Day One of a CLL Clinical Trial (FCR+Lumi)

I am sitting in a folding chair beside my husband in a treatment room at SCRI (the Sarah Cannon Research Institute of Centennial Hospital). John is still receiving his pre-meds by IV, which include Benadryl (to minimize the chance of drug reaction) and a steroid (to decrease risk of TLS - Tumor Lysis Syndrome - which he suffered after his first Rituxan infusion last summer). As some of you may recall, he breezed through a whole day of being infused with no reaction. Then, only after we left the office, he began to feel faint and passed out in the elevator (hitting his head on the metal threshold as the doors opened) and then doing a repeat performance in the doctor's office a few minutes later. I would prefer we not have that experience again and so does the entire staff, including Dr. Flinn. So we are going to stay for about an hour after he has finished getting today's dose just to make sure he isn't going to react again.

John started taking Alopurinol yesterday. For those of you unfamiliar with CLL or chemotherapy, Alopurinol is a drug that helps protect the kidneys (in John's case, the kidney), from all of the toxins the body has to flush out as the drugs kill the malignant cells and they have to be processed out of the body through the kidneys. He will also begin taking antibiotics as a precaution today because his immune system is about to be severely compromised by the chemo.

John had agreed to participate in a clinical trial since he had to start chemo anyway. In this trial, the standard FCR is supplemented by a fourth drug, Lumiliximab, in an experimental effort to enhance the length of remissions. One group of patients receive the standard FCR and the other group (randomly selected by computer) receive FCR + Lumiliximab. There is extra monitoring involved and additional lab work for the study. John has donated many vials of blood already. So in exchange for all the extra time and blood letting (he he), we have been hoping he would get the fourth drug. We found out this morning that he is in the Lumiliximab arm of the trial. So that was great news.

Although it has yet to be scientifically proven, our doctor (a CLL specialist heading this trial) believes the results thus far suggest that Lumiliximab does extend remissions for most patients by about six months on average. And while that doesn't sound like a very substantial length of time, the longer one can go without repeating treatment, the better. An extra six months without treatment is a gift. Remissions can range anywhere from a year (at worst) to eight years (at best). I'm hoping John's remission will last until the Kanzius machine is approved for CLL. (Human trials for that will begin in 2011 if there are no delays.) Right now, this invention is the most promising thing on the horizon for curing cancer without the debilitating toxic side effects of chemotherapy.

The only down side to being in the Lumi arm of the trial is that all of John's treatment days will be long this week. The days we expected to be short days (because he would only be receiving F and C) will now be long days of F, C and L. Today and Thursday, he receives R (Rituxan). But then we'll have three weeks before the next round.

I have had lots of emotional ups and downs approaching this day. Waves of anxiety are par for the course for most, according to other patients and caregivers I've been blessed to become friends with through participation in CLL forums. (CLL Christian Friends being my very favorite.) Today, however, I feel really positive and unemotional. I'm certain it's a result of all the prayers. I just feel confident that John is going to tolerate treatment well and achieve a good response.

I heard from Lillian over the weekend and she was enjoying three days off with no treatment because of the holiday weekend. She will be having more chemo and radiation this week. One down, six to go (I think that is the plan). She had a lot of pain following the radiation, which was subsiding over the weekend. She said she was just savoring every day of feeling good before the next round starts. My sister-in-law is one tough cookie. Her outlook and determination are amazing.

Thanks again for all your prayers. I will try to update my blog when there is something to report for those of you who like keeping current on details. The rest of you can just skim. (Ha!)


Betty Kirschner said…
Hope all went well today,you and John are in my thoughts and prayers. I believe everyone going through any medical procedure needs an advocate, John is lucky to have you.

I know you are busy, would love to be kept current on John's progress. Shari, be sure and take care of yourself, love to both you and John.
John Wagner said…
Wow, I can't believe how long it has been since I read your blog. I spent a long time catching up. I certainly pray the clinical trial proves to be just the right thing for John and he experiences a nice long remission. I also pray he is one of the folks who is able to tolerate his treatment with very few side effects. I will try to keep up a little better. I appreciate all the details you share.
Shari said…
Thanks for letting me know you appreciate the updates. I am the recipient of a lot of good natured teasing about how thorough and descriptive I am. Not everyone can "devote the time" to reading a whole post. LOL. It's reassuring to know that someone (besides me) is truly interested in the details. My blog is an outlet for me, as well as a way of letting others know how things are going. I would probably write even if nobody read. But I really do appreciate knowing that some of you are appreciating the details along with those who skim for highlights. Either way, I truly appreciate that you are checking to see how things are going. I can't possibly make a phone call to every person I want to communicate with. If I had fewer close friends, I could. But I find myself in the very wonderful predicament of having so many friends who love us that there isn't enough time in the day to have a personal conversation with each of you! We are truly, truly blessed.