Cancer is complex -- biologically, physically and mentally. This is my blog to sort out some of that complexity. Diagnosed with follicular lymphoma in 2011, I started blogging about my cancer the day after I was diagnosed. Part mental therapy, part conversation, and part update, the blog talks about all the myriad aspects of being diagnosed with cancer -- symptoms, treatment, attitude, support, research and many other topics.
Clinical Trial - Week Two is in the books and by all accounts, it's an improvement. For one, the actual infusion was three hours shorter. For another, the actual participants (that would be me) approached it a little smarter. The only issues we had were: 1) the food cart that usually goes around didn’t make it around because they were short on volunteers for the day (Matthew - where were you?) and 2) the Benadryl IV made the room spin like I drank a bottle of Ouzo. Unfortunately, I hadn’t. But fortunately, the vertigo subsided after about 10 minutes.
The side effects were also better than week one. This is counterintuitive as it is possible for side effects to accumulate throughout the course of treatment. It happened to some extent the first treatment course five years ago, but again, that involved a more toxic chemo (Bendamustine). In fact, I still blame Bendamustine for some long-term mildly annoying effects which I won’t go into here.
But this week, Saturday produced only the mildest effects that didn’t interfere with my exciting day of errands and lawn mowing. And by Sunday, I went for one of my best runs in a LONG time. A short run (yes, PB, a baby run), but one at my normal pace and with no sluggishness. All in all, a good week.
But here’s the catch. For the 99% of us cancer patients/survivors who have at least a mild amount of canxiety (cancer anxiety, that is), we start thinking, “Wait, if the side effects aren’t bad, does that mean the treatment isn’t working?” To which, I’d say, “No. It doesn’t mean that at all.” In fact, we’ve written about that on our Dana-Farber blog. We won’t know how well things worked for 2.5 months post treatment when we do scans again. What should we expect for then? What if it doesn’t work? What if it does? Where do we go next? All good questions that I’m going to try not to dwell on until we get there.
ps - for reference, here's what I was thinking halfway through my six-month chemo regimen five years ago
I started writing this post yesterday with the idea that I’d give the blow-by-blow from day one, complete with time stamp. But, if you want to know the truth, day one was long and boring, and a detailed post on the subject would be the same.
So instead, some thoughts on day one and how I’m doing 3+ days after infusion. Spoiler alert: I ran 3.5 miles this morning and while it may have been about 15 seconds off my normal pace, I ran negative splits and, well, I’m doing fine.
That’s about how I expected I would be. But as I always do, I probably underestimated the overall impact of starting treatment for the second time. Perhaps it’s a natural cognitive defense to minimize upcoming unpleasantries; perhaps it’s just me.
Infusion day itself wasn’t that dramatic (there was a little drama, more on that later) but just long. I left my house around 5:45 am and got home around 10;15 pm. Stacy drove in once. Went home. Took a train back in with Noah, and then drove us all home. So it was lonnnnnnng. For me. For her. For the nurses. (Okay, I know it’s cliche to sing the praises of infusion nurses, but really, they are incredible. We take for granted that they are professionals through and through, but their warmth and kindness over 9+ hours of infusion is invaluable.)
At least 90 percent of the day’s length had nothing to do with the fact that it was a clinical trial and was due to a slow weaning on to the Rituxan meds. About an hour into it, I was starting to have some reaction which led to pausing the infusion, administering some more Benadryl, and then continuing on our merry little infusion way.
But here was the first of the underestimating.. Given that I had Rituxan in the past, I thought it’d be quicker this go round. Not so much. And I also figured, I’ll drive home. No big deal. Except for the fact that I was loaded up on Benadryl.
So we’ve got a better game plan for day two this week, both in the transportation front, and also, the snacking front. And my advice for anyone reading this who is or knows a cancer patient is: prepare for the worst, hope for the best.
I’m not a cancer rookie. Yet still, my initial plan was, treatment in the morning, back in my office in the pm. Carry on. When that became untenable, my plan shifted to: treatment Thursday, back in the office on Friday. When treatment didn’t end till 8:30 on Thursday, that shifted to: work from home on Friday.
And that plan has worked. The good news about this treatment vs. 2012 is that there is no Bendamustine, which has a nastier side effect profile. The best way to describe the side effects for this is that about 48 hours out from infusion, you feel like you have a mild hangover, less the fun of drinking the night before. So other than being a little foggy, a little tired, and a little achy on Saturday, no ill effects. By Sunday I was pretty much side effect free.
Now I'm three days out and, well, see the note about the run this morning — always my barometer of health. And we now have a good plan for next three treatments which will have me working from home on Friday.
So that’s where we are, mid-way through week one. Looking forward to being back in the office tomorrow, and hoping for a shorter day on Thursday.
Finally, just a quick shout of thanks to everyone for the well wishes via the blog or Facebook or via text or email or any other way. It was both a great distraction and buoyed my spirits on a long day.
It's that time again. Time to blog... and time to treat.
Tomorrow I'll start a short clinical trial -- four weeks -- in which we test the combination of Rituxan with Imprime versus the standard treatment, just Rituxan. The trial is open to patients with relapsed/refractory follicular lymphoma, and I'm eligible which means that my lymphoma has relapsed.
That's elicited a few questions this week. (More on that later.) Does this mean your lymphoma is back? Did it ever leave? Is it getting worse? Are you okay? To which the answers are yes, sort of, not really but sort of, and yes, definitely.
So here's the deal: follicular lymphoma, as I've known since the start is an incurable chronic disease. It never really goes away. That's bad. But it's often very slow growing. That's good. So five years ago, after I did my six rounds of Bendamustine and Rituxan, it went away. Sort of. And then slowly grew back, like pesky hedges that you didn't really notice were growing until they started overtaking your yard. So you get out the hedge trimmers and beat them back. Eventually, they'll grow again, but right now, there's no way to remove the hedges completely.
As has been the case for the more than six years since diagnosis, I've had no symptoms, other than the occasional small swollen lymph node. I feel fine.
So why treat? Well, not treating was an option, as was the option of just Rituxan. And Rituxan (and hopefully Rituxan plus Imprime) is a good treatment options for trimming back the hedges when they aren't too big and bulky. And right now, my hedges are just a little overgrown.
I'm also happy to have the chance to contribute in a small way to cancer research. It's through clinical trials that research moves forward. (There's a great post and podcast about that on our Dana-Farber blog.) If it weren't for clinical trials, today's approval of Car T-Cell Therapy wouldn't have happened. And, coincidentally enough, Car T-Cell therapy is an approach being tested in many blood cancers, including follicular lymphoma. And, may, big emphasis on the may, become a way to remove the hedges completely. Talking about Cancer
For more than nine years, I've worked at one of the premier cancer centers. For more than six years, I've had cancer. Yet, I hesitated talking about my new treatment plans. For about a week, I procrastinated before telling my colleagues. I'm not sure why, to be honest. I think partly I was concerned about people being concerned. I don't like people worrying about me. But the other part of the answer is that I feel fine and until I'm sitting in the infusion chair tomorrow with stuff dripping into me, it doesn't feel like a big deal. I've known so many people who have had such challenging treatments, that a once-a-week treatment for four weeks seems kind of trivial.
In the end, though, I'm glad I ended up telling folks. It felt good to do, and the notes of support have been great to hear.
I like BoingBoing.net and I follow Xeni Jardin, one of its editors, on various social media channels. As usual, she wrote a thoughtful piece, this one on the many well wishers who surfaced on social media and elsewhere after John McCain's recent glioblastoma diagnosis. And more to the point, she drove down the well-travelled road of how people wished him well, and the language they used.
Jardin is a cancer survivor and for her, and many people, the "cancer is a war, battle, fight" metaphor is a troubling one. I've had this discussion dozens of times in the last nine years in which I've worked at Dana-Farber. I've had it before I was a patient, and I've had it since I was a patient. And my position remains the same: Who cares?
I completely get both sides of the argument. I've been an athlete for many years; I love to compete. And I get the idea that someone telling you to "fight"is akin to a crowd cheering you on in the final mile of a marathon. It can be uplifting.
I also get the point that when you're so tired that the prospect of walking from your couch to your bed is more than you can even imagine; when you can't even muster the strength to read a book let alone write a blog post; then the notion of battling is so foreign an idea that it can feel burdensome at best, debilitating at worst.
But, As Jardin writes: "There's no one right thing to say when someone gets diagnosed with cancer. Even if there were, nobody elected me to be the cancer vocabulary police." I couldn't agree more. Different people want different things from their support network, and in theory, their support network would know them well enough to know whether telling them to "give it hell" would be encouraging or offensive. When you are as public a figure as Sen. McCain, though, the wishes come from near and very far. And people, looking to say something (and, no doubt, some people are looking to be noticed for saying something) fall back on metaphors and cliches.
In my dichotomy, there are only two types of people. Those who wish you well and those who don't. And if the intent is to wish you well, then as long as they don't say things like:
"Oh, I hope you have life insurance." Or, "My third-cousin's sister's best friend died from follicular lymphoma." Or, "Don't poison your body with chemo." Or any similar not-so-sage advice.