An Update

I went to see Dr. Coutre at Stanford at mid-month.  No real changes.  Back on CAL-101 (GS-1101) after being off of it with terrible diarrhea problems.  Now back on for three weeks or so, with steroids to calm the intestines.  So far, so good.

I did the usual MRI, two hours for chest, abdomen, and pelvis.  One hour on different day for neck.  What an ordeal!  My back bothers me after about 30 minutes, so I'm starting to take some pain medication prior to being in the 'tube'.  I have to stay overnight in order to do the tests, so it gets expensive staying in a hotel in Redwood City, just north of the clinic at Stanford.  Parking is a problem in the parking garage, too, though this time I didn't have any trouble, since I got there very early.

I had company for part of the day.  My neck MRI was at 8:30, and my appointment with Coutre was at 3:30, so I had several hours.  I had some lunch in the car.  A scrub jay was out looking for some food, so I obliged him by tossing him some cookie bits.  He probably had a nest to feed, so I went back in the facility, and purchased a small bag of almonds.  He seemed very happy to have that as a food for his nest (?).  It was entertaining.

Still in holding pattern.  Some nodes went down.  Spleen normal sized now.  Some slight growth in chest area.  So I'm still on the drug and see Coutre in July. 

An island of stability.  That's what scientists call putative heavy elements (say, 114) that may last for minutes...or years.  That's sort of the feeling I'm having right now with my CLL. 

I did have blood work done on April 20 and they were excellent.  Other than a minor departure from the norm on my hemoglobin, my blood numbers are achingly boring.  Everything else, including WBC and platelets are well within normal range.  Platelets have been a problem for me for years...dropping as low at the 60s at several points.  And the WBC have been terribly low during my treatment with flavopiridol.

So what do I do now?  Do I gamble more on CAL-101?  Do I go down to Stanford and UC San Diego to see what else might be available that doesn't cause so much gastric mayhem? 

Don't know.  Will see.  Let the docs look me over. 

I will press hard for news and/or enrollment in the 'cure' that involves modified T cells.  I deserve to be free of this disease!  13 and one half years of CLL is long enough!!! 

What can we do to get closer to this putative cure?  About the only thing is to follow Dr. Keating's suggestion, and donate tons of money!!!  His group the CLL Global Research Foundation (cllglobal.org) has given quite a bit of money away in its existence. And Dr. Kipps' Blood Cancer Research Fund (bcrf.ucsd.edu) is doing the same.

Meanwhile, I am revelling in my 'boring' blood numbers.  Others in the CAL-101 trial without the diarrhea problem must be doing well as well, though I don't see too many posts on CAL-101 of late.

Night sweats

I'm beginning to get a bit sweaty at night, not a good sign. However, they are not drenching night sweats (which I have had years ago; they are terribly uncomfortable.

I view this as not a good sign, but since I'm not treating my CLL now, I see no solution to doing what I am doing. Still off CAL-101 because of the diarrhea. I am much better now, but the frequent and urgent diarrhea is in many ways worse than the disease.

Don't think this is a problem with many folks, but it is with me.

An update

I have not posted in many months; for that I apologize. It has been a terribly difficult period, and I just have not felt like posting, not to mention that I have only unfortunate news to report.

I have been in the hospital more than I have been out, though my last admission was in early February. I came close to packing it in in early January, when I was taken by ambulance (I remember nothing of this, but I have a hefty bill from Sac Fire Department) to the hospital with a raging fever.

As far as CAL-101 goes, I'm off the drug at present. I have had a flare up again of the diarrhea, to the point were I was in the bathroom 50 times in one day. One cannot live like that; literally, as my potassium dropped to dangerous levels.

The good news is that I seem to have some residual benefit from CAL-101. I've been off the drug for three weeks or so, and I am still doing OK. My abdominal nodes are back up, and that is unfortunate, but they appear to not be giving me lots of problems. I am also sweating some at night, but that doesn't wake me up, so I don't know if that qualifies as drenching night sweats (I don't think so). It's not a good sign, but I can live with it.

I will see Dr. Coutre at the end of the month to see where we go from here. Off the drug, my diarrhea has abated, but not totally. He believes that I've developed colitis, perhaps separate from the drug. All I know is that I'm 90% OK on the diarrhea front, but it's got to be 100% or I'm still pretty much home bound.

I note with sadness the passing of Dr. Hamblin. He and I sparred on a number of occasions and on a number of topics, but his knowledge and his expertise was without question. He is terribly missed already. He could explain complex issues in a way even I could understand it.

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.