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.

Syncope after Alvocidib

Yes, I had a nice side effect from my treatment in late December.

Since I live in Sacramento and fly to San Diego each week to do this trial, I stay in a motel that night. I usually feel so terrible that I just don't want to move. I guess I could fly even in misery, but the Alvocidib (flavopiridol) gives me frequent watery diarrhea (joy, joy, joy!) so I just don't want to be buckled into by seat at 35,000 feet with a very urgent need to use the bathroom, only for the stewardess to tell me the fasten-seat belt is on, and I have to return to my seat...

So I checked into my motel on late December evening, feeling rotten as usual. By rotten, I mean nauseated and with abdominal pain. This time, in order to cut the amount of potassium in me, without using the horrible Kayexalate (just thinking this word makes me want to throw up; such is the power of the mind), they gave me a Lasix pill.

So, I'm checking in, trying just to get the key card for the room, when (apparently) I fainted and ended up passed out on the floor for a minute or two. I remember the desk clerk asking, 'should I call 9-1-1?' Of course, they did. So I had yet ANOTHER night in Hotel 'd Thornton (hospital). Joy, joy, joy!

When I fainted, I apparently hit my head on the rather hard tile floor in the lobby. The back of the head hurt. I asked the junior doctor at Thornton (who looked about 15) if this was a danger for someone with low platelets (yes, my platelets got into the normal range and promptly fell again). He said, no, the platelet level of nearly 100 would not cause any abnormal bleeding. So any lapses in memory or cognition would just probably be overlaid in my aging brain and not be distinguishable with the other insults that have happened over the years (and there have been some, due to sports).

So, you get Lasix with your flavopiridol, ask for a crash helmet to protect you if you end up passed out on the floor.

Last Minute Donations to CLL Charities

Nothing like waiting to the last minute!

If you want to make some 2009 donations to further the cause of CLL research, please consider the following organizations:

Perhaps you remember the research effort into finding the antibody which may wipe out all CLL cells? That effort excited Dr. Byrd at Ohio State and a CLL guru. The sooner we get this in trials, the better. The address for donations is:

The National Cancer Institute Gift Fund, Building 31/Room 11A-16, 9000 Rockville Pike, Bethesda , MD 20892 . The check should be made out to the National Cancer Institute and the cover letter should request that the donation be used to support translational CLL research such as that conducted by my laboratory.


The other organizations that help support CLL research include Dr. Kipps' Blood Research Fund:

https://www-er.ucsd.edu/givetoucsd/secure/paymenttran/onlinegiving.asp?sk=42


Dr. Keating's CLL research fund is at:

http://www.cllglobal.org/donate.htm


The Kanzius machine that may help treat CLL is being tested at MD Anderson. It uses nanoparticles to attach to CLL cells; heat is then applied body-wide to destroy the cells.

http://www.kanziuscancerresearch.com/supportthiscause-p-163.html


PLEASE PLEASE PLEASE donate to destroy CLL. We need a cure NOW!

And, please all of you one or two people reading this, have a safe and healthy New Years Eve and the same for all of 2010. May this be the year CLL is cured.

A belated "Merry Christmas"

I was too sick yesterday to get on the 'net and post here, but a belated Merry Christmas to all!

I am having continuing problems with my gut, bloating, gas, etc. etc. I don't know whether I have an infection or this is the result of the Alvocidib (flavopiridol). I am going to the urgent care clinic to find out this morning. It is troubling and very painful.

Be well, all.

The Most Common Leukemia?

For many years, CLL has ‘reigned’ with the title of ‘most common leukemia in the Western world.’ That title may be in jeapordy, though, if recent trends continue. Already some say that the title has already fallen to another contender. What is this mystery leukemia that seemingly has come out of nowhere to grab the crown? Myelodysplastic syndrome, or MDS.

Perusing the ASH abstracts, a number of papers caught my eye, including this one: http://ash.confex.com/ash/2009/webprogram/Paper19496.html. The authors say that “Myelodysplastic syndromes (MDS) are becoming the most commonly diagnosed forms of leukemia in the US .” Also, consider this very interesting paper that asserts that MDS may be afflicting over a hundred thousand Americans: http://www.moffitt.org/CCJRoot/v16s4/pdf/2.pdf

One reason MDS might be increasing in frequency is that it can arise as a result of chemotherapy for other cancers, including fludarabine-containing regimes such as FCR for CLL. As cancer patients live longer (always a good thing, of course) other cancers will make their presence known, unfortunately.