Tuesday, September 17, 2002

Chapter Three; More Rituxan

Dave’s Great Adventure
Chapter 3, Verse 1
September 17, 2002
More Rituxan

Well, today I completed my first chemotherapy “hat trick,” I got three drugs at one sitting and, again, did quite well. (A “hat trick” in American and Canadian hockey is the act of scoring three goals in one game; does anyone know the derivation of this term?) Back to that in a moment.

Yesterday I went to work, as scheduled. I still felt tired, but got through the morning okay. After lunch I was feeling more tired. I had only one patient scheduled in the entire afternoon, but figured we’d find some other folks for me to see as well, women who might walk in with problems or who might be late being seen because someone was running late or something. Well, the staff finally threw me out of the clinic, saying they could manage without me and that I should take my wife to a movie. Debbie even got MovieLine on the phone and found that there was a showing of “My Big Fat Greek Wedding” close by in a half hour. That’s what Kathy wanted to see, so I took the “advice” and left for the movie, which we both liked a lot, though I yawned quite a bit (out of fatigue, not boredom) during the show.

After the movie we went back by the clinic to pick up Kathy’s car and while there I went in to check on the results of my blood work. It still looks good. Most of the values are about what they were a couple of weeks ago. My platelets have dropped to modestly subnormal values (140,000) but there are still enough to clot when the need arises. Probably most importantly, my neutrophils are still adequate as well (you remember those guys, don’t you, the bacteria fighting white cells). My blood chemistry is mostly okay but my creatinine is creeping up, to about 1.4. This is a measure of how well your kidneys are functioning, and about 1.0 is normal for most people, with up to 1.3 being normal. So I’m just slightly high but that is not functionally significant. This could be partly from the chemo drugs, but I started a little high anyway. That could be from minor kidney damage from all the APCs and Fiorinal I’ve taken over the years, or the Motrin I‘ve been known to take in large quantities. In the past, up until about 12 years ago or so, Fiorinal contained a pain reliever known as phenacitin (which is the “P” in the old Army favorite pain killer, APCs, aspirin, phenacitin and caffeine). And when I was a child and young adult in the military, I got a lot of APCs. Well, phenacitin has been found to cause some kidney damage and has been taken out of all drugs, to my knowledge. Now you know all about phenacitin and my kidneys.

Today we went in for my appointment with my doc, Brian Koester. He went over my blood tests and did a brief exam, checking my throat for thrush (a yeast infection of the throat) and listening to my chest for signs of pneumocystis pneumonia (the pneumocystis organism isn‘t a problem for most normal folks). Immuno-compromised people, like those with HIV or on chemotherapy, are more likely than most folks to get these infections. I was clear for both these problems. I actually take antibiotics intermittently to prevent the pneumonia.

After I was checked, I asked Brian a few questions. Like, is my response to these drugs what he had expected. Answer; “Well, we don’t know, you’re the first patient we’ve had on this regimen. But the response is excellent, regardless.” And, what’s the long term plan, for when/if the disease returns, say, in a year or two. I’ve been looking at all the literature I can find on this disease, and it appears that I’m getting the “cutting edge, gold standard” treatment. From what I can find, there is no other treatment if this fails. I guess that is what Brian thinks, too. His answer was, “Well, there are a lot of things in development that we can look at for monoclonal antibody treatment, or protocols for a possible bone marrow transplant with unrelated matched marrow donations.” In other words, for now there is no follow-up treatment available. But, as they say, “It’s an exciting time to be a patient with CLL!”

So we went to the infusion room and my nurse was Marliss again, the German nurse from Heidelberg. Coincidentally, the guy right next to me, also getting Rituxan, had been in Heidelberg after the war. He was a patient in the 130th Station Hospital, where my dad worked in the early 1950s, but the guy had been there in the mid-1940s when General Patton was a patient there. He said he was on the floor above Patton and could hear him screaming. You may remember that Patton survived all the battles of WW II only to be involved in a traffic accident afterwards. He suffered a broken neck, as I recall, and died in the hospital.. He is buried in Luxembourg near the bodies of thousands of troops lost in the Battle of the Bulge.

We started my infusions at about 11:00 or so. I got my premedication of acetaminophen, cimetidine (Tagamet) and diphenhydramine (Benadryl) before the first drug, the Rituxan. This time I got 1000mg of the Rituxan (another $1500 worth, or so), more than last time since now there is less chance of a bad reaction, and it was run in faster, too. The pre-meds once again blasted me. I was just loopy and tired as soon as I could feel the drugs going in, so I got out my CD player, put in Kent’s collection of music for organ and orchestra, and closed my eyes. The music was perfect for the situation; very relaxing, gentle and, dare I say, mellow. That Kent is amazing; he managed to squeeze 78 1/2 minutes of music onto an 80 minute CD. That’s some pretty close planning, I must say, with an incredibly small amount of wasted disc space.

The Rituxan went in over about 2 1/2 hours, not as long as I had feared. I had no reactions to it either. Unfortunately, the guy behind me was having some reactions to his and his blood pressure kept dropping. They kept having to stop his infusion. He was there when I got there, and was still there when I left.

After we finished the Rituxan, most of which I slept through, we started the fludarabine and cytoxin at the same doses as last time. I took more premeds, the Anzemet and decadron, and started Kent’s disc again. The small studies that are available seem to show a better response rate of the leukemia when the drugs are given together. There appears to be some synergy between the Rituxan and the Fludara, so the effective rate is greater that what would be expected with either drug given alone in a sequential manner on subsequent days. It took about an hour to get those two drugs in, and then we went home. We’ll be giving them together for the next three cycles, though only on day one; days two and three I’ll get just the Fludara and Cytoxin. But, enough of the technical details.


I had intended to get this letter out yesterday evening, but had a headache and was pretty tired. My sinuses are acting up again. After my appointment in August, and all the treatments, I was doing pretty well. But as soon as I finished the treatments the problem came back. My sinus gets plugged up and starts hurting. Frequently this triggers a migraine headache. I tried all day yesterday to get the headache to go away, with all the simple meds, Tylenol, Excedrin, decongestants, etc. But, of course, when you have a migraine what you need most is sleep. I finally gave up and went to bed after taking some real migraine medicine, but my other “duties” interfered with my sleep. Remember, I have to drink and unload three liters of fluids in the twelve hours after my Fludara and Cytoxin. Since my creatinine is a bit up, I was real anxious to make sure that I kept my kidneys well hydrated and flushed out. So, I drank, and drank, and drank. And then I was up every hour or so all night doing my “homework” assignment. So much for sleep. I think I finally got to sleep after 3:00 AM after taking a Percocet for the headache. Oh, yeah, I also spilled a glass of water off the nightstand in the middle of the night, just to further interrupt my sleep, and Kathy’s too.

We went in again today for our noon appointment for today’s chemo infusion, just the Fludara and Cytoxin. These are quick now. We had a little trouble getting the IV in for some reason, however. Marliss started one, but when she tried to advance the catheter it hit a valve and wouldn’t go in. She tried to manipulate it past the valve but ended up infiltrating the IV with the fluids going in under my skin and not in the vein at all. She took the IV out, taped up the puncture and looked for somewhere else to try. Now, I don’t know if she was worried about having missed the IV or if she was intimidated for some reason ‘cause I’m a doc, but after putting on the tourniquet and identifying a suitable vein, she called over one of her colleagues to try to start the IV instead.

Now, most of you are not intimately acquainted with my veins, but I’ll have to say they are GREAT veins. Usually they bulge out even before the tourniquet is put on. The next nurse, Pat, moved the tourniquet up further on my arm and looked at my veins. There are several large veins, but one in the middle of my hand was down on its knees just begging to be pierced with a sharp object. But Pat wanted a challenge. She looked further, finally finding a vein that she could feel, but not see, over on the web near my thumb. Why, you ask? I don’t know. Maybe she wanted to save the really good veins for later in my cancer fighting career.

Anyway, she stuck the needle again and slowly advanced it until she finally found the vein she couldn’t see. But the tip of the needle was just barely in. It ran, though, and that was good enough for me. However, when infusing the drugs it ran quite slowly. I found that if I bent my wrist and held it “just so,” that it would run in quite nicely. So I held my wrist “just so” for about an hour and a half while the infusions went in. Meanwhile I listed to Phil Collins and read more of “The Mirth of America” and, yes, I laughed out loud several times. If you like humor, you should get this book. Thanks again to my sister Deb, who sent it to me.

I also had a couple of visitors during my appointment. One of my colleagues came by to see how I was doing, and Rita, a nurse who used to work in our clinic came by too. Between the visits and the book and music, the time was up in a hurry. We were ready to leave by about 1:30 or so.

So, one more infusion tomorrow, like today’s, and I’ll be finished with round three. Almost halfway done. We’re probably going to add a cycle of Rituxan alone after we finish the standard six cycles. We couldn’t use it at first because of my elevated white count. So I’ll likely be getting something through mid-January.

I didn’t mention something mildly important (to me) in my last letter. I told you that Lou and I had gone to a fish place for our birthdays. The specific reason is that they give you a discount if you are within a few days of your birthday. Well, the older you get, the more you save, at the rate of 1% per year of age. Since I was getting a 56% discount, I went for the usually $35 snow crab and lobster dinner. Great stuff.

Enough for now. I’ll be back in a few days to tell you how the drugs treated me this time around.

Until later,