Your thoughts about Max

If you'd like to post your thoughts about Max, please do so by clicking on the "comments" link in the bottom right corner of this box. You may also read what others have written by clicking on the same link.

A trip down Memory Lane with Max

This is a short video of Max, comprised of family memories, collected since about 1982. Max and Lynda have almost 50 video tapes collected over this time period. A movie using all the tapes would be longer than a feature film. Although this film is only 7 minutes, suffice it to say, Lynda and the girls have hours of tapes with which to remember Max and their memories.

I hope this helps us all remember Max during the good times.

Pete

Funeral Service Program

Funeral Arrangements for Max

The funeral was performed Thursday, July 10th at Mount Bethel United Methodist Church in East Cobb. - 4385 Lower Roswell Rd, Marietta, GA 30068

Visitation began at 3:00 pm and Reverend Will Parker delivered the service at 4:00 pm

Contributions may be made to the Leukemia and Lymphoma Society.

Click here for the link to make a contribution.

Max would really be grateful if we all registered to be a donor. All it takes is a saliva swab. Mount Bethel United Methodist will be sponsoring a drive later in 2008.

Max won many Battles but today he lost the War

Today, Sunday, July 6, 2008 our friend Max Hall has begun a new life.

After an almost four year battle with cancer, Max passed away at St. Joseph's Hospital in Atlanta. He was surrounded by Lynda, his wife, all his girls and his close family members.

The funeral will be Thursday, July 10th at Mount Bethel United Methodist Church in East Cobb. - 4385 Lower Roswell Rd, Marietta, GA 30068

Visitation will begin at 3:00 pm and Reverend Will Parker will begin the service at 4:00 pm

Please keep Max's family in your prayers.

Pete English

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.

Still In Limbo

It looks like I'm not going to move up to the next cohort group and get the higher dose of SNS032. The subjects already in that group have had some toxicity problems with the drug. That's the whole point of a phase I study. You keep increasing the dose for each cohort group until you reach a human being's limit. These guys in the next group may have hit theirs. Sunesis is adding two more to the group and will evaluate them in 28 days. If they also develop problems then that dose may beyond what humans can tolerate. Sort of makes me glad they didn't put on the next higher dose. Ha.

That leaves several burning questions regarding treatment. One is will they have a dose that's in between the dose I'm on and the current dose? Another is what are they going to do with me otherwise?

For the time being it looks like I'm going to continue to get the drug at the dose I've been getting. In fact we start the third cycle this week. It looks like this is just holding my place in line until they decide what to do about the SNS032 dosage. I don't have many good alternatives, so this will have to do.

In the meantime, my stomach continues to get better. But I'm far from 100%.

Quick Trip to Houston Last Week

I just thought I was going to get another week off. But Alice, my leukemia nurse, called Tuesday afternoon to say that Sunesis was not going to let me delay further infusions indefinitely and remain on the study. In fact if I didn't get the next infusion by Thursday I was off the study. So off to Houston we went. I had to get the next infusion at the old dose just to hold my place in line. There's still no decision from Sunesis about moving me up to the next cohort group, but the request is on the medical director's desk. We should know this week. So keep your fingers crossed and say lots of prayers.