Executive summary: good scan results, lots of waiting.
Last year I spent a lot of time at SCCA. There were stretches where I went there every day, including weekends, for a few weeks at a time. “Home away from home” as a fellow patient said. When it came time to detach and go back to normal life it felt like there was something missing (I suppose there must be a medical equivalent of Stockholm Syndrome). I thought those kinds of days were over, but this past week (Dec 5-9) was almost a replay.
On Monday I had my Day 15 treatment of TRU-016. This meant having a blood draw in the lab in the morning to assess whether my various counts were within range to get treatment. Since I was getting infused later the lab went ahead and placed the IV. This was efficient, and avoided another stick, but it meant I had to go to work in the intervening 3 hours or so with an IV in the back of my hand. This is a little maudlin. By now I’m entirely used to being stuck but my co-workers were clearly taken aback. Fortunately the actual infusion was uneventful. In fact one of the main benefits of being in the clinical trial is getting infused in the special Clinical Trials Unit rather than the regular infusion area. I get in much quicker, it’s less crowded, less noisy, and by now they know me.
My blood results on Monday showed a hematocrit of 24, which is low enough to justify getting a couple of units of red cells. Nothing like fresh red blood to make everything better. The transfusion was scheduled for Tuesday at 5PM (it has to be done at night, you know). I got there on time, knowing that two units can take over 4 hours, and with the usual delays I could be bumping against closing time at 10PM. It seemed to be taking a while to get started. Then my nurse came in and said that although the appointment had been made, the blood hadn’t been ordered, so they were looking for one of my docs to order it. But even then getting it from the blood bank and getting it to my room could take … 3 hours. Big sigh. What could I do but wait? I already had the IV in. And I really wanted that blood. And when you really want blood nothing else will do.
I guess strings were pulled and favors cashed in, all for me, because the first unit showed up by 7PM and was pumping away by 7:15. Would we have time for both? Maybe, said the nurse, if we turn up the rate. Crank it up, I said, and up it went. I tried to be particularly still so as not to create any patient-side occlusion. In the end the second unit finished at 9:55 and I scampered out the door as they were turning out the lights.
On Wednesday all I had was a CT scan. This involves yet another IV so they can pump in the contrast dye that the CT detects. It also involves fasting for a few hours, and drinking some water-like stuff for an hour beforehand. This went smoothly, though it had to be rescheduled from Thursday so that the results could be ready for my meeting with my oncologist, who is only there on Thursdays. So this was a short day.
Thursday started with the usual blood draw so Dr Green could look at my numbers at our meeting. Of course the CT results were the main thing. And? The treatment does seem to be working: 60% reduction in volume of the tumors that caused the concern back in September. “In a word, terrific” said Dr Green. “So the treatment is at least doing you some good, that helps me sleep at night” he said. Also “that’s a joke.” We do have a good time at these visits, at least when the news is good. And this is good news. Still I have to carry on with the next 4 months of treatments to run the course of the trial.
Lastly on Thursday I had to get my next round of immunizations, replacing the immunities I lost last year with the transplant. Hep-A, Hep-B, Polio, something. I went back to infusion, things seemed to be taking a long time (this was regular infusion, not the CTU), and whaddaya know: “the drugs were never ordered, we have to find the doc, then it will be 45 minutes.” This had a familiar ring to it. I could come back Friday, but no. So I waited and eventually took my shots. Not as bad as an IV, but still unpleasant. (And the next day I really felt terrible from the after-effects.)
Altogether close to 20 hours at the clinic in 4 days, but with a solid dose of good news. And I don’t have to go back until my next 2-day, Dec 19 and 20. An early Christmas present.
As regular readers will recall, I was supposed to have the second round of my clinical trial treatment (Rituximab + Bendamustine + TRU-016) a couple of weeks ago (Nov 7 and 8), but it was delayed due to pneumonia and low platelet count. Yesterday I came in again, hoping I’d be deemed well enough. My cough was still rather bad sometimes, but yet another chest Xray showed the Pneu (I think of it as “the icy hand”) was under control, and my counts were all good, so I was deemed ready for chemo. It’s hard to get really excited about the opportunity to spend a couple of days hooked up to an infusion pump getting filled with mysterious and semi-poisonous fluids, but both Eve and I felt greatly relieved when the docs said it was a go.
So yesterday and today I was infused. There was a bit of nausea last night; I should have taken the Zofran they offered during the day. But I have some at home, and it did the trick. I’ll be taking some again today. I have to prepare my digestive system for the Thanksgiving marathon. And yes, I’ll be making my famous dinner rolls.
The next event, probably, will be a CT scan to see if I’m responding to treatment. That will happen in a couple of weeks. I am hopeful that there will be much less of interest to report going forward, at least about non-puppy topics.
As I’ve mentioned, there is now a puppy in our household. First a pic, then the entirely too long story (which could be much longer, I assure you).
That’s Oliver, coming into our house for the first time, last Tuesday (Nov 15). Pretty darned cute, no?
I haven’t written before about Our Really Bad Summer, but I guess I have to do so now to explain how we got here. Many of you will have heard the story.
On June 20, Eve was playing soccer in the evening with her “old ladies team” (over 50). It’s a great activity, but as it turns out, a little dangerous. The other team was short on players, so Eve was playing forward for the other team. She was advancing on the goal with the ball, confronted by the goalkeeper (her regular team’s keeper, that is). The keeper challenged, they crossed shins, and Eve’s tibia was cleanly fractured, about 8 inches above the ankle, right through the shin guard (we should sue). This was painful. The ref said “play on!” Eve said “I don’t think so.” Eve said later “I always thought she played a little aggressively.”
As it happened I was out of town, at a meeting in Columbus, Ohio. Annika was able to take Eve to UW hospital (yes, the very same) where her leg was stabilized and she was put on a morphine drip. I only heard about it when I called to check in that evening.
That was bad. At that time we were in the middle of a kitchen remodel, so the house was already torn up, making life difficult. The next day, June 21, our beloved dog Cali escaped from the backyard and went roaming around the neighborhood, as was her wont. Unfortunately this time she was hit by a car and killed. Annika answered the door when the animal control officer came to report the incident, and broke down. The officer called my cellphone, just after I had finished my talk at the conference. I felt as though I were in one of those bad movies where God would look down and ask me if I knew why I was being punished this way (as it turned out she didn’t, so I’m still wondering).
I ran right to the airport and flew home, despite violent thunderstorms in the Columbus area (“hey, what else could go wrong?”). The kids were not happy campers. I waited until the next morning to go tell Eve the news; she was still doped up at the hospital. This was really bad.
Recovering from a broken leg is not easy, especially when your house is torn up. Eve was in a hip-to-toe cast for a week, then a knee-to-toe cast for two months, then a walking boot for another couple of months. This pretty much wiped out the summer, which is especially hard on someone who loves to garden, and to play soccer. She’s still doing physical therapy for it to this day (Day 152).
My response, a week or two after the incidents, was to come down with shingles, which is said to be a condition brought on by stress. I guess there must have been some stress. That lasted for a few weeks of pain and discomfort. Acupuncture seemed to really help.
So, as Eve and I healed, and the kitchen project (which could be the subject of its own post, but I’ll spare you) wound on, our thoughts turned to our missing pup. A broken leg will heal, but a lost pet will not. We’ll always miss her, but we felt we had to do something. Eve took to the intertubes, and eventually we convinced ourselves that we needed to get another dog of the same breed.
Cali was a Kooikerhondje, a Dutch spaniel-y breed that used to be used for a kind of duck herding (you can read about it). They also appear in many Old Master paintings, Jan Steen in particular. I picked her up from the breeder in the Netherlands after a meeting in Paris in 2005. Why an expensive trip to get an expensive designer dog from Europe? Isn’t that a little … excessive? Yes, it is, very excessive. Sometimes you just have to do things that are a little crazy. And she was indeed a great dog. At least it wasn’t a Maserati or a SubZero fridge.
But twice? Isn’t that beyond excessive? I suppose so. Grief will move people in funny ways. Anyway: after a great deal of browsing and email and phone calls and family discussions, Eve reserved a newly-born male puppy from a breeder who is an official in the Dutch Kooikerhondje association. The timing worked so that a trip at the right time to pick up the puppy (8 weeks) would also permit going to the annual championship event of the Kooiker club, at which our breeder Carla was a head judge. Over 130 Kooikers were there. Below are the male (left) and female winners. Pretty handsome, don’t you think?
I guess it was a wild time with all them dogs about. Eve was able to attend with Carla and with a couple of American Kooiker enthusiasts who came over just for the event (at least we were picking up a puppy, eh?). Here is Eve holding Oliver (who at the time was still called Trooper, per the T naming theme seen at the bottom of this page):
That’s Ollie’s sister on the right, being held by Carla’s daughter. The adult Kooiker in the middle is their father, who clearly would rather be somewhere else (like any dad).
Eve and friends were also able to visit an “eendenkooi” (which means “duck trap”; “kooi” is the origin of the English word “decoy”), which is the arrangement that was used to catch ducks, for which the Kooikerhondje was a key component assisting the Kooiker (the trap guy). The site is a combination nature preserve and historical site and apparently was quite fun (despite what you might be thinking). (No pix, sorry.)
Oliver is now home and causing trouble as puppies will. I’m looking forward to seeing him when I return home later today.
Alternate titles: Pneumonia Month, A Turn for the Worse.
Since having a bad pneumonia day a couple of weeks ago I had been getting better, but the hammer came down again this past Tuesday (Nov 15) when I started coughing a lot. By Wednesday morning I was once again collapsed on the couch with a fever. Eve called SCCA and we went in that afternoon. At one point my temp was up to 104°F (40°C) which is cause for alarm. I was started right away on hydration and antibiotics, but it was clear that this was more than we could handle at home so I was taken by “medical transport” (aka ambulance; my third such trip so far) to UW Medical Center Hospital (just a couple of miles away) for a nice stay.
I guess it’s a good thing I didn’t go to Taiwan. Though maybe the warm wet tropical climate and hot stuffy meeting rooms full of shouting nerds would have been just the thing. Maybe not.
Also, just to report, this past Monday (Nov 14) I was supposed to get my next round of R+B+T chemo. But I didn’t, because my platelet count (56K) was too low (spose to be 75K). We’re waiting until next week, which is supposed to be the max waiting time (6 weeks) according to the clinical trial rules. It’s all up in the air at this point.
I’ve been getting more hydration and antibiotics here in the hospital. They also offered me all the medications I was taking when I was here last year after my transplant (this is Day 541, by the way), oddly enough. As I write this from my hospital bed on Friday I’m much better (a unit of red cells certainly helped; my hematocrit was 24) still coughing but quite a bit less. No fever or pain, eating and drinking, moving about, blogging (which uses more calories than running a triathlon, I hear). But several test results remain to be seen, and my fever has to be down for 48 hours. Plus they always keep you longer than they say. So maybe I’ll be home tomorrow, maybe Sunday.
I’d be anxious to get home in any case of course, but especially so now because of the presence of our new puppy Oliver. He arrived, as it happens, on the same day I took my wrong turn, i.e. Tuesday. Hmm. More about that in the next post.
Also, regarding “Occupy”, my palatial hospital room looks down on the Montlake Cut, which is right near where the Nov 17 Occupy-associated “Jobs Not Cuts” demonstration took place yesterday. I couldn’t quite see it from my window, and at that point I couldn’t get out of bed much anyway. Too bad I couldn’t be there.
Today is World Pneumonia Day. Pneumonia is the world’s leading killer of children under age 5, yet it is among the most solvable of global health problems. I’m giving to the GAVI campaign. How about you?
I’m also participating by being a pneumonia sufferer. A week ago Friday (November 4) I finally succumbed to a cough that had been building for a few days and could barely get out of bed. The day ended with me getting hydration on the SCCA infusion floor. No doubt the proximate cause was a cold, wet, and ultimately fruitless evening watching the final Sounders game of the season. And of course my immune system was weakened due to the first round of chemo a few weeks before. Antibiotics were available fo me, though, and plenty of rest and nutrition, unlike all those 5-and-unders dying of pneumonia. So I’m much better now, still coughing, but a lucky guy in the big scheme of things.
I was scheduled to get round 2 of R+B+T on Nov 7 and 8, but the combination of the pneumonia and a low platelet count led the docs to decide to delay. This was not bad news to me, since I was hoping to attend IETF 82 in Taipei this coming week. I had my reservations all ready, and was reading those Internet Drafts, but as the week wound on and the cough persisted it became clear that it probably was a bad idea to go: many hours in the plane, jet lag, wet tropical climate, close quarters with worldwide geeks all added up to Too Much Risk. So I’m staying home. But, a note to other frequent travelers: apparently sometimes an absolutely non-refundable hotel reservation via Expedia can in fact be refunded; no guarantees but good to know.
Chemo is now set for Monday and Tuesday, Nov 14 1nd 15. I’ll let you know how it goes.
I’m staying home by myself, as it happens, since Eve is in the Netherlands on a dog-related trip (more on that later), and (since we were both going to be away) Julia is in Boston visiting Annika at Northeastern. So I made some bread:
Yesterday was, of course, Nigel Tufnel Day. I celebrated by watching This Is Spinal Tap, which fortunately is available via streaming from the video service that dare not say its name. Just as good as ever, like lukewarm water.
Two days into the new treatment regime and things are OK. The docs say “side-effect-free, more or less”. The less part is that after two days of all-day infusion at SCCA (TRU-016 plus Bendamustine on day 1, Rituximab plus Bendamustine on day 2) I was able to go to work the next day (ie, today). This is certainly different than either of my previous cycles, where I pretty much was zonked out on the couch for several days after treatment, as I dimly recall. So that’s good.
The more part is that I definitely have chemo stomach, which is this constant poisoned feeling that is rather unpleasant. It hasn’t kept me from eating though, or baking. I had some raspberries and blackberries from the farmer’s market that were too sour to eat plain, so Monday night (day 1) I made a couple of galettes out of them. Not bad, but not up to my usual standards. Perhaps cognitive impairment has set in. I’ll have to make some baguettes this weekend to see about this.
I’m about to add a new chapter to my cancer treatment story.
For those who have come in late: in January 2008 I was diagnosed with Stage 4 follicular lymphoma, type 3. I was treated from January to May with a regimen called R-CHOP. The R is for Rituximab, a monoclonal antibody that causes the body’s immune system to attack the B cells that cause the disease.
Despite the apparent success of that treatment, by fall 2009 it was clear that the disease had revved up again. In February 2010 I began treatment leading up to a stem cell transplant on May 26 2011 (my new birthday). An SCT is a harrowing process involving lots more chemo and radiation. Most of this blog is about that treatment, which was successful in eliminating any evidence of the disease. But with follicular lymphoma they never use the word “cure”.
I had clean scans in late 2010 and March 2011, but my September 2011 scan showed a couple of small nodes growing near my aorta. This news was, shall we say, disappointing, as I’d hoped to get a few years of disease-free living from the transplant. It’s always something.
So on Monday October 10 2011 I’ll be starting a new round of treatment. This regimen has its very own webpage at clinicaltrials.gov because it is indeed a clinical trial. This doesn’t mean that I have exhausted other forms of treatment and am now cast adrift on the uncertain seas of trials. Only one of the three drugs in this regimen is really new. One of the other two is good old Rituximab. Another is Bendamustine, which is new to me but in the last couple of years has become the standard of care for FL. If I were newly diagnosed now with follicular lymphoma I would probably get R+B rather than the R-CHOP I got in 2008. So most of this regimen is business as usual. The trial drug, TRU-016, just adds a new wrinkle. It is another monoclonal antibody that attaches to a different protein (CD37) than does Rituximab (CD20). You can read the abstract:
Furthermore, the triple combination of TRU-016 with rituximab, bendamustine or temsirolimus displayed greater anti-tumor activity in vivo than each of the agents alone against a follicular lymphoma tumor model.
Sounds good to me.
The claim is that all these agents are well-tolerated and that others getting them report little to no side effects. We’ll see how I do. At least it’s unlikely I’ll lose my hair again.
On the other hand the point of this phase of the trial is to investigate “dose-limiting toxicity” of TRU-016 which has an ominous ring to it. But according to the doc this is just something they have to do to qualify the drug, there’s no reason to think that it would be toxic at any conceivable dose; so the only limiting factor in dosage is cost …
If all goes well I’ll get treatment in 4-week cycles, 6 cycles in all, ending in late March 2012, just in time for the Paris IETF; maybe even the Coupe du Monde de la Boulangerie.
More news as it happens.
Several months ago I posted a little list of things to forward to. This week I checked off another one: skiing with the family at Silver Star ski resort, near Vernon in central British Columbia.
Coming to Silver Star has been our family’s annual treat since 2002. I can always remember which year it was because we were in a tiny condo and spent all our non-ski time watching the Winter Olympics, which were rather popular in Canada despite being held in the United States that year. As I recall we mostly watched a channel dedicated to curling. (Women’s curling: sexiest sport ever.)
We have come up every year since then, except 2008 and 2010, when some health stuff got in the way. Originally we came here because Silver Star has extensive Nordic trails as well as its famous downhill areas. Eve and I wanted to get the kids into cross-country skiing while maybe fooling around a little with the other kind. Then Eve discovered the new-fangled shaped skis (she hadn’t skied downhill since she was a teenager) and the game was up. We still bring our XC gear, but some years it doesn’t get used at all. Oh well.
Why Silver Star is such a big deal for us is hard to say, since we’re not a big skiing family. Some years our week-long trip here is the only skiing we do. It’s the tradition. Also, I should mention, Bugaboo’s Bakery and Cafe, which makes truly amazing pastries (the strudel alone is worth the trip). Julia says Silver Star is her favorite place in the world.
Here’s this year’s family picture on the Silver Queen lift:
A good time was had by all, though Eve’s knee was hurting from a soccer injury (my knees always hurt), so she had to relinquish the title of Best Skier in the Family to Annika, who went off by herself to do the black diamond runs in Putnam Creek. (Julia is a boarder so in a different category.) As always I was The Slow Guy.
The major memory this time will be that it has been Damn Cold. Today the high was maybe -15C, which is 5F. After being cold yesterday when it was only slightly warmer, today (our last day) I did pretty well with 5 layers on top and three on the bottom, plus chemical hand and toe warmers. Even so I was done by 1:30PM or so. As I write this the outside thermometer says it’s -22C, about -8F. In the hot tub this evening while my body was fine in the 40C water my head felt like I was going up the lift to the top of the mountain. Corporal dissonance.
Also notable this year has been the absence of Americans, presumably due to the poor exchange rate. Between that, and the economy in general, and the weather, the runs and lifts seemed deserted. Nice for us, but a little disconcerting.
I really didn’t know how I would do skiing-wise, given this is Day 274 and I suppose I am still recovering. I guess most stem-cell transplant patients don’t go skiing for a week during their first year. But hey, we have our traditions. I felt pretty good for the most part, though I didn’t attempt some challenging runs I had done (aka survived) in previous years. My legs became very tired quickly, more effects from all that hospital time last year I suppose. But hey, it was fun.
This may be the last year for a while, since Annika is a senior so most likely will be in college somewhere a year from now. This will give me time to get my legs in shape by 2018 or so, the next chance for the four of us to make the trip.
Tomorrow we head back home (a 9-hour drive), and it will be time to get started on that backyard wood-fired oven.
Today, as a celebration of September, I rode my bike to work for the first time since perhaps March. It was hard going up the hill from home, since I’m very much out of shape. Fortunately in the last few months the battery on my bike computer died, so I couldn’t see how slow I was going, but it was obvious enough. Still, cycling remains the best way to get to work for me. Parking is a nightmare, I am still deemed (by Eve) too vulnerable to take the bus, and getting rides from family members is not very convenient. So a bit of freedom today, and exercise too.
I started back to work (that is, going in to the office) on July 28 (Day 63). It feels good to see everyone, and to get back into the rhythm of the place, as much as I am able to. For those who don’t know, half of my job is working for UW doing local IT things. The other half is working for Internet2 and the InCommon Federation doing national and international IT things. Since the I+I work is all email and phone calls with people scattered about the planet, I’ve been able to keep up with that fairly well through my ordeal. People don’t really know if I’m calling from the couch (only when the dog barks). But UW people insist on meeting in person, chatting in hallways and such, so it’s much harder to keep in touch if I’m not there. So it’s good to be in the office, even if I’m not quite ready for full-time yet.
Last Tuesday, August 24 2010, Day 90, I had a CT scan of head, abdomen, and pelvis, my first full-body scan since the transplant. Yesterday I got the results: all clean, no nodes visible. The next scan will be in four months (a Christmas surprise, I guess). In the meantime I continue to get better, slowly, but I’ll say more about that in another post.