Chronic lymphocytic leukemia

Andrew Schorr is a co-founder of HealthTalk Interactive Inc. (HealthTalk.com). A former journalist and television news reporter and producer, he was diagnosed with Chronic Lymphocytic Leukemia in 1996 as a result of a routine blood test. In this journal Andrew tells his story of initiating treatment.

Day One - August 21,2000

On the plane to Houston - it's a four-hour flight from my home near Seattle, Washington. My wife, Esther, and I find ourselves making this trip in order to get the very best medical care for me.

Chronic Lymphocytic Leukemia (CLL) is not a common disease. It would not be high on a list of cancers treated by community oncologists and even by many university doctors. Early on we decided to get a world authority, Dr. Michael Keating, at M.D. Anderson Cancer Center, in Houston, Texas, involved in advising us how to plan for the future and in guiding my medical care when that should be needed. Now, after four-and-a-half years with no treatment, treatment does appear to be needed. While I continue to feel good most everyday, my spleen is now obviously enlarged (although not painful), lymph nodes are obvious on my neck and in my groin (however, usually not tender), and the running I love to do every day is more difficult - my legs just feel heavy. None of that is surprising with a white blood count that has risen from 18,000 in 1996 when the disease was discovered to 241,000 now. While other blood counts including hematocrit and platelets remain low normal, the trend clearly shows disease progression.

From my interviews with CLL experts on HealthTalk.com, conversations with my local oncologist in Seattle and with Dr. Keating, it has become clear a new clinical trial of Dr. Keating's might be right for me. It uses a monoclonal antibody, Rituxan, in combination with Fludara and Cytoxan in an effort to get a long-term remission in a previously untreated patient. Dr. Keating and other CLL researchers are excited about the early results from the trial. Recently, I had an extended telephone conversation with a patient and his wife from Dallas. He had recently begun Dr. Keating's trial and was very pleased with the early results.

So here I am, following in his footsteps. I am aware getting chemotherapy is no fun. The first infusion of Rituxan can cause fever and chills and, in extremely rare cases, death. But I am excited by Dr. Keating's enthusiasm for getting a long-term remission for me. I am willing to take this step in the hope that rather than "upsetting the apple cart" it will lead to a long, healthier life. The faces of my three small children and the dream of dancing at their weddings make it worth it!

Day Two - August 22, 2000

This is testing, consultation, and- if we all agree - treatment day. After four-and-a-half years I am faced with the reality of having cancer and not any longer being able to "cruise" along with it inside my body.

First stop was the lab for a blood draw. I visited here twice before over four years, and the ladies were just as chatty as ever. Once again, this cancer center projected an extremely upbeat atmosphere. On this visit they drew only nine tubes of blood - I think last time it was 10. Even with leukemia, I was relieved to see that my blood was still red!

Next stop was to check in for a bone marrow aspiration and biopsy. In the hallway I spotted the female technician who sweet-talked me through my last "BMB" a year and a half ago. That time there was "zero" pain and no discomfort.. I was hoping that today's test would be a repeat performance.

There was an extended wait for the exam. But the wait was welcome because I ran into a Houston CLLer, Michael Pearlman. I made Michael's acquaintance over the Internet on the CLL list. When I visited here in late 1998, he welcomed me and took me out to lunch at one of his regular haunts. Today, Michael was in for a platelet transfusion. Since last fall, he's had a full boat of treatments and he was just released from the hospital after fighting an infection (I would later hear that Michael had an unusually hard time with the latest therapies, even so, he remains quite upbeat). Once again, Michael presented a "welcome to Houston, it's going to be OK" smile.

The pager went off, that's the pager the bone marrow biopsy registration desk gave me. It was time to take the horizontal position. This time my technician would be Larry That's good because Michael Pearlman gave him rave reviews as the provider of a painless procedure. Sure enough, Larry lived up to his reputation. Getting needles stuck in my hip -- believe it or not -- was a "piece of cake." Larry told me he's been at M.D. Anderson for 27 years. Years ago, he says, it was a somewhat depressing place to work. But now, new protocols have made a tremendous difference in cancer survival and quality of life. Just the same, Larry wished me good luck, and I was happy to accept his good wishes.

Lunchtime brought a conversation with another Houston CLLer, Bill Hoops -- a local attorney. He's the founder of the CLL Foundation, and is raising money to facilitate new research on this relatively uncommon disease. Bill -- like me -- is a four-year survivor, and is doing quite well.

After lunch it was time to see Dr. Keating, a world expert in CLL and the medical expert in whom I've put my trust. He welcomed Esther and me with his typical big smile and "teddy bear" hug. But when it came to a discussion of whether it was time to start treatment, he was all business. He said he was convinced his "RFC" (Rituxan/Fludara/Cytoxan) trial was absolutely right for me. The fact that my white count had jumped from 40,000 to 280,000 in a month-and-a-half was another impetus for me to get something started. Dr. Keating is really excited about the results he's had with most of the 60 patients who have started this clinical trial so far, and knowing that I am looking for a long-term remission, he says that he believes that this is the "ticket."

He answered all my questions, put things in perspective, and gave me the confidence to enroll in a clinical trial that would start for me in just two hours. I'll see Dr. Keating later in the week, and then again in three months for follow-up. The two hours went by quickly, and before long I found myself on a bed in the outpatient "chemotherapy" center, as Nurse Cora started my IV. First came Benadryl and Tylenol to lower the risk of rash and fever. Then came the IV medicine I've been waiting for -- Rituxan. I'm told a single dose is $2,000, but this time, as part of a clinical trial, there would be no cost. The first infusion of Rituxan can take six, eight, even 10 hours. So beginning it at 6:30 p.m. would be the kick-off for a long night.

The first infusion of Rituxan usually presents some discomfort and the possibility of some risks. Typical are flu-like symptoms of fever and chills, as the medicine kills hundreds, thousands, even millions of unwanted CLL cells. I find the experience somewhat surreal. First, because the idea of starting treatment when I feel pretty good seems to go against the grain. Second, because it's remarkable that one IV bag of Rituxan (it's a clear liquid, just like water; you'd think something so powerful would be bright blue!) can start to do so much; target cancerous cells and lead to the prospect of a long-term remission so that I can go on with my life. My concern for this first infusion centered on Rituxan's likelihood to cause fever and chills. I hadn't really given any thought to the IV dose of Benadryl that they gave me to start off. But it appears the Benadryl presented a little "surprise" for us. About one hour into the infusion, I really needed to use the bathroom -- which was down the hall. I was feeling a bit "odd" but not sure that it was lightheadedness. I was tired. Anyway, I asked Esther to come with me -- with Nurse Cora's permission -- to use the bathroom down the hall. You roll the IV pole along with you. So there I was standing at the toilet. BOOM -- the next thing I know I'm on the floor with Esther and five nurses around me, shouting to me asking if I am all right. I had passed out. Not actually a bad feeling, because I was so sleepy. But the unnaturalness of it was pretty unnerving. So it was a wheelchair ride back to my bed, with nausea along the way, and everyone paying me just a little more attention from then on. It was a lesson to me that powerful medications were now in control and not me.

The first infusion of Rituxan can be tricky, and the nurses monitor your blood pressure, pulse, and temperature very frequently. They start the infusion at a slow rate and then bump it up every hour or half-hour. But if fever or low blood pressure show up they either stop for a while or slow things down. Over the next many hours it all happened to me. My fever went up to something over 101, and my blood pressure went down. I just felt tired and, with the fever, a bit hot. I only had chills briefly at the beginning and they went away with warm blankets and a pause in the infusion.

It was a long night. We'd arrived at the "bed unit" at 5:00 p.m. The infusion began about 6:30 and I didn't finish the Rituxan until 1:10 am. Then they have you wait to see how your temperature and blood pressure react. I dozed off and at about 2:45 Nurse Carol (the night-shift nurse) checked me out. Everything was back to normal and it was okay for me to leave.

At 3 a.m. Esther pushed me in a wheelchair through the long hallways of this major, cancer-fighting medical center. Chapter One was over. I was now officially a cancer patient "in treatment," part of a community of millions of people who have been down hallways just like the one leading back to a night's rest. I thought of those other people as we rolled to the hotel across the sky-bridge. How brave people are. How dedicated are the doctors who keep searching for a cure. I would give anything not to be here. But, given my diagnosis, it felt good to be in the good hands of Dr. Keating, taking the latest treatment protocol, and fighting back.

Day Three -- August 23, 2000

Esther and I slept until 11 a.m. I still had a "chemobrain" until 3 p.m., and was not up to full strength. But calls from well-wishers came in and that helped a lot. A late lunch helped some too.

The afternoon was pretty uneventful. We paid a bedside visit to fellow CLLer Michael Pearlman as he got a platelet transfusion. We also had a chance meeting in Michael's room with Dr. Keating. He asked if my fainting in the bathroom last night during chemotherapy was really just Esther and me fooling around at an inappropriate moment. Oh, how I wish I'd had the energy last night even to think about that!

I paid a quick visit to the lab for a daily blood draw. I had the chief technician as my phlebotomist. I bet she drew two tubes in 30 seconds. She was the fastest I'd ever seen.

By 4 p.m. I was revved up and really feeling great. Later I would see a report that showed my WBC was down by 100K in just one day! So the Rituxan was definitely at work.

At 8 p.m. it was time to report for day two of chemotherapy, this time Fludara and Cytoxan. Esther and I had the benefit of the final night of the smash television hit "Survivor." We'd never watched it before so it seemed pretty silly, but it helped pass the time. Tonight's infusion was nothing like the night before. The whole thing took less than three hours. The actual infusion was only about two. And no real side effects so far. So I am a happy camper today.

Now the above is my journalistic recounting of the days' events. But I wanted to share a couple of observations:

1. Everywhere we go here at M.D. Anderson we see cancer patients accompanied by loved ones. I met a man last night who has spent 8 weeks here -- living in a hotel with his wife -- and escorting her to daily treatments. These people -- like Esther -- are saints. We really could not get through this without them.

2. The power of the Internet in bringing people together who share a common health concern is amazing. So far in Houston I have seen two patients I know from the CLL listserv and spoken with three more. This connection we have made in reaching out to one another makes a tremendous difference, and I am grateful to so many who have been' of such support to me and Esther as I begin treatment.

3. It is finally hitting me that I have crossed a line to become someone "in treatment." After four-and-a-half years of "watch and wait" (and watch and worry), I am seeing powerful and toxic drugs drip into my veins. No one can predict the results, nor the future -- doctors can only say what they expect will happen to most people. So it's even more a time for uncertainty and hope. But it does feel good to be doing something. Hopefully Dr. Keating is right and it will not "upset the applecart" of my generally good quality of life up till now, and give me back an extended future. It's an adventure for sure!

Day Four - August 24, 2000

I feel like I work here! I know my way around quite well. The nurses know me, some technicians know me. I bump into Dr. Keating in the hallways - he's pleased with my counts. So my nature is to try to take control and turn this "un-vacation" in Houston into a positive stay, minute by minute.

I slept late and felt really strong. Michael Pearlman, whom I see everyday when he comes in for treatment with Campath, thinks I may be overdoing it. Esther tells him it's my way of coping. Esther and I had lunch with Beverly from Colorado and her husband Sam. Once again this was another CLLer I met via the Internet on the CLL list and we coordinated our meeting via email once we realized we'd both be at the M.D. Anderson leukemia clinic at the same time.

Beverly is still untreated and doing well. She's grappling with the issues of what to do with diet and mental attitude while trying to keep the worry at bay. Talking to other CLLers seems to help her, as it does most people. She wanted to meet Michael even while he was getting more aggressive treatment. I told her that may very well not be what's in store for her or me since the disease is variable and, as Michael says, what we call CLL is probably several different diseases and not just one.

By mid-afternoon I signed in for my blood test but was redirected to another floor to see a financial counselor. My account had been blocked. It turned out to be a miscommunication. They did not have my new insurance plan entered in my record and, of course, when they called the old company that no longer covers me those folks said "No way" were they paying any M.D. Anderson bills for Andrew. So a little time and the display of new insurance cards with Monica in Patient Services settled the whole thing. Insurance can be a real pain and this was really a minor blip.

While I was waiting to square away the billing I met a neat older gentleman, a CML patient from Pittsburgh. I think his name is Marco. He has been treated with Interferon injections for several years and now, like most CML patients, he is in the trial using a new pill developed by Dr. Brian Druker in Portland, Oregon. He's doing okay, but not great since he has some "blast" cells that may not respond. Even so, he -- like most people I've met here -- is really quite upbeat. Marco told me the story of coming to Houston for a checkup some time ago expecting to be in town for five days and instead he was here for three months! He had gotten pneumonia. Marco said he bought some clothes and took it all in stride and his insurance covered everything. After Monica got my billing record squared away I stopped back in the waiting room to wish Marco well.

It was back to the lab and another one of those "world's fastest blood draws." It wasn't long before I found myself back in the bed unit getting my second infusion of Fludara and Cytoxan. Once again, it was a pretty straightforward three-hour episode with no significant side effects. Nurse Christine thought it would be a good idea to leave with a prescription for anti-nausea medication, which I happily filled. There wasn't a lot of anxiety this late afternoon. The familiarity of the procedures was helpful, but I am eager to get this over with and go home.

Days Five and Six - August 25 & 26, 2000

Weird. One day you feel great. The next day someone pulls your plug. Day five wasn't a bad day, just not a high energy one. To be expected, I guess. And this was an important day with a follow-up appointment with Dr. Keating. Would I be "on track" for a long-term remission? Is the chemotherapy working?

At noon, in Keating's exam room came the answers: "Yes," and "too soon to tell." Yes, that the treatment was having a positive effect, but too soon to tell how the whole show will play out. I took "so far so good" to be good enough, for now. Outside in the waiting room and down the halls are so many, many people sicker than I am. We CLLers really are lucky among so many cancer patients. Sure, nobody would pick this disease and, at least from a historical perspective, it is terminal. But just maybe I am part of re-writing those not so old books that say how much CLL shortens your life. Maybe I'm part of a new vanguard of patients who can help stop the clock of cancer -- while treasuring every day with the knowledge of what's really important.

So it was on to treatment #4 (the third day of Fludara followed by Cytoxan). And, once again, it was no big deal. Once again Nurse Kristina (one year out of nursing school from the Philippines) was a delight. By 7:30 p.m., after about three-and-a-half hours, we were on our way. Maybe because of all this talk about blood levels, I had an appetite for the unthinkable -- a steak! I have hardly eaten red meat in 25 years, but tonight it sounded good. Esther was pleased I had a big appetite.

By the next morning, it became clear I was wise to have a big meal that night of the last treatment. This Saturday, as I awakened, nausea hit me in waves. And despite trying to keep down the prescribed anti-nausea medicine, every 15 minutes I found myself praying at the toilet. Nothing too exciting...2 minutes or so of dry heaves...and then 15-20 minutes of lying in bed wondering why my body was turning against me.

Of course, it wasn't turning against me but rather complaining about the insult of being a cancer-cell battleground over the past few days. Finally, my stomach was pitching a tantrum and I couldn't stop it. But Nurse Debbie in the emergency room could. She and Dr. Muhammed hit me with IV Zofran and it stopped the revolt in its tracks. But the trip to the ER was a 4-hour exercise.

Obviously, this was sort of a comeuppance for me. I had been sailing along until the nausea hit. It was a reminder that powerful forces were at work -- well beyond my control. Maybe beyond Dr. Keating's control too. So what one has to rely on is faith. Faith in some power that will look after you. And while the outcome could be different than what we might expect or even hope for, there can be the belief that it's part of a plan and that there is a reason why things turn out the way they do.

Day Seven--August 27,2000

No nausea today. Good thing. This is a traveling day -- traveling home.

Dr. Keating made a quick trip to Canada to give a scientific talk, but he'd be back this morning and wanted us to page him to get his read on yesterday's blood test results. We paged him as he asked and our phone rang at Rotary House a minute later. White count down some more -- now to 120. Platelets up to 84,000. Looking good. "Sorry about the nausea," he said, "but not to worry, it should not occur on future cycles; or, hardly at all."

Really, he was quite pleased and wished us well on our flight home. It was all so matter of fact. The sun was shining and just maybe it was the beginning of a real new day for me. Yes, there would be more cycles and another trip or two back down here for checkups. But maybe the whole process would get a little easier, a little less anxiety producing, with less noticeable effect on healthy me and even more effect on those unwanted leukemia cells.

So it was off to the Houston airport after a brief adventure to Wal-Mart to get the kids little gifts. Our 3-year-old, Eitan, has been begging us for one of those ridiculous "singing fish." Thankfully Wal-Mart was sold out and Eitan will just have to settle for a model of the space shuttle and three space-suited astronauts.

I am so glad I saved up miles so we could fly for four-and-a-half hours first class. It wasn't that I was feeling unwell. But I really wanted to be pampered by the airline just like I've been by Esther. I could really get used to this! Do you have to have cancer to feel like a VIP? Or is this a good reminder of how moments and relationships are to be treasured?

The flight home was good. And the welcome at home was even better. We rendezvoused with the kids at a neighborhood restaurant near our home. The smiles from the kids were positively incandescent. To them I looked just a little bit thinner (I'd lost maybe 8 or 9 pounds), but I was still Daddy and they were ready to make up for lost time. So was I. More days of being Daddy, that's what I long for.

One Week Post-Treatment -- September 1, 2000

WOW! White Blood Count went from 280,000 to 18,000!

Two Weeks Post-Treatment -- September 8, 2000

White blood count is down to 3,500; platelet count is 117,000; neutrophils are good; and, hematocrit is good. Dr. Keating's nurse says this is exactly what is expected two weeks post-treatment and is extremely positive. Counts will continue to improve from here on. Nothing to worry about. Full speed ahead for the second cycle in two weeks.

Two Months Post-Treatment -- October 24, 2000

Just got my latest counts. WBC at 3,400, platelets at 72,000, hematocrit down slightly to 37 (OK, so I can't run a marathon today) and neutrophils are 42 percent. So I'm pleased that things are going in the right direction.

Three Months Post-Treatment -- November 28, 2000

This was my day at M.D. Anderson in Houston for my checkup with Dr. Keating. After three cycles of treatment on his clinical trial he wanted to see how I was doing. And the news was great. My counts were all where he hoped they would be -- normal or just a little below normal and holding steady. Bone marrow lymphocytes were down to 30% when they'd been over 95% before. Dr. Keating still wants to go ahead with three more cycles to ensure a long, and complete remission. After the sixth cycle I'll be back for PCR testing with a super sensitive look to see if all evidence of the disease is gone. Keating is hoping that the disease will be knocked back to that full extent where I can go on with my life for many years and then take advantage of new treatments -- when, and if, they are needed.

It all sounds great to me. While I am not looking forward to the nausea and tiredness that can go with the next cycles of treatment, it does sound like they are doing a great deal of good and the end result is very, very appealing! On the way to the airport I called Esther and, of course, she was thrilled.

Six Months Post-Treatment -- February 25, 2001

Today is a brilliantly sunny day in Seattle -- unusual in February. But we're already having an incredibly sunny and dry winter. On a day like this -- pre-CLL -- I would have looked forward to a vigorous run through the woods. But over time, the disease and then the treatment, seemed to siphon off some energy (and some enthusiasm). But today the energy and enthusiasm were back in force -- a match for the strong sunshine.

It's less than two weeks following my 6th and final cycle of therapy that combined Rituxan, a monoclonal antibody, .with two chemotherapy agents. I've gotten past the nausea, constipation, lack of appetite and lower energy. And my doctors say I'm in complete remission in that my white blood count is now about 2,300 when it used to be 280,000 and other ingredients of my immune system are normal. Next month I will return to Dr. Keating in Houston for further tests and to see if I am in "molecular remission" -- that will be when they search with a super-sensitive FOR test for any cancer cells in my body. I am not counting on no cancer, but if the treatments have knocked this slow-growing cancer way, way back, that will be a blessing.

I am confident that when the cancer returns -- and I have to be realistic that it probably will -- it will be several years from now when there will be new treatments to effectively knock it back once again for an even longer time. So here's to bright sunshine, runs through the woods, thanks to my doctors and the latest medicine, and a prayer for many years of good health.

[Andrew Schorr's "A Patient's Journal" is reprinted with permission from Health Talk.com]

Editor's note: In this space, we are privileged to hear from Andrew Schorr, the co-founder of HealthTalk.com, also known as HealthTalk Interactive. HealthTalk.com is one of the few health-related dotcoms still standing, and one that provides a unique vision and purpose - linking medical experts with those who suffer from chronic, long-term illnesses, such as diabetes, MS, or cancer. Long-term sufferers have different needs and concerns than someone who wants to visit a website for a one-shot introduction to what's ailing them, and the ongoing participation of medical experts insures for current, up-to-date information (though weighted towards conventional medicine) that can be accessed either by web-based audio broadcasts, known as webcasts, or by more traditional means, such as reading the text-based interview transcripts.

Schorr brings a wealth of experience to his work at HealthTalk.com. His background is in broadcast journalism (as a television producer and an anchor), and together with his wife, Esther, spent years producing medical documentaries on a variety of health topics. Unfortunately, he can also relate to his online community on the deepest of levels: for several years, he has personally been battling Chronic Lymphocytic Leukemia, or OLL. In this segment, reprinted with permission, Schorr details his own journey through treatment at M.D. Anderson, the premier cancer facility in the US, according to US News & World Report.

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