Saturday, May 23, 2015

ASCO Preview

Medscape has a brief (5 minute) video previewing the ASCO conference sessions on blood cancers. The video features Lymphoma Rock Star Dr. Bruce Cheson of Georgetown University.

Dr. Cheson mentions a couple of sessions related top lymphomas of various types, including including two that will be of interest to Follicular Lymphoma patients. The first will be results from the GADOLIN trial, which features Bendamutine plus Obinutuzumab (a monoclonal antibody that targets CD20, like Rituxan, but which is humanized, unlike Rituxan, which is mouse-icized).

The other is a report on a study of Polatuzumab Vedotin. This is a very cool treatment. It consists of a toxic substance that can't be administered directly because it is too toxic. So it is attached to an anti-CD79b molecule. Follicular Lymphoma cells express CD79b, so this molecule attaches to them. The cell then kind of sucks the whole thing into itself, and then it breaks apart, releasing the toxin, which disrupts some processes and kills them cell from the inside. You can watch a short video of how it works by clicking here.

 Dr. Cheson's video mentions some other blood-cancer-related sessions, but those two seem most relevant to those of us with Follicular Lymphoma. I found a few others, too, that I plan to describe in the next few days.

In case the link for the Medscape video doesn't work, they included a helpful transcript, which I am copying below.

So maybe not a huge amount of Follicular Lymphoma stuff at ASCO this year, but what is there looks pretty good.

This is Bruce Cheson from Georgetown University Hospital, the Lombardi Comprehensive Cancer Center, for Medscape Hematology.
It's that time again. The end of May is rolling around and the American Society of Clinical Oncology (ASCO) 2015 annual meeting is coming up. If you are an aficionado of hematologic malignancies, you will find one session each for lymphoma (Hodgkin's and non-Hodgkin's), leukemia (acute and chronic), and multiple myeloma. These will be spread out over 4 days.
What can we expect? Some interesting abstracts will be presented. In lymphoma, we will hear about the GADOLIN trial.[1] This is a randomized phase 3 trial in rituximab-refractory patients, of bendamustine plus or minus obinutuzumab (the other anti-CD20 agent). Interesting data will be presented.
There will be some information on polatuzumab vedotin, the anti-CD79B antibody-drug conjugate, in combination with rituximab.[2] In these compounds, an antibody is bound to a toxin, which becomes internalized within the malignant cell and kills those cells. They really work.
Additional data[3] will be presented on the combination of what I call "A2VD" (Adcetris® [brentuximab vedotin], Adriamycin® [doxorubicin], vinblastine, and dacarbazine) in early-stage Hodgkin's lymphoma. The same antibody-drug conjugate (brentuximab vedotin) will be combined with R-CHOP for patients with diffuse large B-cell lymphoma.[4] There is a lot of interest, and a lot of data are coming out with the antibody-drug conjugates.
In the leukemia field, we will see the first offering of bendamustine/rituximab with or without ibrutinib in chronic lymphocytic leukemia.[5] The treatment that has many of my patients curious and excited—CART-19 therapy—will be presented in a study of patients with acute lymphoblastic leukemia of the B-cell variety.[6] We will see data from a triplet of biologic agents—ublituximab (another anti-CD20 agent), TGR1202 (a PI3-kinase inhibitor), and ibrutinib—in lymphoma.[7]
For those of you interested in myeloma, you are going to have to wait until Tuesday, when you will hear the results of the ELOQUENT trial.[8] This is lenalidomide/dexamethasone with or without elotuzumab, which is a signaling lymphocyte activation molecule number 7 (SLAM 7). You will also see the ENDEAVOR trial[9] which is carfilzomib/dexamethasone vs bortezomib/dexamethasone duking it out to see which is the better proteasome inhibitor. Data[10] will be presented on a monoclonal antibody—CD38 daratumumab—for lymphoma, which is very promising. Finally, there will be some data on a combination of panobinostat, the HDAC inhibitor, and carfilzomib.[11]
Those are just some of the studies that should capture your interest and get you going to those sessions at the ASCO meeting. For those of us who would like to see a little more lymphoma, don't forget the International Conference on Malignant Lymphoma (ICML) coming up in the middle of June in Lugano, Switzerland. I like Chicago a lot, but then there is Lugano, Switzerland.
This is Bruce Cheson, signing off with a little teaser about the upcoming ASCO meeting. Hope to see you there and I hope you'll enjoy the various hematologic oncology sessions.

Thursday, May 21, 2015

My Meeting with Dr. K

Well, I finally met with my new oncologist, Dr. K. It went fine.

As I have written, it took a while to get to this point of finding a new oncologist, scheduling an appointment, re-scheduling an appointment, and then getting there.

The office staff was very professional and friendly. There was a little banter with the nurse, which was nice. There's something about oncology nurses -- they aren't just nice, they're also wise-guys. (I'm aware that some people reading aren't native English speakers, and I wrote "wise asses" at first, but Google Translate wasn't really giving me what I wanted. I think "wise guys" will work, though.)

At Dr. R's office, I always went in first to get blood work done, and then went into an exam room, and had the nurse call my wife in. At this new office, we didn't do blood work, so when I went into the exam room, I asked the nurse if she'd bring my wife in from the waiting room. The nurse told me I'd be in trouble with my wife for that, but I said I'd already built up points for wearing new socks and not embarrassing my wife by having the nurse see socks with holes in them. When my wife came, the nurse told her I'd have to get an extra dessert tonight for being a good boy and wearing decent socks. (Apparently, her husband also prefers his old, holes-filled, wife-embarrassing socks, too.)

Dr. K came in soon after, and we went through my medical history. Lots of questions about diseases I have had, whether anyone in my family had cancer, medications I am on, etc. (I'm sure you've all been through the same drill.)

As part of the history, he asked if I drank alcohol. I told him, honestly, that I have one drink maybe every couple of weeks. "A beer or glass of wine?" he asked. "At my age, it's a wee dram of scotch," I said.  He told me I was not "of an age" yet, but that when I hit 50, I should look out for my American Association of Retired Persons (AARP) card, which will come when I am 50, and which I can show to get a lot of discounts. One of those discounts is a free donut at Dunkin' Donuts,

So I have a nurse who thinks I deserve an extra dessert, and a doctor who wants to make sure I get free donuts. And here I was worried they'd say something about my weight.

He then started to tell me a little bit about the notes he had received.

"You have a variety of Lymphoma called Follicular Lymphoma. And when you first saw Dr. R, and there was a biopsy, it apparently came out that you have grade 1. I don't know if you knew that or not."

OK, this is where things might get a little problematic.

I told him that I was aware that I had grade 1 Follicular Lymphoma. And I let him talk some more.

He asked me what I thought it meant that I had Follicular Lymphoma. Did I know what Follicular Lymphoma was?

I was a little shocked. Because, um, yeah, I have a pretty good idea of what FL is. I said "A blood cancer."

Yes, it is, he said. And then he gave me a short lecture on white blood cells, leukemia, lymphoma, and what all of that means. Fairly basic stuff.

Which I appreciated. He did mention that some of his patients just don't want to know anything about their disease. They want to be told what to do next, and leave it all up to the doctor.

Obviously, I'm not one of those patients. I tried to gently let him know that. I mentioned that I do like to know what's going on with my disease, and that I read medical journals. I am, I said, a Cancer Nerd.

"No, no, you're not a nerd," he said, consoling me, as if I thought this was a bad thing.

"Oh, yes I am," I said, trying to make clear that I wore that label proudly.

Things kind of went this same way for a while: he had kind of a prepared speech about follicular lymphoma, I tried to indicate that this basic information was nice, but I the kind of patient who read  a lot, and him sort of not really picking up on those clues.

I could have been a little less subtle, but I also know that this was our first meeting, and we were both kind of establishing who we are. He's not Dr. R, and I know that, and he and I don't now, and probably won't ever have the kind of relationship that I had with Dr. R. And that's fine.

He made it clear that his decisions are guided by NCCN Guidelines -- how often to scan, which treatment to use, etc. After our appointment, he had planned to write up some notes and look at the guidelines, and get back to me with some suggestion for when I might be scanned again.

(I looked up the NCCN guidelines when I got out to the car. But I'll wait for the phone call anyway.)

On the positive side, he did say that while he uses the guidelines (because they are based on research), he also listens to patients, and if a patients seems to need a CAT scan, even if goes against the guidelines, and it's not the rational decision, he will go along with it. It's nice that he does that, but the way he said it, making the patient's emotional need seem irrational, kind of bothered me a little. I told him I was part of a support group, and it seemed to me that most of us see this disease as at least as much an emotional issue as it is a physical issue. He didn't really have much to say about that.

Also, he didn't do any blood work. He says it's not a very reliable indicator of a problem, and he does it every six months (I'm at about 5 months). My numbers were great, so there's no need to do it so soon.

So, overall, I think the appointment went fine. I didn't have any kind of instant connection with him, but I think I know where he's coming from and what his approach will be. And I can work with it. For now. If and when things get problematic, we will see just how much he is willing to listen to what I have to say.

I do miss Dr. R, but that ship has sailed, and it's nice to know that I am officially under someone's care now.

Friday, May 15, 2015

ASCO is almost here!

First, and update on the situation with my new oncologist:

After I finally got an appointment scheduled, and then re-scheduled, the onc's office left a message saying my Thursday appointment wasn't going to work, and that they were rescheduling me for Wednesday instead (not asking -- telling). But I have something at work on Wednesday that I just cannot miss. So I called back and tried to reschedule again. The doctor is booked, and then is going on vacation for two weeks in June, and he doesn't come in on Thursdays. So the first appointment they could get me was June 26.

(I will say, the office staff was apologetic, and the secretary did ask if I was having problems, and I told her honestly that I was not, and that this was a routine appointment for bloodwork and a physical exam. So that was good.)

Five minutes later, she called back again to tell me I was back on for next Thursday. From what I can tell, the doctor is being very accommodating.

Wish me luck. I'll let you know how it goes.


To the more important news: ASCO is back!

ASCO is the annual meeting of the American Society of Clinical Oncology, and it is one of the largest meetings of practicing oncologists in the country. This year, it will take place May 29-June 2 in Chicago. It's huge -- about 30,000 people attend, and the sessions cover pretty much every cancer-related topic you can think of. So unlike ASH, which focuses only on blood diseases, ASCO has a smaller number of Follicular Lymphoma sessions. However, because this conference is such a big deal, they are often pretty significant sessions.

I can tell that ASCO is coming up because I'm starting to see some press releases online describing pharma companies' products that will be discussed at ASCO. It's a sure sign of summer (right up there with the half inch of yellow pollen covering my car, and all the sneezing that goes with it, enough to make me wonder if non-stop sneezing is some weird new lymphoma symptom [it isn't]).

Some of the press releases I have seen in the last few days:

Of course, these press releases aren't all related to Follicular Lymphoma directly. It seems like Chronic Lymphocytic Leukemia (CLL) is getting more good news at ASCO. I looked at the abstracts for CLL, and just looking at the number of sessions, it seems like there has been a ton of great CLL news in the last year or two; I have to say I'm a little jealous.

(I also came across an abstract for T-Cell Lymphoma, something I don't read much about, that mentioned "Smoldering Adult T-Cell Lymphoma." It's a very slow-growing type of T-Cell Lymphoma that doesn't present very clearly. I think "Smoldering" is a pretty cool name for a lymphoma. Not to make light of it, but I think some Lymphoma Rock Star should propose that those of us with asymptomatic, stable or waning Follicular Lymphoma have "Smoldering FL." It sounds sexy as hell. At least then, when I think about when my cancer is going to grow again, I think about the smoldering passion between William Hurt and Kathleen Turner in Body Heat. Now that's what I call cancer!)

Of course, I did take a look at the ASCO abstracts for Follicular Lymphoma. And there are some good ones. It looks like the big news this year for FL will involved Rituxan + Revlimid, or R Squared. Looks like some good news there.

My plan is to review some of the ASCO abstracts related to Follicular Lymphoma over the next few weeks. I'm excited about what I'm seeing. And if I come across some nice expert commentary by a Rock Star or two, I will pass that along as well.

Stay tuned.

Monday, May 11, 2015

Options for Follicular Lymphoma

MedPageToday posted a nice piece a few days ago called "Expanding Options for Follicular Lymphoma Patients in Relapse: Studies of the Microenvironment and Immune System Spark Enthusiasm." MedPageToday is geared toward health care professionals, and this article isn't the type that reports on something new. Instead, it gives a nice summary of some of the developments in treatment options for Follicular Lymphoma patients.

And as much as love reading and writing about exciting stuff in the clinical pipeline, it's also really nice to read a basic article that describes what is available to us at the moment. It's great to see all of that good stuff in one place.

The article open with some information about Rituxan, and the recent research that shows that retreating with Rituxan at the first relapse is as effective as treating with chemo + Rituxan, or Rituxan Maintenance. It also mentions the great success that "R-Squared" (Rituxan + Revlimid) has shown in Follicular Lymphoma.

And then we get to the "expanding options" from the title:

Like Idelalisib (Zydelig), the PI3 Kinase Inhibitor. Over half of FL patients in a phase II trial had a response to Idelalisib, which prompted the FDA to approve its use for relapsed FL (again this is old news).  Interestingly, one expert says that most research on Idelalisib has focused on its effects on B cells, but he thinks there is an effect on T cells (which would help the body fight the cancer cells on its own). I look forward to seeing that research some day.

That same expert (Dr. Stephen Ansell from the Mayo Clinic) points to the disappointing results from Ibrutinib (Imbruvica), another inhibitor (this one targeting Bruton's Tyrosine Kinase, or BTK). Dr. Ansell hasn't given up hope yet, though, and he thinks Ibrutinib might work for Follicular Lymphoma by combining it with another "checkpoint" treatment (that is, not one that targets the cancer cells directly, but one that stops certain processes that the cancer cells need in order to function).

And then there are the potential treatments that will help the immune system fight off cancer on its own -- the awesome Immunotherapy treatments.

One big challenge with all of this: we might have, as the article puts it, "drugs in search of patients." In other words, we might have a bunch of treatments that seem to work, but no idea which FL patients they will work on, exactly.

So the next step is finding biomarkers -- some kind of genetic or cellular or other mark that we can identify on an individual patient, and then match up a treatment that works with that biomarker.

The other big challenge: trying to balance effectiveness of a treatment with quality of life, which has become increasingly more important. A treatment might have a high chance of working, or of working for a long time, but a patient might rather opt for a less aggressive treatment with lower chances of success, or that won't work as long, if it means fewer side effects. That's certainly an important consideration for me.

So many exciting options, but so many questions that remain.

Overall, though, I'll take those unanswered questions as long as those great researchers keep trying to find answers.

Lots to be happy and hopeful about.

Thursday, May 7, 2015

Empathy & Cancer

Nice article from Slate called "A Cancer Survivor Designs the Cards She Wishes She’d Received From Friends and Family." It features some greeting card designs from Emily McDowell, who had Hodgkin's Lymphoma at age 24. In her experience, people just didn't know what to say to her, so they avoided her, and that resulted in loneliness and isolation (which is about the last thing we need as cancer patients).

And so, looking back at her experience, McDowell designed cards that say what she wished people had known what to say. Here's an example I especially like:


The cards bring back lots of memories. I remember, very early on in writing this blog, devoting a few posts to people saying stupid things to me (and to others). I always tried to give people the benefit of the doubt, because it really is hard to know what to say. I don't get as many of those comments these days, because everyone I know is used to my lymphoma by now. But I find myself being very, very careful when I find out someone I know has cancer. Of course, it's a lot easier for me to empathize with someone in that situation. Much harder for someone who has never heard the words.

McDowell is selling the cards on her website; you can find them here.

Even if you might be more likely to be on the receiving end of one of those cards than the giving end, it might not be a bad idea to let others know about them. Maybe post a link to the Slate story or McDowell's website on your Facebook or Twitter and hope some people get the hint....

Friday, May 1, 2015

Time, Cancer, and My New Oncologist

So I had the appointment scheduled with my new oncologist for next week.

As you may remember, after seven years with Dr. R, he announced in the fall that he was moving out of state. that was hard -- I really liked Dr. R, and he had been with me since the beginning of this journey. It was tough to leave him, but we said good bye in December. Dr. R's office was supposed to set me up with another oncologist closer to my home, though in the same practice. (They used to be a private practice affiliated with local hospitals, though now they are officially branches of one of those big hospitals.) I was supposed to get a call from the new oncologist within a month. I finally had Dr. R's office call them a few weeks ago, and they remembered that they needed to set up an appointment for me.

That was not a good sign.

Yesterday, I got a phone call from the office, and they left a message. Before I could get to the message, I got a letter in the mail from them saying they needed to cancel my appointment for next week. and that I should call to reschedule. The phone message said the same thing.

No big deal. I called and rescheduled for a coup,d of weeks from now.

But here's what bothered me:

They sent me a letter?

It's not so much that a letter is kind of an old-fashioned way to communicate. Very 16th century, when that technology from two centuries ago, the telephone, is so readily available. We'll leave out email, which seems like the most efficient form of getting in touch with someone. That seems like a lot.

I don't object to old-fashioned letters. But what bothered me was this: they sent the letter on April 23. I received it April 30. That's a whole week, when a phone call could have taken care of it in 5 minutes. And I know, they did eventually call, after not hearing from me for a week, since I didn't get it for a week. And I also know they are probably very busy in the office, and one mail-merged letter might have taken less time than however many phone calls they needed to make (although, they would eventually need to have those phone conversations once people called back).

What bothers me is that they don't really seem to think at all about time. And that's exactly what an oncologist's office should be thinking about.

As cancer patients, we measure everything in time. We can look at other ways to measure things, like White Blood Cell counts in a blood sample, or milligrams of Rituxan per dose, or Standardized Uptake Values in a PET scan, or any other ways of measuring our lives in numbers.

But the one that it always comes back to, the one that really matters, is time. If my White Blood Cell count has changed, how much time do I have to make a decision about what to do next? If that Rituxan dose causes a reaction, how much more time will I have to sit here in the chair and see if the Benedryl and steroid stop the shaking and the rash? If my SUV has changed, does it mean that I have transformed, and how much time do I have left? (Yes, that's where we go immediately, even if we shouldn't. We are cancer patients.)

After I was diagnosed, one of the real changes that I noticed was my lack of patience. I absolutely hated to have my time wasted. At meetings at work, I'd get caught up in petty discussions about details that really didn't matter, or that could be worked out later. I'd want to kill someone. When my kids fought over stupid things, it would drive me crazy. One time, I got pulled over by a police officer for talking on my cell phone while driving, which is illegal in my state. Only I wasn't on my cell phone. I was at a stop light and leaning my head on my fist, which looked like I was holding something to my ear. I actually yelled at the police officer, something I would never normally do. But I was on my way home to do something important, and he was wasting my time. And I hated to have my time wasted.

I'm a little better about that now. Seven years has given me some perspective, and I am more patient now than I was when I was first diagnosed -- much closer to the calm, mellow, patient Bob that I was before cancer.

But something about getting that letter just bugged me. It just felt like a big misunderstanding of what time means to a cancer patient.

Now, none of us, cancer patients or not, knows how much time we have. But cancer patients just feel it more, because we are reminded of it a lot more. Everything, for us, comes down to time.

So that's two strikes against this new oncologist's office, and I haven't even been there for an appointment yet. Both strikes have to do with time, and that concerns me. I always felt valued with Dr. R, and that included valuing my time. So far, I'm not feeling that way with the new folks.

I think what is scaring me a little is that, when time really does matter some day, they aren't going to value it the way I want them to -- need them to.


That said, I'm still going to give them the benefit of the doubt, and I'm still staying positive.  another step on the journey, and every new path has its problems. I will keep you updated.

You stay positive, too.

Tuesday, April 28, 2015

Rituxan vs Watch and Wait (Again)

A couple of months ago, I wrote that I thought it was time to move on from discussing the whole Watch-and-Wait vs Rituxan choice -- whether or not it is best to treat with Rituxan right after diagnosis, or better to wait until treatment is necessary (as I did). There has been so much research done on whether or not Watching and Waiting is the best choice, given how effective Rituxan is, with its relatively mild side effects. Lots of good reasons for choosing one over the other, though there was no evidence that one had a better Overall Survival effect than the other. I said it was time to move on to other things, since we weren't getting anything new.

And now, we have something new.

The journal Cancer has published a study that shows that getting Rituxan is more cost-effective over the life of the Follicular Lymphoma patient than Watching and Waiting. In other words, if you take Rituxan (with or without maintenance) soon after diagnosis, you'll spend less money on treatments if and when the FL comes back than you would if you had just waited until treatment was necessary. The abstract for the study is here, and a commentary on it from Cancer Network can be found here.

Of course, I have some issues with the study and its implications. I hope you weren't thinking this was going to be some kind of Final Answer to this issue.

The researchers conducted a statistical study using something called a Markov Model, which is a fascinating tool that allows for the complexity of a medical situation like having a Follicular Lymphoma patient have to have many treatments over a lifetime. I don't think I can really explain it in very simple terms, but basically, it measures how a patient is likely to do after receiving a treatment, what kind of options will be available when another treatment is necessary, what the likelihood will be of choosing one treatment over another, and moving on down the line. Statistically, of course -- all of the numbers and choices are based on what we already know about Follicular Lymphoma.

Anyway, the results of their modelling show that someone who receives Rituxan soon after diagnosis will likely end up paying $59,953 (Canadian dollars) for treatments over their lifetime. Someone who had Rituxan, plus Rituxan Maintenance would pay $67,489, and someone who watched and waited would pay $75,895. Again, these are based on statistical models: statistics show that someone who watched and waited would likely need another treatment in XX months or years, and that treatment would likely be XXX, and would be followed in XXX months by XXXX treatment. This isn't an actual single patient with exact treatment recommendations.

The study also measures (again, statistically) Quality-Adjusted Life Years (QALY). This is, again, how many years someone would likely live disease-free. It's a little bit complex -- it takes into account the partial years a patient in disease free. So using me as an example, I have lived 7 years and 4 months since my diagnosis. BUT, I have never actually been disease-free in that time, having achieved a Partial Response after Rutuxan, and then having various levels of waxing-and-waning disease since then. On the other hand, I haven't missed any work because of it. By some statistical measure, they can figure out how many of my 7.25 years are Quality-Adjusted Years. I assume it will be less than 7.25.

(That's a lot of statistics from someone who keeps talking about how much he hates statistics.)

The researchers found that Rituxan plus Rituxan Maintenance right after diagnosis gave 6.28 Quality-Adjusted Life Years, with Rituxan-only gave 6.16 and Watching and Waiting gave 5.71. (The difference is a matter of months.)

So either form of Rituxan, by these measures, beats out Watching and Waiting.

Before you start regretting your watch-and-wait decision (and let me clear: I do not), let's look at this a little more closely.

First, let me point out yet again that this is a statistical study. It is uses statistics based on what decisions people have made in the past to determine the outcomes. I think that matters -- a lot. I remember, many years ago, when I saw Dr. C the lymphoma specialist soon after my diagnosis (not Dr. R, my regular ol' oncologist), he told me that anything I read on the internet is already out of date. I thought of that as I read this: this is based on treatment decisions (and costs) that were available at the time of the study. They can't really anticipate that, in 10 years, some super combination of monoclonal antibody, kinase inhibitor, and anti-PD1 treatments will be available, and will help 75% of patients, and cost less than Rituxan costs now. They can guess at that, but they can't really know. They can only know that after Rituxan Maintenance, a patient is likely to try Rituxan, and that will cost X, and then will become Rituxan resistant, and will try straight Bendamustine, and that will cost X, and so on. So like most statistical models, this is based on a bets guess (and admittedly, that is sometimes a frighteningly good guess).

I think it also matters that this study takes place in Canada. It could have been the U.S., or Brazil, or the U.K., or New Zealand. Whatever. It's in one specific place at one specific time. That's going to have a significant impact on the cost of treatments, but also the availability of treatments (as the Lymphoma Coalition's Report Card makes very, very clear). Change the time and location, and those statistics are likely to change. That may actually favor Rituxan, as its trademark protection expires, at least in the U.S. Though it may favor Watching and Waiting, too, in other places where treatments are more costly.

I said it in the last post I wrote about this debate, linked above, and I'll say it again: There is a lot that goes into the initial decision on a treatment after diagnosis. Cost certainly matters. Physical state obviously matters. But so does emotional state. As much as we can learn from past statistics, and as much as it would be great to consider what future treatments might be available, what matters to most of us, at that time, is what is happening RIGHT NOW, at diagnosis.

So I think this study adds some interesting stuff to talk about. But I maintain my power as Lympho Bob to say: this debate still isn't settled. Talk to your doctor about every factor that might play a part in making your treatment decisions.