Wednesday, October 1, 2014


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.


Anonymous said...

Excellent article. What is the point of living if we have no hope? I've been in CR or NED for almost 8 years and to be quite honest, there are days that go by that fNHL doesn't creep into my thoughts. I'm convinced that I will live a very long time with this disease. You can call me a fool, but I'd rather live with hope then without it.
I love your blog Bob, thanks for all you do.

Anonymous said...

THANK YOU Bob, I did not know you would think much about my comment but you did and your post truely raised my hope. I am grateful to you for your blog . I read it regularly it makes me feel we are all in this as a team against the disease. Thanks again.

Lymphomaniac said...

Jackie, I totally agree. I'll take Hopeful Fool any day. It's someone else's job to prove me wrong.
Thanks for reading.

Lymphomaniac said...

To my anonymous friend,
I'm glad you're feeling more hopeful. We really are in this together, and when I look back at my worst times, it always seems like I let myself be alone. Hope is easier when there are a bunch of us together.
Take care.