Post Treatment Scans: The Results are In

Massage, ahhh. Photo courtesy of Dana-Farber. Note: that is not my foot. 

Scans. A mini-milestone birthday. An oncology massage. It’s been a busy week. 

Let’s start with the scans. As Dr. L said (immediately as she walked into the room), “Scans look good.” After four weeks of a clinical trial involving Rituxan and Imprime back in August and September, it was 10 weeks of waiting until until CT scans would tell us see if the Rituxan did the trick. Short answer it did. The usual trifecta of Neck, Abdomen/Pelvis, and Chest scans all came back good. The highlights:

From the Chest pics: 

No enlarged lymph nodes. 

From the Abdomen/Pelvis pics:

Interval decrease in size of multistation lymphadenopathy

No new lymphadenopathy 

From the Neck pics:

The multiple previously enlarged lymph nodes in the neck have

markedly decreased in size, with no current lymphadenopathy

That's my emphasis, of course. But add that to the very normal blood results and it makes  for a very nice 55th birthday present, thank you very much... except for the not eating for four hours or so. And the drinking the usual cocktail of Omnipaque and Lemonade. Bleh. But I’ll take that any day for results like this. 

What's more, it’s possible that the Rituxan will continue to work beyond what it's already done. We’ll see when we return to the scanning table in six months. But for now, the biggest issue I have is tight calf muscles and even those are doing a lot better. 

Like many things, I blame my calf muscles on cancer. My theory goes that either the disease or the chemo has changed something in my muscles or my tissue that has caused my calf muscles to be tight, even tighter than they usually are. At times, I've been able to run through it. Other times, I've been able to stop and stretch it out and continue on a run. But there have been times when I had to stop my run, midway through and limp my way home. There were even a few weeks where I had to stop running altogether. And if you know how important running is to me, you know that's a bad thing. 

Of course, there's the possibility that I'm just getting older and the wear and tear is getting to my legs. 

Possible. I've been running off an on for probably 45 years. But like anything going wrong in my body these last six plus years, I prefer to blame it on the cancer. There's certainly anecdotal evidence to support the theory from other lymphoma patients and survivors -- but then, dig around the Internet enough and you'll find evidence to support just about any theory. For instance, one myth surfacing in social media groups is that massages are bad for lymphoma patients because in massaging the muscles, you stimulate the lymphatic system and move the cancer cells around the body. Sounds crazy, right? Cause it is.

Fortunately, Dana-Farber has a full integrative services and wellness center which offers, among other things, oncology massage and acupuncture. So part out of desperation, and part out of convenience (I can walk from my office to the center), I went in for an integrative therapy consult and then signed up for three sessions of acupuncture and a couple of massages. Interesting and relaxing as it was, the acupuncture didn't seem to do much (I'm told that acupuncture is most effective in treating treatment-related fatigue and nausea). However, the massages? Great. After the first one, I was able to have a three-run week at my regular speed and distance. Yesterday, after my second one, I tried out the myth of "massage is dangerous to lymphoma patients" on my masseuse. Her reaction "If that were true, your doctor would tell you to stop walking because that stimulates your blood, too." 

My oncologist's reaction was an emphatic roll of the eyes, as well as the suggestion of magnesium supplement. (My masseuse might have rolled her eyes, too. Hard to tell when you're face down on a massage table.) 

So that's where we are. After about a week of Magnesium supplements and my second massage today, my calf muscles feel about as good as new. Or about as good as a 55-year-old can expect. Looking forward to a couple of runs this weekend. It's not only been a busy week, but a pretty good one too.

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.

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. 

--Michael

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.

--Michael

ps - for reference, here's what I was thinking halfway through my six-month chemo regimen five years ago

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. 

Underestimating

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.

—Michael 

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.

--Michael

Can We Please Stop Talking About How We Talk About Cancer?

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.

I'm good.

Thoughts from Across The Pond

 A look back across  the River Cam, at I believe Trinity College (but don't quote me) in Cambridge, UK

ED NOTE: I wrote this back in February... but never published it. So four months later, here it is.


It's Saturday night. About 15 degrees outside. I've got a fire burning in the fireplace, a beer beside me, and I'm writing. Life is good.

Last Sunday we returned from a week in London, a trip we've been talking about for years. We had always wanted one trip where the kids were exposed to a different culture -- and even with a shared language (mostly), the UK definitely has a different culture.

The boys at our tour of Stamford Bridge, home to Chelsea FC

It was a great trip - full of all the expected sights that London has to offer, Westminster Abbey, Tower of London, Globe Theatre, and of course, a Chelsea game. Definitely a highlight for the boys. I think Cambridge was the highlight for me. That, and the fact that for a solid week, I didn't even think about my lymphoma.

It's not that cancer itself didn't come up. There were ads for it, and even a Cancer Research UK retail shop. But even as I thought of cancer, I didn't think of my cancer. And that seems somewhat remarkable to me.

Game Day Selfie 

But in some ways it's the natural evolution of my thought process. Six years in and lymphoma is so now fully part of who I am that it doesn't require me to think of it separately. I don't think that's a bad thing -- it's just a thing.  I always had a hard time with the concept of follicular lymphoma as a chronic disease. I kind of thought that it was called that because there was no cure, and the alternative label would be fatal disease. It's only recently that I've really come to believe that it's just something that hopefully I'll have to deal with for a while.

And a quick medical update... April visit was as uneventful as they come so we just move on to July and a PET/CT scan as planned.

A Quick Update

I've been toying with the idea of resuscitating this blog. Not sure if I will or not, but I find it nearly impossible that it's been almost a year since my last post. A lot has happened and nothing has happened. In that time, I've had four appointments, four blood draws, one scan, and one unrelated colonoscopy. So a typical year.

The scans in July, six months after this post, showed things were stable. There was discussion of possible new treatment options, some clinical trial options, but in the end, I've been moving toward a philosophy of don't do anything unless I have to.

In October and again yesterday, my blood work and examination showed nothing to be concerned with, so we are putting off another scan for six more months (Woohoo!) -- unless something shows up in April that makes us want to scan sooner.

So all in all, things are good. Hope to be back to this space on a regular basis, but only if I have something more thoughtful to say than what I've said above :)

--michael