Friday, December 8, 2017

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.

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