I am waiting for a returned phone call from Dr. Flinn's office. John's nodes are growing and becoming painful again. He is only two and a half months out from six cycles of FCR - not even recovered from the impact of chemo - and it appears that he did not achieve even a semi-lasting partial remission.

At the end of treatment, his nodes had been reduced by only 50%. But that was enough to make them barely visible in his neck. We hoped they would continue to shrink after treatment ended (because that happens for some patients). However, it seemed like no time at all before they started "waxing and waning." It seems like every time they flare up, they get a little larger. This morning, his neck looks pretty big again.

I'm really disappointed and trying to keep my chin up. But I hate it that John has to go through this. He is the most wonderful person I've ever known and even though I know that none of us deserves a life free of struggle, it just seems like he has had more than his share.

As I was typing this, the phone rang. It was the doctor's office and we have been scheduled for April 22. I know there is a clinical trial open right now for Cal 101, a very promising new drug. From everything I've read, it seems to work very well on lymph nodes. (Controlling CLL in the blood is easier than controlling it in the lymph nodes.) And it is administered in pill form rather than through IV infusions.

Dr. Flinn told us he is excited about the potential of this drug at our last visit and he told us about the trial. But he said it would only be open for four to five months and he didn't expect John to need treatment again that soon. My understanding is also that one of the criteria for acceptance into the trial is having failed previous treatment. So we couldn't have gone straight to that option. But maybe it will be an option now and help us avoid the grueling stem cell transplant a while longer.

Dr. Flinn told us that if John's remission lasted less than a year, we would talk about transplant as an option. The possibility of having to consider that option this soon - with all its risks and complications - is scary. It is normally thought of as the last resort. In John's case, it isn't that he would die without it. But if his CLL is aggressive and resistant to treatment, it might be his best chance of getting a deep remission. Maybe doing it while he is still fairly young and physically strong - before CLL has done more damage to his body - would give him better results. But the risk and the potential side effects are nothing to take lightly. John is obviously not eager to take that option. We would both prefer to avoid it as long as we can. So if John is eligible for Cal 101, I'm sure he will want to try it.

I feel a bit shaken this morning. Emotional. I'm supposed to meet a friend for lunch and I'm trying to decide if I can. At this moment, I feel like I don't want to leave the house. I don't think I will be very good company. But I know I probably should get out and not choose hibernation.

Please pray for us. I know God has a plan. But I am sometimes afraid that it's not the plan I would choose. Actually, I already know it's not the plan I would choose. I wouldn't choose any of this.

Except for John. I would choose John in ANY circumstances. I just wouldn't have chosen for our story to include cancer...if it was up to me, which it's not.


justme said…
Oh Shari, I'm sorry. I'm praying for you guys!
Shari said…
Thanks, Sally. I actually feel a little better than I did this morning. Thank God for wonderful friends who know just how to encourage and comfort us. I'm so glad I already had my friend, Donna, on my calendar for today! I should say she was on God's calendar FOR ME today. : ) I am so blessed. Whatever the path includes, if God ordains it for us, we will walk it.
Randy Shannon said…
Hey Shari,

I will keep you all in prayer.

Is the trial the new one- CAL 101 and either pentostatin or retuxan, or is it simply the CAL 101 alone? I read Dr. Flynn was leading the new trial.

I feel the trial (CAL 101 alone) I am on has worked wonders... I thank God for the results...

Keep your faith...

God Bless,
Shari said…
Thanks, Randy. Dr. Flinn didn't mention any other drugs. The subject came up because I was asking questions about a couple of other new treatments and wanting to know what he thought. It seems like I had asked about Treanda. And he said, "There are a couple of other new treatments I am more excited about than Treanda." Then he mentioned CAL 101 and something else. He said he was doing a clinical trial for CAL 101 but it would only be open for 4-5 months and John wouldn't need treatment again that soon. So it wouldn't be an option. I look forward to hearing more about it when we see him on the 22nd. Neither of us feels ready for stem cell transplant this soon. Thank you for your prayers. I'm so glad you are doing well. I've prayed for you many times.

What is the treatment protocol for your trial? Do you take CAL 101 for a certain length of time and achieve a remission? Or is it something you just take indefinitely as long as it's working? I need to read more about it.
Danny Bryant said…
i'm sorry. i love you. we're praying.
Anonymous said…
Shari, I'm so sorry, I will keep you all in my prayers. My problems seem so small in comparison! I will keep in touch with you to see how you all are doing.

Betty Kirschner said…
Shari, I'm so sorry.I will be praying for both of you!!!
My brother-in-law has been going through Chemo again for the 4th time, he has a positive attitude and is encouraged.
I can not fully know what you are going through,but I do have a pretty good idea. I know you will keep your chin up, and it does seem that some like some have more than their share.
Betty Kirschner said…
Sorry about the mistake! Should read, it seems that some have more than their share.