Thursday, October 19, 2017

FDA Approves CAR T Cell Therapy for Adult Lymphoma

I don't usually use this forum for "breaking news" but for those who follow FDA approvals and such, there was some exciting news out of the FDA last night.

They approved CAR T-Cell therapy for adults for the first time. Our Dana-Farber blog has more info on it, along with a good little video explaining what it is (I embedded it below).

Personally, I'm VERY far away from needing anything as powerful as this. As we write, "The patients Jacobson and her team are currently treating with CAR T-cell therapy at DF/BWCC have highly refractory and fast-growing blood cancers, and have suffered a year or more of disappointing results with relatively toxic therapies."

That's not me. But it's exciting news and there are follicular lymphoma patients who are part of the clinical trial. (There are many clinical trials underway studying CAR T-cell therapy), And it's comforting to know that this is a potential therapy down the line, should I ever need it.

Sunday, October 1, 2017

All Done

So where are we? 

I’m occupying that strange land that lies at the end of treatment and  before we take the pretty pictures that tell us how effective that treatment was. Scans won’t happen for another two months but rather than feeling overwhelmed by anxiety, I  feel pretty calm. Not to sound like a seasoned veteran but I’ve done this before. Rituxan worked before. I have no reason to believe it won’t work again. And if it doesn’t, well, we’ll address that when we get there. So until then…some comments and observations about this round of treatment.

Treatment Not Chemo
First go round, I did Rituxan and Bendamustine. The latter (Bendamustine) is a nasty toxic little chemical substance, thus it is definitely chemotherapy. Rituxan, on the other hand, is a monoclonal antibody — so a type of immuno, not chemo, therapy. This go round? No Bendamustine thankfully. So that’s why I refer to it as treatment and not chemo. In case you were wondering.

Easy Does It
Because it's a targeted treatment, and not the broad, systemic toxin that Bendamustine is, the Rituxan treatment is about as easy as it goes. I felt fine, with the except for a little headache, fogginess on the Saturday after each treatment. I continued my running each week, and this week, I'm back up to my 10-15 mile a week schedule. That's great, but it creates a strange disconnect when you're sitting in the waiting room, about to get treatment feeling healthy, and are surrounded by people much sicker than you. I felt simultaneously lucky and guilty, and occasionally apprehensive, after all since the eighth floor is all hematologic oncology, all the patients there were likely lymphoma, leukemia or myeloma patients. Hard not to see the sicker patients and wonder if that could be you some day.

Super Sensitive
Ever drink too much and couldn’t move your head (or any part of your body) without the whole room spinning? Couldn’t shut your eyes? Couldn’t move your eyes? Yeah, that’s me on too much Benadryl, all at once.

So on week three, Lana, my angel of a nurse (more on her later), slowly, slowly pushed the Benadryl in my IV. It was the slowest she’s ever pushed 50 mls of Benadryl, she said. What’s the point? When it comes to medicine, I’m super sensitive. Makes for a cheap date.

The slow push worked well — some vertigo but manageable. And by week four, we were feeling confident enough that I wouldn’t react to the Rituxan that we went back to Benadryl pills. Much better.

Little Things Matter
When you’re spending seven (the shortest day) to 11 hours (the longest day) in the same infusion chair with the same staff, little things matter. Having Stacy there for the second half of each day was key. Often, we were just surfing on our own devices much of the time, but the physical company helps. So do the little things that Dana-Farber does, like having volunteers push around a food cart for refreshments. And smiling. Nurses, techs, volunteers all greet you with a smile. When you’re going through treatment — even when it’s as relatively easy as mine was — a smile helps. 

Big Things Matter, Too
One of the biggest things about doing a course of infusion is having the same infusion nurse. No matter that all the notes from previous rounds are well documented, and that they’re all capable and nice. As a patient, you feel like your nurse knows you. And I felt like Lana knew us — me and Stacy. It was Lana, my nurse, who was there well past her shift end, when my first infusion lasted until 8:30 pm. I was glad to see her familiar (and yes, smiling) face on weeks 2 and 3. And when she wasn’t my nurse on week 4, she still checked in to see how we were doing. I remember when the Yawkey building opened back in in 2011, I was on a few committees and as people talked about the clinic switchover form one building to the new building, one of the big concerns was whether patients would have their same infusion nurse. I didn’t see the big deal back then. I get it now. 


Wednesday, September 13, 2017

Halfway There - 2017 Edition

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

Monday, September 4, 2017

What's It Like to Participate in a Clinical Trial? Week 1

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. 

Side Effects
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.