Bald Barbie Update

Mattel is manufacturing a bald Barbie doll named Ella. This is kind of a big deal.

The saga of the Bald Barbie began in January 2012, when some folks set up a Facebook page asking Mattel to create a bald Barbie doll for kids with cancer who had chemo or other conditions that might have caused hair loss. No one really noticed until a blogger for the American Cancer Society made some very dumb statements about kids with cancer, and the Facebook page got a lot of play on social media. Eventually, the page got over 100,000 likes, American Girl and Bratz agreed to create bald versions of their dolls, and Mattel, finally, agreed to create Bald Barbies to be distributed to hospitals.

And that's where we have been for a little while -- Mattel has been creating a version of Barbie named Ella for distribution at children's hospitals. But apparently, not enough of them. A mom created a Change.org petition asking Mattel to create more of them (apparently, the hospital where he daughter was being treated for Leukemia only had 6 dolls).

She got over 100,000 signatures (that seems to be the number that gets Mattel's attention), and now Mattel has agreed to step up production of the Ella dolls.

On the one hand, I'm not crazy about Mattel's response. Like the first time around, they seem to need some real nudging when it comes to this doll. I understand their desire to protect the Barbie brand, but it seems like maybe the guy who wrote the ACS blog post is doing the Mattel public relations -- how could they think that helping kids with cancer could be anything but good publicity? Why the need for a big nudge?

That said, Mattel did eventually step -- both times. They may have dragged their feet, but in the end, they did make the dolls.

I thought the idea for a bald Barbie was great two years ago, and I think it's great now. Whatever it is that helps people get through their cancer -- whether they are men, women, or children -- is a good thing, and I admire companies that step up and do the job.

Of course, not everyone steps up, exactly......

Scan Results

I got the CT scan results from Dr. R -- things look great.

It was a short conversation, since I was driving when he called (my wife put the phone on speaker and held it up so I could hear).

Dr. R said there were a few swollen nodes on the scan, but nothing terribly large. The biggest ones were a little over one centimeter; generally, anything smaller than a centimeter is considered "normal."

All of this seems like an ever-so-small improvement on the last scan I had, from three years ago. And that one was an improvement over the scan I had right after my Rituxan treatments.

So is this a matter of Rituxan continuing to hold things off, four years after I had it? Maybe, but not likely. Rituxan generally does its job for about 12-18 months (if I'm remembering correctly), though that's a median, so half of patients will do better than that. So Rituxan is probably playing at least some role.

I'm going to be cautious, though, and say that I'm also benefiting from the "waning" part of this waxing-and-waning disease. (I think "waning" means slowing down, right? I get them mixed up sometimes. Why does "waxing" mean "getting worse? What a weird phrase.)

Anyway, whatever caused my good scan, I've always said that Rituxan was my bestest pal, and I'm not going to stop now.

So it's a good day here at Lympho Bob Manor.

Stay hopeful, everyone.

Scan Today

I had my CT scan this morning.

It was mostly uneventful.

In the past, I went to the hospital for my scans. But since the hospital merged with another, I can go to one of the satellite offices that does scans, mammograms, and blood draws. Much closer, much easier parking, and generally one less thing to stress about.

After I checked in, the tech called my name, and walked me to the elevator we needed to take to get to the basement-level room where they would do the scan. On the way dawn, she looked at my file and said, "You've had a scan before, then?"

I told her I had, and mentioned how much I disliked the barium milkshake that I got at the hospital. She said they didn't do that thing at this place. I said, "YAAYYY!" probably too loudly. She turned to me and said, "But the stuff I'm giving you is no picnic..."

"YAAAAAAAAAAAAAAYYY," I said, much more quietly.

It turned out that stuff wasn't half bad. It's called Breeza, and unlike that nasty, thick milkshake-y thing, this was a clear liquid, the consistency of water, but in a delightful fruity flavor, as indicated by the pictures of various cut fruits on the bottle. I still had to drink two 16 ounce bottles, but I was done in five minutes, as opposed to the half hour it took with the milkshake.

I watched Good Morning America for the remaining 55 minutes of my wait (Hello, cancer survivor Robin Roberts! And Peanut, the World's Ugliest Dog!)

And then the scan itself. Easy. The usual tasting the saline in the back of my throat, and the weird hot feeling when she injects the contrast, but overall, no problems.

Despite the Breeza, I still ended up with stomach cramps, and I was exhausted when I got home. I took a little nap about 12:30, and woke up with barely enough time to get to physical therapy.

I still felt yucky, but I went anyway.

And if you read my entry yesterday, you're wondering -- did he play the cancer card?

Yes. Yes I did.

The aide called me in and, as she was setting up the machine that warms up my shoulder, asked me how I was feeling. I told her "Horrible -- I had a CT scan this morning."

"Oh, really? What for?"

"I'm a cancer patient."

"WHAT?!!" she said, panicking.

I explained that I had Follicular Lymphoma, and that it is a slow-growing blood cancer, and that I've been living with it for over six years. She calmed down some. I felt bad about doing it. I don't like to spring the cancer thing on people. I know the word freaks people out.

But she passed that news on to the Physical Therapist, and he did go easy on me. It was still a workout, and I left there sore, but he kept a couple of the more aggressive exercises out of the routine, which I appreciated.

So now it's a matter of waiting for the results.

Despite my scanxiety, I'm feeling OK about it all. As I said, there hasn't been anything happening that would make me think that there's a big problem waiting to be revealed.

And if there is, we'll deal with it.  It's what we do.

Scan Tomorrow

I go for a CT scan tomorrow morning.

I'll confess, I'm feeling a little bit of scanxiety. Not too much, but a little.

And the scanxiety kind of snuck up on me, too. I realized yesterday, after reading someone's lymphoma story on a Facebook post, that I was feeling just a little twinge of anxiety about the scan. I kind of thought back a little bit over the last few weeks, when I looked at other Facebook posts, or at things that people posted in the support group, and I realized that I've been having some slightly negative thoughts lately. Slightly.

And then last night, as I was getting undressed, I felt a little pull in my lower abdomen, near the hot spot that made my leg swell up four years ago, that led to Rituxan treatments. I quickly felt around for swollen nodes. Nothing. The pull was more likely because I walked up a big hill with my son yesterday for the first time in almost 6 months.

But it's funny how all of that comes rushing back to you.

It's been more than 3 years since I've had a scan, and that scan was a good one. My blood work has been great in all that time. Other than my shoulder surgery, I haven't had any real health problems since then.

I think we take comfort in things that are familiar to us. I'm not saying there's anything comforting about a bad scan, or about anticipating one. But sometimes we fall back into what we know. The routine that we're used to. And maybe getting a little worried about the scan is the thing I know? It's what I'm used to? And just going through the motions of the thing I know is easier than thinking about the things I don't know, like how this scan is going to turn out. Worrying a little bit is better than panicking a lot.

For now, I'm just putting it out of my head. I do my best to let the rational fight off the irrational -- my blood work has been good, I don't have any weird lumps popping out anywhere, my overall health is fine. So what is there to worry about?

What I will not accept is someone telling me not to worry. It's my right as a cancer patient to have some anxiety, especially about a scan. Don't let anyone tell you otherwise.

And what I'm not worried about, but what I am not looking forward to, is the whole scan process. I'm going to a different place this time, so maybe I won't have that horrible Barium Pina Colada Milkshake forced on me. But I'm guessing I will.

I'm going to look on the bright side of all this -- I have a physical therapy appointment tomorrow afternoon, and the PT has been pushing me harder lately. When I see one of the nice young ladies who takes me in and warms up my shoulder before I see the therapist, I'm going to tell her that I had a scan, and that the Barium Milkshake wipes me out. She'll ask why I had a scan. I'll tell her I have cancer. She will run to tell the therapist -- I've never mentioned my lymphoma to them -- and I will have an easy day of therapy. No one wants to be mean to a cancer patient.

Will I shamelessly play the cancer card? You bet I will.

I'll let you know how it goes tomorrow afternoon -- the scan, and the (hopefully light day of) physical therapy.

Dr. Bruce Cheson on Indolent Lymphoma (Video)

Hot off the press, just posted this morning -- so new that there are only 7 views, as I write this:

A video featuring Lymphoma Rock Star Dr. Bruce Cheson of Georetown,  presenting the keynote address at the International Waldenstrom Macroglobulinemia Foundation Educational Forum in May, in Tampa. (Waldenstrom Macroglobulinemia is a type of indolent NHL like Follicular Lymphoma.)

Dr. Cheson's talk is called "Progress in Indolent Lymphoma: Is Chemotherapy Dead?"

So while this isn't about Follicular Lymphoma specifically, it is about current and future ways of treating indolent lymphomas, and the treatments he discusses are already in the Follicular arsenal. As the title suggests, his focus is on lymphoma treatments that he believes will replace chemotherapy very soon, since they are more focused and potentially personalizable than traditional chemo.

I'm linking the talk above, and embedding it below, but here are some highlights:

First off, after the introduction, Dr. Cheson walks to the podium carrying a glass of red wine. He keeps it with him throughout the talk. Am I joking when I call him a Lymphoma Rock Star? Hell no. Total Rock Star move.

To the meat of his entertaining and informative talk:

He gives a nice (and brief) historical overview on indolent lymphomas and the use of chemotherapy, particularly CHOP, in treating lymphoma.

He then discusses the alternatives: Antibodies (like Rituxan) that target the surface of the cancer cell.
Treatments that target pathways, like Ibrutinib and Idelalisib, which disrupt the processes that keep cancer cells alive.
And combinations like Lenalidomide (a.k.a. Revlimid) + Rituxan, now being studied in the RELEVANCE Study. Dr. Cheson believes the R squared combination "could very well change how we approach patients with indolent lymphomas."

He also makes clear that cancer cells are tricky, and one of these types probably won't be The Answer. Instead, he can see some combination of, say, and monoclonal antibody with a kinase inhibitor or two, with a dash of anti-PD1 added for good measure, to take care of the microenvironment. As we learn more about the way cancer cells work,we also learn about how all of these various targets interact with one another.

W still have lots of questions to answer, though, like How do we match a patient with an effective treatment, and truly personalize the therapy? And when we treat Indolent NHL, like Follicular Lymphoma, do we treat it as a chronic disease, controlled by a daily pill forever? Or do we go for a cure? (Incidentally, Dr. Cheson would rather go for a cure.)

But none of this happens without patients being willing to participate in clinical trials. Dang few of us do that now (myself included).

(How do you participate in a clinical trial? Well, for starters, Lymphomation.org has some good advice.)

One final thought: Dr. Cheson says that lymphoma is presentable. He cites an article from his favorite journal that shows how. But you'll have to watch the video to the end to find out how.

But it's definitely worth 28 minutes of your time to see a Lymphoma Rock Star describe the state of the art in Indolent Lymphoma treatments.

Enjoy.

ASCO: PET/CT for Follicular Lymphoma

OK, one last look at the ASCO conference from what now seems like months ago, but which as actually just a couple of weeks ago.

I was going to skip over this, but I've seen a couple of commentaries on it online, so it's probably worth mentioning here:

Researchers from a number of cancer research centers presented "Prognostic Value of PET-CT After Frontline Therapy in Follicular Lymphoma: A Pooled Analysis of Central Review in Three Multicenter Studies." The researchers were trying to determine if a PET-CT scan, rather than just a CT scan, can predict Progression Free Survival (PFS) and Overall Survival (OS) in Follicular Lymphoma patients after they have had chemotherapy + Rituxan for their first treatment.

I won't get into the difference between a PET and a CT, other than to say a CT provides a nice picture, while a PET gives information about how whatever is in that picture is behaving. (See Lymphomation.org for an overview of PET scans.)

For this study, the researchers looked at the PET scans of patients from three larger studies of Follicular Lymphoma, 246 in all. (Note: This is actually a combined PET and CT scan, but I'm just calling it a PET because I'm too lazy to add the -CT.) They evaluated the scans using a 5 point scale known as the Deauville citeria, which measures how much activity the PET scan has measured. Each scan was looked at and scored by three different people. (It's worth noting that while a PET is a very scientific instrument, the way that a PET scan is interpreted can vary from person to person, which is why they had 3 people looking at each scan.)

What they found was the PET scans were predictive of PFS and OS. That is, if a scan was deemed "negative" (little or no cancer), then PFS and OS were likely to be higher -- the disease would take longer to return, and the patient would live longer. On the other hand, a postive PET scan (evidence of cancer, or an increase in cancer) meant a shorter time before the cancer returned, and a shorter survival.

The value of a PET scan right after treatment, then, is in predicting how well that treatment was likely to hold.  The researcyhers suggest that a PET at this time should be the "new gold standard for response assessment," though they also say this evaluation should be repeated to make sure it really works as well as it seems to work.

A few thoughts on this.

First, and most importantly, looking at the numbers, it would be easy to slip into panic about this, and think that a bad PET after treatment is over means that things are hopeless. Not so. In fact, if these researchers are right, it should be cause for hope, because the PET is should be considered a "platform for response-adapted therapy." In other words, the PET can show very early whether or not a new treatment will be needed. Less waiting around and wondering if it worked, and more time to take action.

On the other hand, despite the researchers optimism, this does seem like a fairly limited study. It looks at a particular group of patients -- first treatment with chemo + Rituxan. That leaves out people who have had straight Rituxan, as well as those who have had other Cool New Treatments. I don't know if the resukts would be different with Rituxan-only patients, or, as the reserachers noted, those who went on to have Rituxan Maintenance. As they say, some further study would be helpful before we consider this a "gold standard."

I think it's also worth bringing up, again, that PET interpretation isn't an exact science. While the study used 3 independent readers for each scan, most of us in the real world get one reader, unless we ask for second and third opinions. So unless the scan is so obviously full of cancer that everyone would agree on a score, I think it might not be as neatly predictive as they think.

All that said, the big takeaway is a positive one -- we're better off with a PET than a CT scan after initial treatment, because it will tell us more.

And I say this knowing full well that I am going for a CT scan, and not a PET, in a week.

Maybe I'll write about that some more after I get the results.....

New Combo for Follicular Lymphoma?

The Journal of Experimental Medicine has a new piece out called "Frequent Disruption of the RB Pathway in Indolent Follicular Lymphoma Suggests a New Combination Therapy." It's a pretty dense article, but it offers a great payoff.

The authors point out that "loss of cell cycle controls" is a feature of aggressive lymphomas (that is, cells don't realize that they are supposed to die), but that process as well understood in Follicular Lymphoma.

The researchers looked at genetic information from two large froups of Follicular Lymphoma patients, and found that about half of them had a particular problem wih the Retinoblastoma pathway (that's the "RB Pathway" in the title). Retinoblastoma proteins are important in regulating cell cycles. In other words, if they get messed up, then cells don't know when to die. Obviously, this is a problem. Retinoblastoma proteins are controlled by a gene called RB1.

Now, the researchers also noticed that when the RB1 gene is messed up, there is also frequent activity from something called the CDK4, or Cyclin-Dependant Kinase 4. CDK4 is an enzyme that helps in particular stages of cell division. It is also controlled by a particular gene, and when that gene gets messed up, CDK4 can't do its job, and cells don't know when to stop dividing.

So we have two things going on here: cells that can't stop dividing and then not dying. And, of course, we call that cancer.

The researchers suggest that, since we have two processes going on that are controlled by two different genes, an effective way to control them would be to combine CDK4 inhibitors with BCL2 inhibitors. (BCL stands for B-Cell Lymphoma, and is yet another gene that regulates cell death.) They call this combination an "untapped therapeutic opportunity," and say that it is "safe and effective against available models of FL."

So while this combination is effective against a model, it hasn't been tried out in combination yet. However, both CDK4 inhibitors and BCL2 inhibitors do exist already, and have been going through clinical trials for a bunch of different cancers, including some blood cancers.

So this one may be a combo for the future.

I'll say this, though, for the present: I find it fascinating that researchers are able to identify problems on a genetic level and determine how they affect cancer cells. This was all unheard of not so many years ago. The pace that we are coming to understand the way our bodies work is just amazing.

It certainly should make us hopeful for the future.

ASCO: The Economic Value of Rituxan

My goodness. I looked at the blog this afternoon and realized I'm coming close to a week since my last post. I use the excuse all the time, but I really have been busy. Work hasn't slowed down much, and  physical therapy for my shoulder is not only ongoing, but getting more intense, so I'm doing about 2 hours in the middle of the afternoon, three days a week. The good news is that the therapy seems to be working. I saw the surgeon last week, and he was pleased with the strength gains I've been making.

The bad news is that physical therapy takes away a big part of my day -- the part that I used to use for reading up about Follicular Lymphoma. Even something as exciting as the ASCO conference (which has been over for a week now) gets lost in the sea of other responsibilities.

It's not good for me, this neglecting of my Follicular Lymphoma blogging duties. I like to think it's not good for you, either, but mostly it's not good for me. I need this.

I've been sitting on this piece from ASCO for over a week: "What is the economic value created by adding rituximab to chemotherapy in the United States from 1998 to 2013?"

Sounds kind of cool, doesn't it? We like to think that our lives all have some value, but what if some statistics folks figured out just how much value was created by adding Rituxan to chemotherapy?

The short answer is: from 1998 to 2013, adding Rituxan to chemo saved 280,819 life years in patients with Follicular Lymphoma, DLBCL, and CLL. The value of a life year is $90,941, so the total economic value of all of those life years saved was about $18.5 billion. Rituxan cost about $7 billion,
but it saved about $25.5 billion, which brings us to the $18.5 billion.

It's a heck of an argument for the value of Rituxan, as if we needed another one.

I had hoped to do a little research on this. Like, where did that $90,000 figure come from in figuring out the value of a life year? What is "Monte Carlo sampling?" How does economic value play out in real life? Al of that might have made for more interesting writing, I think.

Alas, I have no time nor energy.

I started thinking, maybe it's more than just a lack of time. Maybe I'm so far out from my last treatment -- over 4 years -- that I'm getting lazy, and Follicular Lymphoma doesn't worry me so much any more.

But then I thought, well, don't wish for something to worry about, especially when you have a scan scheduled for a couple of weeks from now. No need to get silly about this.....

So I'll try to do better about getting back to my schedule of posting every 2-3 days. It's good for me. As good as 2 hours of physical therapy on my shoulder, most definitely.

Pan Mass Challenge

I'm interrupting my look at ASCO (I still have one or two sessions to talk about) to bring you this letter from my brother. 

Once again, he will riding in the Pan Mass Challenge, a two-day bike ride that raises money for cancer research at Dana Farber in Boston. Over the last six years, he has raised over $38,000, and he's a little more than halfway toward this year's goal of $5000.

Below is the letter he has sent out this year asking for donations. If you are inclined to donate money for cancer research, please consider giving to my brother's ride. Every little bit helps, and a good chunk of the money the PMC has raised over the years has gone to lymphoma research.

Thanks for considering it.

*******************************************

Dear Friends and Family: 
This year on August  2nd and 3rd , I will again ride  for  my 7^th year in the Pan Mass Challenge to raise research funds for the Dana Farber Cancer Institute in Boston. As in prior years, I'll be riding the 2 day route, over 165 miles from Wellesley to Provincetown.

As many of you may know from sponsoring me in the past, this cause is especially personal to me as I have had several immediate family members and close friends that have been diagnosed and treated successfully for many different types of cancers.  This year, I'm riding in memory of my mother, who was the beneficiary of the extraordinary care from Oncology team at the DFCI over the past three years.  I'm thankful to the Doctors and medical staff for giving us a few more years of memories and laughs.   I'm also riding in support of my brother, and several other close friends and colleagues that are in various stages of cancer treatment.  All are either patients at the DFCI, or beneficiaries of their ongoing research. 

Since 1980, the PMC has raised over  $350 million for cancer research and treatment at Dana-Farber. The majority of this impressive total is considered unrestricted support -- critical, flexible funding that can be directed where and when it is needed most. As the PMC generates nearly half of the Jimmy Fund's annual revenue, every rider supports the efforts of more than 3,000 DFCI faculty and staff members as they make countless advances that have become the standard of cancer care and research.

I’m asking you to join me in the fight against cancer by sponsoring me in my ride with the 2014 Pan Mass Challenge.  The doctors and researchers at the Dana Farber Cancer Institute in Boston are making tremendous progress in finding a cure for this terrible disease, but we need to continue to fund the fight and bring this to an end.

The easiest way to donate is to give on-line.  The PMC site is a secure site. 

 To give on-line, you can go to the following link to my personal fundraising site:

http://www.pmc.org/profile/MM0386

Many thanks,

Mike

ASCO: Does Rituxan Cause Cancer? (No.)

OK, that post title is way too scary, and I don't usually go there. So I'll tell you right off that the answer to that question is, NO, Rituxan does not cause secondary cancers. An ASCO presentation says so.

***I added that "No" to the title a minute after I published it because I really don't want it to seem like I'm using a sensational headline just to attract readers or something. We all have enough to worry about, don't we?

The ASCO presentation is called "Meta-Analysis of the Risk of Secondary Neoplasm in Patients Treated for Non-Hodgkin Lymphoma with Rituximab," and it looks at a bunch of previously-published studies to see if any of them report that Rituxan might cause cancer.

The authors looked especially at clinical trials that involved comparing chemo + Rituxan with straight chemo -- studies that involved half the patients getting Rituxan and the other half not getting it. This allowed them to directly compare the effects of Rituxan to something else.

Ultimately, they looked at 8 trials (half of them involving Follicular Lymphoma patients) with 3399 patients. The median follow up for the trials was 6 years, and they found no significant difference in secondary cancers in the two groups. Therefore, they can conclude that adding Rituxan to chemo doesn't increase the risk of developing a new cancer.

I had kind of assumed that this was the case, but it's nice that someone else did the checking for us.

It also highlights the need to remind ourselves that there's really no such thing as a side-effect-free treatment of any kind, whether it is Bendamustine or the Motrin I take after physical therapy for my shoulder (as my upset tummy lets me know). It's another factor to consider as we make treatment decisions with our doctors -- are the side effects worth the potential payoff?

It's also nice to know that, as treatments become more targeted, the kind of side effects we associate with traditional chemotherapy should decrease. But, as the researchers in this presentation note, long-term follow-ups are always necessary to make sure treatments behave they way we think they do.

Overall, this is a little study that doesn't have the sexy impact of those Ibrutinib studies, but it has a nice little message, too.