Remission Rethink

June 29

After the last bone marrow biopsy on Monday, it appears that the earlier diagnosis of remission was incorrect. Apparently, the blast cells are at 14%, little reduced from before the induction chemotherapy. The earlier reading (just before I left the hospital at the end of May) could have been wrong either because of the lack of aspirate to analyze, or because the blast cells were only temporarily supressed.

Repeat of the inducation chemotherapy does not seem to be a viable option, as it would require a higher dose, be harder on me, and have a low chance of success.

So, a new course of action is happening. This is the protocol that is usually used first for older MDS patients, which is the monthly cycle of azacitidine treatments. This differs from the consolidation chemotherapy that I was set to have in that it is a different drug and requires subcutaneous injections for 7 consecutive days in a month (with weekend off, so actually 7 of 9 - bring on the ST:V jokes), followed by 21 days off. The other difference is that this treatment can continue for an indefinite number of months until a transplant is available, whereas the consolidation chemotherapy could only be done twice.

The outcome of this treatment has a relatively low (about 20%) chance of bringing on full remission, but a very good chance of improving the situation somewhat, or at least remaining stable for many months without getting worse. As I am still pretty healthy on a macro-scale, this should be good enough for the time being.

Chemo No Go

June 25

I was supposed to start the next round of chemotherapy today. It's called 'consolidation', as it is meant to maintain the levels that we got to after the major chemo (called 'induction') that we did all through the month of May in the hospital. However, as my white blood cell counts, and particualr my neutrophils, are still very low, at the last minute they decided to postpone the chemo, and do another bone marrow biopsy instead.

The bone marrow biopsy went fine, as they were only going for the aspirate - the fluid part containing the developing blood cells. We had to wait a couple of hours though, as it was not originally scheduled and we had to wait until all the other procedures were finished.

Unfortunatley, this will probably push the chemo out by a couple of weeks. We need six consecutive days for the consolidation chemo, so it has to start on a Monday and end on Saturday with in-home care to disconnect the chemo pump. But next Monday is a holiday (for the non-canucks it's Canada Day) so it seems we wont be starting until July 9th. If only the bone marrow biopsy could have been done last week... Oh well. We takes it as it comes.

Status Update

June 17

Today is, according to Google, Father's Day. Kids are planning something, but so far it includes sleeping in. (For them, not me.)

As far as status goes, there is very little new at the moment, with things to come in the next little while. Last week I went in to give blood samples and have my line flushed and cleared. I also had a chest CT scan to see if the minor infection in my chest has cleared up. (No results on this yet.)

Next week I have a consult with the hematologists, and the following week I have out-patient chemotherapy scheduled for five days - Monday through Friday. I had understood it was two or three days at a time, so I'm not sure how this is going to work exactly. I'll discuss with the hematologists next week to get a clearer picture. More generally, I'm still eating well and getting more energy, though stamina seems to be more elusive.

Update: Kids actually acquitted themselves nicely. When they did complete the sleeping-in, they made me breakfast (not in bed), and we had a nice day together. We finished with ordering a meal from a favourite restaurant, and they lavished me with books and DVDs. Highly acceptable.

ReMission - Possible!

June 7

Yesterday I saw my doctors for the first follow-up since leaving hospital. It turns out I'm semi-officially in remission! (According to Martha, 'It's a good thing!')

It's semi-official because remission requires two criteria: 1) Blast cells (the bad guys) have to be below 5%, and mine are at 3%, down from 20% before I started treatment, and 2) Neutrophil count (type of white blood cell) should be over 1.0. My neutrophils are still at 0.5 but creeping up slowly.

The upshot of this is I now move on to phase 2 of the treatmnent, which is called Consolidation Chemotherapy. This involves outpatient chemotherapy a few days a month, and will continue for several months to keep the blasts in check. The alternative would have been to start over at the beginning with another round of 30 days in hospital, which I was very much looking forward to never ever doing again. Fished my wish!

Diversion

June 5

Totally off topic, but on the weekend KID1 and I made an adapter to convert an old solar filter I had for a four inch telescope to fit on my current ten inch. It was based on the 'make your own solar filter' web site of the San Francisco Sidewalk Astronomers, but instead of the sheet of solar filter I had a whole cartridge. It is essentially filter material surrounded by a plastic base (in effect a replacement for the lens cap on the four inch). So we made a heavy cardboard and duct-tape adapter that work perfectly on the ten inch.

Then Tuesday was the Transit of Venus, and here are a couple of pictures we got of it. They're not very sharp, but you get the idea. First picture is just around second contact, but it is not clear enough to show the 'black drop' effect (Venus at around 5 o'clock). Second picture is maybe 30 minutes later (Venus at 6 o'clock).

Note for the previous transit in 2004, I used this same solar filter taped to a box, with binoculars taped to the other side. It was quite portable, but kind of unsteady, and certainly wouldn't have worked for pictures.

Survey - Your Opinions (May) Matter

June 5

A huge dilemma is brewing, and your comments/opinions on the matter would be appreciated. (NOTE: for the purposes of this post please stick to the topic and refrain from sarcastic and/or humorous posts. You may resume that later.)

The problem (for which the CMC really couldn't give a toss, but certain females are more interested in) is the hair situation. The question is:
A) Should I leave the current Yoda-look alone and wait for the rest of the hair to comeback and catch up, or
B) Should I shave it (i.e. have it shaved - I'm not doing it!) and get a 'fresh start'? or
C) Make some kind of 'do' out of what I have (joking on this one)

Please add your comments on the matter, and for statistical purposes it might be interesting if you identify your gender (F or M for those new to this concept).

Disclaimer: Your opinions (like many of my own) may not matter, as the aformentioned females often get their way in these situations. Nevertheless, it will be interesting to see the variety of opinions.

Hanging Out and Hanging In

June 5

(Notice I didn't say 'Day 42'? That's because I'm not in the dreaded hospital, so I don't have to count my days!)

Sorry, it's been a few days. I've been adjusting to the luxury of being home.

Things are much better here. I don't need to be constantly poked and prodded, I'm on my own time, I can relax in the Comfy Chair or even get up and do a few things. I'm eating well, slowly getting back my energy and trying to build back my strength. It'll take a while I guess, but I can't say how much happier I am at home. I've even been out a couple of times - once to KID2's soccer game, where I could watch from the car, and once to the hospital to get blood taken and have my line flushed and redressed.