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.