Tuesday, June 03, 2008

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.

6 Comments:

At 10:38 PM, Anonymous Anonymous said...

Max,

You stay strong and keep you faith in God. He will never leave nor forsake you. I pray that He will give you strength each and everyday. I can only hope to have half the strength you have. You truly inspire me...thank you for being that kind of person!

Your Conyers Bro,

Alan

 
At 10:03 AM, Anonymous Anonymous said...

Max,

You and Lynda mean a lot of us and we appreciate your effort in chronicling your ups and downs.

I hope getting off Sunesis will help your stomach and that you will start feeling better.

Robin told me that she talked to Lynda and she told her that your girls are really helping eachother out. As a father of 3 myself, it is nice to hear when kids pull together.

If there is anything we can do to help, please let us know, especially since you appear to be spending more time in Houston. .

John C.

 
At 1:31 PM, Anonymous Anonymous said...

Max, we're familiar with roller coaster rides but not to the extent that you've experienced. Your courage is an inspiration to us as you've faced these difficulties. We pray for guidance each step of the way as you persevere. H & A.

 
At 1:54 PM, Anonymous Anonymous said...

Max,
I believe there is a cure and will continue to pray for one...
I personly know how difficult some days are for you... I am very proud of you that you keep trying to find that cure....
As Uncle Alfred(Red) always said "For every test he went through maybe it will be a cure for others" ...
I send my love and prayers to you,Lynda and daughters... I wish I could be with you....
I love you....Aunt Pat....

 
At 10:24 AM, Blogger maggiegracecreates said...

Max - so many of us are praying for you and your 4 girls. I am glad to know that the steroids immediately helped the stomach issues - maybe you can eat and rest now. Keep hanging on to the faith. Love you all.

charles & teresa

 
At 2:28 PM, Anonymous Anonymous said...

Max:

Just to let you know that I keep up with you on your blog site. Even though we don't get to talk often, you are always in Deb & my prayers. Hang in there.

Pop BK866

 

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