Wednesday, March 18, 2009

Are The Lobby Lights Flashing?

That is the big question on our minds lately. Is the "Intermission" almost over? Regular followers of my ramblings may recall that when I stopped chemo three years ago this summer, I did not reach remission. In fact, my doc said we were stopping chemotherapy for three to six months only to give my body a rest from the poisonous chemo drugs (one of the drugs I took, Cytoxan, is actually a derivative of the famous World War I poison gas, Mustard Gas, and has similar properties.) A bone marrow biopsy before chemo showed my marrow 90% infiltrated with cancer cells but after eight rounds had only been reduced to 50%. As time passed and I didn't progress, I decided that even if I hadn't reached remission, I had achieved a real good intermission. Then a year ago last Fall, things started to progress again and it looked like we were approaching more chemo, then suddenly I stabilized. This is a strange disease.

Well, the end of December's blood tests showed movement again. Then February's showed even more. Now Monday's seems to have confirmed the fact that those little circulating cancer cells are accumulating again. The blood test in December showed a doubling of lymphocytes in four months. Doubling in six months is an indication for treatment, BUT you need to see a trend over many months. February's showed a tripling in three months. yesterday's showed a tripling from a test four and a half month's ago. My neck nodes are getting more bothersome all the time and I keep feeling more and more of them in all the chains of the neck.

Yes, I think the lights in the lobby are flashing to indicate intermission will soon be over, but I don't want to go out in the hall yet to confirm. In fact, it is tempting to just go home and skip the second act. I know that would be kind of dumb though since I already committed to see this play through.

What about the other blood indicators? Well, obviously the white count rose, but so did the red cells, all the way to normal! That is encouraging as I am not anemic now. Platelets dropped over 10,000, but are still above 100, so that is good.

My best guess is that no action will be taken until the summer when I go back to MD Anderson. That will also give us four more blood tests to get a good picture of the trend. Now to some of you that may seem counter-intuitive as you would think we would want to knock it down if it is rearing its ugly head. With this cancer you only get so many shots at pushing it down and you want to make sure you get the timing right. You don't want to fire all your bullets too soon but you also don't want to wait until the enemy becomes so powerful the bullets have little effect. Fortunately, my particular brand of CLL/SLL isn't as aggressive as some, but also it isn't as indolent as others. Monday I will see my hematologist/oncologist and also get my monthly infusion of IVIg. I'll let you know if he wants to change the game plan.

I just hope Act II is worth the wait.


Carly said...

You have such a positive outlook on this whole thing. I would be a complete bumbling mess. I hope that our paths cross at church one day.

Pat said...

You have a positive and intelligent approach to CLL and are a great self-advocate. I wish you more good days than bad......and that you will not need chemo this summer.

David Arenson said...

The bad news is that the fat lady is about to sing. The good news is that you got three years out of your last treatment, so you should do well with your next.

As to reaching remission: No remission is perfect in CLL. Even the best remissions still leave a few CLL cells behind, which accounts for the chronic nature of this thing. It's all on a sliding scale.

And speaking of scales, maybe the fat lady is just warming up and will put off her aria for a little longer . . .

Anonymous said...

Pray, take your time, and don't rush into anything, John. I have been pondering my next treatment option for nearly 18 months now.
:-) And during those 18 months, I have watched WBC's, RBC's and Platelets rise and fall many times.

You are in the palm of His hand.