B is the word.

By , on March 15, 2012

C Word


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!

 



3 Comments to “2012 Schedule”

  1. Jane says:

    Well put and easy for us non-medical folks to follow. bob you have the most pleasant and inviting attitude about this. I never cease to be humbled and impressed. We hope only for the best! Avoir:) hopefully I spelled that correctly. Have fun in Paris!

  2. Jamie Clark says:

    We did miss you in DC!

  3. Asbed says:

    You know what they say: We’ll always have Paris.
    We’re all pulling for you Bob.

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