CLL, Kinase Inhibitors, and Patient Advocacy

This is an excellent video from the recent ASH conference.

I am so thankful both my husband and my mother-in-law have been able to participate in clinical trials for CAL-101. When John failed chemo, it certainly did not seem like a blessing. But that was how he qualified for the clinical trial with CAL-101, single agent therapy. His mom qualified by being over 65 and untreated. Both needed this treatment at precisely the time each trial was off and running.

These drugs may make it possible for CLL patients to live out their normal lifespans.

When John failed FCR, the subject of stem cell transplant was on the table. I had been reading about CAL-101 trials and corresponding with an online CLL friend who was in a trial with Dr. Byrd at OSU. I was convinced John needed to try CAL-101 rather than transplant and I pushed for that. Between appointments with Dr. Flinn, I called Dr. Byrd's office to see if I could take John there -- just in case Dr. Flinn was not participating in the same trial. And I told Dr. Flinn how much I wanted John in that trial, even if we had to travel. Fortunately, Dr. Flinn was participating in the same trial and he said he would try to get John enrolled in it. Which he did within the following three weeks. Right after John started treatment, that trial closed to new CLL patients.

CAL-101 started shrinking John's lymph nodes within days of his first dose. And John never had a big spike in his white count, as many patients do in the initial weeks of CAL-101 therapy. Perhaps that is because he had recently received FCR. Or maybe he was just an ideal candidate for CAL-101. All I know is, it has worked beautifully. And nineteen months after starting CAL-101 at the lowest dose, his blood counts and lymph nodes are normal.

Apparently, it has been reported that only one CLL patient has responded well to the lowest dose of 50 mg. So we know John is that patient. His mom has done well on 100 mg. And many CLL patients are doing well on doses of 150 mg. and higher. It's exciting to know that John will have the option of increasing his dose in the future if needed. But for now, I'm glad he is taking no more than he needs to keep his CLL under control.

This is a very exciting time in CLL research. These new drugs may eliminate the need for chemotherapy for many patients, improving quality of life as well as lengthening survival rates. I'm thrilled that my husband and mother-in-law are participants in this cutting edge research.

When John was diagnosed in 2007, we had no idea what was ahead. But God did. He was never surprised. And He has guided our path. I told John the other night that I feel like God put me in his life for this battle - because God knew I would not be passive. John would have been.

For those of you reading who do not know our story, John received his initial diagnosis from a local hematologist. About three weeks had passed between his high white count showing up in routine blood work and our appointment with the hematologist. During that time, I did almost nothing but read about CLL online and join support groups. I was a sponge. I soaked up information and I cried, worried and projected. I was sharing with John what I had learned about the importance of seeing a specialist. And we'd made an appt. for a thorough evaluation at Mayo. I knew we needed to find out all of John's prognostic markers. I gave John a mini crash course in what I'd been learning about treatment options and how important treatment decisions were. I told him that not just any doctor would do and I didn't want to make that decision based solely on convenience. John would have. It would have meant less time away from work. I didn't care about that and I was vocal about it.

I'm reiterating all of this to set the stage for that first appointment. On our ride to the doctor's office, I told John that I was going to ask certain questions and the way the doctor responded would let me know his level of expertise in CLL. John said, "Okay. But do me a favor. If he says the wrong things, let's not challenge him. Let's just smile and nod and then you can tell me he's not the guy after we leave." I agreed.

In this initial examination, the hematologist in question told John that his lymph nodes could be swollen as a result of infection. So he gave him a Zpack and said if they went away after taking the antibiotic, good. If they didn't, they were swollen from the CLL and John would need to immediately start treatment. At this point, we didn't even know all of John's markers. And I knew that there were milder options we could at least consider before going straight to chemotherapy. So, I asked what kind of treatment he would use. He answered, "FCR." I said, "That's chemo. You would immediately proceed to chemo?" And in a very dismissive, flippant (in my opinion) tone, he said, "Well, yes..." but in his thinking, aspirin was chemo. And then he laughed.

I didn't find that amusing at all. I wanted to say, "Oh yeah? I guess you've never had to take it because I doubt that a chemo patient would agree with your assessment." But I kept my promise and kept my mouth shut. However, I knew in that moment that I would never entrust my husband to that doctor. And when we left, I told John that if I'd learned anything, I had learned that he did not need immediate treatment and we had time to consider options other than going straight to chemo. And I explained to John why this was not a treatment we should rush into. One of the points I made to John that day was that there were going to be new, cutting edge therapies in development and I wanted him to take his time in making critical treatment decisions because, once made, side effects and complications could not be reversed. I never tried to make John's decisions for him. But I took seriously my role of making sure he did not make uninformed decisions.

We never went back to that doctor. On the way out the door of the building, I said, "I don't like that guy and he is not the right doctor for you. I will find someone who is." I was actually pretty ticked off about the aspirin is chemo remark. And for a long time I considered writing him a letter. But I never did. Shortly thereafter, an online CLL friend (from the CLL Christian Friends forum) told me there was a CLL specialist in Nashville by the name of Dr. Ian Flinn, and he had recently come here from Johns Hopkins. I called immediately and made an August appointment. In the meantime, we went ahead and kept our July appointment at the Mayo Clinic in Rochester for a complete evaluation with Dr. Clive Zent. And during our consultation with him, John mentioned Dr. Flinn and asked Dr. Zent's opinion of him (which was glowing, by the way). Dr. Zent told John that if he had a specialist like Dr. Flinn within an hour's drive, he should not consider going to anyone else. I loved it that a Mayo doctor was reinforcing all the same things to John that I had been saying to him.

As a result of all the research I had done those first few weeks, I understood everything Dr. Zent had to say to us in that consultation. Nothing went over my head. And because there had been a few well-meaning friends who had cautioned that I might be reading too much on the Internet, I felt a great deal of satisfaction when Dr. Zent emphasized a lot of the same points I had been emphasizing. I didn't have one single detail wrong as a result of my online research. I was a highly educated CLL advocate right out of the gate. And it felt good to have that substantiated by our visit with Dr. Zent. I never said it, but I was thinking, "Well, I guess you see now that I do know what I'm talking about." : )

I'm revisiting these details for a very specific reason. If John had put himself in the care of that first doctor and gone along with his recommendation, he would have received FCR in 2007. As it turned out, FCR did not even work for John. CAL-101 wasn't available then. And who knows what our options would have been realistically. John might have had no good option other than transplant. And 40% of CLL patients who have transplants don't survive the transplant. (That was the percentage the last time I researched it.)

When we consulted Dr. Flinn, he did not urge John to immediately start chemo. He said John could try to tolerate the lymph node swelling for a while and try some milder treatments before electing to undergo chemo. In the summer of 2008, John received Rituxan (a monoclonal antibody) infusions for eight weeks. It did not give him a remission, but it reduced the nodes enough to buy him some time. And in September of 2009, Dr. Flinn suggested that John might want to go ahead and have FCR. He hadn't urged us to rush into it, but he didn't want to see John put it off too long, either. FCR gives most patients a decent remission, and some a long and deep remission. Dr. Flinn was hopeful that John would respond well. But he didn't. His last infusion was the last week of January, 2010. The lymph nodes only shrank by about 50% and within weeks the lymph nodes were growing back.

I pressed for CAL-101 before considering transplant and Dr. Flinn did not object. He got John a spot in the trial. And now John is a star patient on the lowest dose.

There was no way to know for sure that CAL-101 would work for John. But I'm sure thankful we had the opportunity to find out. And if John had failed chemo in 2007, his whole situation would have been irreversibly altered. I am so glad I learned the importance of consulting a CLL specialist before proceeding with any course of treatment. And I'm thankful I had other CLL patients to turn to online, who helped to educate and inform me that treatment decisions for CLL, which is chronic, are not urgent decisions that one has to make overnight. You have time to gather information, get more than one opinion, consult a specialist, research your options. Because I knew those things early on, I was able to look out for my passive husband, who would have more than likely not researched or challenged whatever that first doctor told him to do. That is his nature. And he might not be here to be in this clinical trial as a result.

I'm not saying any of this to toot my own horn. John has been a blessing to me more than I could ever be to him. But I know I have played an important role in his health care and I sure feel good about that. I sometimes think this was one of the main reasons God sent me to John. It wasn't his time and I got to be God's instrument. In most ways, John takes care of me. But in this way, I feel tremendous satisfaction in having taken such good care of him.

Any time God puts someone in my path who has just received a diagnosis, I risk being perceived as overbearing in stressing the importance of consulting with a specialist in their particular disease. I do that because I know how important it can be. I do it because I genuinely care.

Our current situation could have been so different and our choices were more critical than we even comprehended. I was not about to entrust the care of my precious husband to an arrogant doctor with a casual attitude toward chemotherapy. And I have never regretted being vocal about that.


Anonymous said…
Congratulations, you Go Girl!
Your observation that some doctors should not be in the business is right on.
My husband had high white counts for three years and the fool doctor never noticed. It was only after I did that "internet" research and asked that he be checked for stage 4 lime disease that a hemotologist was consulted. Good news not lime disease, bad news you have CLL!.
We left and got a specialist right after that.
Patient advocacy is so important because the patient is dealing with the disease and does not have the strength to fight the system.
We are still in stage 1 so are looking forward to new treatments in the near future.
Good luck to your family and thank you for your observations and advocacy.
Shari said…
Thanks for your feedback. I always appreciate hearing from readers. I hope your husband stays in watch and wait forever. But if treatment is needed down the road, things are looking good with these new drugs.