CAL-101 Day 85

I haven't been posting as many updates on John because he doesn't have to go for a weekly office visit anymore. He is now seeing the doctor and having labs done every fourth week. Every eight weeks he has CT scans.

John has now completed three 28-day cycles of CAL-101 with no problems or side effects. Not only have his lymph nodes shrunk dramatically, his blood counts are all within normal range. His WBC four weeks ago was 9.5 and today it was 7. His neutrophils and platelets were both a little lower today than the last check-up, but still in normal ranges. He is responding beautifully to this drug. When things are going this well, there isn't much to talk to the doctor about (or report on my blog). You just hope the great results continue.

I did ask how other patients are doing on CAL-101. I am curious to know about patients who have been taking it longer than John, since the drug is so new. Dr. Flinn said most are still doing well. He also told us that a new trial has opened up studying CAL-101 plus Rituxan as first line treatment in CLL. That is very exciting news because Rituxan is lower in toxicity than chemo drugs like Fludarabine and Cytoxan. My mother-in-law is probably facing some kind of treatment within the next year or so. And I don't like the idea of her receiving Fludarabine at her age. (Dr. Flinn has already said he wouldn't give her Cytoxan.) I'm thinking that CAL-101 plus Rituxan may be an option for her now as first line treatment.

However, you may remember, to get into the trial John is enrolled in, patients had to have already failed treatment. That is how most trials start. They offer the experimental drug to the patients who have failed other treatments. I was very excited to hear they are already offering it to patients who have not had any kind of treatment. That will be such a welcomed option for many patients who do not want to subject their bodies to the toxicity of the chemo drugs.

CAL-101 initially raises the white count for most patients while it goes to work immediately on the nodes. Other drugs work better on clearing the CLL from the blood. So by combining CAL-101 with another drug that goes to work on the blood, I presume they hope to counter that undesirable side-effect. When John was accepted, there was another trial comparing CAL-101 plus Bendustamine (chemo) to CAL-101 plus Rituxan (monoclonal antibody; less toxicity). They must be getting good results from CAL-101 with Rituxan to open a new trial studying that as first line therapy.

John and I both wanted to try CAL-101 as single agent only because John has already had both Rituxan (alone) and Rituxan in combination with Fludarabine and Cytoxan. His blood responded to both, but his nodes did not. And after six rounds of chemo, his white count was normal and didn't need more treatment. It was just those stubborn lymph nodes that were the problem. Neither of us liked the idea of putting more of the drugs that had not worked for him into his body. So we feel very fortunate to have gotten into the trial he's in with CAL-101 as single agent at the lowest dose. It seems to have been the perfect treatment option for John at this stage of the game. I wish John could have gotten CAL-101 without having had to endure (and fail) chemo first. But I'm just so thankful he's getting it now.

I don't waste a lot of energy agonizing over things that might have been. I believe God is -- and always has been -- in control. I believe He is working all things for my/our good; even our CLL journey. When reflecting on anything I have ever gone through that has been difficult, one thought or concept has always kept me going and helped me not to feel sorry for myself (for very long). If I never suffered pain or faced adversity, what would I ever possibly have to offer to another hurting person? Pain is necessary. I don't like it. I'm not asking for it. But I am a stronger and more thankful helper in God's kingdom because of it.

I remember telling God many times that even if what I was going through accomplished nothing in my life other than helping me to one day be a better friend and an encouragement to someone else; that was enough for me. Little did I know how many ways He was using those painful experiences for my good and for the development of my character, as well as cultivating a greater degree of compassion and empathy in my heart for other hurting people.

For me, one of the richest blessings in this life is when I know that God has used me to help, encourage, or bless someone else. The most rewarding aspect of my book on spiritual abuse has been hearing from readers who have written to tell me that my personal testimony either blessed them or played a role in their own healing. There would be no book without the painful struggles of my past.

My focus is not on what I missed or how much happier my life might have been "if only..." My focus is on how God can use all the experiences of my life to help me help others and to glorify Him.

As individual ingredients in my life, some experiences have been terribly unpleasant and distasteful. But combined together with His love and grace, God has been producing something sweet. I have always wanted to be sweet and not bitter.

I received something in an email from a friend recently. I confess to not always reading forwarded emails. But I did read this one and thought it was so good. You may have received it too but I thought I would share and preserve it for future reflection on my blog.


God's cake...

Sometimes we wonder, "What did I do to deserve this?" or "Why did God have to do this to me?" Here is a wonderful explanation:

A daughter is telling her mother how everything is going wrong, she's failing algebra, her boyfriend broke up with her and her best friend is moving away.

Meanwhile, her mother is baking a cake and asks her daughter if she would like a snack, and the daughter says, "Absolutely Mom, I love your cake."

"Here, have some cooking oil," her mother offers.

"Yuck" says her daughter.

"How about a couple raw eggs?"

"Gross, Mom!"

"Would you like some flour then? Or maybe baking soda?"

"Mom, those are all yucky!"

To which the mother replies: "Yes, all those things seem bad all by themselves. But when they are put together in the right way, they make a wonderfully delicious cake!"

God works the same way. Many times we wonder why He would let us go through such bad and difficult times. But God knows that when He puts these things all in His order, they always work for good! We just have to trust Him and, eventually, they will all make something wonderful!


I saw this on Facebook today as a status update and I think I will borrow it for this post...

"I've never met a bitter person who was thankful or a thankful person who was bitter." (Kevin Gammons)


Betty Kirschner said…
Happy John is doing well !!1
Enjoyed God's cake...And the Facebook post is so true!
LYNDA said…
Shari, Thank for the note on John. I praise God for what he is doing for John and you. I see a change in you for the good even from where we have come from. I love the poem at the bottom page.
Love you Have a good day. You have made my day.
Shari said…
Thank you, Betty and Lynda for your comments.

Betty, I got your comment on my cell phone and didn't realize it was a comment on my BLOG that I needed to approve so it would publish. I thought your comment was on FB. So that's why it didn't show up here until this morning. I'm still getting used to my phone.