Cruise Control with Idelalisib (a long overdue update)

We are driving back to WV from Nashville, TN as I'm writing this blog entry on my iPad. I guess I need to apologize to my CLL readers for the long breaks in communication. It's been quite a while since I've posted any updates at all about John or Marian's current health status. There's actually a very good reason for that. They are both doing so well that every checkup is extremely uneventful. There's just not much to talk about other than how well they're doing. Our visits are more like a formality. Since they are both still involved in a clinical trial, they are monitored closely. But they are on cruise control and CAL-101/GS-1101/Idelalisib is still working beautifully to manage their CLL. Both have normal blood counts and lymph nodes. And they have for years now. 

John began CAL-101 in May 2010. Marian was enrolled in a separate trial in October 2010. For any new readers who are unfamiliar with our history, John had failed FCR and was subsequently enrolled in the Phase I study of CAL-101 for relapsed and refractory CLL patients. Marian's  platelets were dropping and she was becoming anemic. Fortunately for her, right at the time she was needing to begin treatment, a study for elderly treatment-naive patients was opened and she was enrolled in that. She had a bump in the road in January of 2011 when she developed lung inflammation and pneumonia. But she had a full recovery and has been doing beautifully ever since. If you are interested in details of her pneumonia, I documented it here on my blog and you can search the archived posts for those. It was never determined for sure, but it is possible that her pneumonia was related to CAL-101 since there have been other patients in trial who developed similar lung inflammation and cases of pneumonia. However, she continued treatment within a couple of weeks at a slightly reduced dosage and has never had further issues.

Earlier this month, she had outpatient surgery to remove a pretty extensive and chronic sinus infection from her right cheek sinuses. (It had not responded to antibiotics.) We don't know if it was related or unrelated to CLL or treatment. Dr. Flinn said it could be a complication or completely unrelated. But either way, it's taken care of and my almost 81-year-old mother-in-law breezed through the surgery and recovery. We saw her ENT yesterday after her appt. with Dr. Flinn and he said all her blood work came back clear/normal. The pathology report had discovered some sarcoid cells and Weggener's Granuloma in the sample removed from her sinuses. But neither showed up in her blood. So it was confined to the sinuses.

I have to confess that where I once read CLL forums and blogs on a daily basis, keeping up with every little detail of advancement in the treatment and management of CLL, I now skim through emails and go long stretches of time without reading blogs and forums. I don't think about John or Marian having CLL on a daily basis and I don't think they do either. It's under control and life is normal. The only symptom CAL-101 hasn't alleviated for John is fatigue. He still gets very tired by mid-afternoon. But he's up before the crack of dawn, leaves for work at 6:00 am and (except when we are out of town) he works six days a week. So the fatigue hasn't been so extreme that he's had to make drastic changes to his normal life. He just comes home earlier than he used to and often falls asleep on the couch at night watching TV. Not a terribly big problem all things considered. 

Since it seems quite possible -- even likely -- that John will have a normal lifespan managing his CLL with this little pill (or another similar drug in development), the compulsion I once felt to be consumed with CLL reading has faded. And I enjoy being able to forget about it. Sometimes I feel guilty for being absent from my favorite forum (CLL Christian Friends) for long stretches of time. So much support and encouragement was there for me when John was initially diagnosed. I needed somewhere to go and pour my heart out (and believe me I did). Therefore, I owe a real debt to that group of friends and they are a permanent part of my heart even when I don't check in regularly. I always hope they know that. 

For those of you awaiting FDA approval of Idelalisib (the name that has now been given to the drug originating as CAL-101) for CLL, I asked Dr. Flinn how much longer he thought approval might take. He said Idelalisib will probably be approved for a certain lymphoma within six months. But it will take longer for CLL. However, Ibrutinib (which is a similar drug), will probably be approved for CLL within about six more months. So that's good news. I don't fully understand the approval process and how a drug is approved for one disease but not another. I do understand that it has something to do with insurance companies and what treatment they will agree/not agree to pay for. These drugs will be expensive when approved. 

I cannot possibly put into words how grateful I am that John and Marian both had the opportunity to get CAL-101 in the earliest trials. It's been a miracle drug for both. John's only other option at the time was stem cell transplant, which meant heavy chemo. SCTs work for some and not for others. They also carry with them the potential for some major side effects and complications that can alter one's quality of life permanently. I was apprehensive about that decision and did not want John to make it lightly or uninformed. So, at that time, I was reading everything I could find in search of any alternative to SCT. Had I not been on the Internet, reading other patients' experiences and reputable sites with so much valuable information about CLL and treatments, I would not have known about the first CAL-101 clinical trials. Nobody knew at that point that CAL-101 would be so successful in the treatment of CLL. Dr. Flinn had not mentioned CAL-101 to us. But I asked about it. And I had contacted Dr. Byrd's office at OSU because I was determined to get John there if Dr. Flinn didn't have an opening. I shared with Dr. Flinn that I was doing my own research and had an appt. at OSU, but would really prefer staying in Nashville with him if he could get John into the same trial. He said he'd try. He did. And within a week of John's enrollment, that trial was closed to new CLL patients. I'm thankful Dr. Flinn was willing to consider my input and allowed us to make those treatment decisions. One of the things I've always loved about Dr. Flinn is that he is not ego-driven (as some doctors are). He's been a friend as well as our physician. And he's never minded my questions or my desire to understand all the ramifications of our different options.

God obviously gets credit for orchestrating the precise timing of these events. But I was doing my homework and whatever else I could do to be a good advocate. John avoided chemo for as long as he could (at my urging). Had he failed treatment months sooner (which he would have), there would not have been a CAL-101 clinical trial in existence. And SCT would have been the only option. I don't know what his outcome would have been. Thankfully, God had something different in mind. 

No matter how determined I was to be a good patient advocate for my husband, I could only help him be informed of the options that existed. But I will always be glad I took my role so seriously, did the digging, did the learning, asked lots of questions, and didn't hesitate to speak up and say what I thought when discussing options with our CLL specialist. Some of you will remember, when John was first diagnosed in 2007, the local oncologist we initially saw was going to treat John with chemo immediately. I insisted on other opinions and found that we had a CLL specialist in Nashville. We had already made an appt. to see a specialist at Mayo and we kept that appointment. But when I told Dr. Zent that we had an appt. with Dr. Flinn shortly after we got back, he praised Dr. Flinn and confirmed to John what I had been saying, that if we had a true CLL specialist within an hour of home, it didn't make sense to see anyone else. He explained to John all the reasons for this and repeated everything I had already learned and had been telling John. But coming from a doctor at Mayo, his words had more weight and credibility than mine. As it turned out, we didn't really need to make that trip to Mayo since we had access to Dr. Flinn in Nashville. But it was worth the trip just to have Dr. Zent repeat things I had already been saying. I think from then on, John realized I really did know what I was talking about. 

I have taken my role in John's health very seriously and I always will. I'm telling you this (as I have before) in the hope that everyone reading my blog will realize how essential it is to either be or have a strong advocate in your own healthcare. Had I been as passive as John was in the early stages of his CLL, it's possible he might not even be here today. I'm thankful I have my husband -- not just alive, but healthy. 

I'm savoring every day on cruise control and I hope that continues for decades. You can be certain that if things change (for John or his mom), I will quickly revert to being a CLL sponge, soaking up everything I can read and learn once again. Right now, however, I'm busy soaking up the ordinary but precious moments of day to day life.


justme said…
Of course we know that! :) So glad John and Marian are doing well and that you're "busy soaking up the ordinary but precious moments of day to day life." Glad to see you're blogging again, too. xo
How can I get relief from my joint pain?