Life and Taxes

I am done with the flavopiridol/Alvocidib trial, and I have to get back to my life. I'm starting my federal taxes right now. In fact, posting here is a bit of a break from that very boring task.

I have long wondered why a few lucky souls who have deep, deep remissions of their CLL just drop out of the CLL society and 'move on'. It seems almost like a betrayal, doesn't it?

I will not be so lucky. My CLL has always been higher risk. When I was diagnosed, I exhibited the ZAP-70 marker, I was unmutated, and I had a 6q deletion, which is an intermediate risk marker. I was (and remain) male, and I was relatively young at diagnosis (48). All of those count as risk factors. So, from the start I knew I was not destined to be a smolderer. I envied all of those people (mostly female, it seemed) who could live with CLL and not have it be life-altering.

I delved deeply into the CLL on-line community, starting with the granddaddy (grandma?) of them all, the CLL list at acor.org, started by GrannyBarb. I learned a lot about CLL, and came to fear words such as 'refractory', and 'relapse'. I also learned that researchers are not one to pull punches; when I developed the 11q deletion, I read that folks such as me had a 'grim prognosis'. It's hard to let those words roll off one's back, isn't it?

Anyway, I am not going anywhere. At best, my flavopiridol trial gave me a partial remission. My terribly enlarged lymph nodes in my abdomen have shrunk, but not gone away. For 11q folks, published papers on flavopiridol show an average 9 month remission time. Then, apparently, the average person relapses. Based upon my previous history, my relapse may come sooner.

But at the present time, measured in weeks, I feel OK and feel as though I can devote a bit more time to work and family. Both have been pretty good, though one of my supervisors (she's since retired, thankfully) resented the fact that I was gone so much during my trial and demanded no let up in the work, which means that the three days a week I could work had to equate to five normal days. They did provide me with a converted small 'quiet' room that serves as my office. That was a great accommodation that allowed me to drag my room UV sterilizer in behind me and be somewhat isolated from the germs around the office.

In any case, I will be retiring this May. I really, really enjoy my job, but with that 'grim' prognosis hanging over my head, I can't justify working any longer. My retirement benefits to my wife would go way down if I die will still employed.

I used to have a co-worker who was diagnosed with colorectal cancer when he was in his early 50s, I think about 52. Kaiser did surgery, and he did well for a couple of years, and then the cancer came back. He retired when he started having lung mets. The doctor told him he had about three months left to live. It turned out he was gone in three weeks.

I want to have a retirement that lasts longer than my poor co-worker. So, it's adieu for all of my friends at work, and good riddance to the rest of them!

I hope I have more than three weeks.

Finished with Flavopiridol

Last Wednesday March 17th, I finished with the 24th and last treatment with flavopiridol. My side effects were the usual, nausea, one bout of vomiting, and diarrhea. I've found that if I just get the vomiting over with, I'm done and the nausea is improved. The diarrhea lasts a couple of days. Inconvenient, to say the least, especially since I have an hour and 15 minute flight back from San Diego.

I fast the day of the treatment, and eat nothing the next morning as well. I find that the vomiting is better without anything in my stomach. The vomiting is the least of the side effects, since it is over in one session. Once I throw up, it's over. I can certainly tolerate that.

The other side effect is general malaise that evening. I go to the hotel immediately after the treatment, and I go straight to bed. I have to get up and go to the bathroom several times, of course. The other problem is for about an hour and a half, I have noticeable abdominal pain that lasts about an hour and a half. I sleep on and off the rest of the night. I am wiped out the next day, and I usually go to bed early Thursday evening and sleep for 10 hours.

Is it worth all of the discomfort and the expense (I've spent about $8,500 in transportation costs to UCSD, none of which is reimbursed). I think so. I've had a partial remission, which is remarkable in a case such as mine. Without flavopiridol, I would be in big trouble by now, perhaps even gone. I suppose there are other treatments to try, but once you've failed FCR, you are in big trouble.

And, of course, everyone fails FCR, eventually. (So why do it? That is a good question, and I wish to heck I had never done FCR.)

Research has shown (in small samples, which is what clinical trials use) that about 1/2 of refractory CLL patients (such as myself) will respond in some way to flavopiridol. Responses range from nine months to just over one year. People who fall out of remission can be retreated with flavopiridol again, and most respond again with the same level of response, which is remarkable.

Would I do it again if and when I fall out of my partial remission? Yes, I suppose so. The treatment is not pleasant; but there are very few options at this point in my life, and the time away from treatment is usually pretty good. During the treatment, Wednesday (the day of treatment) and Thursday are usually just gone, I can't do anything. By Friday evening I'm feeling better; by Saturday I'm usually feeling pretty good. So I have five days a week of feeling pretty good, and two days a week of not feeling very good. But, my options are few at this point.

I thank God that there is this option for me.

I go next month for the CT scan to see how my nodes have responded. I expect to see some improvement, but no total resolution of my nodes, and certainly no cure, or even a complete response.

But, beggars can't be choosers.

Last few days of freedom

I generally refrain from making political comments on this blog, since I'm not a terribly partisan guy. I cut my political teeth working for Democratic candidates for statewide office. I had a lot of fun and every campaign I've worked on has ended victorious. I've voted for several political parties.

But this health care bill will be a disaster for the United States. It's not so much this bill, though it raises taxes and 'front ends' those tax receipts for years before they are spent giving health care for millions of people who don't want to pay for health insurance until they need it. It will soon run a deficit.

The socialist left just wants a foot in the door. Once they get their vast bureaucratic agency, they will just add, add, and add to the socialized medicine system. Eventually, it will be government-run health care, a single-payer system.

You want to see how that works? Look at the UK health care system. Health care becomes part of the federal budget, competing with defense, education, social security, highway funding and everything else. There won't be enough money to keep care at the present level of excellence.

In the UK, there is an agency that was created to cut funding for cancer and other drugs. It's called NICE, and it's anything but. NICE has refused to fund scores of cancer drugs, because they are 'too expensive'. These drugs (which up until now have included Rituxan)are saving lives in the US. They are not saving lives in the UK, because the government can't afford to pay for them.

Don't believe me? Search on 'NICE denies cancer drugs'. Now, that doesn't affect me, because up until now, the US has a private health insurance system that spreads risk around, and doesn't have to pay for a vast bureaucracy that will be so inefficient it will make the DMV look like a paragon of efficiency.

But what do I care? I have a fatal disease, and I am likely to die before the socialists totally destroy health care.

I suppose it's because I care about my fellow cancer patients. I have relatives who will suffer once the federal government swallows health care. They will not have the same excellent coverage as I do now.

I suspect the first thing to go for CLL patients is IvIG, intravenous immunoglobulin injections. They are valuable to CLL patients with there terrible immune systems, but they are expensive and have not been shown to prolong survival. It's a quality of life issue, but don't count on it being there in a few years.

One funny thing? The pharmaceutical companies, who got Obama to promise to not negotiate lower prices for drugs, in exchange for their support. What are they going to do when they won't be able to sell their ridiculously expensive drugs at all?

Serves them right.

Combine this with the government seizure of GM, Chrysler, the student loan program, providing internet access to all Americans (at taxpayer expense, of course), and you have a road map to socialist nirvana. Everyone will be beggars at the government teat. And, once the government says no, you have no place to go.

I will leave you with a quote, and see if you know it:

"Still one thing more, fellow-citizens—a wise and frugal Government, which shall restrain men from injuring one another, shall leave them otherwise free to regulate their own pursuits of industry and improvement, and shall not take from the mouth of labor the bread it has earned. This is the sum of good government, and this is necessary to close the circle of our felicities."

It was the good and wise third president of the United States. He mentioned a 'frugal government' twice.

Boy, that isn't the case now, is it?

Penultimate Flavopiridol Treatment

It was my next-to-last flavopiridol (Alvocidib) treatment last Wednesday. I did probably the best I've done to date with the side effects.

I've been having nausea with every treatment starting mid-way through the eight-month treatment. This time was a little different. I started to feel queasy toward the end of the treatment. I was very late in getting the bags of the chemo; they were busy at UCSD and short-handed. So it was late in finishing up. My nurse Dan (who is great) took over when he got there (I think it was his late day or something; he did stay late).

But about an hour before I was released I started thinking I was going to throw up. Nothing happened. But I've noticed I've gotten some phlegm that starts going during the treatment. Anyway, I did finish the treatment without throwing up. Usually I make it to the motel before I throw up (if I do; it's about 50-50 that I do).

This time, I was 'unplugged' and going out the door when the nausea hit. I made it to the restroom at the Moores cancer center, but then I threw up. It's only one episode of multiple heaves (sorry for the grossness). Once I've thrown up, it's over for good. So I can't complain too much. And, to be honest, if I try to maintain, I just am nauseated for a longer period of time. So, just be done with it!

Once I got to the hotel, I was OK. I did have the diarrhea, but it wasn't too bad this time for some reason.

Fasting: I do fast the day of treatment. There is no reason to eat something, just to have it come up later. I also don't eat anything Thursday morning or afternoon. Believe me, I don't want to eat, so it's easy to fast.

Results look OK but I'm still dealing with low neutrophils, as a direct result of FCR. I wish I'd never done FCR.

Were do they all go?

I was discussing some mutual CLL friends with the spouse of a (sadly) deceased CLLer. We both agreed that we had lost touch with a number of outgoing, well-regarded CLL patients. Where do they go? Have they died? Have they just moved on, and stopped posting on the various CLL lists?

I could, but won't, name names. I do know that on many occasions, we get the sad news from a spouse, son or daughter, that their loved one has passed away from this crappy disease. I remember one case that bothered me a lot. The daughter of a proud, older farmer who had developed CLL had written in asking for advice. I gave links to websites, put in my two cents on various subjects, and tried to help anyway I could. Unfortunately, her father passed away from CLL after only a couple of years.

But what about people who just disappear? I know in one case a woman who went through HDMP+R (high dose steroids plus rituxan), and followed it with Campath, had such a good response she just stopped posting. She let her website lapse. I feared the worst. But, she finally answered my e-mail. She said she was just putting CLL behind her. (What a wonderful outcome for her!)

Others just disappear without a trace, and I'm reluctant to e-mail them or search the obituaries. No news is good news, sort of thing. I suspect that most of the friends I've had with CLL (some of whom I've met in person) have passed away.

Really, I wish they'd have a loved one let us know what has happened. I know it might be difficult to let the rest of the world in on your grief. I've left instructions to my wife to write to various lists if and when I pass away. (It doesn't have to be from CLL, now does it? Car crashes kill over 40,000 people a year in the US.

One CLL memorial page is at: http://www.cllfoundation.org/Memorial.aspx. At least this page lets us know what happened to some of our CLL friends.

Am I going to watch the Super Bowl?

The occasional reader who drops in when searching blogs on the NFL or Michael Vick may remember that I am boycotting the NFL since that 'august' body signed Vick to a huge contract after he cold-bloodily murdered his own dogs.

One respondent to my post sharing the fact that I am not going to watch the NFL as long as they allow this monster to continue in gainful employment said that the loser Vick 'made a mistake'. Yeah, like, 'I was going to the store but I killed my dogs instead'? That kind of a mistake?

But, now, the Super Bowl (and all of the hype) is coming up. The evil Philadelphia Eagles and their degenerate former quarterback Vick aren't in it, so maybe I can break my vow and at least watch the commercials?

Naw. As compelling as the game might be, I just can't lend my eyeballs to the venal NFL, who obviously cares more about money than justice for animals.

Mr. Vick is reported to have electrocuted, strangled, and stomped his own dogs to death when they disappointed him.

He does not deserve anything good to happen to him for the rest of his sad and pathetic life. I hope he gets what he deserves in this world, or the next.

Neutropenia

Since my unfortunate decision to undergo FCR (fludarabine, cyclophosphamide and rituximab), my neutrophil count has hit rock bottom, and pretty much stayed there. In fact, the low white blood count was the reason I only did four of the normal six cycles.

The neutropenia improved since January 2009, which coincided with the end of the four-cycle treatment. In the spring of 2009, I was on neupogen or neulasta for several months, with the low point being reached when my absolute neutrophil count plummeted to 106, well below the dangerous level of 500.

I did not need neutrophil support in the late spring, summer, and fall of 2009. However, beginning in late November, my neutrophils have dropped to dangerous levels again.

My counts are buoyed by the colony support factors neupogen/neulasta, with each course lasting 2-4 weeks. However, it may be that I am now neupogen/neulasta dependent, which is dangerous. Dangerous because artificially stimulating the production of neutrophils can lead to myelodysplastic dysplastic syndrome (MDS) or even the aggressive leukemia acute myelogenous leukemia (AML).

I'm hoping and praying that this does not happen.

Other than boosting my level of exercise, I know of no way to increase the production of the stem cells that were damaged by FCR.

That is one reason I have soured on the idea of using FCR. A well-known (though I had not heard of it prior to researching marrow failure) side effect of fludarabine in combination is secondary MDS, more difficult to treat than de novo MDS.

Live and learn. Though the learning might be easier than the living, if things go against me.

Even without MDS, I am perpetually at higher risk for infection being frequently neutropenic.

Not a happy place to be in.

OTOH, the flavopiridol/Alvocidib is still apparently working, though the side effects associated with the drug has not. I am scheduled for the last treatment in this fifth cycle on Wednesday, February 3.