Bone Marrow Biopsy #2 / Beginning CAL-101

John is such a great patient. I believe I am at my best in the role of caregiver. But if I were the patient, I don't think I could hold a candle to John.

Today's bone marrow was a little different experience than the last. The first biopsy was done in Dr. Flinn's office by a nurse practitioner. She was very skilled and the most painful part (the marrow extraction) only lasted about seven seconds. Since it was right there in the doctor's office, it did not feel like a surgical setting. I was able to be with John from the time he entered the room until he was allowed to leave. It wasn't that I wanted to watch. I just wanted to be in the room so that I would know John was okay. The nurses could see the worry on my face and they teased me that I looked like I might need some pre-meds. I told them I'd take them if I wasn't the designated driver.

Today's procedure was done in a surgical clinic next door to Dr. Flinn's office because they don't have a nurse practitioner currently who can perform bone marrow biopsies. Today felt a little more formal in that they took John in first (without me), had him disrobe and get into a hospital bed, and then they allowed me to come sit with him while he waited to be taken to the O.R. They don't normally have family members accompany patients into that room, but they said if I really wanted to come hold John's hand, I could. Since John had been through this before, had survived it just fine and knew what to expect, I knew he would be okay. So I told the doctor that he didn't need his hand held and I was fine with not watching this time. It isn't a pleasant procedure to watch being done to your loved one.

I am an extremely empathic person by nature. I had so much anticipatory anxiety (for John) before the first bone marrow biopsy that I was on the verge of tears in the waiting room before they took us back. I did not want him to suffer and had read about so many different experiences with bone marrow biopsies. I knew it could be tolerable and also very, very difficult. John never seemed nervous. But I was nervous enough for both of us. However, because he went through the first one so well, my anxiety level was much lower today.

The surgical clinic's staff were all excellent and attentive. The doctor came in to see us before the procedure and assured us she was pretty good at bone marrow biopsies. Following the procedure, when John was wheeled back into the holding room where I was waiting, he said she was telling the truth and that this time the worst part of it only lasted 5-6 seconds. He thought the nurse practitioner had been very good, but Dr. Stoner might have even been a little better. That had been his only worry going into the second biopsy; that the person doing this one might not be as skilled as the person who did the first one.

As usual, John was cracking jokes from start to finish. One nurse remarked about what a pleasant person he is. I told her that no matter what he is going through, he never loses his sense of humor. (The only lapse in his joking around was during those really rough days following chemo when he was SO sick he couldn't even smile. But even then, he was never a difficult patient. Just very quiet.) When the doctor popped in to let me know everything had gone well (before they brought John back to the room), she said, "Throughout the entire procedure, he was telling us how great you are and how you take such good care of him." That was nice to hear. But I think he just makes me look good because he is so low-maintenance. I don't really feel like I do much - other than learning everything my brain can hold about CLL, of course.

My sweet patient is sitting beside me on the couch, head in hand, sound asleep. I'm relieved it's over. So is he.

Tuesday I will take Marian (John's mom) for her six month check-up with Dr. Flinn. Hopefully her CLL will not have progressed much, if at all. And Thursday John will begin his first cycle of CAL-101. It will be administered orally in pill form. But on the first day of the first cycle he has to be monitored throughout the day. They withdraw blood at various intervals and do an EKG at some point in the day. When a drug is being studied, they collect a lot of data. The studies also help to determine the best possible dosage for maximum efficacy and minimal toxicity. Dr. Flinn explained that they have used a low dose of 50 mg and a high dose of 150 mg so far. And at this point, 100 mg seems to be working (with less toxicity than the higher dose). So that's the starting point for John.

The short term results from CAL-101 are very exciting. But it's new and I think Dr. Flinn said the patient (of his) who has been on it the longest has been taking the drug for only about 15 months. It's working well for him, but there is no long term data yet to base long term expectations on. I asked if it was possible that this drug might be something John could take for the rest of his life to manage his CLL. He said, "Obviously, that would be the hope, but I can't predict that outcome because I haven't seen evidence to support it yet. But certainly there is a possibility of that."

He also said that when patients stop taking it for even a couple of weeks, they don't seem to do too well. But if the drug proves effective and is working well for John, they will do what is called a "rollover" into another trial and keep him on it until it receives FDA approval.

Based on everything I know at this point, I feel extremely hopeful and positive. I believe John is going to get good results from CAL-101. At the very least, it should buy us more time with low toxicity. And new therapies are being developed all the time. Eventually, I believe there will be a cure or a more effective way to manage the CLL over a normal lifespan. So the goal is simply to be alive and kicking (as healthy as possible) when that treatment materializes. I will continue to share updates for the benefit of others with CLL, as well as for our family and friends who want to keep track of how John is doing.

And, as always, keep those prayers coming! We appreciate them so much!

Comments

Stephanie said…
I somehow posted my comment on the previous post, I guess from reading 3 post at the same time.
Shari said…
No problem! I got your comment in my email notification and didn't even realize where you had posted it. I'm just glad to hear from you again. I would love to correspond with you through email about our husband's progress with CAL-101, if you would be interested. My email address is ShariLHowerton@aol.com.

Thank you for sharing your experience with me. I was wondering how long your husband had been fighting CLL and you answered that with this last post. Hope to know you better in the future, Stephanie.

My parents were going to name me Stephanie until the last minute when they changed to Shari. : )