More Changes

Well, after the Sunesis failed, Dr. Keating switched over to a chemo cocktail using two older drugs as discussed in my last post. After two weekly rounds of that, it failed also. We thought it was working and even planned on getting the 3rd infusion locally in Atlanta. But last Saturday night, the 14th, the nodes flared significantly. That meant a quick trip to Houston Sunday as planned - good thing we didn't cancel our plane flight.

Dr. Keating ran tests Monday and Tuesday and started another chemo on Wednesday for three days. This drug is also an older drug, Chlofarabine. So far this has worked like magic, but then again it could be the big slug of steroids they always lead chemo with.

If this works we'll stay on it for a while. But we are likely to go to a Phase II study run in Columbus, Ohio at OSU. Ohio State Medical Center is big into CLL studies also. They are in the CLL consortium of several institutions that pool some resources including extensive labs at UCSD (San Diego).

Keating still thinks that ultimately we want on the Sunesis drug, but Sunesis is so early in its development that they don't have an effective dosage yet. It apparently holds the most promise at this point thinking longer term.

So we have a plan with a short term chemo, a little longer term chemo, and maybe an even longer term solution in Sunesis.

We are coming home today for what we hope is three weeks before getting the next round of Chlofarabine. I need your thoughts and prayers that this next chemo works.

My How Things Change

I haven't blogged in a while because it seems to get more difficult and complicated each time lately. It's hard to compose and harder still to remain composed sometimes. But here's my latest news after several twists and turns over the last few weeks.

We reported here to MDA last week expecting another round of Sunesis. But first, because of very visible adenopathy (lots of nodes), they wanted to run a PET/CT combination scan (no barium). Well the scan showed that much of abdominal problems were from a lot of adenopathy (lots of nodes) in the belly. So I have actually lost much ground while being on Sunesis instead of just the opposite. Bottom line -- halt Sunesis immediately which we did. Next problem -- what to do now? Whatever it is has to shrink a bunch of nodes in a hurry.

In the meantime Dr. Keating is on his way to Italy for an international symposium on CLL. But he has a new chemical cocktail for me before he leaves. I started a combination of the steroid and one of the older drugs on Friday followed by a 24 hour infusion of the second drug. Bingo, immediate relief to the belly with the steroid.

I was positive Keating's instructions were to repeat in one week. But the doctor left in charge to follow up, who had been out of town himself, said Monday morning that they never gave this first drug on a weekly basis. And that he had only seen this combo given to two patients, and I was the second!! Oh boy. The doctor emails Keating who mails back -- yes, weekly. So we are hanging out this week for our next chance at the lottery this Friday.

This stuff is still just a stop gap measure. Actually at this point all of this is just a stop gap measure. I believe the feeling is still that the Sunesis at the right dose can still result in an intermediate remission in some folks. But we have to get the node level way down, hope that Sunesis finds the right dose which also effective, and then we have to get back on the Sunesis drug somehow. Tall orders no doubt.

So now you know why I haven't blogged. And you only got a small dose of the roller coaster ride that we have been on. But I'll try to post a little more frequently.