B is the word.

March 1, 2012

C Word

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It’s a normal enough question:  how are you? I hear it more than usual these days, often followed by: no, really, how are you doing? I say: I’m fine.

The other day I was asked this question by a friend who was the caregiver for her husband during his 10 years of living with colon cancer; he died last year.

She said “how are you?” I said “I’m fine.” She said “good!”

I said “You know, I’m not really fine.” She said, “Yes, I know. I know that ‘fine’ that doesn’t mean ‘fine’. I didn’t mean ‘good’ either.” I said “ah.”

So how am I?  I’m fine. How are you?

February 25, 2012

C Word

Comments Off on 5Q – Q = me

On Thursday Feb 23 I met with Dr. Bart Scott who is a specialist in myelodysplastic syndrome (MDS). The reason for this is that MDS is my new diagnosis. This is a “secondary cancer”, that is, a new cancer, not lymphoma, one which presumably originated from my transplant treatment in 2010.

The specific condition that has been identified, as I mentioned in my previous post, is Chromosome 5q deletion syndrome, aka 5q-, aka del(5q). Some blood cells produced by my marrow have this flaw. It is thought that these cells, already defective, also have some negative effect on other normal cells, sucking up more than their share of resources (the social metaphor is obvious …). The overall effect is a reduction not only in the quantity of blood cells but in quality as well.  My blood is just lame.

The good part is that there are many other possible signs of MDS (high blas countts in the marrow, etc) and I don’t have those. However, this condition is “pre-leukemic”, meaning that if left untreated it would likely morph into leukemia. That would be bad.

The recommendation is for me to undergo another stem cell transplant as soon as possible. In 2010 I had an autologous transplant, meaning that stem cells were drawn from my own blood, frozen, then put back in after my blood-production system was wiped out via chemo and radiation. The upcoming transplant will be allogeneic, meaning that the stem cells will come from a donor. The good side is that the promise of a new blood production system, if it all works, could fix the MDS, and even greatly reduce the likelihood of a recurrence of the lymphoma (notice how I avoid the word “cure”). The bad side, other than the usual unpleasantness of lots of medical procedures, is the virtual certainty of “graft versus host disease”, GVHD. Like any introduction of foreign cells, there can be a battle between the newly-introduced immune system and the existing one, leading to all kinds of bad effects (rashes, sores, etc). The Catch-22 is that the desired effect is the takeover of the body by the new immune system, so the GVHD struggle is a good thing, systemically, even if it’s bad to live through. So it’s a balancing act.

Another key difference of the upcoming transplant (vs last time) is that this one will be “low-intensity”, meaning much less chemo and radiation than last time. The main reason for this is that going through another high-intensity transplant “involves significant risk of mortality.”  OK then, low-intensity it is. The record shows that there can be successful engraftment even with the low-intensity regimen. So that’s good.

In the mean time I will be starting on a form of chemo tailored to attack the greedy bastard defective 5q- cells my marrow is producing. This is called azacytidine, It is reputed to have relatively few unpleasant side effects, and to do a good job in limiting the progression of MDS to leukemia. It’s possible to be on it for quite a while (a couple of years maybe) but it’s just a maintenance thing while waiting for the transplant to happen. It is administered via injection once a day for seven straight days, on a monthly cycle.

Getting back to the the transplant, where will the donor cells come from? The best case is that they come from a sibling, which in this case means my brother Mike. There is about a 25% chance we will be an HLA match. If we don’t match I’ll have to go on the open market, which can apparently take quite a while. In any case I guess it will be a minimum of a couple of months before the transplant can happen.

So that’s the story as of today. Disappointing, but as always it is a blessing to have the world’s best care near at hand, to have the insurance to pay for it, and to have the support of family and friends. And it will be a good opportunity for many more news-filled blog posts, so stay tuned.

 

February 22, 2012

C Word, Family, Sports

Comments Off on Thursday to Thursday

In my previous gem-like report, I mentioned that I was seeing my oncologist again last Thursday Feb 16 for more elucidation of my blood production troubles. Indeed that meeting happened, but the results are a little hard to describe (hence my delay in describing them).

One notable factoid is that my blood showed an “extremely high” level of something called ferritin, which as the name implies is involved with storing and supplying iron to the system. High ferritin levels are associated with a variety of conditions as unpleasant as they are unpronounceable. So this is a matter of some concern, on top of my continuing (though apparently improving) pancytopenia.

There is also some evidence, from the biopsy cytogenetics, of something known as 5q-minus syndrome, which is a blessedly short name but even more mysterious it seems.

In the past week lots and lots of blood has been drawn:

for a series of tests of apparently increasing sophistication and obscurity. Some of it has been sent off to remote labs; it’s hard to imagine a test is so unusual that Fred Hutch can’t do it, but there you have it.

I’m meeting with another doc Thursday (Feb 23), hoping that more mysteries will be revealed from all that testing, though perhaps not looking forward to the recommendations for treatment. Eve is hoping to attend the meeting via Skype from Silver Star where she and Julia and Oliver are enjoying the excellent snow. Should be fun.

On the plus side I’m feeling pretty good this week. Today I finally got a haircut, so sadly all the Trump bronze is gone. Maybe I’ll be in a position to choose a new color after tomorrow. I also rode my bike today for the first time in quite a while, just a few miles on the Burke-Gilman Trail, but it felt great, except for the uphill parts.

 

 

 

February 13, 2012

C Word, Poetry

Comments Off on Monday report

Blood smear was normal;
Numbers were up a little;
Next doc meet Thursday.

 

February 9, 2012

C Word, Family, Food

Comments Off on The pancytopenia conundrum

I would offer to sell the above title to Robert Ludlum, but sadly he is deceased. Though it seems his name continues to publish, so maybe there is some hope.

I had another meeting with my oncologist today. The ongoing mystery (he used the word “enigma”) is why my blood system is not producing well across the three main types: white cells, red cells, and platelets; aka “marked pancytopenia.” There are obvious things (chemo, transplant) that could explain one, or two, but three?

The most likely problem would be in the bone marrow, which is where the blood comes from. So last week I had a bone marrow biopsy. The site where they stuck the needle still hurts. What did it show? “No abnormal B cell populations” which is good. “30% cellularity”, meaning how many cells are being produced I guess (or maybe it means 1.5 bars), which is low but not unusual. “The rule of thumb is that cellularity starts at 100 and goes down with each year of age” he said. So marrow-wise I’m 70, which is pretty much how I feel these days. So no explanation there of the uncanny pancytopenia.

One of the better things about having follicular lymphoma is that at least it is the most common of the non-Hodgkin lymphomas, hence well-studied and well-supplied with therapies (its feature of being incurable is a drawback, admittedly). Fortunately the results of my CT last week were that there is no growth of any lymph nodes or spleen, so for now the disease that brought me here is under control. But with this blood thing I’m into enigma-land, which is more intellectually stimulating but leads to a certain uneasiness.

The best guess at this point is some sort of auto-immune thang that is trashing blood cells. My LDH is 500, which is pretty high but not alarming (“we see them in the thousands” he said). The two candidate therapies are steroids, probably prednisone, and intravenous immunoglobulin (IVIG). We were about ready to go with one of these, when another doc (“best in the world on these things”) popped by and suggested one more blood test for a particularly obscure something-or-other … so we’ll wait until Monday and try again. Just as well: at this point the prospect of yet another different treatment seems almost worse than the disease.

So I’ll have a relaxing weekend, and you should too.

In other news Eve and I are celebrating our 20th wedding anniversary tomorrow (the actual day is today, as we were married on 2/9/92 for druidical palindromical purposes) at the Herb Farm in Woodinville, less than a mile from Eve’s home as a teenager.  Here’s the menu. Should be good. Looking forward to another 20 years.

 

February 3, 2012

C Word

Comments Off on That was never five minutes just then

Medical care is greatly improved by always keeping in mind Rule #1:  make sure you’re in the right room.

Back to the clinic grind this week: Monday two units of red cells (I don’t know, maybe I’m getting tired of them), Tuesday a CT scan, and Wednesday a series of appointments: EKG, blood draw, bone marrow biopsy, meet with nurse. I got to SCCA a little late (stayed too long at a meeting at work) and rushed to the second floor (of six) where I expected the EKG to happen. After I checked in I was waiting rather a long time, but I figured that the schedule was messed up due to my being late and missing my slot.  Finally after 45 minutes I asked what the deal was.  The nice folks at the counter said “oh no, EKGs are on the fourth floor!” They thought I had just checked in way early for my biopsy.

I had already discovered that SCCA was having a Slow Elevator Day.  One of the units out of order?  Just too crowded?  Who knows, but every elevator trip (and they don’t want patients taking the stairs) took forever. At that point I was way late for my EKG.  Could they still do it? Did I need to have it before the other stuff? Does anyone know? I’ll check, sir, and someone will be out to see you in a few minutes. Sigh. It was now lunchtime and my hopes of getting something to eat before the biopsy were fading. At long last the EKG happens, mercifully quick but involving a large number of sticky patches that all have to be ripped off most painfully. Maybe that’s the test.

Back to the Moribund Elevators to go down to blood draw on the first floor. This time there were eight tubes to be filled to cover all the tests. And they wonder why I’m anemic. Also I gave a urine sample. All this was, I think, the exit interview for the clinical trial that I had just fallen out of.

Back to the second floor for the biopsy, only an hour or so late. Fortunately they were ready to go quickly. The people who do these procedures appreciate that patients might be a little nervous about having a needle inserted into their hip bone to draw out some marrow (really?) so they create a very nice relaxing environment. Also they have good drugs. Fentanyl, which I’d just like to point out is more potent than morphine, does an excellent job of taking the edge off the needle-induced jitters. The procedure itself took only a few seconds and as far as I know it wasn’t painful.

Then the nurse meet, which revealed that my blood numbers are still quite low across the board, though perhaps there was a little uptick in the hematocrit. I won’t get the biopsy results, or I guess the CT results either, until next week. Back to the elevators, still slow, and thus ended another day at the clinic, only about an hour longer than expected, which was pretty good.

 

January 26, 2012

C Word

Comments Off on All my trials

Soon be over.  OK, don’t get excited.

In last week’s episode readers may recall that I was headed back to SCCA for yet another platelet check, to see if I could get my next dollop of TRU-016. Despite the #goodplateletthoughts from my army of Twitter followers, my counts were even lower that day than they had been earlier in the week, so no treatment again. So much for social media being an agent of change. The good news, more or less, was that it was deemed OK to get a platelet transfusion to try to bring the number up enough to let me pass. My hematocrit was also low, at 24, so more red cells were also on the menu. On Sunday (Jan 22) I went in and got the double dip of blood products. Afterward as a treat I went to the Columbia City Bakery which I think is the best in Seattle.

On Monday I went back to the clinic again, for another blood draw (and another IV placement, just in case), and another round of numbers. Alas, even after getting a bag of platelets (which, I have to say, are a rather unpleasant brownish color, unlike the rich crimson of the red cells) my count didn’t go up at all. This is rather mysterious, and rather disappointing. We decided that I should see my oncologist that day to figure out what to do.

My oncologist is a busy guy, and like everyone else in Seattle was trying to get back on track after three or so days of forced leisure due to the snow and ice storms of the previous week (which in many parts of the country would have been called “a break from the bad weather”). So Eve and I weren’t surprised when he was an hour late for our 3:30 appointment. I was so stressed I fell asleep.

When he arrived, after a little discussion we agreed that it was time to give up on the clinical trial. The treatment has been working though we don’t know which of the agents is doing the trick. But we’ve tried what we can to get my counts in the right place to continue and it just isn’t working. Maybe we could ask the trial sponsors pretty please this time, but the whole course would be another three months of treatment, and it seems unlikely that my blood problems would get any better. And beyond the low platelets, which isn’t really a problem in daily life (the counts would have to get a lot lower to be a serious bleeding risk), the fatigue and achiness that come with low red cell counts are not something I want to live with indefinitely.

So, that’s it: no more trial. That phase is over. It’s a little sad to move on. I’ll miss the cushy service in the Clinical Trials Unit. We’ll hold off on any more treatment for a while to see what happens. I could resume taking Bendamustine and Rituximab at some point. Down the road, as always, there are many other potential therapies, both those already in the mainstream and new things still in trial. In the meantime I will probably have another bone marrow biopsy to see what might be going on in there.

On to the next adventure.

 

January 19, 2012

C Word, Family, Food

Comments Off on Sitting in limbo

“I can’t say what life will show me, but I know what I’ve seen.”

My last treatment was Dec 19-20 (so very 2011), an early Xmas present. This was the usual Bendamustine+TRU-016 on Monday and B+Rituximab on Tuesday. It was, as I recall, uneventful, which is good. I was a little stressed because we were having our annual Winter Solstice open house event on Dec 22, and I didn’t want to be throwing up while the guests were in the house. But all was fine, we had a nice time with neighbors and colleagues. I made caramelized onion focaccia that was well-received (i.e., completely devoured).

I was due for my 14-day tune-up with TRU on Jan 2 (2012), but had to wait until Jan 3 because of New-Year’s-Day-Observed. I went in that morning as usual for the blood draw to make sure my numbers were OK for treatment. In previous rounds my platelet count had been marginal; this time it was sub-marginal (had to be 75K, was only 65K). So, no treatment that day. Could we wait? We could, as there was not much choice. My hematocrit was also on the low side again, and since I was headed for Phoenix in a couple of days we decided to go for another couple of units of red cells. Man, red cells, I love em, I could live on those things.

I went back for another try the following Monday Jan 9. Platelets OK? Platelets not OK. Could we wait more? We could. Is there something I can do to pump up my platelet count? Eat some raw meat, or some spirulina, or barleywine ale? Nope, nothing to do but think good platelet thoughts.

Back again to SCCA Friday Jan 13. Same story, in fact even lower (55K). Can we continue to wait? Will it be OK with the trial? How is this affecting my overall improvement? Should I get a platelet transfusion? Well, it’s Friday before a three-day weekend, so rather than worry about these things we’ll wait some more and try again next week, on Wednesday.

Maybe we should have tried on Tuesday. Wednesday Jan 18 turned out to be an interesting day in Seattle weather-wise. They were predicting up to 10 inches of snow, but the worst of it went south a bit, so Seattle only got 4-6. Still, this is a lot for us, so things were pretty much shut down, including SCCA. Could we wait just a bit more, now going on more than two weeks beyond when I was supposed to get my Day 15 touch-up? Yes we can.

As I write, I’m scheduled to go in again tomorrow, Friday Jan 20. I’m not holding my breath, especially since there’s still a lot of snow outside. Supposedly the question has been asked of the clinical trial powers-that-be about whether I can get a platelet transfusion within the parameters of the trial, so I should have an answer on that. I’m hoping to get some stuff put in one way or another. The sitting in lymbo is getting kind of old.

Lest anyone in my readership think that all I’ve been doing is waiting, au contraire.  Here is just a small sample.

For Christmas Eve with the extended family I always bring the bread, of course. This year I made these couronnes bordelaise:

following the fine method described at breadtopia.com. Impressive, and apparently tasty as they disappeared quickly.

Annika was home from college, and it was good to see her (on those rare occasions when she wasn’t with her boyfriend). She seems to be doing really well at Northeastern. But of course she mostly wanted to befriend the puppy:

Like Norman Rockwell

which is fine, he can always use another friend.

With a careful eye you can see above that this was something of a henna-oriented holiday. The girls did the henna tattoo thing (even boyfriend Joe had to submit).  The day before she left Annika wanted to henna her hair, adding some red highlights to her natural lustrous brown.  I said: hey, I’ll try some of that, save some for me.  She said: Dad, I don’t think so, your hair is white, it will just turn orange. I said: cmon, I have some hair now, I may as well have some fun with it. Indeed, she was right: even with a watered-down dose and a short application time (maybe 15 minutes) the effect was pretty dramatic. I call it “Donald Trump bronze”:

Only my hairdresser knows for sure

For comparison here is a widely-circulated pic shot in the same location under similar conditions eight years ago:

Where is Mitchell's anyway?

Hmm, I guess they changed the sign since then. Also I got a new raincoat.

Lastly, if you have snow, and a puppy, and a teenager (Julia) you gotta have some fun:

Mush

Here’s some puppy sledding video even.

Sledding here in limbo … but I know it won’t be long.

 

December 11, 2011

C Word

Comments Off on Just Another Week

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.

 

November 22, 2011

C Word

Comments Off on Treat

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.

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