Reports of My Death Have Only Been Slightly Exaggerated

I've been back in the hospital with more problems. To make a long, terrible, miserable story short, I'm off the CAL-101 and on prednisone. The operating theory from Dr. Coutre is that I have coloitis, probably caused by CAL-101.

However, as of Friday the 18th, I believe (dates slip away when you are terribly ill), I was released from UC Davis because there was nothing more they could do for me that I couldn't try to do at home.

I am now not undergoing any treatment for my rapidly progressing CLL. I feel poorly and am confined to bed rest. I'm trying to get out and get some little bit of exercise, but incredibly, it has been very difficult to walk more than 100 feet without getting winded and having to sit down. I went to the local grocery store yesterday, and I had to have the bag lady help me out with a tiny amount of food. I was exhausted. By the time I drove home, I couldn't get out of the car without resting for a few minutes. My heart seems to have been weakened by this ordeal.

We are trying to get on some other desperation trial to keep me alive long enough until the ROR clinical trial starts up in probably a year or so. The odds are long, that's for sure.

No sign of transformation so far, thank the Lord.

My quality of life is poor, but I must admit I can now sit at the computer for a half-hour at a time. Paying bills and everything else is now the purview of my wife and the power of attorney for financial affairs. Thank God I took care of that several years ago!

And thank God for caregivers such as my wife. I would truly not be able to keep myself, or my pets, alive without her. I say prayers for her as well as for myself. Little did I know how dependent I am on others.

Back out of Last Hosptial Stay

I spent the past week at UC Davis. Aggie college that treats more cows than people.

To say I was unhappy with the level of care I received would be an understatement. My questions went unanswered, I never did see my oncologist, I had three crazy roommates (one Mexican gangbanger type threatened me when I asked that his coughing and sneezing grandchild wear a mask).

My pain was never adequately controlled even though I complained about it. There was no mention of scans for my small intestines, even though they brought it up in the first place.

And to top that off, the resident that was put in charge of my case (Dr. Beelzebub) tried to blackmail me into have an unnecessary procedure so he could practice on me before he's let me go home. And then they examined a biopsy for cancer, and when none were found there (they may indeed be elsewhere) he declared a this excellent news to be no better than a 'mixed bag'. I has what the down side was and he said because they didn't know what to do with me.

Earlier, this fresh resident he told me in in best, pump-out-chest, brining his height to all of 5-8, that I had one month to live.

I told him I didn't want to ever be seen my him, ever again. He reported my impertant attitude to his superviors, who couldn't understand why anyone would feel this way.

Dr. Beelzebub would make a fine vet, perhaps, or a pest control inspector. Wait! scratch the vet..I wouldn't want a vet like that anywhere near my pet.

As far as things go, no closer to understanding what is going on now that before. Since I'm home, my pain is adequately controlled, I'm waiting to see Kipps again.

I'm beginning to see that Churchill was right about the Soviet Union: 'a riddle wrapped in a mystery inside an enigma.'

Large Diffuse B Cell Lymphoma

Transformation to large diffuse b-cell lymphoma. It's particularly troubling that there is no money for research into this affliction that affects so many CLL patients, especially since the risk is increased significantly with the use of FCR and other drug combinations that combine alkylating agents with purine analogs. This provides a potent mutagenic punch to the unstable CLL genome.

Contrary to Dr. Hamblin's glowing endorsement of FCR, and MD Anderson's love affair with the dangerous drug combination, stay away from this unless there is no other option. (Dr. Hamblin says anyone who has a serious side effect such as Richter's just 'gets the sticky end of the lollipop' a description I find insultive, dismissive, and arrogant.

For me, it's too late. but for those out there who are facing treatment decisions, choose something else. Especially with the prospect of an actual cure dangling tantalizingly in your faces.

Major, Significant Change for the Worse

I am suddenly very, very ill. Over the past five weeks, I've gone from feeling pretty darn well, to being essentially bedridden.

My problem is in my abdomen. I've been to the emergency department twice, had an MRI, three stool cultures, multiple blood tests and blood cultures to look for blood infection. I've seen 12 doctors in total. They have no idea what has happened to me.

I do have some ideas. Based upon my rapid decline, one naturally thinks of Richter's Transformation. I am a prime candidate because I foolishly listened to Dr. Weirda and had four cycles of FCR. The combination of a purine analog (fludarabine) with a potent alkylating agent, is a recipe for disaster. This ups the risk of Richter's, as well as secondary myelodysplastic syndrome, which is quickly fatal.

Based upon troubling new symptoms, other possibilities must be considered. The most likely problem based on these new symptoms involves the pancreas. Pancreatic cancer, unfortunately, comes up all of the time when I analyze my overt symptoms.

I will say it could be curable, whatever it is, but it doesn't feel that way. I think many, if not most of us, have a sixth sense when something is very, very serious. That's where I am at right now.

I am going down to UCSD next week to have more of a work-up, though not too many people seem willing to go very far to get this done soon. So what I am thinking of doing, based on advice from a community gastroenterologist here in Sacramento, is to get everything looked at, not just a scan. I'm thinking of going to the emergency room right after (or before) the colonoscopy, and see if I can get admitted.

That's really the best option. The docs here in Sacramento revel that they don' think much of the medical community in this city, and I have to agree with them. That's why I go out of town for pretty much all of my cancer care.

To be honest, I will do my best to keep everyone posted as to my condition, but I may not want to share things about my body and the developments in the case.

I have no idea what this means for the CAL-101 trial. It does not seem possible that that drug could be responsible for my pain and anguish, but I guess we may have to look at everything if something doesn't pop up soon, which I think will come next Wednesday.

I do belong to a church, and the kind folks are praying for me. They will be a support network for my wife once I depart this failing planet. And she will be very well provided for once I am gone.

I'd like to make it to Christmas. We will see.

Steve Job's death

The passing of Steve Jobs has affected me more than I thought. It's not that I am an Apple devotee; far from it. I own no Apple products, and I have long believed that they were over-priced. That's not why his passing has affected me.

Here was a man with more money than Midas, yet he could not beat cancer. He had the best care in the world, one would assume. He could have access to drugs and treatments that no one else could have, simply because he could have bought the drug company with promising products, outright. Yet, he could not beat his cancer.

What chance is there for the rest of us? The one who have to depend on government health care, or health insurance that is cutting back services in order to pay for millions more on the government dole. We all know it's coming, and we all know these cutbacks are being implemented as we speak. (For example, Stanford cannot come to agreement with Blue Cross because they are instituting cuts in reimbursements.)

It is a dark period in cancer research. The number of drugs approved for cancer use is declining. Vulture lawyers are trolling for patients who may, somehow, blame some past use of a drug for some unlikely outcome. Drug development costs are rising. The FDA has instituted a 'go slow' policy so that they aren't blamed for problems with drugs that come up years after approval of the drug.

Already, promising drugs for CLL like flavopiridol (Alvocidib) are being dropped because the CLL population is so small. One can only expect further degradations of health care as time goes on, and as Medicare comes under greater assault by the millions of Baby Boomers (such as me) begin to retire. As the economy continues to falter, income to the federal government, including Medicare, drops.

It's a bleak time indeed. And nothing illustrates that more than the passing of Steve Jobs. The world may have lost a visionary, but it also lost a fellow cancer fighter; one of us.

Liver numbers have gone down on CAL-101

The good news is that my liver numbers, while still abnormal, are down considerably after I've reduced the dose of my CAL-101 from 3oo mg per day to 200.

The bad news is that my blood numbers are starting to deteriorate. My platelets have fallen drastically from 140,000 to 77,000. Dr. Kipps is worried and wants a new bone marrow biopsy. I told him I had one in the hospital last month. I told him I'd send him a copy (or rather, I'd ask UC Davis to send him the results). When I called Davis and asked them to fax a copy to Dr. Kipps, they offered to mail a copy to me. I said OK.

I read through the report and it's troubling. I have converted from about 11% 11q del to about 70%. Curiously, the rest of the CLL cells are positive for 13q14, which I've never seen in my reports before.

The worst part is that my cells are showing signs of 'clonal evolution' towards MDS.

The biggest mistake in my life (doing FCR based on glowing recommendation of Dr. Weirda) is perhaps coming back to haunt me. MDS is a killer, and should prevent most people from taking FCR, unless there are no other options. There were options for me, and I wish I had taken them.

In the era of CAL-101 and other kinase inhibitors, CLL may be a much more manageable disease. The CLL patient may be treated more like the chronic disease patient he is, rather than hitting him with the big guns.

Taking FCR may force mutations in the CLL cells that lead to terrible consequences. I know that Dr. Hamblin snarkily said that I 'just got the gummy side of the lollipop stick', but that flippant remark belies the terrible outcome for many FCR patients, who will die much earlier than they would if they eschewed that dangerous drug combination.

Back on CAL-101, but liver is acting up again

I originally went on CAL-101 in late January, 2011. I did fine for quite some time, until April 2011. My liver enzyme numbers went up, and I was taken off the drug. I had major problems when I went off the drug. Something was going on, perhaps a sudden expansion of the lymph nodes that began pressing against internal organs, or perhaps my small or large colon. I was in a lot of pain. Luckily that went away, but I felt poorly for the next six weeks. My liver numbers were stubbornly high.

Then I went into the hospital with zero neutrophils. I was there for five days.

I was able to go back on CAL-101, but at a reduced dose. I've been on the reduced dose for about three weeks.

Unfortunately, my liver is acting up again, and my white count has fallen again, as have my neutrophils. It may be that I'll have to go off CAL-101 because of side effects of the drug, and because my blood numbers are going in the wrong direction.

The saga never ends, apparently.

In, and out, of the hospital

A week and a half ago, I was beset by vomiting and nausea. I was initially sick to my stomach. My wife helpfully suggested that if I just throw up, then it would be over, and I could get back to sleep.

Big mistake! I did force myself to throw up, but then I couldn't stop. I also couldn't keep even a tiny sip of water down. I would vomit more fluids than I was taking in. Obviously, that is dangerous. I was rapidly becoming dehydrated. So at 7 am I went to the hospital's emergency department.

Well, they solved the immediate problem by giving me fluids intravenously, which I expected, and by giving me IV Zofran and Atavin, which makes sense, and then by admitting me, which I did not expect, nor want. They did so because my absolute neutrophil count was at zero, again.

This was a surprise and a disappointment, especially since I had a neulasta shot a week before that. It apparently made no difference, for reasons I will discuss later.

So I spent the next five days in the hospital. This being the US, I had just one roommate. (In the UK, there are up to six patients to a room, even those dying of cancer or heart disease.) He had had pneumonia for three months, and was in the hospital for those three months. He was released while I was there, and I'm sure he was happy he got out.

After my roommate left, I had the room to myself, which was nice. No sharing of the bathroom, nor sharing his germs with me, especially with no neutrophils.

After some manipulation, my counts did begin to rise, sufficient to get me out of the joint. I never really exhibited any signs of illness after that first terrible day. My lungs were clear, apparently, with no fluid in them. But I did get Netflix to work, and I watched some cool History channel programs on military history. Nice. But boring.

Except...for the bone marrow biopsy they wanted to do. Actually, the two they ended up doing.

UC Davis, where I was, is a 'teaching hospital'. Meaning that they take people off the street, give them a few lectures, and then a scalpel, and turn them loose on unsuspecting patients.

The first biopsy was excruciatingly painful. I mean this must be what operations were like a thousand years ago, except without the alcohol making you drunk enough to deal with the pain. And what pain! Apparently this woman (girl) junior doctor decided to go into my bone from weird place (the real doctor told me that he 'wouldn't have chosen that spot to do the biopsy', which is medical-speak for 'what the hell was this woman (girl) doing????). All I know was I was screaming in pain, telling the woman (girl) that I couldn't stand the pain. She then said, and I quote, they could go get someone who had done biopsies before. I said, of course, THEN DO IT!!!

This new woman (girl) did an OK job, though it was still painful.

These two biopsies made number 19 and 20. Is this some sort of record? The kind of record you don't want to have, ever?

My marrow turned out OK. I just have CLL. That's a big relief!

So, they let me go.

Now, what about my neutrophils? Did I have a zero count? How could I survive without being sick if I had no neutrophils???

My neutrophils may be hiding in the tissues, as Dr. Kipps has surmised. The CAL-101 pushes lymphocytes out of the lymph nodes and back into circulation. In my situation, the neutrophils are there, and are being produced (as the biopsy shows), but they just aren't getting into circulation in decent numbers. But, they apparently are there. I don't understand it, and I don't know if anyone understands what is going on, really.

It IS troubling that the Neulasta did not raise my neutrophil levels within the week. Perhaps it was responsible for boosting the neutrophil counts while in the hospital. Perhaps it was the niacinamide I took (though that didn't work to increase the totals in the week leading up to the hospitalization). Things aren't all peachy in the health department, not by a long-shot.

But...I am out of the hospital and doing OK.

And...I'm back on CAL-101! That will ensure (at least for a while) that my WBC increases as the CLL and other lymphocytes are booted out of their happy homes in the lymph nodes, where they grow in happy little colonies, cheerfully killing their host.

I'm on a lower dose. I'm saying my prayers that my counts hold, and my liver numbers stay on track. It took a while for Stanford to get to this point (original estimate, one week off CAL-101; it took me about six weeks in actuality to get back on the drug).

Next step, GET CAL-101 APPROVED so that everyone can benefit from this drug. I think it is keeping me relatively healthy. I just hope it continues. Dr. Coutre has been very helpful in getting me on this drug, and keeping me on it. Thanks!

Now, crashing neutrophils

As I tell my wife, if it's not one thing, it's another. Seriously. I have a new health complaint everyday. Sometimes it's a sore foot. Next day, a painful back. The next, pain in my abdominal nodes. And the next, a headache.

Occasionally, I have a good day. That is a bad thing. If I go through the day, and say to myself, you know, I had a pretty good day! In fact, I feel fine! How nice!

That means I will be in the hospital the next day. No good day goes unpunished for me. I'm serious. This ALWAYS happens. ALWAYS. Without exception. EVER.

I had a good weekend. I felt kind of tired Saturday, but I got the truck out and finally clean out the pile of stuff the gutter guys left when they re-did my gutters. I told them I'd dispose of things if I could get a cheaper price.

Sunday, another good day. Church was nice. By Sunday afternoon, I thought maybe I had crossed the creek. My painful nodes were history. My fever was over and done with. I had lots of energy and got lots done.

Never tempt fate.

The next day, I got a copy of my lab results from Friday. They show 2% neutrophils. That's not good when your WBC is 4.4. Doing the math, that means my absolute neutrophil count is about 100. Way below the 500 cut-off for serious neutropenia. It's at the same level that I had when I was in the hospital with a 105 degree fever. It's tied for the worst I've every had.

I'm off CAL-101, and I think they are trying to ditch me from the trial forever. Stanford wants me to tell them that I've progressed on CAL-101, but I don't know if that's true. I know this latest blood work suggests that my CLL has skyrocketed, but I've been off CAL-101 for almost three weeks.

Listen to your body. If it is telling you that you are doing well, you are in big trouble.

Off CAL-101 and suffering

Two weeks ago, I went to Stanford for a routine medical appointment. Dr. Coutre was not there, so I saw another doctor.

After the three-hour drive home, I got a message from the clinical trial coordinator that my liver enzymes were elevated, and I must stop taking CAL-101. The coordinator explained that this is not uncommon, and most everyone who has elevated liver enzymes goes back on the drug at a lower dose. (I've been on 150 mg, twice a day.)

Well, it wasn't that simple. My lymph nodes started increasing in size in a couple of days. (CAL-101 works very, very fast in reducing the nodes; it apparently works just as fast in the opposite direction.)

Anyway, by Saturday night, I was in agony. My lymph nodes apparently started pressing on this organ and that. I also spiked a fever. So I went to the ED. They released me after prescribing Levaquin (sp?). By Monday night, I was in poor shape again, and went back to the ED. They did not admit me (yay!!!), and I went home.

I had my liver enzymes tested after one week. The enzymes had not gone down to a normal level.

Meanwhile, two weeks after going off CAL-101, I am very unhappy. I have massive nodes again, I have significant fatigue (starting on Wednesday) even though I am sleeping well for about seven hours a night, which is normal for me. The sleep does not seem to refresh me.

I've faxed the blood work to UCSD, Dr. Kipps' nurse. That was a week ago. Silence.

I did get a call from Dr. Coutre yesterday, which was nice. He wants me to wait several more weeks and then evaluate what has happened to me.

I am very disappointed, of course. My lymph nodes went down fast, and stayed down. I felt great. My blood numbers were OK, and things seemed to be going as I had expected. Now, I am in a bad place.

I think the ideal would be to stay on CAL-101 at a lower dose. I don't know if that will be offered.

So, I'm back in the CLL misery.

Flavopiridol, One Year Later

I went down to San Diego for my one year check-up after my eight-month trial with flavopiridol (Alvocidib).

I had a very good response to the flavopiridol. I was hospitalized overnight for the first two courses, to make sure my potassium levels did not go overboard as a result of tumor lysis syndrome (although the kidneys can be damaged from the products of CLL cell necrosis, tumor lysis is a nice thing, since it means the evil CLL cells are blown apart by flavopiridol).

My rock-hard abdominal lymph nodes gradually softened and melted away using the drug. This was accomplished by weekly infusions in San Diego, for four weeks in a row, with a two-week holiday in between cycles.

As I've noted here, the drug was not an easy drug to take. The main problem was with the urgent diarrhea that followed a hour or so after the drug, and that lasted through the night. The other side effects I noted were general malaise, about two hours of abdominal cramping and pain, and a fatigue that lasted a few days.

The other, perhaps more serious side effect, was the neutropenia that accompanied the drug. I had to have either a Neupogen series, or a Neulasta shot about once every couple of months. Of course that may have been also linked to my disastrous dalliance with the hated FCR.

If they could develop a version of the drug that didn't have the diarrhea problem, they'd have a winner. Or if it could be administered locally, so I could get home and sleep off the problem, it would be better. (Obviously if the drug was approved, this latter condition could be met.)

My response lasted about the nine month average noted in previous patients. My feeling is that perhaps Flavo could be given for six months or so (since I didn't note any more lymph node softening or reduction in size after that), and then monthly. It's an unpleasant drug, but if it could keep the CLL at bay, I'd gladly do a monthly 'maintenance' dose.

Of course I have no idea if that would work, but that might be a winning idea, even with the drawbacks. Flavopiridol is an excellent drug, it works just as well for a second go-around (rare in any cancer drug), and it has few (but annoying) side effects.

I wonder about its fate as a approved drug. It is effective in over 50% of CLL patients, and in patients who respond, the outcomes are good. But it isn't a cure, nor a lasting treatment, unless it could be given as a maintenance drug, perhaps.

Mixed Results

I'm through with the rituximab infusions that have accompanied the CAL-101 daily pills (150 mg twice a day).

CAL-101 pushed many CLL cells out of the lymph nodes and into the blood. My WBC which has been hovering around 2.1 after a disastrous bout with FCR, went up to about 47,000. It has dropped to 24,000, where it has stubbornly stayed.

I've also had increasing fatigue and a few bouts of day sweats, both of which I associate with CLL progression.

We know that CAL-101 is not a cure. A recent paper that will be presented at ASCO paints a dismal picture of the drug, with only a 33% response rate. It shows that many people drop out of the trial after disease progression. And lymph nodes decreased by only 50%, which means that CLL, which grows primarily in the nodes, is still present in large numbers.

It may be that drug resistance to CAL-101 is more common than we had all hoped.

We are all hoping for a solid treatment that is easy to tolerate and keeps the CLL at bay, if not curing the terrible disease.

As it stands now, it doesn't look as though CAL-101 will be that drug, at least in the population of heavily pre-treated patients such as myself. Perhaps it will do better in untreated patients.

I must admit that it will be great if it works extremely well in untreated patients, but not well in others. It would be bittersweet for us who have been through the mill with CLL.

I've often wondered about the elation of CML patients (chronic myeloid leukemia) who saw the miracle treatment of Gleevic and related drugs, but failed to respond themselves. The elation, and then the crushing disappointment must have been terrible for them.

For now, my lymph nodes seem stable.

CAL-101... A week later

I had my second infusion of rituximab yesterday at Stanford. I'm happy to report that the infusion went well; no vomiting and no chills, as happened a week ago. My GERD is back; I assume this is due to the vomiting and/or the rituximab infusion.

My blood numbers were interesting. Since my disastrous bout with FCR, my counts have been very low, with the WBC ranging from 2100 to 2700 or so. This time, my white count is over 44,000. This fits with what I've learned about CAL-101, and also fits with my sudden and unexpected shrinking of my lymph nodes. The thinking is that this kinase somehow pushes CLL cells out of the lymph nodes and into the circulatory system, where it can be detected by a simple blood draw.

The rest of the numbers are about what I've been living with for the past few years. My hemoglobin count is a bit lower, from the high 12s to the high 11s. My platelets, though, are much higher. They've been hanging around the 90 neighborhood; now they are over 140, and in the normal range. This is the first time that's happened in years and years. In fact, I can't remember when it was in the normal range.

My absolute lymphocyte count is high, as one can imagine. My absolute neutrophil count is also up substantially, which is very nice. Dr. Kipps has been puzzled by the low neutrophil counts over the past two years, which have nevertheless not led to a single serious infection. He thought that maybe the neutrophils were 'hiding out' in the tissues somewhere. It appears that he was right.

I am taking 150 mg of CAL-101 twice a day since Wednesday of last week. It's not a difficult thing to remember, and I'm home in the morning and evening. I'm back on acyclovir and Septra, the first to forestall herpes infections, and the second to help prevent bacterial infection, primarily in the lungs.

I'm carrying on my normal activities, which include having a sewer and water line replaced at my rental house, and doing some painting and other minor repairs. I'm trying to stay away from sick people, crowds, and soil fungus.

So far, so good.

Surprising Results

I took my first dose of CAL-101 on Wednesday at 1:15 pm. I then had my rituximab infusion, which I covered in my previous post.

I didn't write yesterday about my surprising results from CAL-101. Thursday morning, when I woke up, I noticed my abdomen seemed noticeably smaller. Hmmm, I thought. This seems very sudden of a response. Dr. Coutre told me that I would experience results quickly, within the first week, but in 18 hours? This seems on par with flavopiridol, which has a tremendously fast and potent kill effect, so much so that one is hospitalized to keep an eye on one's potassium level, so it doesn't get out of hand and destroy one's kidneys (one of the first patients on flavopiridol (Alvocidib) died from acute renal failure in Dr. Byrd's study).

I'm not sure what is going on in my potassium level, but I am staying well hydrated just to be on the safe side. And I've not heard of anyone dying so far on a CAL-101 study, so that's reassuring. (However, one must realize this is a clinical trial, and sometimes significant side effects are found long after the drug has been used in patients.)

This morning, my gut is smaller still. Amazing. I would never have believed it. It's like magic. It's like I've had liposuction on my nodes.

I must say that my other enlarged nodes are not following quite the same path. Perhaps it works on massive nodes more than slightly enlarged nodes.

Of course, time will tell and I know this is not a cure. But I wonder if CAL-101 could be used in emergency situations when lymph nodes get out of control and start impinging upon organs.

I have recovered pretty much from the unpleasantness of Wednesday's rituximab infusion. I am constipated, though, something that rituximab does to me, that they don't tell you about. (In my first go-around with rituximab, I was so constipated I thought I might be plugged up forever. It was terrible. I used a stool softener this time, though obviously not quite enough.)

Well, I must say that CAL-101 works unlike what I expected. And it's illustrated that much of my gut was enlarged lymph nodes, though they have never gotten as bad as they were before flavopiridol. Flavopiridol was what I needed when I took it a year and a half ago. It was more troublesome than CAL-101 is so far (we will see what the future brings), but I was pretty bad off. And the fact that Dr. Kipps had that trial was fantastic.

CAL-101

I have made the cut, I guess you could call it; I'm now in the Stanford CAL-101 trial, combined with rituximab.

This is a trial of weekly rituximab infusions, for eight weeks, combined with 150 mg of CAL-101 twice a day. The CAL tablets come in a prescription bottle, with a seal and, yes, even cotton at the top of the bottle. The nurse said that they have a drug company bottle the CAL for Calistoga.

I went in for imaging on Tuesday and Wednesday of this week; I had the CAL that afternoon, followed by 375 mg/m2 (the usual dose). I've had seven rituximab infusions before, with no problems.

This time was different. I don't know if it was the long day (up at 5:30 to get the MRI by 7:00), the MRI contrast (I was in that darn machine for over an hour), the CAL, or what, but at the 7/8 mark, I started to get nauseated. Yep, I threw up my day's gorp trail mix, bananas, and Gatorade is a disgusting mix. Two sets of multiple vomiting episodes. The first I didn't quite make it to the bathroom. I tried to hold it, but dragging a IV pole along for the ride didn't help. (I'm sorry, Ms. Housekeeper. I really am.)

I felt pretty rotten. I also got a bit chilled, but my blood pressure and temperature held at the normal level. I tried to tell the nurse practitioner this, but she was very Nurse Ratchet about the whole thing and stopped the infusion. I told her I didn't feel good and wanted to go home (home being a three hour drive). We compromised with her re-starting the infusion, and me promising to stay the night (at another $112) in super-expensive Palo Alto. (BTW, near Stanford, the lodging is even more expensive than La Jolla!)

The nurses made the reservation for me, which was really nice. I'm sure my green complexion motivated them, and since it was after 8 pm, they wanted to go home as badly as I did.

I got to the motel, locked the door, turned the heater on full blast, and promptly fell into a very deep sleep for five hours. I even fell asleep before I could floss and brush my teeth.

I felt much better when I awoke, though I had a splitting headache. That vanished by late morning. I putted around the motel (actually I watched an episode of The Sopranos. I've never seen the program, because I'm very put off by violence). This was on USA or some other network, so some of the violence was cut out. Still more violent than I wanted, so I changed the channel.

It's late evening, and I feel OK. However, with rituximab, I now need to be extra careful about avoiding infection. My numbers have been OK the past six months or so, and I've gotten out of the habit of being really vigilant. That has to change. Bummer.

Intermittent Problems

I've been doing OK the last few months, but I've noted an increasing sense of fullness in my upper abdomen. I sense the CLL is growing again in my gut. Not good. Plus I've had an occasional problem with nausea and other gut-related maladies (indigestion, GERD, and diarrhea).

I see Dr. Kipps later this month. He indicated to me in September that he wanted to keep a close eye on the lymph nodes, but concluded that I didn't need treatment at that point. My last appointment was in late November, and he felt the same way.

Options include Mozobil plus rituximab, CAL-101 plus rituximab, or revlimid with rituximab. We will see.

Oh, by the way, I've had my 17th bone marrow biopsy. Even with percocet, it was still painful. I wish things were less painful. Interestingly, my blood pressure went from 118/60 to 135/70 just before the procedure. Not surprising, since I've had lots of pain before.

Another New Year

As one gets older, it seems that the passing of the year goes by faster and faster, doesn't it? My wife and I stayed home. The weather being wet and cold, the noise level for the celebration in the neighborhood was a bit subdued this year, though that isn't anything I'm complaining about.

I have been having some increase in symptoms the last week. I've had a couple of days of feeling pretty full, which must mean the nodes are growing again. So, nine months after the end of my eight months of treatment with flavopiridol, I am going to need more treatment.

I did go to Stanford and met with Dr. Coutre regarding a CAL-101 trial, this time with rituximab. That was in September. One concern I had was having a CT scan as part of the trial, which I won't do unless I'm in immediate danger of dying. He assured me that he could substitute an MRI, which is less dangerous for the patient.

Well, since then I did sign up for the trail, but the trial coordinator, Michelle, said the MRI is off the table. She did want me to do the three-hour drive to meet with Dr. Coutre again, but I told her I'd like to avoid that if possible. I was down there just a couple of months ago.

She was inflexible, and said she talked with Dr. Coutre, and that he has changed his mind, or perhaps the drug company is now inflexible about the scanning. Too bad. I told her to give up my space on the trial to someone who doesn't mind being irradiated with a lifetime's worth of radiation.

So, I have to resign myself to not trying one of the new 'great' drugs. And of course it will be another four or five years before the drug is approved, if it is.

I wish I had not placed my hopes in CAL-101. (Besides, the response rate is only about 50% anyway, so it may not have even worked. And that I would have had a series of CT scans?)