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 colonitis, 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 filthy grandchild wear a mask).

My pay 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.