (I think they are referring to Hodgkin's, specifically, though they lump it (ha!) all under "lymphoma."

Still, it's a nice way to make people aware of the symptoms. Of course, with the prevalence of WebMD and other medical sites, the problem might also be people who know about some symptoms and suspect they have lymphoma, when those very general symptoms could be many other things, too. We get a lot of those folks visiting the support group: "I have a lump/itchiness/fatigue -- could I have lymphoma." And the gentle response is always, "We don't know -- go see a doctor."

And that's ultimately the message. No one wants to be a hypocondriac, but no one wants undiagnosed cancer, either. So this video does a nice job of getting people's attention and encouraging them to do just that -- go see a doctor.

Enjoy.

Merry Christmas

A Merry Christmas to all who are celebrating. I hope Santa brings everyone good health this year.

New Immunology Technique

The blog that Sloan-Kettering Cancer Center runs reports on a new Immunotherapy technique that could be a boon for treating all types of cancers, including blood cancers.

The technique is called Adoptive Cell Transfer (ACT), and is an improvement on previous attempts at this kind of Immunpotherapy.

Immunotherapy approaches try to find ways train the body's natural defenses to recognize and attack cancer cells the way they would any other invader. This is hard, because 1) cancer cells aren't really "invaders," as such, since they come from the patient's own body, and 2) cancers are smart as hell and develop additonal ways to protect themselves from the immune system.

Some immunotherapies target a single antigen on a cancer cell. Rituxan, for example, targets the CD20 protein on the surface of B cells. The problem, as successful as Rituxan has been, is that both cancer cells and healthy B cells have CD20. So you get a little bot of collateral damage. There's no antigen that exists only on cancer cells, so that kind of damage to at least some healthy cells is unavoidable with most immunotherapies.

ACT is different because it is able to target two antigens on the surface of cancer cells, something much more likely to be unique to cancer cells. That is, few healthy cells have combinations of antigens that cancer cells have. Follicular NHL cells often have, for example, CD20 and CD22. A therapy that targeted both could help keep some healthy cells safe.

It works by removing some T cells from the patient's body (these are white blood cells that naturally attack invaders), and training them to recognize the antigens. The cells are then reintroduced into the patient and get to work.

The article discusses work done with prostate cancer cells, and it looks promising.

The problem, if I can extend the lymphoma example, is that not all Follicular NHL patients have the CD20 or the CD22, let alone both of them. So these therapies will need to be matched to individual patients. this isn't necessarily a big deal; it's not like every patient has his or her own set of antigens that no one else has. But it will be an extra step. On the other hand, that kind of individualized approach is gaining steam anyway.

More advances. Always nice to see.

Watch and Wait? A Case Study

The Watch-and-Wait question never really goes away.

The question is usually asked in some variation of: "Now that Rituxan is so common, do we really need watch-and-wait?"

You'll get as many different answers as there are oncologists to answer it (not to mention know-it-all patients like me).

Earlier this month, the ASH Education Book featured a case study designed to respond to that question. The case study and response were written by Dr. Brad Kahl of the University of Wisconsin's Carbone Cancer Center. It's a pretty thorough treatment of the question, I think -- as would be expected, given that it was written to educate other oncologists (not to mention know-it-all patients like me).

Dr. Kahl's focus is on low tumor-burden Follicular NHL patients. Interestingly, as he points out, there is very little hard data on such patients (me included); most research focuses on fNHL patients with high tumor burden. And what little exists was mostly done before Rituxan was common, so we really can't rely on that data.

Dr. Kahl offers a case of a 47 year old male with low tumor burden and some anxiety about it all. It's pretty interesting to read, actually; there are a bunch of parallels between this patient's case and my own. Except this guy is an accountant, and Lord knows I am not. Also, the patient in the case is not a know-it-all, but his wife seems to be.

Dr. Kahl offers three possibilities for this patient, and provides pros and cons for all three, including quality of life considerations. the options are 1) watch-and-wait; 2) Rituxan plus chemo (CVP, CHOP, or MCP, and maybe something else, but I can't tell what from the title of the citation); or 3) Rituxan alone.

So which one does Dr. Kahl choose for this 47 year old accountant?

You'll need to read that for yourself.  But it's all certainly educational.

Stand Up Immunology

A quick video from Stand Up to Cancer:

SU2C and the cancer Research Institute have created a "Dream Team" too look into ways immunology can tackle cancer. Immunology, in general, involves treatments that allow the body's own immune system to do it's job and recognize cancer as an invader.

This is exactly the kid of work that Stand Up 2 Cancer was designed to do: rather than approaching cancer in traditional ways, SU2C funds projects that bring in different perspectives, to look at cancer in new ways.

This looks like a great team. Can't wait to see what they come up with.

ASH: BR Yes, CHOP No

One last presentation from the ASH conference worth mentioning: Bendamustine is rapidly replacing CHOP.

No links to abstracts (I'm too lazy to look for them), but an article from MedPageToday that's worth looking at; it discusses two ASH presentations on this topic.

The first is from German researchers who have focused on Bendamustine for the last few years. Bendamustine was first developed in East Germany (back when there was an East Germany), and was used there for a while before it was discovered by western Europeans and then by U.S. oncologists. The German study says that about 16% of German indolent lymphoma patients are now given CHOP as a first-line treatment. By contrast, about 71% get Bendamustine. "R-CHOP is dead," said the lead researcher.

I'm not sure that is, or should be, entirely true, given that we're talking about 1) first-line therapies (that is, the first treatment given to a patient), and 2) indolent lymphomas (which could transform, in which case, CHOP might be the best therapy available).

The other presentation, by an American researcher, reported positive results by using Rituxan + Bendamustine and following that up with RadioImmunoTherapy. This consolidation combo produced great results -- not at all surprising, considering the three different mechanisms at work to attack the cancer cells in three different ways.

"R-CHOP is going to be dead," said the lead researcher.

That would certainly be nice, because it would mean that we have enough treatments that are just as effective, without the toxicity.

So maybe something good came out of ASH this year after all.

Worst Doctor of the Year

No, no -- it's not my doctor, or even any doctor I know. He's a doctor described in an article called "Worst Doctor of the Year," published about a week ago.

I'll let you click on the link to get the details yourself, but the article does point out -- rightly, I think -- that he comes off as a jerk. The patient he works with doesn't seem like the most pleasant of people, either, though he didn't seem all that bad to me. Kind of a cranky old man. Surely, this doctor has dealt with cranky people before.

And I understand completely that doctors need to vent. I imagine it's like being a teacher; sometimes, we close the door and just go off to a colleague about how horrible this or that student was. But we close the door. Learned that from a mentor my first week: if you have to vent, please don't do it publicly. It doesn't create a very good atmosphere.

And that's where this particular doctor makes a mistake. In my non-Lympho Bob life, I spend a fair amount of time thinking about social media, and some of the problems that come when people say things they shouldn't say on Facebook, Twitter, in blogs, on YouTube, etc., etc. And when a doctor trashes a patient in a blog, especially one sponsored by a professional group, it's going to get some notice. I can see where he thought that maybe, since this was a blog aimed at other doctors, no one would notice, kind of like shutting a digital door. But social media don't work that way. Anything that gets written online can be seen, in theory, by anyone else in the world with an internet connection. That's why "Gangnam Style" has close to a billion views; it's not like that many people actively sought out a Korean guy dressed like MC Hammer all on their own.

Social media can be wonderful for a cancer patient; they certainly have been for me, as a way to connect with other patients and find information and inspiration (and, I hope, to provide information and inspiration to others). They can also be a source of information about doctors -- maybe not just who they are, but what they believe. I've linked to some doctors' writing many times in the past, and from what I've read, I think most of them would make fantastic doctors for me. But for the few who wouldn't, it's nice to know who to avoid.

Knowledge is power. That's been an unspoken theme of Lympho Bob for almost five years. Just know how to use it -- as the start of a conversation with your doctor. Or maybe the end of a conversation.....

ASH: Give it a Shot

More from the ASH conference: Cutting down times for administering Rituxan.

I wrote about something similar about a month ago: the FDA had approved a speedy infusion for certain patients receiving Rituxan, cutting the time in half, and (according to one study) potentially saving millions of dollars.

Even better news out of England, reported at ASH: patients can be given Rituxan as a single shot, just like you'd get a flu shot. The study claims this cuts down infusion times from 2 hours to 5 minutes. They're good in England -- mine took a minimum of 4 hours.

As this report says, cutting down all of that infusion time saves a whole bunch of money for the National Health Service; I imagine similar savings could be realized in the U.S., not to mention all the time and emotional distress that goes with sitting around for 4 hours.

The actual ASH abstract shows that this is all a little more complicated than the above link would indicate (which is often the case when we're dealing with popular press reports of medical issues). The ASH study used the subcutaneous Rituxan in combination with CHOP or CVP chemotherapy, and in R maintenance following the chemo, and found that that results were comparable to traditional IV administration of Rituxan.  That's all still very significant, of course, but it's not the same as single-agent Rituxan (which is what I had). But this study does seem to establish that their subcutaneous Rituxan is about the same as IV Rituxan, no matter how and when it is administered.

And, of course, this will take a while to become standard practice in the U.S. This study is reported as "stage 1," with additional patients being recruited for "stage 2" of the study. I don't know if their system for approval is comparable to ours, which means a stage 3 would be necessary before things get approved. We haven't even started thinking about this in the U.S., as far as I know. It's from an international team of researchers, but none is from the U.S.

Still, as always, it gives us hope.

ASH: R squared

Two presentations at the ASH conference will focus on the "R squared" regimen, so called because it features a combination of our old pal Rituxan with Revlimid, also known as lenalidomide. If there is anything approaching excitement about a Follicular treatment at ASH, it's probably this combination. (Though the excitement is muted becuase these are phase II trials being discussed.)

Lenalidomide is currently used to treat multiple myeloma, another blood cancer. It works (we think -- we're not entirely sure) by boosting the immune system and by cutting off some of the processes that cancer cells need to grow. It's all kind of murky, but it works.

The first study, by researchers at M. D. Anderson, looks at untreated fNHL patients (and a couple of other types of indolent lymphoma). Results were very positive. Of the 103 patients in the trial, 90% achieved some kind of response. Results for the 46 Follicular patients were outstanding: 98% achieved a response, with 87% achieving a complete response. After 2 years, 89% of Follicular patients were still cancer free. That deserves some kind of "Wowwee" comment.

A new trial comparing R squared with more traditional chemo is underway as we speak.

The second study, by some Italian researchers, looked at R squared in patients who had between 2 and 4 previous treatments that contained Rituxan. As great as the first study seemed to be for untreated patients, this would provide answers for others patients. It's possible, for example, that patients in this study might have become resistant to Rituxan, and so their reactions to lenalidomide would be different. This study also looked at indolent lymphoma patients EXCLUDING Follicular. Not sure why they ruled out fNHL, but I was curious about the results anyway.

Of the 39 patients enrolled, 52% achieved a response of some kind. Not as good as the response in untreated patients, but still pretty good. As the researchers point out, that response rate puts them pretty well in line with other R + chemo combinations, but with fewer side effects. The results are good enough to warrant a larger, phase III study.

There are a few people in the support group who have been on lenalidomide, mostly as a single agent, from what I remember, and the results have been decent. It will be nice to see some larger trials, with the treatment closer to approval, to really give us something to be excited about.

But this is a pretty good start.

ASH Preview (No Big News)

As I said last time, there really isn't much exciting coming out of ASH this year. I should clarify a little -- there isn't much coming out dealing with NHL. Apparently, there's some great stuff coming out that deals with leukemia.

Medscape's ASH preview highlights two studies related to different types of leukemia. One focuses on Chronic Myeloid Leukemia (CML), which, as the article notes, was at one time a certain death sentence. Now, with tyrosine kinase inhibitors, the disease is manageable for many patients -- except those with a particular genetic mutation, which made that form of CML resistant to kinase inhibitors. A presentation at ASH will describe the successful phase 2 trial for ponatinib, which seems to work for the patients with this mutation.

The article describes some research on other types of leukemia, too.

So all the really exciting stuff is happening in other blood cancers.

Which is fine -- any advances help us all, even if they are not direct. The techniques and the assumptions behind the treatments may open up doors for the rest of us sometime.

ASH: Enzastaurin

OK, back to some of the research coming out of ASH, which starts on December 8th.

It's interesting that I have seen so little hoopla about the conference. Usually, by this time about 10 drug companies have put out press releases announcing the results of their various trials.  Granted, it picks up once the conference starts, and the papers have actually been presented, so maybe we'll see more next week. But, on the other hand, I've also seen commentaries that say there isn't anything really groundbreaking to announce this year. So maybe that's what's going on. Most of what we're seeing is either backing up research that we already know about, or is the earlier stages of trials, so it's too soon to say the results are game-changers.

One of the latter type (too early to get excited) is a presentation on Enzastaurin; results from a phase II trial are being presented. Basically, this means it's a smaller-scale trial designed to show the treatment actually works, and the results would justify a larger, more expensive, time-intensive phase III trial.


Enzastaurin is a protein kinase inhibitor, which is a type of treatment that targets cancer cells by looking for something called Protein Kinase C Beta, which is present in B cells (the type of white blood cell that goes nutty in Follicular NHL). In solid tumors, C Beta seems to be responsible for allowing blood vessels to grow and feed the tumor (Enzastaurin has been used with brain cancer patients, for example). But it also seems to play a role in B cell lymphomas.

In this trial, 66 patients were given Enzastaurin. The main thing researchers were looking for was RR -- overall response rate. Basically, they wanted to see how many patients had some kind of positive reaction.

And the results look decent: 29.3% responded to treatment. A few are still taking Enzastaurin, three and a half years later.

More interesting, though, was that certain biomarkers seemed to correlate with better results. In other words, when researchers looked more closely at tissue samples, they saw that the patients with better results generally had certain features on their cells that didn't show up on the cells of patients that had no response. The results were significant enough that they will investigate further, but for now, the study was too small to say anything for sure. (That's why they have phase III trials.)

I found this interesting for two reasons. First, protein kinase inhibitors are pretty interesting. They can target cancer cells and leave normal cells alone -- certainly a trend in cancer research. But at the same time, the study shows how much more closely we're able to examine cancer cells genetic makeup and start making guesses as to why some treatments work for some patients, while others don't. Isn't your first reaction when you see that a treatment worked for 29.3% of people to ask, "What about the other 70%? Why didn't it work for them?" Well, we may know. That kind of personalization is becoming more and more popular.

It's not a significant study, in that it's not presenting any great breakthroughs, but for me, it emphasizes some of things that make me hopeful about fNHL research.

No More Gilda?

A small controversy in the cancer community:

The Madison, Wisconsin branch of the national organization "Gilda's Club" is changing its name to Cancer Support Community Southwest Wisconsin.

Gilda's Club provides services to cancer patients of all ages and their families, free of charge. It is named, of course, for Gilda Radner, the very funny SNL alum who faced cancer with such humor and dignity. After she was diagnosed, she said, "Having cancer gave me membership in an elite club I’d rather not belong to." Her friends began Gilda's Club as a tribute to her memory.

The Madison branch realized that most of the people they were serving were born after Gilda had died, and had never heard of her. Since they rely on donations, and since people who need cancer support (especially young people) Google "cancer," they though they would be more easily found if they had the word "Cancer" in their name.

People are up in arms about this decision, and are flooding their Facebook page with comments. They see it as an insult to Radner.

In some ways, it isn't really a controversy. Radner herself got support from a place called The Wellness Community, and Gilda's Club merged with them a few years ago, creating a new group called Cancer Support Community. The local chapters had the option of choosing any of those three names, and some did change. So the Madison group isn't really doing anything radical -- they're just doing it a few years later than some other folks.

I can understand people being upset, though. For one thing, cancer patients like stability; we have enough change to worry about, and a change from something they see as positive is liable to upset them. For another thing: I think we all worry about being remembered, and it makes us sad to think that someone who was once so famous, and brought so much joy to so many people, is now so obscure that she's hurting the fundraising for the cause she cared about so much. That can't make any of us feel good to think about.

Her husband, lymphoma survivor and brilliant comic actor Gene Wilder, was asked what he thought about it, and he said he didn't like it, but he understood, and he offered an imaginary conversation between himself and Radner:

He said if he had to break the news to his late wife she might ask, “Do they have to throw me out?”
“I’d say, ‘It’s not throwing you out, honey, it’s getting more money.’ And she’d say, ‘OK, I guess if they have to, they have to,’” he said. “It’s too bad. I wish it weren’t so. But I understand.”

He said if he had to break the news to his late wife she might ask, "Do they have to throw me out?"
"I'd say, 'It's not throwing you out, honey, it's getting more money.' And she'd say, 'OK, I guess if they have to, they have to,'" he said. "It's too bad. I wish it weren't so. But I understand."


Read more: http://www.sfgate.com/news/medical/article/Gilda-s-Club-name-change-seen-as-insult-to-Radner-4078318.php#ixzz2Df90DfQt

He said if he had to break the news to his late wife she might ask, "Do they have to throw me out?"
"I'd say, 'It's not throwing you out, honey, it's getting more money.' And she'd say, 'OK, I guess if they have to, they have to,'" he said. "It's too bad. I wish it weren't so. But I understand."


Read more: http://www.sfgate.com/news/medical/article/Gilda-s-Club-name-change-seen-as-insult-to-Radner-4078318.php#ixzz2Df90DfQt

So I guess we should understand, too. As long as all of those pictures of Gilda stay on the walls, and maybe if the rooms named after he various characters aren't changed, her memory will stay. And maybe some of those young folks will ask "Why the heck is this called the Roseanne Roseannadanna Room, anyway?"

Gilda's Club Worldwide merged with The Wellness Community in 2009, and the joint headquarters in Washington changed its name to the Cancer Support Community. Local chapters were given the choice of keeping their names or switching to Cancer Support Community, House said.

Read more: http://www.sfgate.com/news/medical/article/Gilda-s-Club-name-change-seen-as-insult-to-Radner-4078318.php#ixzz2Df7NwFwo

Gilda's Club Worldwide merged with The Wellness Community in 2009, and the joint headquarters in Washington changed its name to the Cancer Support Community. Local chapters were given the choice of keeping their names or switching to Cancer Support Community, House said.

Read more: http://www.sfgate.com/news/medical/article/Gilda-s-Club-name-change-seen-as-insult-to-Radner-4078318.php#ixzz2Df7NwFwo

Vaccine Petition

Change.org has a petition from Voices for Progress asking the FDA to consider approval of the BioVaxID vaccine for Follicular Lymphoma. I urge you to sign it.

I wrote about BioVax very recently. Initial clinical trial results looked great -- patients who took the vaccine added about 14 months to their disease-free survival. The FDA, however, rejected the request for approval because the results were somewhat old, and they wanted to see results in patients who are taking more currently popular treatments, particularly Rituxan.

The petition asks the FDA to consider the earlier results, and to keep in mind that, as a consolidation therapy (that is, a treatment that is given immediately after another treatment), BioVaxID will have fewer reported side effects than other consolidations like R maintenance or RadioImmunoTherapy.

It's all about options. That's what fNHL patients want. And need.

Lymphoma Rock Star Betsy de Parry (I'm going to suggest that she change her name legally to "Lymphoma Rock Star Betsy de Parry) wrote a nice piece for AnnArbor.com on Monday in  which she makes a case for the FDA to rant accelerated approval of BioVax. Accelerated approval gives doctors permission to use the treatment, provided the maker of the treatment agrees to conduct further trials to confirm its effectiveness. These "Phase 4" trials can then lead to full approval for the treatment, if they prove to be as effective as they seem likely to be.

As I write this, the petition still needs over 1000 signatures. Please consider adding your name.

Standards of Beauty

Yesterday, between the third and fourth quarters of the Indianapolis Colts' game, two cheerleaders had their heads shaved.

They did it in solidarity with Chuck Pagano, the Colts' coach, who was diagnosed with leukemia in September. Chemo took his hair. The community, and especially the team, rallied around Pagano, with several players shaving their heads. So Blue, the Colts' mascot, issued a challenge to the cheerleaders: would anyone be willing to have Blue shave her head, if Blue could raise $10,000 for leukemia research?

One brave cheerleader, Megan, took him up on it, and when Blue raised over $22,000, Megan kept her promise. She was joined by another cheerleader, Crystal Ann, and they held hands while Blue did his work with the razor.

Megan and Crytsal Ann are not the first people to shave their heads in solidarity with a cancer patient. All those players did it. And country singer Kellie Pickler did it, too.

To be honest, I think it's great when people do it, but I'm a whole lot more impressed when a woman does it, especially a woman like Kellie or Megan or Crystal Ann who is so visible.

Is it cliche to say that their selfless act is more about inner beauty than outer beauty? Maybe. But it certainly should get people to reconsider what beauty is all about.

Megan's page on the Colts Cheerleaders website includes some personal information, as well as her advice for kids and teens, which begins, "Be proud of who you are and embrace what makes you unique."

That's some excellent advice.

What I'm Thankful For

Here it is, two days after Thanksgiving, and twice I have posted my "What I am Thankful for" entry for the year, and twice it has been messed up by Blogger. Very frustrating. I spent a pretty long time thinking about it and writing it up, and now I'm on no mood to rewrite it a third time. Which really stinks.

Watch this instead. It's pretty close to what I said I was thankful for.


So I'll just say, Thanks to my family, for being so supportive. I couldn't have some this far without you.

In less than two months, I will celebrate five years since my diagnosis. I'll have lots to say then. In the meantime, Thanks to all of you who read the blog. I always say that, in the end, I write the blog for myself, but I hope that some of you take some comfort, wisdom, and knowledge from it, too.

Hope your Thanksgiving was a good one.

ASH: Quality of Life

 
OK, time to get to some of the 126 abstracts from this year's ASH Conference that are related to Follicular NHL.

The first is called "Differences in Quality of Life Between Bendamustine Plus Rituximab Compared with Standard First-Line Treatments in Patients with Previously Untreated Advanced Indolent Non-Hodgkin’s Lymphoma or Mantle Cell Lymphoma."

I find it intriguing because we're getting even more research devoted to Bendamustine (Treanda); it was pretty much established as the go-to treatment for fNHL in the last year, and more research just keeps reaffirming it. 

In this study, researchers compared relapsed and refractory fNHL and MCL patients who were given either Bendamustine + Rituxan, or who were given "standard" chemotherapies of either R-CHOP or R-CVP.  But instead of measuring its effectiveness in reducing the cancer (which they may very well have also looked at), they looked at how the treatments affected quality of life -- how much the treatments affected their everyday happiness, in a sense, and their ability to function in a "normal" way.

Patients were given questionnaires about Quality of Life, asking about things like cognitive issues (which probably means "chemo brain"), emotional issues, physical issues, etc. The questionnaires were given at the beginning and the end of treatment. We know that B-R has fewer side effects than CVP or CHOP, so it's no surprise that quality of life either went up, or did not go down as quickly as it did for the "standard" chemos.  

It's a significant study, not just because it gives yet another reason to consider Bendamustine. Maybe more importantly, it reinforces the idea that Quality of Life matters when it comes time to choose treatments, especially in something like fNHL, where patients are often asymptomatic. If it's possible to maintain quality of life while providing an effective treatment that reduces cancer, it seems like a no-brainer.

And yes, there are still lots of doctors who recommend R-CHOP as a first line treatment, probably out of habit (though they certainly may have other reasons). More research like this on Quality of Life -- and more proactive patients -- might change their minds.
    

Alcohol and Lymphoma

This seems relevant as we enter the holiday season, when I'll be dealing with family, friends, food, and, most importantly, the occasional alcohol.

British researchers have found that moderate drinking appears to lower the risk of some types of blood cancers, including follicular lymphoma.

Cigarette smoking does the opposite, and increases risk. I've never been a smoker, so I don't really care.

But the drinking part? Yes, that is intriguing.


The study implies that drinking alcohol might have some affect on keeping blood cancers away. It doesn't say anything about alcohol helping lymphoma once you have it. But we can make that logical leap, right? It must help, wouldn't you think? It couldn't hurt, anyway? Right?

A little wine with the turkey dinner.

A few sips of my brother's excellent pumpkin ale.

A shot of Bailey's in my hot chocolate after shoveling snow.

A dash of kahlua in my egg nog.

'Tis the season.

BioVaxID

LymphomaInfo.net has a interesting series on the BioVaxID vaccine, the latest installment of which was published about a week ago.

I've written about BioVaxID before.  The "ID" stands of "ideotype," a kind of personalized cell. Bascially, BioVax works by taking the lymphoma cells of an individual patient, training the patient's immune system to recognize those cells and attack them, and then putting the trained stuff back into the patient to clean up. I've always found it fascinating because the lymphoma specialist I saw for a second opinion mentioned this treatment in particular, and was very excited about its possibilities.

In August, the company that makes the vaccine, BioVest, was asked by the FDA to conduct a new series of trials to test its effectiveness, even though trials had already been conducted and showed some promise.

As the interview with Dr. Eduardo Sotomayor (lead investigator in the initial BioVax trial) suggests, the FDA wants more information because the initial trial was begun in 2000, just as Rituxan was taking off. Much of the data for the trail came from patients who had not been given Rituxan, and the FDA wants to know how Rituxan (which targets the cells that the vaccine also targets) will affect the results.

Dr. Sotomayor has an answer. Read the interview to find out.

Of course, the new trial will still need to be run to confirm if he's right.

The links for the first three parts of the series are at the bottom the the interview. Definitely worth reading.

New Rituxan Dosing

A couple of weeks ago, ASH sent an announcement out that a new Rituxan dosing schedule had been approved by the FDA.

Patients who did not have a severe reaction during their first dose, and who do not have cardiovascular or high lymphocyte counts, may receive their second and subsequent doses in 90 minutes. The amount of Rituxan will be the same, but it will get in there a lot faster: 20% of the dose given in the firt 30 minutes, and then the rest given in 60 minutes. This change is based on a trial involving patients who took Rituxan along with CVP or CHOP.

Compare this to my own experience. My first dose of Rituxan took about 5 hours. I had to stop partway into it because I had an allergic reaction. A dose of medicine to counter that, and then a much slower drip, and I was on my way. Other doses took about 4 hours each, going fairly slowly, just in case there was an issue, though typically people only have a reaction with the first dose.

So this new protocol works things  a lot faster. If the patient sails through the first dose OK, there's really no reason to take things slower.

So who benefits by this?

Well, first, the patient. It sucks having to sit there for 4 or 5 hours. Dr. R has a nice treatment room, with comfy chairs, TV, books to read, snacks to eat. But it still sucks. Particularly for someone who is mostly asymptomatic, as I was -- someone who is living a fairly "normal" lifestyle, which is true of lots of fNHL patients. It would be nice to be able to get back to work, maybe, if that's possible.

The treatment host benefits. Open up a chair faster, if that's necessary -- get some juice into someone who needs it.

And who else benefits? Everyone. If we're trying to reduce costs for health care, which ultimately helps us all, then the faster infusions might just do that. A paper to be presented at ASH next month addresses that very issue, and concludes that reducing each Rituxan dose from 4 hours to 90 minutes saves $359. The number of doses given to a patient varies, but the paper's authors estimated that the saving would be $2,119 per course. [Thanks to Karl from Patients Against Lymphoma for pointing out that link to the support group.]

Seems small, but it adds up, given how many people get Rituxan every year. And imagine similar small savings for every cancer treatment, with no change in effectiveness. We'd really have something going there, wouldn't we?

Bald for Bieber

I can't believe I missed this, given that I have my tentacles in both the online cancer community and the social media community, but about two weeks ago some folks announced that Justin Bieber had cancer. They photoshopped some pictures and created tweets from a fake Twitter account, and eventually people believed it enough to set up a Bald for Bieber campaign. There was a web page, a Twitter feed, a nice YouTube video with alleged pictures of fans who had shaved their heads in support of the Beebs (with the promise of a free signed copy of his latest CD for those who sent in a picture of their shaved head). Most of it has been taken down, because, of course, it was all a hoax.

Two lessons here.

First, verify. I've read around a little, and I can't find evidence of anyone who actually shaved her head in support of Bieber. Lots of reports that people did, with pictures of people with bald heads or short hair, but nothing that proves anyone actually did it for Bieber. My goodness, I hope if anyone was actually going to do something like that, they'd make it was true, first. It's great when people actually shave their heads in support of someone they know and love (like the singer Kelli Pickler did a couple of months ago). But to do it on a whim for someone you've never met? At least make sure it's true. And that "verify" lesson holds true for pretty much anything you read online about cancer -- who has it, what causes it, how to cure it. Step back and think before you believe.

Second, let it roll off your back. In the aftermath of this hoax, there are people especially upset that this used cancer as part of a prank, and thus it makes light of cancer. I think this makes light of other things -- the passion of Bieber's fans, and the gullibility of lots of internet users, for example -- but it shouldn't cause a lot of hand wringing among cancer patients. It plays on a fear, especially one that would hit Bieber's young fan base especially hard, since it's so mysterious to the young. I saw someone comment that, really, this may just bring a whole lot of awareness about cancer to young people. I'm not so sure about that, not unless they have a very enlightened and caring adult in their life who sees this as a great opportunity for a learning experience. But, at the same time, we have enough to worry about to get too upset about some internet trollers who pulled a prank.

Really, we should be worried about Bieber. He's just had a bad breakup, after all.

ASH Conference

This year's American Society of Hematology (ASH) conference is coming up; it will take place in Atlanta, December 8-11. It's a big deal for blood cancer research. It's kind of a first step: researchers can present their early results to other hematologists, and get some excitement going. It's not usually for a while that we see final results, published in peer reviewed journals (that is, vetted and approved by other hematologists as being valid research).

In the next few weeks, we'll start to see press releases from universities and drug companies with excited descriptions of research. But it's important to remember that it's early research.

Now, I'm not immune to the excitement. Look back and you'll see me describing stuff that looks very promising. Some of that stuff has proven to be worth the excitement; some of it just kind of dies off and we never hear about it again.

That said, I will not give up on hope. I'll take the excitement any day.

According to the wonderful folks at Patients Against Lymphoma (at Lymphomation.org -- still the best site to go to if you want to start learning about lymphoma), there are 126 presentations about Follicular Lymphoma being presented at ASH this year, and PAL lists them all. I plan to look at most of them, and comment on the ones that I think seem worth getting hopeful about.

Doesn't that sound like fun? Stay tuned.....

Crowdsourcing a Cure

Election day.

Thank goodness.

I'm certainly not the first one to be sick of all of this. I'm ready to move on and accept whatever comes from here. What choice do I have? But this is America, and I know that in four years, there will be another chance to get what I want. Heck -- I'll get that chance in two years, when Congress is up for re-election. People tend to forget that last part.

In the meantime, I will have to accept the "wisdom of the crowd."

Speaking of "the wisdom of crowds" (a term popularized by the writer James Surowiecki, who argues thatthe collective work of many interested people is better than one person), I've been saving a nice article called "Crowdsourcing a Cure."  "Crowdsourcing" is the act of relying on multitudes to do work and help make decisions, much like what Surowiecki advocates. You know what "outsourcing" is -- sending jobs outside of a company. "Crowdsourcing" works the same way, but relies not on low-wage workers, but on volunteers -- people interested in solving whatever your problem is. It's how Wikipedia works. rather than relying on a single expert to tell you what's important, you rely on the collective wisdom of a whole bunch of people who are all seeking the truth. (At least in theory.)

The article describes a project in which researchers asked volunteers to look at tens of thousands of slides online. The slides contained pictures of breast cancer cells. If the volunteers spotted an abnormality, they flagged the slide, and researchers could then  further examine it later on. If just one person flags the slide, maybe it's not worth looking at. If dozens flag it, maybe it deserves some attention.

The "wisdom of the crowd."

And there are certainly problems with the approach. Sometimes, Wikipedia pages contain false information. And sometimes, there's probably a sicko who wants to lead breast cancer researchers down the wrong path, for whatever twisted reason. There will always be trolls.

But for the most part, crowdsourcing works. The key is work with people who are actually interested in solving the problem.

There's a pretty easy opening in that last sentence for someone who wants to be all cynical about Election Day. I choose to be hopeful.

It's the cancer patient in me.

Sandy Setbacks

We're still seeing the devastation of Hurricane Sandy here. Hard to believe that less than 100 miles away from in NYC there is so much destruction.

What really amazes me is the easily overlooked things that you hear about -- people whose lives are disrupted because they lost electricity or water or had some other damage. Not just the way our everyday lives are interrupted by those things, but how some of the special circumstances people live with have been made that much more difficult. A friend who is caring for her elderly father lost power, and had wisely prepared in advance a way to make sure his medications stayed cold. Then she had to take a day off of work because the building manager had to come to the apartment to check on any damage, and her father would just flip if a stranger was there without her.

It's no picnic for cancer patients, of course. In her excellent column for the New York Times, "Life Interrupted," Suleika Jaouad talks about the extra challenges from Sandy that she faced as a cancer patient -- things most of us wouldn't think of. A monthly chemotherapy appointment that had to be cancelled. The struggle to get in touch with a doctor to figure out how to deal with that. A mandatory evacuation into streets filled with sea water and raw sewage, and worries about infection that might come from that.

It's enough to make a cancer patient (like me) feel pretty damn lucky.

And then there's the sad set back to medical research. Thousands of lab mice were drowned when water flooded the basement of a New York University research center. I'm not sure what kind of research the mice were involved in, but apparently it will take years to get back to the point in the research where things stopped. Worse, it has happened at other research centers in the past, and it was preventable. We could debate the merits of using animals for research (I'm sure my son will debate it with me), but whatever your feelings about mice, it's sad to think that potential cures for diseases have been knocked back.

Hurricane Sandy hit a lot of people very hard. Think about donating to relief efforts if you can. If you're not sure where to start, the Red Cross is a good place to begin.

Happy Halloween

We lost power for about a day, thanks to Sandy, but we're up and running again and getting ready for Halloween.

Can't think of a better way to end October, celebrating both Halloween and the close of Breast Cancer Awareness month, than this:

Lance -- The Last Time, Probably

OK, one more post about Lance Armstrong.

I'll be honest -- I want to be able to defend him.

Doping is wrong, always has been, always will be, and it doesn't matter if everyone else did it. But he helped a lot of people. And I hope he and his foundation continue to help a lot of people. Will that be possible now? Will he be less of an inspiration to cancer patients?

I don't know. Two articles I read today complicate this. The first from Grantland, titled "Legends of the Fall." The subtitle is more relevant: "Lance Armstrong: A Liar, a Cheater, and an Inspiration."  It gets into the complications of this situation. Lance was an inspiration, and an unlikely one, given how few people actually care about bike racing. But his story became legendary, and his winning became necessary to keep the story going. And the story became necessary to help the people he wanted to help. It's all kind of complicated; read the story to see how. It's not as simple as I'm making it.

The other piece was from the New Republic, and it's called "Keep Rooting for Lance Armstrong." This is not as straightforwardly rah-rah as the title suggests. It's about how Lance was an inspiration for a cancer patient, and his mixed feelings about Lance (leaning toward the positive) and anti-doping crusaders (leaning heavily toward the negative).

I think all of this will fade away soon enough. It will be interesting to see how his foundation manages without him -- not without him as its chairperson, but without him as its symbol.

I think about how cancer organizations have taken such a big hit this year: Komen, the ACS, Livestrong. And maybe that's the lesson for how to view Lance: we assume (or want to believe) that anyone or anything  associated with helping cancer patients has to be genuinely good, whether it's a person or an organization. And it hurts twice as much to find out that people working for a good cause can do bad things, either in the name of the cause or somewhere off to the side. And it sucks to find that out, so it's easy to push it away and not believe it.

So I'm not going to devote too much energy to it. I've stowed away the lawn furniture and stocked up on jugs of water, and I'll wait out Sandy with my fellow East Coasters. More later, when the storm has passed.

Stay safe everyone.

Health

I ran this morning. My asthma has been acting up, and I have a little foot pain for a few minutes until I've warmed  up, and then I'm OK. Still, I went a little harder than usual today; I'm anticipating having to work off some fun-sized Almond Joys next week. Just two or three of them. Maybe 15. Hard to say. My wife has been wise enough to hold off on buying Halloween candy until the last possible minute, lest we have a repeat of the Mystery of the Disappearing Milky Way Darks of 2004.

So now, with that little bit of an extra effort this morning, I'm tired and my legs hurt. And I ask myself, is this really worth it? And I see exactly what I don't need to see at a time like this -- a time when I don't want to get off the couch, a time when there are special orange creme-filled Halloween Oreos in my kitchen. I see an article that says a large federal study of obesity has been cancelled after 11 years, because the results weren't what they expected.

What they expected was that all of the people with type 2 diabetes in the study would gain health benefits from all of that smart eating and exercising that they were doing. Instead, they found that there was no benefit. No decrease in heart attacks. No decrease in strokes.

It's enough to make me want to get a big glass of milk and say farewell to an entire sleeve of orange-creme-colored Oreos -- and all the ghosts, witches, and jack-o-lanterns on the 5 special Halloween themed cookie designs.

But I won't. Because I know exercise is good for cancer patients, especially those who are going through treatment. It helps us physically, even giving us a little more energy. It helps stave off muscle and bone loss. It might even curb nausea.

And it especially helps us mentally. It elevates our moods. It changes our perspective. It gives us a sense of control. It helps us develop perseverance.

So I will not get additional exercise today by doing a pull up off the couch and a spring to the Oreos.  I will continue to run three days a week. I will be good today.

Today. But no promises for next week.

Flu Shot

Interesting discussion in the support group today: should Follicular NHL patients get a flu shot?

We had some mixed responses, with some saying they were encouraged to get one, some saying they were discouraged, and some saying they were told not to, but were encouraged to tell everyone around them to get one.

For the record, I was told to get one when I was first diagnosed and visited the lymphoma specialist. It was January, at the height of flu season, and I hadn't had one yet.

But someone posted a link to a very recent article (published about a week ago) in the Journal of Clinical Immunology called "Rituximab-Treated Patients Have a Poor Response to Influenza Vaccination." The authors of the article seem to be specialists in Rheumatology, and Rituxan is used to treat disorders other than NHL, including rheumatoid arthritis. The authors examined 17 patients with rheumatology issues that had been given Rituxan and then a flu shot, and found that, as the title suggests, the response to the shot was poor. Only 16% had a four-fold increase in titer; this means that not many had a build up of the antibodies that are necessary to fight of influenza. This is the whole point of a flu shot: the body learns to recognize an invader and begins to develop antibodies that will fight it off when the real flu bug invades it.

The problem? Rituxan kills off the B cells that do all that fighting.

So it makes sense: give Rituxan; it kills bad B cells; it kills off good B cells; those cells can't do their job.

There was some speculation in the support group that maybe doctors were advising against a flu shot because those patients had been given Rituxan within the last 6 months, which is about how long it continues to work after the final dose. The authors of this study did find that there is some correlation between B cell recovery after Rituxan and success of the vaccine.

More time since Rituxan = more B cells = greater chance of success.

It all makes sense, but it's nice to have some evidence to back it up.

The takeaway? Get a flu shot. Unless you received Rituxan very recently, there's at least a chance that it will do some good. At the very least, it can't hurt.

And tell your loved ones to get flu shots, too.

Quality of Life

This is just an abstract or summary from an article, not the whole thing, but even a para graph says a lot.

Ethan Basch from Sloan-Kettering is the lead author on "Recommendations for Incorporating Patient-Reported Outcomes Into Clinical Comparative Effectiveness Research in Adult Oncology," published in the most recent Journal of Clinical Oncology.


"Patient-Reported Outcomes" are what they seem -- what the patient says the effects of a treatment are, in addition to more "objective" measures.

The article is recommending that these Patient-Reported Outcomes be included when results are reported for clinical trials. So while it's easy to report that a certain percentage of patients in a trial had a partial or complete response, and it's easy to report on certain side effects like hair loss, the authors of this article recommend that we try to do something harder: report on how individual patient's quality of life are affected.

That is indeed going to be hard, and among the nine key recommendations is "to assure that PRO measures used are valid, reliable, and sensitive in a comparable population"; in other words, to make sure that everyone is collecting the data in the same way, so things can be compared accurately.

 Especially with patients with a disease like Follicular Lymphoma (but really, with any cancer), when you're faced with a choice between a bunch of different treatments, it would be nice to say "I'm interested in making this thing go away, but I still want to be able to go to work." A stem cell transplant might have better overall survival numbers, but it might also knock you out of work for a while.  On the other hand, Bendamustine might not last a slong, but it won't have you flat on your back for quite as long. (I don't have the numbers for those two treatments in front of me, so don't take that as a recommendation, just an example.) It would be nice to have more information than just "percentage of patients who had a response" when we have to make that kind of decision.

It's a small step, but a necessary one. It will be interesting to see how it is received, and if researchers are comfortable with including data that's a little fuzzier than they might be used to.

Lance, Again

Well, it looks like it's over for Lance Armstrong.

The US Anti-Doping Agency released a 1000 page report last week, detailing all of the evidence against him. Lance resigned from his position as Chairperson of his Livestrong Foundation. Nike announced it was dropping their sponsorship; a bunch of others dropped him soon after the Nike announcement.

So, is this the end? Lance finally exposed as the cheat and liar that he is? Has he lost all the respect of the cancer community, now that he has had to drop the "cancer shield," as one writer put it -- that sympathy trump card he held because he was a survivor?

It's such a morally ambiguous situation, isn't it? You hate the cheater, but you love the survivor. You hate the liar, but you love the fundraiser. You ask if he could have ever raised the money he raised if he hadn't won, and you ask if he could have won had he never cheated. I don't know. I just don't know.

But I do know that there's been very little discussion of this issue in the last week among the cancer folks that I associate with online. When the accusations first came up weeks ago, I wrote here about the spirited defenses of Lance that cancer patients and survivors were putting up. The current silence might be interpreted as something like disgust, that people just don't want to admit that they were wrong in defending him. My guess, though, is that it's more that people are thinking that they said all there was to say, weeks ago, and they still support him.

As I've been reading others' reactions, trying to get a sense of where people stand, I came across an article by Ian Robertson called "Why Lance Armstrong is Still a Hero: 'Great Men are Almost Always Bad Men'." Robertson argues that any time you scrutinize someone's life, you find things that are bad. I think of Christopher Hitchens' well-known critique of Mother Teresa -- a hero to many, but a human being. I've often thought of how hard it would be to be named a saint in today's world, with so many more temptations, but also with so many more ways to be scrutinized.

And goodness knows Lance was no saint. Even apart from the cheating and lying, he was known to be a bully and an all-around jerk.

But, says Robertson, this is also a guy who stood up to testicular cancer that had spread to his lungs and brain. And then he got back on his bike and conquered mountains. Even if he hadn't won all those Tours, that would still all be pretty dang impressive, wouldn't it? That kind of courage is certainly worthy of admiration.

So that's where we are. A courageous man, but a flawed man. One who has ultimately done some good. And as a cancer patient, I hope he still, somehow, is able to do more good from here.

Insipid Victory

I've been going back and forth about whether or not to comment on a story from the Atlantic from about a week ago, called "Lymphoma and the Insipid Victory." Someone sent me a link to it, and I read it, and it didn't hit me the way a When I Found Out I Had Cancer Story usually hits me. I blamed it on being kind of busy.

And then when some Lymphoma people starting discussing it on Facebook (I don't remember which group it was), I looked a little bit at their comments, which were negative, but it didn't really hit me what that had to do with my own reaction.

So I read it again. And I followed along OK -- Yes, the anger at being told, not directed at anyone, and then finally coming into focus when he saw his wife and baby. And then  he finds out a little bit more about his cancer. He goes to Google, and finds out that Hodgkin's "usually hits males between the ages of 15 and 35 and over the age of 55." And he finds out that "its cause is maddeningly unknown. Maybe it was all the diet soda I drank or the road trip I took that one time to Three Mile Island, or the fact that I have a black cat that always walks in front of me when I'm on the treadmill." Ha. Funny.

Also, "It's a rare cancer, representing only one percent of all cancers in the U.S."

And he gets some good news. "Best of all, we learned that treatment for Hodgkin's lymphoma is pretty successful. According to American Cancer Institute statistics, the five-year survival rate is 85%, and ten-year is 81%. In researching, we also learned about non-Hodgkin's lymphoma, a related, but more serious and faster-acting cancer. I'd missed extremely bad news by three letters and a hyphen."

It was, upon re-reading, the NHL statement that bothered me. NHL is not "a" cancer, of course. And of its 30-60 different types (depending on who's doing the classifying),  a whole bunch of them are not "faster-acting." As we all know. As for "more serious"?  I don't know too many Hodgkin's patients who don't take their disease seriously.

And, in the end, that's what bothers me most. He really doesn't take this very seriously.

That's funny, maybe, coming from someone who spends a lot of time talking about how important it is for cancer patients to laugh at cancer. But that's not what I mean. He doesn't laugh at it, so much as kind of blow it off.

I get that a Google search isn't going to give you a whole lot of depth, especially about a disease that isn't your own. But the writer seems to be kind of willfully, maybe proudly, ignorant about his cancer. Which is fine when it's your own. I don't expect anyone to be as much of a Cancer Nerd as I am, and read the Journal of Clinical Oncology for fun. I know people, lots of people, who just don't want to know about their cancer, who want to put it in the hands of their doctor. (I have a friend with, ironically, Hodgkin's, who refused to even look at the bag of chemo when she was getting treatment.) And all that's fine. We deal with this thing whatever works for each of us.

But there's a difference between keeping it all to yourself and flaunting it in the Atlantic. "Flaunting" is probably a harsh word, but it bothers me when someone writing about cancer is uninformed. I don't think anyone would call Hodgkin's "rare." There are about 9000 new cases every year. Burkett's Lymphoma? That's rare. About 300 cases each year.

Is that being too picky? Maybe. But someone writing about cancer should have a better sense of what he's writing about, shouldn't he? Because when you're writing for the Atlantic, you're not just writing for yourself. You're writing for everyone who reads it, and you have a responsibility to get it right.

What upset people in the Facebook discussion most was this: "At no point, other than that one 45-minute car ride, was I looking death straight in its hollow eye sockets. My brush with it just wasn't bristly enough. Once it was discovered, cancer never really had a chance to kill me."

He means this to be praise for the current state of cancer treatment: science has come along enough, and his cancer was caught early enough, that even though the chemo made him feel "unrelievable agony. Nausea that wouldn't subside, aches that couldn't be soothed, weakness that wouldn't leave me."  It's just a little too dismissive, especially taken with the other statements he makes. Because some people with Hodgkin's aren't so lucky.

And this sounds funny, too, but it's a good article. I can see it's purpose: maybe someone reads it and thinks, "yeah, I'll be OK too." And there's certainly a purpose for articles like that. I just wish it was less about the writer's cancer, and more about cancer.

The comments at the end of the kind of share my ambivalence. Some people really liked it, some really didn't. Just as we all handle our cancer our own way, we all get what we want out of what we read.

Re-Mission

This is kind of cool: a video game aimed at teens and young adults with cancer.

It's called Re-Mission (cool name), and it aims to educate as well as entertain. The players follow a nanobot named Roxxi (sexy name), who travels through the bodies of cancer patients. As a nanobot (that is, very, very small robot -- a product of that nanotechnology that I write about occasionally), Roxxi is able to get into very small spaces to do battle. Like an video game hero, Roxxi goes through different levels, fighting bacterial infections and other side effects of cancer and its treatment. The kids learn a little something.


The game was created by a company called HopeLab, and they did something neat after they created the game -- they ran a clinical trial to see if it would do what they'd hoped it would do. They had 375 patients at 34 medical centers receive a computer. Half of the patients recived a computer with a game; they other got a computer with the same game plus a version of Re-Mission. The results showed that the patients who played Re-Mission "maintained higher levels of chemotherapy in their blood and took their antibiotics more consistently than those in the control group, demonstrating the game’s impact at a biological level. Participants given Re-Mission also showed faster acquisition of cancer-related knowledge and faster increase in self-efficacy." They published the results in the medical journal Pediatrics.

Best of all? The game is free. Order it through the link above.

I've seen a demo of the game (I didn't order it; it's for "young adults," which, naturally, gets cut off at 39. As with so many cool cancer-related things, I was diagnosed 6 months too late to get in on it).

(Really, anyone can order it, even if you're old like me.)

Anyway, I've seen a demo, and it's pretty cool. But, Cancer Geek that I am, I'm even more fascinated by the clinical trial that they ran. That kind of kicks butt.
 

Rituxan

Just when you thought we knew everything there was to know about Rituxan....

A new study from Austria found that among Follicular NHL patients, women respond much better to Rituxan than men do. Also, the "volume of lymphoma cells" plays a role. Combine the two and, according to the head of the study, "This means that men with a large tumour or bone marrow infiltration respond poorest to antibody therapy, while women without bone marrow involvement and a small tumour respond best."

Here's where, in my opinion, it gets fascinating: Why?

Is there something in the genetic make up of women's lymphoma cells that makes them take to Rituxan more readily?

Or is it something simpler -- women generally have smaller bodies, and so the dosage is enough for them, but not enough for (generally) larger-framed men?

We need to find out. And that's where it gets interesting. There hasn't been a ton of research on Rituxan lately, other than two-armed trials that test newer monoclonal antibodies against Rituxan, to see if the new one is an improvement on the old standard.

I've read a little bit about how the standard dosage of Rituxan came about -- pretty much randomly. The standard dosage for NHL,  no matter the type, is the same. But Rheumatoid Arthritis patients (they also benefit from Rituxan) get a dose almost 3 times as large. So it's not like the body can't handle more. The initial dosing was chosen, well, not exactly randomly, but it was chosen for a reason, and it worked, and it's never really been messed with.

But, if we look at this new study and decide that, well, maybe it is a question of body mass, then we might be looking at some dosing trials to see if different levels produce different results. As the linked article notes, "The study has shown that blood concentrations (serum concentrations) in women are around 20 per cent higher than in men over the period of treatment with Rituximab. Women achieve saturation of the blood concentration with the antibody during the fourth cycle of therapy, significantly earlier than male patients." So maybe we need to front-load the Rituxan for men, giving much higher dosesin the earlier rounds, to achieve the same kind of sayuration that women get?

It's going to be interesting. It will be a few years before anything comes of this, but it might also mean re-figuring dosages for all those other monoclonal antibodies that do a great job, but not a hugely better job than Rituxan.

I don't think we'll see an explosion of new Rituxan studies, but maybe what we will see is a redosing of Rituxan or other MABs in combination studies. Maybe when rituxan is combined with one of those funky 3rd generation protease inhibitors, the dosage will go up from 375 to 500 mg/m2.

Total guess, but it's always fun to look back later and see just how right I was.....

50/50

I know it first came out almost exactly a year ago, but I finally got to see the movie 50/50. I really liked it. I think it says a lot about the emotional trials that cancer patients go through.

The movie is about a 27 year old man named Adam who is diagnosed with spinal cancer. It was written by Will Reiser, a TV and film producer, who was diagnosed with cancer in his early 20's, and it's based on a lot of his experiences. It co-stars Seth Rogan, who was Resier's best friend in real life, and plays Adam's best friend in the movie.

Adam is, of course, shocked by the diagnosis ("That doesn't make any sense," he says to the doctor. "I mean, I don't smoke, I don't drink... I recycle..."). He's a good person who gets randomly hit -- like most of us.

The movie deals with what he has to go through physically, but really, it's about the relationships he has with other people. His girlfriend, a self-centered artist, can't deal with his illness and cheats on him. His best friend sees the cancer as an opportunity to meet women. His mother wants to help,but is also dealing with Adam's father's Alzheimer's. His co-workers have written him off for dead, and say everything to him that you shouldn't say to a cancer patient. His therapist is 24 years old, inexperienced, and sees him (at first) as part of her doctoral dissertation.

All of those relationship issues were the part that I liked most, and thought were very realistic. Everyone deals with someone else's cancer in their own way, and it's often not the way we want them to deal with it. The bigger problem is, we often don't know how we want them to deal with it, exactly.

I read an interesting review of the movie in Slate.  The reviewer had some problems with the film, particularly with the way Adam was portrayed. She says, "But Katherine [his therapist]’s not the only one who fails to get to the bottom of what Adam’s feeling: For the majority of the movie this quiet, sardonic young man remains impenetrable to the audience, too. Gordon-Levitt, a generous and versatile actor, rarely gets the chance to play anything beyond stoic repression" [until a couple of crucial scenes pop up].

I think she misses the point -- and it's certainly a point that the writer would have understood perfectly. We don't know how to act. We're trying to deal with the sometimes off reactions of the people around us. We're trying like hell to keep it together. If that looks like stoic repression -- keeping a straight face and holding it all inside -- then that's probably what it is. I'm glad the reviewer has never had someone close to her have to deal with cancer. I hope it stays that way for her.

Of course, this is a movie, and not real life. I get that, and I know a movie reviewer's job is to think about a movie as a movie, not as an emotional map for cancer patients. If this was a real movie, the anesthesiologist wouldn't have started the drip while still in Adam's room, instead of in the operating room, and Adam wouldn't have been asked to consider organ donation. And, I hope, in real life every medical professional wouldn't be quite as insensitive as they were in this movie. Really. They weren't monsters, but they were all kind of clueless about his feelings.

So I can't help but make a connection to real life. And here's the really sick part, the part that lets me know I'm about as deep into this whole lymphoma thing as I can get. At his first chemo session, Adam meets two other patients, one of whom has metastatic prostate cancer and the other "stage III lymphoma." Adam encounters them several more times in the chemo room. The prostate cancer patient has lost his hair; the lymphoma patient has not lost any. So I start figuring: OK, what are the chances that all three of them are on the exact same treatment schedule, that they're always in the treatment room together? I don't know standard treatments for the other two, but "stage III lymphoma" can be a million things. Let's narrow it down: no hair loss, so maybe he's on Rituxan? Or maybe Bendamustine? Off the top of my head, I know Bendamustine has a 21 day treatment cycle, with infusions on day 1 and 2. If Adam's spinal cancer is that aggressive, let's assume he's getting treatment weekly -- maybe every two weeks. That means Bendamustine is probably out for the lymphoma patient; Adam wouldn't see him weekly. Unless he's talking B + R, in which case he's been in for weekly Rituxan infusions. And that would explain the lack of hair loss, given the toxicity profile for B + R. And the lymphoma patient is snacking on marijuana-laced macaroons, probably to curb side effects like nausea that might come from Bendamustine. So, I have to say, the lymphoma patient either has Follicular NHL (or maybe Chronic Lymphocytic Leukemia, but they wouldn't have called it Lymphoma if that were the case), probably relapsed, and he's early in his 8 cycles of Bendamustine plus Rituxan.

Yes, that's the kind of thing I think about when I watch movies.

And this was a good one.

Pinktober

I need to link to Betsy de Parry's column "Breast Cancer Awareness: The Problem with Pink," which appeared on AnnArbor.com this morning. If you're a long-time Lympho Bob reader, you're familiar with Betsy; I link to her work often, because she's a sensitive and insightful writer about cancer-related issues (partly because of her own experience as a survivor of NHL).

In the column, Betsy talks about some of the issues she has with the way Breast Cancer Awareness Month is handled. The issues aren't new, and they're not Betsy's alone. But she does a nice job of laying them all out together in one place.

And I'll be honest -- when I bought bread last week, and the wrapper was pink, my first thought was, "Here we go again."

It's not that I'm against cancer awareness -- it's kind of a theme of the blog, after all -- but, like Betsy and a lot of other commentators, it seems like October has turned into something else besides a genuine desire to raise awareness. (The whole idea begs the questions -- who are we trying to make more aware? And in what way will buying pink-wrappered bread make me more aware of what it is I'm supposed to be aware of?) Is it really about awareness? Shouldn't it be about curing breast cancer? Does all of the pink merchandise really contribute something useful? Hard questions to ask, and doing so can make you a target, but they are questions that are being asked more and more.

As Betsy points out, the awareness campaign, in the end, might narrow what we know about breast cancer, and about all cancers. For example, the pink campaign shuts out men, who get about 1% of breast cancer diagnoses. Far from contributing to awareness, the pink color ends up making many men hide their diagnosis, since it's a "woman's disease," as emphasized by all of the pink everywhere.

Betsy also points out something I didn't know -- that women with metastatic breast cancer tend to be shunned by mainstream survivor groups. According the "Pink Elephant in the Room" Campaign, it's because these patients are considered beyond help. Little research money goes to helping their version of the disease.

And then there's the Komen problem. I've written about it before, so I won't rehash their problems with making political decisions without informing supporters first. Betsy points out their Trademark problems: they changed their name to "Susan G. Komen for the Cure," and have threatened legal action against anyone who uses "for the cure" as part of an event. ("Cookies for the Cure," for example, if someone is selling cookies to raise money for breast cancer.) Seems like their priorities are way out of whack. Instead of keeping the focus on the big picture, on the cure itself, they're worried about protecting their brand. It's all part of the pink blanket.

I wish I had better feelings toward Pinktober. Awareness is vital, especially with a disease where early detection can save lives. But it seems like a rethinking of things is in order.

Thanks, Betsy. Nice article.

ASH Preview

It's never too early to start thinking about the future.

(Hey -- I like that. I may put that on a t-shirt.)

(OK, just looked it up, and about a million colleges use it as an admissions slogan. Anyway....)

The annual ASH (American Society of Hematology) conference takes place this year December 8-11 in Atlanta. There's always something good that comes out of ASH -- usually a whole lot of things that are good: preliminary clinical trial results, final trial results, initial theoretical research. It's basically Blood Cancer Woodstock.

No word yet on what the presentations will be -- that usually comes in November -- but we can get a preview from Dr. Andrew Zelenetz, Head Lymphoma Guy at Sloan-Kettering (and thus someone who is probably worth listening to).

Zelenetz focuses especially on one type of blood cancer -- chronic lymphocytic leukemia (CLL) -- and a trial for a Bcl-2 inhibitor (which might also have some relevance for NHL, too). Bcl-2 stands for "B cell lymphoma 2," and describes proteins that seem to be responsible for the chromosome switch that causes follicular lymphoma, but also seem to be implicated in allowing a bunch of other cancers to develop. Treatments that inhibit Bcl-2 would, obviously, stop them from doing their job.

Zelenetz also anticipates an update on the CAL-101 trial. I know a few people who have had some success with CAL-101. Looking forward to hearing more about what's going on there.

It's a pretty quick preview -- 2 minutes long -- but it's starting to get just a little bit more exciting around here....

Genius? No.

Once again, the MacArthur Foundation has given out its annual Genius Grants -- $500,000, paid over 5 years, with no strings attached.

Once again, I didn't win one.

And once again, I don't understand why. I've done everything I could to let them know I'm a genius. Which has consisted mostly of putting "Super Genius" under "Occupation" on my Blogger profile. But still.

(According to Blogger, there are 26 people who list "Super Genius" as their occupation. I don't know if any of us has ever won a MacArthur Fellowship/Genius Grant. And that's not fair.)

I always find some comfort, though, in knowing that the MacArthur people are smart enough to recognize at least one brilliant cancer researcher every year, and this year is no different.

One of the winners is Melody Swartz, a researcher at a university in Switzerland whose name I cannot spell (because, you know, apparently I'm not a genius). Prof. Swartz studies the way fluids move through tissues, and her research has helped to explain the relationship between tumors and the immune system -- how tumors resist the immune system, and how the immune system responds. She brings to her research a background in biophysics, molecular genetics, and some other sciences. She has a PhD from MIT, and did a postdoctoral fellowship through Harvard, working at Brigham and Women's Hospital in Boston. (She really kind of is a genius, even without the official approval from the MacArthur people.)

So, once again, I come away empty handed. I'll sulk until the Nobel Prizes are awarded, and then keep my fingers crossed.

(Optimism is a very attractive quality in a cancer patient....)

Follicular

Well, it's time to say Goodbye to Lymphoma Awareness Month. I thought we'd close it out with a focus on Follicular Lymphoma.

Literally. The Lymphoma Research Foundation website published "Focus on Follicular Lymphoma" featuring an interview with Dr. Stephanie Gregory from Rush university Medical Center.

 There's nothing earth-shattering in the interview; she's asked questions about diagnosis, current treatments, future treatments, that kind of this. It's a nice summary of the state of things for fNHL.

And I guess that's as good a way to end Lymphoma Awareness Month as any. Take stock of where we are, and think about where we're going.


As for me? I'm too busy for too much reflection right now. And that's a good thing. Work is good. The family is happy. My health is relatively good. I'm ready for the future.

More W & W

Cartoon from this week's New Yorker.

(Original source here.)












Nice.

Watching and Waiting in the News

The Journal of Clinical Oncology's latest edition includes an article on the effectiveness of Watching and Waiting as an initial treatment strategy for low-tumor burden Follicular Lymphoma.

(I can't get the link to the article to work, so here's a link to a piece from Doctor's Lounge that reports on the JCO article.)

Basically, the article says that Follicular patients that don't have symptoms, and have more than 4 node clusters affected, are more likely to need treatment sooner than those with fewer affected nodes. The study compared people who watched and waited to those who had treatment right away with Rituxan or Rituxan plus something else. The researcher looked at FFTF rate -- Freedom from Treatment Failure -- how long it took for their initial treatment to stop working. In the study, 79% of Watch-and-Waiters went four-years before Treatment Failure, while 69% of the Rituxan group went four years.

So, more evidence that Watching and Waiting is OK.

Which, frankly, is fine with me. I don't need to know that W&W is better than being treated right away. I've been there already. But I do like hearing (yet again) that it's a valid option. For the right person, W&W can be a good thing.

For the right person. That's key. In the same issue of the JCO, Lymphoma Rock Star Dr. Bruce Cheson writes an editorial called "Waiting is the Hardest Part" (for some reason, I am able to link to this JCO article). Dr. Cheson takes a clinician's view of W&W, pointing out "One of the more challenging conversations to have with a patient is one presenting a new diagnosis of an indolent and treatable type of cancer that is incurable but for which the plan is not to offer treatment but merely follow-up with the patient every few months to see what happens." Challenging because, for some people, W&W is a relief -- we can hold off treatment for a while. For others, it's a burden -- emotional, psychological, spiritual, just waiting for "the crescent blade in Edgar Allen Poe’s 'The Pit and the Pendulum' ... swinging overhead with its ominous descent 'inch by inch, line by line, ... at intervals that seemed like ages'."

(A Poe reference in a medical journal. That's why he's a rock star.)

It's an apt reference, though, as we watch and wait for the bad thing to come, that will be our doom. In the end, says Cheson, watching and waiting is not "intellectually satisfying." I assume he means for the doctor. Once we all get over the emotional part of things, and look at the situation rationally, then W&W makes sense. But "rationally satisfying" isn't "intellectually satisfying." What we need, if we really want to get rid of W&W, is a better option -- one that comes with minimal side effects, and the promise of a cure.

And, as he points out, we are moving in that direction. Combing Rituxan with other "biologic agents" (other variations of monoclonal antibodies that target different surface proteins than Rituxan targets) are showing some good results. So are the various kinase inhibitors that are being developed.

So why choose Watch and Wait? The main reason, says Cheson, is "optimism." The belief that what might come will be better than what we have now, and holding off treatment will mean more options later.

I like that. Even more than I like the Poe reference.

Marijuana and Cancer

Medical marijuana has been available for a while now, and it is known to relieve symptoms associated with some diseases and with certain treatments. But now some researchers are showing that compounds in marijuana might actually stop cancer cells from growing.

Two researchers at California Pacific Medical Center, after 20 years of research, found that the compound called Cannabidiol affects a gene called ID-1, present in certain aggressive cancers. The Cannabidiol stops cancer cells from growing, and stops the tumor from creating new blood vessels to feed it. The early research has shown success with a number of aggressive cancers -- breast, prostate, and brain.

The compound has already been used with other, non-cancerous diseases; it relieves nausea and anxiety, for example. And all indications are that it is non-toxic, so side effects should be minimal.

The researchers are hoping to start clinical trials very soon. That means it could be some time before anything comes of this, but it certainly appears promising.

It's easy to joke about this ("Researching for 20 years? Wonder why that marijuana research went soooooo slooooowly?") But it really does seem promising. There's actually a pretty long line of research into marijuana as a direct treatment for cancer, rather than just a way to manage symptoms (the Daily Beast offers a quick review as they describe this current research). It's controversial, naturally, and there are plenty of people who would rather not encourage marijuana use for any reason.

But I say, explore away. Anything that might help fight cancer is fine with me.

(You were probably expecting another marijuana joke, huh?)

Anthems

This morning, I was sitting on the couch, avoiding work, when I heard the faint notes of a saxophone -- my son, in his room, rehearsing some pieces for an audition next month.  He was playing "Is You Is or Is You Ain't," which might be part of the audition. Or it could just be a piece that he was messing around with from a book of jazz standards he likes to mess around from. He was probably avoiding work, like I was doing.

I'm sitting here now thinking about the strange history I have with "Is You Is." I first heard it when I was a kid, when Tom Cat sang it to woo someone in a Tom and Jerry cartoon. Then I heard it again, a few years later, when I was in Italy, when a friend made a mix tape with dedications to a bunch of us. I don't even remember what song she dedicated to me, but the song I kept playing on the tape was Joe Jackson's version of "Is You Is," dedicated instead to my friend John, The Guy Who Always Wore Motorcycle Boots and a Mechanic's Shirt with Someone Else's Name Stitched On It. And then, after Isabel and I were married, another friend sent us a Louis Jordan tape -- with "Nobody Here But Us Chickens," "Five Guys Named Moe," and "Is You Is," among others.

I love that there's a song that keeps coming back to me, from so many different parts of my life. There are others, of course. But this one is nice because it's kind of random; it's not like I was a big Louis Jordan fan when I was a kid or anything.

Moments like this remind me that Isabel and I always said we wanted a house full of music. When the kids were small and the weather got colder, we used to play music for them after dinner. Their introduction to the Beatles, Bob Marley, James Taylor, Buckwheat Zydeco, some occasional Bruce Cockburn or Smiths.

I think a lot about the role music has played in my life; it's hard not to do when you have kids that are musicians. And ironic, since I'm such a crappy musician myself. But I love to listen, and I've been known to belt one out on occasion. Thinking about all this made me think about a column from Mary Elizabeth Williams from a few weeks ago. It didn't take too long for me to find it.  She writes about something similar -- how music has been an influence in her own life, especially after she was diagnosed with cancer, and how the experience changed the meanings of the songs she has loved.

Williams says, "We apply our most magical thinking to our favorite songs, playing them in endless loops and singing along as if in prayer." I agree wholeheartedly. (She's such a good writer....) I've mentioned before that music has been almost a part of my emotional therapy through all of this. I can latch on to a song and play it over and over again, part of that magical thinking, almost a prayer. Sometimes, it's to find some message, to make sense of what's going on with me. I wrote on my 4 year cancerversary about how some songs helped me sort through some of my mental struggles, trying to answer the question, If cancer changes me, who am I supposed to be? I'm not sure I've ever answered that question fully, but the music certainly made the process more pleasant.

Williams says we all need an anthem -- an inspirational song, maybe a whole list of them, to help us through struggles. I've had plenty of those, too, and I've worn out my iPod listening to them. Dropkick Murphys, "Shipping Up to Boston." The Hours, "Ali in the Jungle." Jack's Mannequin, "Swim." All good running songs, too.

My anthems help me visualize bad things turning into good things. The story that I tell myself changes occasionally, but in the end, I always feel better. Bad into good.

"Is You Is or Is You Ain't" doesn't really fit this "anthem" category, though in some ways it's the perfect anthem for the watching-and-waiting, cancer-that-can't-decide-what-it's-doing, always-kind-of-in-the-middle Follicular Lymphoma patient.

It's quiet upstairs now. He's stopped playing sax, and already been on Facebook to complain about his geometry homework, and I've listened to my cancer anthems, since I had to find the links to their videos. We went apple picking earlier on this beautiful fall New England day. It's a good day. A happy day. Not just because there's music, and Macoun apples, and fall in the air and a dog at my feet. There's relatively good health, too.

And there's a daughter asking what's for dinner, and begging to watch the movie version of the play that the kids will be putting on at school this spring.


The movie? The Sound of Music.

(As my friend Sarah says: Truth.)