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.

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 

What's A Guy Like Me Doing at A Conference Like This?

A funny thing happened on my way to last blog post. I had been writing it over the course of a couple days and right before I posted it... I hesitated. Then I hit publish.

The post has been somewhat popular, and I'm not that surprised. For one, it was a Top 10 list. But it was also as honest as I've been in my blog and I think that helped. So did  a couple of posts on a Facebook site I hadn't discovered yet, and on one I had.  

The anticipated popularity  is part of why I hesitated. Now that more of you may be reading this, there's more pressure to post with both frequency and quality. It's the frequency that frightens me. When I switched the blog from a private thinking, and perhaps healing place to a more public forum, I resolved not to write any differently, or through any different filters. I didn't -- and still don't -- want to post on some set schedule that pushes me to post when I have nothing to say, or no time to process what I'm writing. Because first and foremost, that's what I'm doing here -- processing things by thinking out loud. Hopefully that process is also helpful to others. That means I might post three times a week sometimes; or, like this week, only once. 

Okay, enough blogging about the blog. Back to our regularly scheduled post. 

* * * * *

Some observations from the Lymphoma Research Foundation's workshop in Needham, Mass. on Saturday. 

The advance billing was: great info; great food. It delivered on that. But it was at least a little odd sitting in a room of 150 or more lymphoma patients (or family members). I've been to many conferences before. I've gone as a reporter, an editor, an exhibitor, a presenter, and just an average old attendee. But this was the first one where I went as a patient.  The room was set up in round tables and as I walked in, there were a bunch of partially filled tables, some with coats thrown over the backs of chairs holding space. I tried to find coats that looked friendly. Really. I was looking for youngish looking coats -- or even older coats that looked like they belonged to youngish people. I partially succeeded. But the oddest part was that as we made small talk about the weather, the traffic, the coffee, the overwhelming question on everyone's mind was:

"What are you in for?"

I'm sure we all wanted to know if the person sitting next to us was patient, or family member, and if patient, what type of Lymphoma patient? And what was their status? And what treatment they had? And what side effects? And a million other things. But we kept it to small talk. At first. Later, after we broke up into smaller groups of different disease types, and then broke for lunch, the ice was already broken. We knew we were all folliculars and we had more opportunity to talk.

Outside the meeting rooms, there were small tables set up for the sponsors. It's one thing to have information from a cancer center (Dana-Farber was there), or from the Mass chapter of the LRF pitching their walk-a-thon. But it felt odd to have drug companies exhibiting at a conference for cancer patients.  I know it's perfectly legitimate. It just felt odd. 

I've said it before and I'll say it again. I get someone possessive about my oncologist. Dr. L presented about the history of lymphoma and in a weird way, I was rooting for her. For what, I don't know. I suppose, I wanted her to be smart, informed, compassionate, articulate. Part of this could be because she represents Dana-Farber, my employer and center of care. But I think the deeper reason is that if she were to present well, answer questions expertly, then it would in some way reinforce the trust that I have in her as my oncologist. She did great. 

So did Dr. Freedman who answered about an hour's worth of questions from patients in the Follicular Lymphoma breakout session. The instructions to all the attendees was to try to keep the questions broad so they would appeal to as many people as possible, it didn't stop some people from using this as a public appointment with Dr. Freedman.

A lot of the discussion was focused on the issue of maintenance therapy. In short, many follicular patients have embarked on a two-year plan of Rituxan treatment once every two months, following successful treatment. There's no evidence that this so-called maintenance therapy improves overall survival, but a study has shown an increased duration of remission. Sounds good, right? Well, I had gone into the conference pretty well set on the idea of not getting maintenance. But on listening to the Q & A, and then having a discussion with my table mate -- a gentleman a little younger than me who was now about halfway through his Rituxan maintenance, I was now leaning the other way. Why not do maintenance?

That was the question I tossed about as I drove up to NH for the remainder of Matthew's soccer tournament. By the time I arrived I was convinced I would do maintenance. So after dinner, I emailed Dr. L with some questions. Shortly later, she replied. And the long and short of it is this: none of the maintenance vs no-maintenance studies involved patients who had been treated with Bendamustine-Rituxan, which is proving to likely be superior to other therapies studied. So the likely benefit of maintenance after B-R s likely to be less pronounced, or non-existent, not because of maintenance's shortcomings, but because of B-R's strengths. So we are back to making a decision based on the Do Something / Feel Healthy decision axis.

Which for me, means I'm back to no maintenance.

--Michael

Good Scans. Good News

Just a short post here to report back that I met with Dr. L to talk about the post-chemo scans and they  looked good.

But for all the good results, this has proven to be an all but impossible post for me to write and I'm not sure why. So rather than labor over this for any more than the 90 minutes that I've been laboring, I'm going to sum up:

• Scans and blood worked liked great.
• Whatever nodes that are visibly larger than normal are under 1 cm and most likely just scar tissue at this point.
• I have the choice of watching and waiting on Rituxan maintenance therapy (1 day every two months for two years). While some studies point toward some remission benefits from the Rituxan maintenance strategy, those studies didn't look at patients who had come off a BR (bendamustine-rituxan) regimen as I did, but rather at those coming off R-CHOP. And even in those studies, there wasn't necessarily an overall survival benefit.
• For me, maintenance therapy may give some sense of empowerment in that you might feel like you're actively attacking the cancer, it also to me is an acknowledgement that you're still sick, which, if you haven't guessed, means I'm leaning toward watch-and-wait.  

That's about all I have for tonight. 

--michael