6th Infusion Delayed

Dr. Keating decided to delay giving me the 6th infusion of the Sunesis drug. I seem to lose a little ground each week even though I'm on the drug. In the meantime they have started a 5th cohort group at a higher dosage. So far they have three guinea pigs on that dosage and they all have shown significant shrinkage of their nodes. One guy even has Richter's Transformation like me. So that could be good news. But getting me in that group may be difficult.

In the meantime, this intestinal bug has laid me low. I think I've had it for about two months, but it has gotten a lot worse over the last couple of weeks. They finally had me do a sample so that they could see if any bugs grew, and sure enough I've got something called C diff. This is a nasty little bug that wrings the nutrition and liquids out of you and leaves you with no energy. I've slept 14 or 15 hours a day, more some days, for the last two weeks.

So Keating decided to give me the week off while he negotiates with Sunesis and the antibiotic can make some progress against the intestinal bug. I don't feel a lot better yet, but in a few days I should.

So I'm in limbo again. If there is a delay in getting approval to move to the 5th cohort then he will treat me with a steroid to shrink the nodes temporarily. Psychologically, not seeing the nodes bulging out of my neck and under arms helps me, but then I have to contend with the side effects of the steroid.

More later, but it should be a no news week. Maybe I'll fill in with a little political commentary. Ooooh, that could be bad. LOL

The 5th Infusion Went Okay

It was the usual infusion. Late start with a late ending around 1:00 am. No wonder I'm always so tired after these infusions.

We all think that this dose of SNS032 is not enough. It has slowed the progress of the disease dramatically, but hasn't halted it completely.

Interestingly though, they have opened a 5th cohort group at an even higher dose. Two men got their first dose at this higher level last week. Initial indications are there was about an 80% reduction in their nodes within 48 hours. Now that was hot off the press late last week so the data hadn't been fully digested. They will get their 2nd infusions this coming week. So until they get a few infusions and the nodes go completely away it pays to be cautious.

I'll continue to get the dose I'm on for now since it is doing me some good. Then if the results of the 5th cohort do indeed prove out, then I've got to get on the higher dosage somehow. That is not necessarily easy since this is a scientific experiment that has to be conducted as such. Moving people from one cohort to another is generally not allowed. Remember when you participate in a study like this one you are the equivalent of a lab rat - somewhat expendable.

I'll continue for the next few weeks at my dosage, see how the next cohort responds, and then see what we can do after that.

So life is on hold once again. The roller coaster goes up and the roller coaster goes down. You have to learn to deal with that, but it's not very easy.

Started the 2nd Cycle of 032

I haven't posted in a while. I've just not felt like it since John Slatin passed away. I've got his blog bookmarked in a folder next to mine. But life goes on, so here we go.

I received the first of the three infusions that will constitute cycle 2 last Thursday. And again it really made me fatigued. I slept all day Saturday after we got back. I felt better yesterday and a little better still today. I don't think the fatigue has a thing to do with coming off the steroid, Medrol.

We had a difficult trip. We missed the plane going to Houston because we couldn't find a parking place. So for $100 Delta got us on the next flight. Then for the return flight Delta called Friday morning and told us our flight Friday evening had been canceled. Heh, heh, heh. I got my $100 back in that exchange. Fair dinkum as the Aussies say.

We stayed Friday night at Kenny and Annette's and got to play a little bridge. Kenny took us to the airport Saturday morning. We usually fly in and out of Hobby, which is closer to the Medical Center, instead of Intercontinental, aka Bush, but Kenny lives near Bush so we flew out of there this time. I've been stuck due to weather too many times at Bush to risk flying out of there much anymore. But at 7:15 am, the chances of bad thunderstorms are pretty low. Hobby is a much smaller airport and doesn't get backed up like Bush does.

Atlanta could sure benefit from having two airports like Houston.

As far as the Sunesis drug, I think we are all disappointed in it. I've got new nodes that have popped up in spite of taking the drug. They are not proliferating rapidly but they shouldn't be popping up at all. So I think after this cycle, Keating will try something else. He told me that they would keep coming up with new drugs to try faster than I can go through them. I guess that's good news, but I'm not sure. I'm definitely a true guinea pig at this point. I was the first human to receive the Sunesis 032 drug at this dosage.

I'm afraid he will run me through another round of Hyper CVAD, probably part B, before starting another drug. That's the regimen that really took it out of me last summer. It's really hard on the red count. They will probably want to get rid of the nodes before they start the next experiment, which the Hyper CVAD regimen is very good at doing temporarily.

My eyes seem to be getting better, but they still require drops several times a day. I have a pair of prescription sunglasses, too. Those are actually pretty nice. I went with the progressive lenses this time. Should've done that instead of bifocals last time. I miss my contacts, but those days are probably gone.

That's all for now. I go get more 032 this week.