Many good things have happened since I last posted, and I will get those reports done one of these days real soon now. But I know my target demographic, and you people are all here for the medical drama. So here is some for you.

We went in to SCCA today expecting lots of news. The prime item of interest was the result of the HLA typing on my brother (using his saliva, not his blood; how this works I have no idea) to see if he can be a donor for my upcoming allogeneic stem cell transplant. They said the results weren’t back yet but they would call (words I have heard before).

Next in line was the result of my CT scan from last Thursday. And that was: no evidence of any progression of lymphadenopathy; i.e., no visible malignant growth of lymph nodes. So yay, at least I don’t have to worry about lymphoma for the moment.

Lastly were my usual blood numbers. I have been feeling pretty good the last several days, relatively speaking. I had a couple of intense days at a conference in Silicon Valley; I rode my bike a few miles for the first time in a long time (I did have to walk up the hill to get home); I baked, somehow, the best baguettes I have ever made. So I figured my hematocrit would be 30ish at least. But no, it was 26, so I’m scheduled for another couple of units tomorrow. I guess I’m getting used to being bloodless. My platelet count was 135, which is the highest it has been in a year at least. Neutrophils not great but I’m not neutropenic.

Back down I went to blood draw for the type-and-hold for tomorrow’s transfusion. While waiting there I got a call from Dr. Scott, and he said: “we have the HLA results and your brother is a complete match.” Hooray! This means we can proceed directly to transplant; no waiting for further chemo (though I did start my week o’ shots today). It also confirms that Mike really is my brother, which I had been wondering about. As the typing page says, there is a 1-in-4 chance of a match with a sibling, so for once we beat the odds. I won’t have to wait for possibly many months finding an unrelated donor, and I guess the likelihood of graft vs host disease (GVHD) is much less with a sibling donor. It’s hard to get really excited about plunging directly into an allogeneic transplant, but given the situation it’s very good news.

I will get a call from the transplant office in a couple of days, and will know more then about schedule. I have heard that there are a number of options for prep for the transplant, so I suppose we will have to talk those over. But in any case I am now at the top of the ski jump, just about to tip over the edge and head down. Another wild ride ahead.

In my last substantive post I reported that I have been diagnosed with this new condition requiring a new doctor and new treatment (same SCCA though). Some mysteries were resolved (the source of my pancytopenia is the 5q deletion syndrome, a kind of MDS), and new ones emerged: what would the new chemo treatment be like, and most significantly, when would I start the process for the new allogeneic stem cell transplant? Here’s an update on those things, as of today.

On Friday March 2 I started on azacytidine treatment. This is delivered once a day for seven straight days, on a monthly cycle (i.e., three weeks off, then another week of treatment). It is given by injection, two shots in the belly, which is much less onerous than a multi-hour IV drip, but does lead to lots of soreness in the injection area, especially after a week’s worth of shots. I had some nausea, but much less than with previous chemos; a single Zofran took care of it. I have been working and living more or less normally throughout. I did have to miss a trip to DC for what would have been a fun workshop with all my identipals, but fortunately I was able to feel like I was there via Twitter.

The last blood test I had before treatment started showed that my numbers were up across the board (crit 34, platelet 100, white 2K), which is quite good. Perhaps my blood production is just now coming back from the clinical trial treatment that ended in December. After the first week of the new treatment (as of today, the Ides of March; happy birthday, Slim!) they are down again, which is, apparently, to be expected. Gotta break em down before you build em up, as my track coach used to say. After 4 monthly treatments or so we hope that the drug will have its good effects of killing the deformed cells and letting the good cells thrive, and my numbers will be back up again.

Today my crit was 24, which was especially obvious to me when I had to run to catch the bus and lay there in the seat gasping for breath for a couple of minutes afterward. This was while I was on the way to the clinic to get another couple of units of red cells, so problem solved. My neutropenia was also perhaps shown by events of last Monday evening, when I spent five hours throwing up (bad teriyaki as far as I can tell). I got some antibiotics and such for that too today.

But the big question (I hear you cry) is: when is this transplant supposed to happen? I love my docs, but they can be very eloquent about disease pathways and classification criteria without ever getting to the point of WHAT IS GOING TO HAPPEN WHEN. Today we had a good meet with the Physician’s Assistant, who explained that the plan is that I will have 6 cycles of the azacytidine, then a bone marrow biopsy to see what the effect has been, and if all is clean (hey, what could go wrong?) then proceed to do the transplant. This was something of a relief to hear, because we had been thinking it could be any day. So, now we know (in the cancer patient’s sense of “know”) it will be 5 months away minimum. This will allow lots of time to find a donor.

So now we have a fairly likely schedule for the next six months or so, which feels good, all things considered. Time to fly to Paris! Yes! Next week!

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?

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.

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.

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.