More side effects from trial

I'm still on the GS-1101 (CAL-101) trial, but I've been having some problems.  I've developed cataracts in both of my eyes.  This can be related to steroid use.  I've been on budesonide for the severe diarrhea I've suffered in the past.  It seemed like the trade off from uncontrolled diarrhea is the development of the cataracts and a resultant need for surgery.  

Cataract surgery is the most common surgery in the US (who knew) so it's a major problem.  But there are definite side effects to the surgery, the most serious one is retinal detachment and the risk of blindness.  I'm at a higher risk for this since I have a strong correction necessary to see clearly.  The cut-off seems to be somewhere above 7.0 diopters ( I hope I have that right).  

So I took myself off the budesonide.  It's taken a while, but the diarrhea has returned with a vengeance.  So now I'm back on the budesonide.  It's a terrible trade off, but what else can I do.

The joys of having CLL

Latest on GS-1101 (CAL-101)

I drove down to Stanford for an appointment with Dr. Coutre yesterday.  I think we were both surprised that my blood numbers looked better than they have been of late.  My WBC is back in the normal range.

I also was subjected to an hour-and-a-half MRI, which showed slight regression of abdominal lymph nodes, which was also a surprise, since I've not noticed any diminution in the size of those nodes.

So we both decided to stay on GS-1101 (CAL-101) for the time being.  This means I'll be on the drug for another two months.  

I do have a puzzling new symptom, though.  I've had some vision changes, which has necessitated new glasses.  I'm requiring a new prescription, which is very strange.  Dr. Coutre has not heard of such a side effect, though he hadn't heard of the diarrhea problem that plagued me for months a year ago.  So I will have to see what will be going on with my eyes.  I did have a consult with the ophthalmologist who could find nothing wrong that would cause these vision changes.  I certainly don't want to ruin my vision, but I am otherwise doing well on GS-1101, so I guess I will just plug along.

Happy Thanksgiving, all!

Failing CAL-101/GS-1101?

I saw Dr. Coutre at Stanford Clinic yesterday, and was dismayed to find out my lymphocyte count has gone up to 20,000.  This is the highest it's been since I started on CAL-101, and may very well be a sign that I am failing the drug.  I think everyone knew this isn't a cure, but I also think that we all hoped I would get a number of years of remission from the drug.  A year and a half doesn't seem that long, in retrospect.

We will follow up with a WBC next month as part of my IVIg.  If there is continued increase in the lymphocyte count, then it is likely I will be pulled from the trial.  That would be a big disappointment, of course, since there is not much out there I would qualify for.  The Bruton's tyrosine kinase inhibitor unfortunately is completely filled, so there would be no room for me.  The other option would be conventional chemotherapy which does not work anymore on me.

So I may be going from a stable situation in which I feel well and am able to live a pretty much normal life to one where CLL is once again front and center.  I know I have done better than many (but not all) and I shouldn't complain, but this indeed is a real blow.

I'll try to stay on the positive side, at least for another month.

I suppose I will go back on the prayer list from my church.  Prayers do help, in my opinion.  I think they were a God-send when I was so sick in the hospital.

Steady as she goes

Nothing much to report.  I go back to see Dr. Kipps in San Diego near the end of the year; I see Dr. Coutre next month.  I will have scans the end of the year, as well. 

My abdominal nodes remain one of the biggest problems I have.  After going down nicely when I started on CAL-101 (GS-1101), they seem to have increased in size since my hospital ordeal at the beginning of the year.  I admit that some of the girth I suffer from is from 'good eats' but most of it is enlarged nodes.

The rest of my nodes are pretty much non-existent.  No matter how hard Dr. Kipps pushes, he can't seem to find much of anything.  I do have some nodes that are palpable, but not many and not very large.  So I am on a steady course as we speak.

Now if I can just get through the political rhetoric for the next few months, I'll be happy.

Not much to report

I saw Dr. Kipps in late July, and he said he was pleased with my current status.  I do have lots of nodes, but they all seem to have shrunk, as far as he could tell based upon a manual manipulation of the nodal areas.  My biggest problem still is the abdominal area, and he couldn't tell much in that region without a scan.  Dr. Coutre wants me to have my next scan at the end of the year.  So we have to get together on a date for that one.  In the meantime, I'll see Dr. Kipps in January, 2013.

So, I supppose no news is good news.

I did ask Dr. Kipps about the ROR vaccine that would be created to perhaps 'cure' CLL.  He said that they are looking for a 2014 start date for a trial, since they have to jump through a lot of hoops with the FDA and other organizations.  You know, 'first do no harm'.  So that is good news, though I wish they would start sooner than two years from now.  But I guess we must be patient...

Cruise Control

I went down to Stanford last week for my latest appointment with Dr. Coutre.  The lab numbers were not in yet (even though I got there over an hour early!), so I don't know how the lab is going to assess my progress or lack thereof.  (Is it progress if the numbers progress to a worse level, or is it progress if my counts are stable and/or improved.  I vote for the latter.)

From a purely subjective standpoint, I feel fine and am able to do pretty much what I want physically.  I think it has taken me about six months to pretty much fully recover from my hospital stays.  That's a long time, and thinking back, I was pretty much wiped out in January and February.  I couldn't drive, I couldn't make it to the end of the street even with a cane.  Now I am driving to Stanford and elsewhere, I did some roof repairs that necessitated me carrying shingles up the ladder, and ripping off damaged shingles, and even using new plywood to replaced some damaged sections.  (The whole problem started unnoticed some time ago when I lost a single shingle to a wind storm, and didn't notice it.)

My attitude to the lack of numbers from Stanford is that since I've not heard from Dr. Coutre, all's pretty much well.  At least I like to think so.  I see him in a month.  I'll repeat my scans in December or January.

In addition, I'll see Dr. Kipps next month in San Diego.  I'll get to fly the no-frills Southwest, which has the only non-stop from Sacramento to San Diego.  I hope things go well there.  Dr. Kipps is more of a worrier than Dr. Coutre, so I expect a somber analysis from Kipps.  But I will get to pump him on new treatments.  Of course the one trial I'm interested in apart from CAL-101/GS-1101 is a trial educating the T-lymphocytes to attack and destroy CLL cells.  A cure would be very, very nice.  To get back to the business of living without having to worry about my immune system.

Perhaps an impossible dream for me, but one can only hope, can't one?

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.

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.

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.

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?)

My Marrow has been "Chewed Up" by FCR

I saw a CLL doctor for yet another opinion, this time a doc at Stanford. We discussed my situation, especially in light of Dr. Kipps' recommendation that I start a search for a donor for a much-feared stem cell transplant (the survival figures are not as high as I'd like).

I had to wait over an hour to see him, which seems to be par for the course for busy CLL types. I gave a brief rundown of my history, and the fact that I've had four treatments; HDMP+R, ISF-35 (direct nodal injection), the idiotic FCR, and flavopiridol. According to his labs, the slight improvement in my numbers noted at UC Davis has disappeared, but I think some of that can be ascribed to different labs. I like Davis' lab, because I always have better numbers there.

He said there were two drugs in trials at Stanford that he likes for CLL: Cal-101 and another drug that he didn't even mention the name/number of. Something like PCI something or another. I'd pass the name along, but he didn't pass it along to me. (Searching the web I do find two candidates: PCI-32765 & PCI-45292, both Bruton's Tyrosine Kinase inhibitors.)

We then talked about why my marrow has never recovered. The doc said my marrow was 'chewed up' by FCR. I asked if there was anything I could do to make it better. He said, 'no'. He also said, 'they never mention that when they publish glowing reports about FCR.'

So, in addition to a heightened risk for Richter's tranformation, and myelodysplastic syndrome, our non-friend FCR can 'chew up' your marrow. Wonderful. Apparently, FCR has left me with a permanently scarred and chewed up marrow. Sweet!

The doc is going to send me the protocol for Cal-101, which he seems to like a lot. It apparently doesn't give many people a complete remission, but it does help shrink swollen lymph nodes.

Besides my chewed up and spit out marrow, the abdominal nodes may or may not be making a comeback, so this might work well. We will see. I see Dr. Kipps soon as well. And, joy, I get another bone marrow biopsy! That will make number 16. I wonder what the record is? I wonder if I have any marrow left in my hip after all of the sucking and drilling?