Monday, October 20, 2014

I Need a New Oncologist

I got a letter from my oncologist, Dr. R, over the weekend. He's leaving the practice and moving away.

I'm really saddened by this. I've been with him since I was diagnosed.

I've come to like certain things about him. He's on the young side, and I always felt (since my bone marrow biopsy) that his youth had made him a little less jaded, a little more sympathetic. I like his nerdiness. I like that he keeps up with what's going on in the field, and seems open to new things (even if they aren't his first choice). I like that he takes the first 10 minutes of our appointments to just chat, ask about my kids, make fun of the Red Sox, and whatever else is on our minds. I'm going to miss all of that.

And now I have to find someone new.

When I got the letter, I said to my wife, "I really don't have the time or the energy to train a new oncologist."

I was only half joking.

It's going to be hard to replace all those good things that I like about him.

It's only been a couple of days, but I'm already considering options.

I could stay with same office of the practice. The letter mentioned the name of the new oncologist, and I looked her up. From what I can tell, she isn't a hematologist/blood cancer specialist, like Dr. R is. She seems very good, though I want someone who is up on all of the good things that are happening in the world of Follicular Lymphoma.

I could stay with the practice, but go to a different office. I did a quick search, and there are a couple of blood cancer specialists at the other offices. They've been around for a long time. They won't have that youth that I like so much in Dr. R. And while there's something to be said for experience, we're in a rapidly changing world, and some of that experience maybe won't matter as much soon.

I could go to Dr. C, the lymphoma specialist I saw a few days after I was diagnosed. I'm officially his patient, since I'm in his system. He teaches in a medical school, which has advantages when it comes to being cutting-edge. But being a patient in a research setting isn't always fun. Lots of medical students poking around me. I certainly support education, which is a consideration. But I also remember Dr. C as being more straightforward than I might like (as Dr. R had warned me he would be).

Or I could try to find a new oncology practice altogether. I've done some searching online. Do you know how hard it is to find an oncologist online? It's really kind of hard. There are a bunch of websites that allow patients to rate physicians, but the ones I have found are not very active (one or two reviews per doctor), or pretty outdated. I found what seemed like a great hematologist nearby, did some deeper searching, and found an article all about his retirement party in 2012. Not very trustworthy sites.

Dr. R's last day with the practice is December 15, and my next appointment is scheduled for December 18. So I could try to move my appointment to see him before he goes. But right now, just thinking about that final conversation with him makes me sad.

We face so much uncertainty as cancer patients -- especially, I think, as patients of indolent lymphoma -- that it was really nice to have a Dr. R there. I figured he was young, and he'd be around for a long time, just like I plan to be. And now I have to face that one more uncertain thing.

And it stinks.

I'm going to keep chipping away at this, and figuring out what to do. I don't have much choice. But I'm a cancer patient, and that's what we do. We can't ignore some of our problems, so we face them and deal with them, using whatever knowledge we can find to help us make good decisions.

This problem is no different.

But it still stinks.

Saturday, October 18, 2014

Runner Bob

This morning, I ran in my first 5k road race in well over a year -- 16 months.
It didn't go as well as I had hoped, but I guess it was nice to be out there again.

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

If you've been a long-time reader (or were curious enough to go back and read old posts), then you know that running has been important to me for a long time. As a cancer patient, running has been a way for me to stay healthy, to stay motivated, and to think about cancer in different terms. Let's just say I do not have a "traditional runner's body," so being able to overcome running challenges has been a way of thinking about overcoming other challenges, too.

I stopped running in January, after I slipped on ice and tore my rotator cuff. Surgery in late February, then my arm in a sling for 7 weeks, and then physical therapy for a long time (and still going) before my therapist said it was OK to run. That was mid-summer. I started running again, slowly. And never really picked up the pace.

Once the fall rolled around, the kids' activities picked up, as did my own work, so my running schedule was erratic. And then my fall allergies picked up, which made breathing a challenge. And then there's the matter of the 10 pounds I put on since the surgery, due to lack of exercise.

My point is, I wasn't exactly in tip-top shape for this race.

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

I'm going to spare you the details of the race, which in the past I have provided. This was a small race -- only 43 runners -- and most of them were young, maybe 18-25. There were maybe 5 older guys, like me, including an 80-something man who has been running for almost 70 years. I always tell myself, no matter how bad the race is, you're not going to come in last. At the starting line, I looked around and thought, "By golly, this one time, I just might come in last."

It was not a good race for me. I started out fast, which I usually do. And then I usually settle down into a nice rhythm. But not this time. I just couldn't catch my breath. I could see my shadow as I ran, and I could tell, that shadow was moving slow.

How slow? Well, I have for years had a "5k mix" on my iPod. It's made up of songs that inspire me as I run, and it's timed pretty well so that I can finish a 5k and have a couple of songs left over for the cool down and happy feelings afterward. But this time, I ran out of songs. That's how slow I was going.

And I had to stop and walk. I've only done that a couple of other times in races. It's a point of pride for me -- I can't ever stop. Not as a cancer patient. But I stopped and walked once. I had to. I knew this course, and I knew what was coming, so I stopped and walked to conserve a little energy. And then a few minutes later, I stopped again. And again. I stopped and walked a total of 5 times during the race. My lungs were not happy, and they were taking it out on my legs.

As I got close to the finish line, I looked back and didn't see anyone. I thought maybe I was in last place, but I also saw the police who were blocking traffic for us were still in place, so I knew there was someone out there still on the course. I took little comfort in that.

In the end, I finished in 37 minutes and 56 seconds. By far my worst race ever. I killed myself to finish in under 38 minutes, but that didn't make me feel any better.

As I drank water and waited to see who else ran even worse than I did, I overheard one of the other old guys talking to the race director about the course. It has changed from years past because of construction, and at one point it took us away from the finish line when we should have been going toward it, which threw me, psychologically.

"Yeah," said the race director, another one of those young people. "We need to tweek the course for next time. We measured it too late to change it, but it's actually a little more than 3.1 miles" (which is what 5 kilometers works out to).

"How much longer?" the old guy asked, and I thought.

"Oh, it's about 3.4 miles."

Now, to me, an extra third of a mile is not "a little over 3.1 miles." And it explains why I had no energy left toward the end of the race.

So I did some figuring, and if my time for 3.4 miles was translated to 3.1 miles, it would be about 34 minutes and 57 seconds.

I can live with that time. Still not great, but not embarrassing, either.

So I stood there, feeling slightly better about myself, when the other runners came in. 5 minutes behind me was a young man, tall and lanky, who looked like a runner, but wasn't.

10 minutes later, my 80-something year old friend came in. He got a huge ovation.

And then we waited for the last runner. Another 5 minutes. 10 minutes. 20 minutes. Someone asked who was still out there. "Emily," someone else said.

And then Emily showed up. She was another off those young ones.

But she was in a wheelchair. She got even bigger cheers. And seeing her struggle up that last uphill was inspiring. She wasn't in one of those special racing wheelchairs, either. This was just her everyday wheelchair, which she pushed almost 4 miles, over bumpy sidewalks and big hills.

So yeah, I "beat" those last two, but they certainly put things in perspective.

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

It was nice to get back into my Red Shirt, a gift from my mom soon after I was diagnosed, with "RELENTLESS" stitched on the sleeve.

I'm going to keep running. I don't know when I'll race again, but I certainly will at some point in the future. And I have a new goal -- a pretty basic one -- getting myself back into running shape.

Stay tuned for more.


Tuesday, October 14, 2014

Ibrutinib Combo for Follicular Lymphoma

Some say the future of lymphoma treatments won't be in finding a single "magic bullet" treatment that will wipe out the disease. Instead, recognizing that cancer involves a complex series of operations, those folks say that treatments will involve a combination of approaches. Those combinations will target several of the pathways that are necessary for cancer cells to survive.

It looks like one such combo is going to be tested.

A phase I/II clinical trial is being developed that will test the combination of Ibrutinib and Nivolumab.

We know a little something about Ibrutinib. It is a BTK Inhibitor -- that is, it stops Bruton’s tyrosine kinase, an enzyme that is necessary for cancerous B-cells to grow. It has been approved for a couple of other types of lymphoma, and is in clinical trials to see how well it might work on Follicular Lymphoma. (Early results show that it might work pretty darn well.)

For those of us in the Follicular Lymphoma family, we know less about Nivolumab. Nivolumab is one of several treatments that target PD-1, a protein found on immune cells known as T cells, which attack invaders. Cancer cells sometimes produce a substance that can bind to PD-1, shutting down the T cell, and allowing the invader (a cancer cell) to survive. Nivolumab stops that substance (which is called PD-L1) from binding to PD-1, allowing the T cells to do their job and attack the cancer cells. It's good stuff -- it's been tested on solid tumors like lung cancer, kidney cancer, and melanoma. More importantly, it received a Breakthrough Designation from the FDA for some Hodgkin's Lymphoma patients, so we have some sense that it can work on blood cancers as well.

Ibrutinib and Nivolumab will attack lymphoma cells in two different ways that seem like they will work well together. We can only hope. The trial will involve patients with several types of lymphoma, including FL. The ones that have some success will move on.

Of course, the usual warnings apply -- phase I is very early, and it's not going to work if people don't actually sign up to participate in the trial.

Definitely another one to watch. I'm guessing we'll be seeing more of these combinations in the near future.

Friday, October 10, 2014

Chemotherapy for Follicular Lymphoma

The medical journal Leukemia and Lymphoma just published a study called "Comparison of the Effectiveness of Frontline Chemoimmunotherapy Regimens for Follicular Lymphoma Used in the United States."


It looks at how well Follicular Lymphoma patients responded, over the long-term, to three traditional chemotherapy treatments, all with Rituxan: R-CHOP, R-CVP, and R-Fludarabine.

It made me think immediately of another study from Italy from last year (April 2013 Journal of Clinical Oncology) that looked at the same three treatments, and with similar results.

In the more recent study, which looked at patients in the United States, overall response rates were high for all three (R-CVP 87%, R-CHOP 93%, R-Fludarabine 94%). Five-year survival was higher in R-CHOP and R-Fludarabione (86%) that R-CVP (76%). Same with Progression-Free Survival after 5 years (R-CVP 49%, R-CHOP 58%, R-Fludarabine 64%). Similar to the Italian study, which looked at 3 year statistics.

When I wrote about that study a year and a half ago, my question was this: why bother with a study like this? Traditional chemo is halfway out the door. Do we really need to know that R-CVP won't do as good a job as R-CHOP, when we have so many other targeted options to choose from right now?

Looking back, it's kind of an unfair question, for a couple of reasons.

First, this study involves a 7 year follow-up. So the patients in the study were starting their treatment even before I was diagnosed. To be fair, those three options were on the table for me way back when. So it wouldn't be fair to tell those researchers that their life's work is useless at this point.

Second, their work really isn't useless. There's still a place for traditional chemotherapy in treating Follicular Lymphoma. I haven't seen anything that says R-CHOP, for example, isn't a valid option for transformed FL, though we are seeing more options being explored these days. And I know there are still some oncologists who go to chemo for a first treatment, whether or not there are other options available. If it's still happening, it's good to know what the best options are.

All that said, a study like this is still a reminder to me, more than anything, of how far we've come, and of how many options we have now -- better options than I had when I was first diagnosed. I remember, almost seven years ago, laying out for myself what I thought I would need to do when treatments failed: I'd start with Watching and Waiting, and then go to straight Rituxan. After that, R-CVP. Then R-CHOP. Then an Auto Transplant, and then, if my body could deal with it, an Allo.

Other than Rituxan, I can't say any of those things are even on my list any more.

And that's all changed in just six years.

I've been talking about Hope lately, and this is a great illustration of why we should be hopeful -- look how far we've come. How many of you have had a conversation with an oncologist about Fludarabine lately? How many of you even know what it is?

Now, I'm not saying I would never consider R-CHOP, or that an Allo Stem Cell Transplant is out of date. Those options are valid, and they are available.

But we have so much more to talk about now.

And so much more to be hopeful about.

How can you not be excited about the future?




Tuesday, October 7, 2014

Dr. Sharman on Indolent Lymphoma

I'm finally getting to Dr. Sharman's other recent post related to Follicular Lymphoma.This one is called "Immunotherapy for Indolent (Low Grade) Lymphoma."

In this post, Dr. Sharman looks at some of the "home runs" in research on Indolent Lymphomas. (Apparently, he's not a baseball fan, despite the baseball language. You'd think his time in Boston would make him a Red Sox fan. Alas, no.)

It's a pretty interesting list, and a quick tour of the way treatments have changed over the last 70 years or so: from chemotherapy, to Adriamycin (also known as Hydroxydaunorubicin, the "H" in CHOP), to Rituxan, Bendamustine, and treatments like Ibrutinib and Idelalisib that target pathways that allow lymphoma cells to survive.

His final "home run" is Immunotherapy. While this is a general category of treatments (and one that is very exciting to many cancer experts), Dr. Sharman specifically mentions the combination known as R-squared, Rituxan + Revlimid. He links to three studies that he thinks will "position this combination at the center of treatment pathways for patients with follicular lymphoma." That's certainly something to pay attention to, from an expert who is at the center of things going on right now.

I really like his explanation for how this combination works, so much that I want to just quote the whole thing: "I think of the combination of revlimid-rituximab (also called R2) as a road trip with a pot of coffee and a map.  Rituximab helps orient the immune system to go after the cancerous b cells by coating the outside of them and serving as an alarm for the T cells (like a road map).  Revlimid (lenalidomide) helps overcome what has been called T-Cell “pseudo-exhaustion” and get them to reactivate (ready for the road).  B cell cancers have a remarkable ability to “put the t cells to sleep.”  Whether though secretion of hormones, or actually manipulating the on/off switches of T cells, the cancerous B cells literally put the other half of the immune system into a post thanksgiving meal food coma.  Revlimid acts like a cold splash of water to the face for the sleepy T cells.  Not bad for a drug that really isn’t chemotherapy but is considered an “imid” for – immunomodulatory drug."


[Those links are from his original post.]


So, another great blog post from Dr. Sharman -- an informative look at our history, and an intriguing statement about what be in our near future. We'll keep an eye on those three R + R studies that he mentions, and hope that he's right.

Saturday, October 4, 2014

Rituxin Monotherapy for Follicular Lymphoma

We've been busy, Dr. Jeff Sharman and I.

I have been focused in the last few weeks on watching and commenting on those Patient Power videos from the iwNHL conference. Dr. Sharman has been busy with all of the great research on CLL (Chronic Lymphocytic Leukemia), explaining it to us in his blog and helping his patients.

Dr. Sharman's excellent blog featured a post called "Rituximab Monotherapy in Follicular Lymphoma" a couple of weeks ago. He hadn't posted anything about Follicular Lymphoma in a while (like I said, there's been a ton of amazing CLL news in the last few months), so I was happy to see it. And happier that I can finally say something about it.

Dr. Sharman does his usual great job of translating research into easy-to-understand terms, so there isn't much for me to say that you can't read for yourself. As he explains, he was preparing a talk about low tumor burden Follicular Lymphoma, reviewing results from 3 major studies, and wanted to share some particular statistics that he thought were relevant.

A few that I thought were interesting:

  • The average time a between diagnosis and disease progression when following watch and wait is approximately two years.  [I thought that was interesting because I started Rituxan exactly two years after  was diagnosed.]
  • In the average patient with low tumor burden indolent lymphoma who starts Rituxan (whether with maintenance or reuse) it will work for about four years before something new is needed. [I'm closing in on five years  now.]
  • In previously untreated follicular lymphoma patients who respond to Rituxan and get total of eight doses, almost half have not experienced any progression by 8 years compared to about a quarter of patients who only get four doses. [This is from the SAKK study, out of Switzerland, which looked at different dosing schedules. I'll confess, it's not a study that I have looked at a lot.]
Dr. Sharman points out that statistics from these studies haven't resulted in a course of treatment that everyone can agree on (he does mention how he uses Rituxan for low-burden FL patients, but thinks there are other ways to sue it, too). But the statistics do raise some interesting points for discussion.

Wednesday, October 1, 2014

Hope

A few days ago, when I was passing along the recent videos from Patient Power, I got a comment from a reader. If you read those posts, you know how much I stressed how hopeful those lymphoma experts were. The comment that I got was this:

I agree Bob that I wish we could control our nhl as easily by say taking a pill as like in diabetes but cancer is so much harder to manage and after all these years they haven't found a FDA approved treatment with less side effects for follicular lymphoma as of yet that can control it long term. So how hopeful do you think we can be for this approach? I am also in my forties and always afraid of what the future holds. 

I've been thinking about this comment for the last few days. My initial thought was, "How hopeful can we be? Very hopeful." But then I thought, maybe I should slow down with this, and think it through. I'm hopeful and positive by nature, so, I thought, maybe I should wait a few days and see if I still feel hopeful.

You know what? I am still hopeful.

First, let me address the fear. I understand it. I was diagnosed at 40, and I spent the first few weeks after that in a pretty deep depression, worrying about my wife and kids and making sure they will be taken care of. My wife pulled me out of the depression, but the fear didn't go away -- not for about six months. At that point, it really did get easier, little by little, to live with this every day. The fear never goes away completely. I've been dealing with retirement issues lately (though I have a way to go before retiring, and I do expect to live long enough to retire), and all of those issues are coming back -- thinking about my wife and kids, worrying a little (just a little) about some of those issues again.

So I understand the fear.

But for me, the fear is always overwhelmed by the hope.

It does seem like it's been a long time that some targeted therapies have been in development, and we're still waiting for some kind of miracle pill. But FDA approval takes a long time. Treatments don't get developed overnight, and testing takes a while, to make sure things are effective and safe.

And that's the first reason that I am hopeful -- the FDA is developing ways to get treatments to us more quickly than in the past. Testing is so important, but they're opening up ways to get treatments to us that have have been shown to be safe and effective, even if it's in a smaller group than in the past.

Here's the second reason -- history. If you look at the history of cancer treatments (I recommend Dr. Siddhartha Mukherjee's Emperor of All Maladies: A Biography of Cancer), you can see just how far we've come in the last 10 years or so. It's pretty amazing. Traditional chemotherapy is kind of like a hunting party standing in a circle and throwing rocks at a woolie mammoth. You'll hit the mammoth sometimes, but probably kill half your friends in the process. Current treatments are like Luke Skywalker hitting a two meter target in his X wing fighter and blowing up the Death Star. They can focus on a very specific target.We've come so far in such a short amount of time, I have to believe things will just speed up from here.

I have to say, I'm really liking that Luke Skywalker comparison, so let me play with it a little bit more.

Notice that Luke didn't do it on his own. As Darth Vader had Luke in his sites, Han Solo swooped in and stopped Vader and the stormtroopers from getting at Luke. This looks a lot like combination therapy to me. We're finding that a new treatment works well, but add another one, that targets a different pathway, and the combination works even better. It's another reason to be hopeful -- we're not just learning one thing about how lymphoma works, but a whole bunch. We can figure out how to attack them together. Luke AND Han. (And don't forget Chewbacca.)

And another thing to be hopeful about: Star Wars was released in 1977.  As cutting edge as it was then, it looks incredibly cheesy now. And that reminds me of something that I was told by Dr. C, the lymphoma specialist I saw a week or so after I was diagnosed. He said, "Anything you read about on the internet is already out of date."

Think about that. It's exciting to read about stuff in medical journals, but that stuff is downright old. It's the result of a few years of development, then testing in three different stages of clinical trials, which takes years, then writing and editing and publishing the article, which takes months if not years. Go back to step 1 -- there is stuff in development that we haven't even heard of yet. (In those Patient Power videos, CAR T therapy keeps coming up. We're still way early in the process there.)

So, yes, I am hopeful. Will we have a cure in the next month. No. Will we have a treatment that can control things, so we can live with Follicular Lymphoma as a chronic disease? I think so, but I don't know when. But I do know there will be lots of things that I can try until we get there.

(That reminds me of one more quote, something I heard a few years ago. Someone in the support group was told by her oncologist, "If we can keep a Follicular Lymphoma patient alive for 5 years, we can keep her alive for 50." Probably not literally true, but it's a reason for hope.)

I'm sorry if you're not a Star Wars fan, and you didn't completely understand that comparison. And that's OK if you didn't. But there's one important thing that you should understand:

When I was a kid, that movie was just called Star Wars. And that as the title for a while, until the creator decided to make three prequels, and then Star Wars became the fourth movie in the series, instead of the first. And so the creator gave Star Wars a new name.

Know what that name was?

A New Hope.