Steady as she goes

Saw Dr. Kipps on the 19th. My CLL is holding steady. My lymph nodes, which popped up a bit before the last visit in September, are now about the same size. Obviously I still have CLL, and it still is active, but luckily it is behaving itself, and not creating too many problems now. (Actually, not any problems that I can see. My energy level is back up to where it was before flavopiridol, and I've not had any infections or other complications. So I now have a six-week reprieve.

Counts are still terrible because of my disastrous dalliance with FCR. My marrow is permanently ruined. As bad as that is, it also limits my choice of further treatment. Counts have to high enough (especially neutrophils) to successfully sign up for clinical trials.

I do have a minor ear infection that I'm getting antibiotics for. One of the many annoyances (let it stay minor!!!) that come with CLL. You just can't fight off infections well.

The past month has been a good one, for me.

Wife in Hospital in Critical Condition

My wife is in the hospital, in critical condition, with severe asthma. She's in a medically-induced coma and on a ventilator. This is the fourth time this has happened in the past five years.

She's stable with her most serious form of asthma most of the time, except when she comes down with a cold. Then it's a fight to get her through it. About half the time, she can throw it off without going to the emergency department, but sometimes she can't. This is one of the latter times.

It's especially difficult when one couple has both with serious medical conditions. So far, when I've been really ill, she's been healthy and able to take care of me, the house, and the critters we include in our furry side of the family. This time, she can't do anything, obviously. I'm healthy enough, thank God, to pick up her responsibilities, but she does a lot, and I gain a new appreciation for how helpful she's been in the quotidian responsibilities of running a house.

Unlike me, who has always been a worrier about my health, she hates going to the doctor. That's bad, because with crashing asthma, she needs to have regular visits from her doctor. She hates the current doctor she has at UC Davis. As this crisis started to unfold on Monday the fourth, I put in a call to Davis to get her an appointment with a different doctor. They told me I couldn't change her doc. I asked to speak to a supervisor. Unfortunately, the supervisor called my wife and not me, and she told them she didn't want to see the doctor.

I suppose she avoids the doctor for two reasons, the doc's attitude and for cost reasons. The latter shouldn't be a problem, because our Blue Cross plan picks up 80 percent of most costs, and the only fee for a doctor's visit is the co-pay. However, this doc runs up thousands and thousands of dollars for 'tests', which except for the blood work, never seem to get done. And he is abrasive, and is very judgmental as to how my wife is managing her asthma.

The doctor she likes is with Kaiser, the plan she used to have. She has seen him occasionally over the years, and he was available through UC Davis, but I have no idea where he is now.

She now we wait. She has a son and a daughter. Her daughter has the power of attorney for health care issues, which is unfortunate because she's one of those people who haven't had a lot of experience with medical issues, and tends to slavishly follow my wife's blurted out thoughts that she would rather be dead than 'hooked up to machines'. What doctors know all to well is that when people are suddenly in the position of needed a machine to stay alive, the patient will almost certainly take the route to staying alive. The will to live is strong in most of us.

She's told me in the past that she didn't want to be ventilated again. However, at Kaiser emergency department, when she couldn't breathe, she did not refuse to be intubated again. That explains a lot about her thinking. Yet I'm afraid if she needs, for example, to have a tracheotomy, her daughter will refuse because she thinks she understand what her mom wants.

A similar experience occurred with my own mother. She apparently told my dumb sister that she never wanted to be 'tied to machines'. When she was on a ventilator herself, and the doctors said she needed a tracheotomy to help wean her off of the ventilator. My stupid sister refused. I hired an attorney to sue my sister to remove her from being the attorney-in-fact for medical issues. The hospital was in an uproar. They solved the problem by slowing bringing my mom out of her sedation, and asking her herself. My mom nodded 'yes' when asked if she wanted a trach. When people are actually faced with the immediate situation they feared, they tend to chose life.

I really, really hope I don't have to fight her daughter to save my wife's life. That ruins relationships for good.

If you are a praying person, and want to say a prayer for my wife, I would appreciate at it. Her name is Tonniette or Tonia for short. We would both really appreciate it.

It's difficult being the caregiver for a change.

12 year anniversary

I suppose we have several anniversaries to keep track of in our lives. Wedding anniversaries, the start of a business, milestones for your kids.

CLL patients keep track of another anniversary: their diagnosis with CLL.

Twelve years ago, I felt a large lump in my neck, on the ferry from Vallejo to San Francisco. I had planned a nice day in SF as a reward for nine months of hard work renovating an older house I had purchased some years earlier. The house was a wreck, and needed new plumbing, electrical and structural work. But, I finally got the job done.

That lump, of course, turned out to be CLL. At 48 I joined the millions world-wide fighting cancer.

I was, (and am) the type of person who needs to know as much about my disease as possible, especially the treatments available that could rid me of this cancer. That's when I first encountered the word 'incurable'. I can still remember when I read that CLL had no cure; it was in my driveway, reading a long review article about CLL from Leukemia & Lymphoma Society. Not a pleasant word to read.

Of course, 12 years ago, there were fewer options for treatment than there are today. It's odd to look at it this way, but patients diagnosed now have a much brighter outlook than those diagnosed a dozen years ago. I wish I could have postponed my disease a decade, or more.

Back then, chlorambucil was the gold standard to treat CLL. It wasn't a cure, and complete remissions were rare. Fludarabine had come onto the market, and a year earlier, something called rituximab was approved by the FDA. It would take a while to sort all of this out.

I joined the CLL group that GrannyBarb started, read as much as I could, and tried to become a patient advocate. I flew to Washington, D.C. two years running at the behest of the Lymphoma Foundation of America (now the Lymphoma Research Foundation) to lobby my congressional representatives for more funding for this all-too-common disease. Everyone was sympathetic, and we have maintained good funding for the disease, especially through the latter years of the Clinton administration, and the early years of the Bush administration. (September 11 certainly took the focus of the federal research community away from ordinary research and turned it towards research on bioterrorism.)

A couple of years later I consulted with Dr. Thomas Kipps at the University of California, San Diego. His name kept popping up in the research I was continuing to do on the disease, he was in-state, and my insurance would cover a visit (although I'd gladly pay out-of-pocket to consult one of the best CLL minds in the world).

There I learned that I was unmutated, ZAP-70 positive, 6q deletion, and had a high Beta-2-Microglobulin and LDH level. Couple that with the fact that I am male, and young for a patient, and I realized that I had been dealt a poor hand indeed.

Yet I avoided treatment for eight years. I tried any non-chemo therapy I could, including zinc to lower the amount of copper in my body (copper promotes angiogenesis, the growth of new blood vessels), resveratrol, EGCG, and Chinese herbal medicine.

Dr. Kipps and I concluded that treatment was indicated when my absolute lymphocyte count (ALC), which had been boringly stable (though elevated, about 30,000 as I recall), took off like a rocket. We waited a few months to see if it was real; the increase was.

I decided on high dose methylprednisolone plus rituximab for my first treatment. Dr. Kipps likes clinical trials, and I was game, so I decided on that for my first treatment. I got in on the trial of high-dose rituximab with the steroids. Unfortunately, because of red tape, I had to wait almost a year for the trial to start (September 2006). In retrospect, that was a mistake. I've come to believe that the time to start treatment is when there is a change for the worse in blood counts. Unfortunately, after that treatment, my status changed to 11q deletion, which carries a 'grim' prognosis. That was in 2007.

So how do I feel at 12 years? I feel OK. I've had a number of other treatments, of course, all associated with clinical trials. The last treatment, flavopiridol, was quite effective; it took my enlarged abdominal lymph nodes way down, almost to normal. I'd do that one again, though the side effects were inconvenient to say the least. My experiences with that drug are detailed in this blog. In spite of the difficulties I had, I had a very good response. My abdominal nodes had grown the size of a small cantaloupe, and was quite uncomfortable. And the drug drove the 11q down to 11 percent of my CLL cells, which is good.

What's next? Dr. Kipps is worried that the CLL has started to make a re-appearance only six or seven months after the end of my treatment (11q patients only have a nine-month remission, on average. I had even less). So I am exploring yet another clinical trial. He's also concerned that my blood numbers may indicate further genetic mutations that indicate perhaps myelodysplastic syndrome or something else. Dr. Coutre at Stanford has explained the FCR I unfortunately took has 'chewed up' or 'beaten-up' my bone marrow, probably permanently. This complicates the picture.

My spleen and liver remain normal sized, at least at present. And the lymphocyte count remains low (too low, in fact, thanks to FCR).

So, like always, we have to see what happens. So far, I've avoided most hospital stays, apart from the five days after the first dosing of HDMP+R, and an infection and fever a year later.

For that, I am thankful to God and modern medicine. I know my time on this planet, like everyone's is limited. We all get voted off the planet, eventually. I'm very glad I've been able to hang around here longer than I thought possible, given my negative markers.