Counts holding somewhat steady

A quick post: I've put myself on bi-weekly instead of weekly blood tests. The counts have improved to a certain extent, after the flavopiridol trial I was on last year/this year.

My hemoglobin count has improved to 12.0, after running in the 10s and 11s for the past two and one have years, after the poor decision to do FCR. My white count is now in the normal range, so no more neupogen or neulasta shots, for the time being. My platelets are also in the normal range, the first time in years (albeit low normal). I've been feeling pretty good, with no infections and no major problems.

So, as I've indicated before, flavopiridol (Alvocidib) is a great success for me.

It's not a cure, though. Everyone seems to relapse, and hardly anyone gets a complete remission out of it. My latest bone marrow biopsy shows CLL still present, and my spleen may have increased in size a bit. Nothing, though, that causes me any problems.

The average remission (which is in my case a partial remission) lasts 12 months for most CLL patients, and 9 months for those who have the 11q deletion, which is unfortunately my situation. However, one of the interesting things about Alvocidib is that is almost always works as well upon re-treatment. The treatment lasts eight months, and if I get nine months of remission, I could conceivably get eight plus nine months (17 months) for the first go-around, and another 17 months the second. This means I could perhaps get a total of THREE YEARS of decent health out of Alvocidib! For someone in my condition whose prognosis is regarded as 'grim', I think that qualifies as a miracle of sorts, thought Dr. T.H. probably wouldn't think so.

Anyway, I'm not cured, my CLL is still here, and my misguided use of FCR has made me much more vulnerable to MDS or Richter's, so I'm not out of the woods yet. However, at 12 months and counting after beginning Alvocidib, feeling good enough that CLL isn't pressing on my mind daily, is a great thing.

Would I do Alvocidib again? I'd say the pay-off is worth it.

Alan Sullivan

I've linked to 'Fresh Bilge' at the right side of this page for some time now. I found Alan's blog by searching for other CLL blogs. I'm the type of person who deals with serious and threatening news by trying to gather as much information as I can.

Alan passed away from CLL on July 9, 2010, after an abdominal infection. He lived in South Florida and was cared for by Dr. D, as he called him. The focus of Alan's blog was not CLL; he was a life-long writer, translator, and poet. Fiercely bright and a talented writer, he translated Beowulf and other works. Of late, he was engaged in translating the Psalms into succinct but poetic form, trying to capture not only the sense but the lyricism of these great Biblical works.

He was a gay man, and politically conservative, so that made us alike on one count. He was probably more libertarian in his views (for some reason this is more acceptable to the left than conservatism is) than I am, and he was concerned about the direction of the country, given our seeming inability to deal rationally on the subject of government spending. I think he would agree with the sentiment that government and the taxpayers alike have to start saying 'NO!' to good and caring ideas.

He also was an amateur photographer, geologist, vulcanologist, and meteorologist. He lived in New England, New York, Minnesota, on his boat at sea, and finally on land in South Florida. The clever title of his blog refers to the water that collects at the bottom of most boats. Generally it's a foul mixture of water, diesel oil, and whatever else ends up the the lowest place on a boat. He said that he wanted his blog to be a fresh dose of whatever.

He said he was diagnosed with CLL in 2005. I don't know the course of his disease, or the treatments he pursued, but I do know that he was cursed apparently with an aggressive form of the disease. He chose to deal with the CLL by treating it palliatively; he underwent a round or two of irradiation to his troublesome abdominal nodes, a problem which I am all too familiar. Living with a cantaloupe-sized mass in your gut is annoying at best.

He started spiking fevers a few weeks ago, along with serious and debilitating abdominal pain. Since he posted every day (generally multiple times per day), all of this unfolded in real time. I was bothered by the fact that his fever would routinely top 102 degrees, before abating at some point in the day. Finally, he went to the hospital.

They found that apparently he had had a 'leak' from the bowel into the gut. His body seems to have sealed off the breach. He underwent surgery in early July to find out what was going on. He never left the hospital.

I never met Alan. I did post comments on his blog, and I did give him some unsolicited advice about his CLL. I mentioned clinical trials and flavopiridol. I also liked to tease him about global warming. He didn't believe in man-caused global warming, and he pounced on the news of the fabricated data from East Anglia University as proof that the only warming on the planet was in the fevered minds of the Al Gore crowd.

So, another voice stilled by CLL. So much for the 'good cancer' (an oxymoron if I've ever heard one). Alan was a bright guy with a whole host of opinions on science, politics, and life in general.

As he lay in the hospital, he asked that his blog be shut down, but that his writings serve as his epitaph. The blog is still available. If you are interested, he has a memoir section that speaks of his growing up in the fifties, sixties, seventies and beyond, in a country increasingly dysfunctional, and believing more in fairy-land economics and taxpayer expectations.

He is missed, and, like all of us, cannot be replaced or duplicated. I checked his blog every morning for a dose of wit, volcano postings, and musing on the weather. I'll miss doing that.

Retirement?

I haven't retired yet! I found out that they change the retirement benefit upwards every quarter. The factor is related to your birthday, so as my birthday is in July, I will retire soon. (Because I have been so ill, I've been ready to retire on any day if my disease took a serious turn for the worse. So my wife says she will believe it when she sees that I've signed the paperwork.)

I have a number of reports to get done. Management is so anal-retentive (all woman management now, no men wanted), I have to go through every piece of paper and file it. So part of my day is now spent filing. We used to have secretaries do that, but we now need an analyst to file papers. Not smart nor efficient, but they don't ask me.

I will miss going to work. I like my job researching and writing, and I like most of my co-workers. We have a new set of managers (all women, of course) and they don't care if the work gets done, as long as you follow all the rules to the letter. No making up time (my old manager was great, which was nice since I ran out of sick leave a long time ago, and would have to use vacation time.

Baby boomers highly identify with their jobs. We find our place in the world based upon what we do. So I am not going to really retire. Not the kind of retirement where I'm lazing around the house, watching Judge Judy, bothering my wife. I've already signed up to take some classes, so I will be a part-time student. And I have my rentals to work on. I will just have more flexible management (me)!

To Port, or Not to Port

I had my monthly IVIg this morning. I finally figured out that having it on my day off, I could save using vacation time (my sick leave, once around 1000 hours) has dwindled to zero).

They accessed my sad, diseased body via a Power Port, which is a type of subcutaneous port. Since it is entirely under the skin, one can shower, exercise, and do anything one would normally do without having to worry about protecting the area. What a relief!

The port was placed almost a year ago, in late July 2009. The only reason I had it put in was that it was a requirement of the flavopiridol (Alvocidib) trial I concluded in mid-March of this year. I suppose that was for convenience or to protect my veins.

At first it was pretty weird having a lump in my upper chest. It isn't visible with a shirt on (I wear baggy shirts because of my middle-age spread). It is noticable, of course, when I have my shirt off, but I never take my shirt off in public (people would complain about the unpleasantness). My new GP thought it was a huge boil, until I told him it was the port.

I couldn't wait to get the port out at first. It's a daily reminder of my serious illness. Now, after a year, I'm going to leave it there for as long as I conceivably need it.

It isn't perfect. I've bumped it a couple of time, working around 2x4s and the like, and one can't lean against anything in that area (like one would do reaching for something). I sometimes worry about it falling apart and causing a clot. (There is a noticeable tube that runs from the port into a large vein that empties into the heart; it's on the left side of my chest. That can be felt and would be catastrophic if it broke off and traveled to my heart.) And I think the worst risk would be if I was in a car accident and slammed into the steering wheel. Or even an airbag.

I bring it up because of my temporary neighbor in the infusion room this morning. He has a PICC line, which in his case is a series of three tubes that collectively go into a vein in his arm. He has developed an infection around the PICC line entry point, and once the nurses saw that, they became very concerned, paged the doctor, etc. etc. They suspect either a bacterial or a fungal infection. Luckily, it seems to be a surface infection and not into his blood (for now, at least).

I said a short prayer for my fellow cancer-sufferer. I hope he is OK. We are a brotherhood of sorts, I suppose.

An update

I have been feeling OK, though my WBC is still very low, and my hemoglobin and platelets are below normal.

I suspect that there is something awry with my stem cells. They are not producing enough of most everything. This is called marrow failure, which is a term that describes what is obviously happening, but explains nothing beyond that. Little is known about marrow failure, except causes. Radiation is one big killer of blood-forming stem cells (hematopoietic stem cells), chemical poisons are another. A third cause is...chemotherapy! In other words, FCR.

It is possible this would have occurred on its own, since CLL allows more cancers to grow unabated. But since my counts crashed on the fourth cycle of that toxic regime, it's definitely linked to FCR.

Folks, please think about avoiding FCR if you can. Reserve it for when you have relapsed and are looking at a stem cell transplant. The combination of the 'F' and the 'C' (fludarabine and cyclophosphamide (cytoxan)) apparently are a potent producer of marrow failure, aplastic anemia and myelodysplastic syndrome (MDS). All of these are killers (six months to two years). Knowledge of these cancers is about where CLL was in 1995. It's terrible.

There are many other options out there. I made a serious mistake, being encouraged to try it by MD Anderson and seduced by the high complete remission data, etc. But everyone eventually fails FCR, and then the prognosis is 'grim'. Learn from my lesson.

Meanwhile, Dr. Kipps has been silent. I've been sending my blood numbers to them down in San Diego, but I've not heard anything. I am going to be prepared for an MDS diagnosis by making an appointment to see a doc at Stanford, where they have an MDS center, and a robust (as far as I know) stem cell transplant center.

Hangin' in there

My blood counts in San Diego were truly worrisome. My white count, which had been recovering more or less from the end of treatment, dropped a bit a week before the SD trip. In San Diego, it took a huge drop, overall from 2.5 to 2.0 and then to 1.3. My absolute neutrophil count, though, was hovering over the magic 500 cut-off. I think it was something like 680.

I try not to take Neulasta or Neupogen unless I am in danger. After my first treatment with HDMP+R, my white count went down to 0.0. That's probably a false number, since I understand that in most labs, anything under 100 or so just leads to false readings. But I did end up spending four unpleasant days in the hospital, with a temperature maxing out around 105. Very dangerous territory.

A couple of years ago, after HDMP+R, but before ISF-35 and the hated FCR, my neutrophil count dropped to 103. The nurse apologized to me, saying he was sorry my count was low. I thought that was a bit weird, but maybe he thought I might not be around much longer. It's been two or three years, so luckily that never happened.

I was very worried that my counts would keep on dropping, so I had a CBC on Monday, five days after my last test. My white blood count bumped up to the usual low, but better, level of 2.5. My neutrophil percentage is at the normal (for me) level of 50%, so I'm OK, and don't need a $9,000 Neulasta shot.

I wonder how long that will be available for me? (Though the thing I really worry about is the IVIg, which is hellishly expensive, about $16,000 a month. My insurance pays for that, at least for now, but as time goes on, and government health care kicks in, this may go quicker than a dollar bill on a New York sidewalk (sorry, just made that up, though I'm probably not the first to use the saying)).

How do I feel? I was feeling fatigued and kind of low around the time of my SD trip, but now I seem to have rebounded a bit. I'm back to work full-time, and trying to salvage some folders (paper) that have mysteriously disappeared. What a pain to have to do over what you've already spent weeks to do previously!

I am going to retire this July, after 36+ years on the job. I can't really afford to, but my CLL is not going to let me go, apparently, so I just have to draw the line somewhere. I'll be 60 (the big 60...bummer!).

Unfortunately, like many CLL patients, I'm too sick to travel much, and the impaired immune system won't let me go to the places I'd REALLY like to go to, such as Mongolia and Vietnam and places such as that.

My advice to you? Travel now while you still can! (The crash has left me pretty broke, and that factors in as well.)

Memorial Day is upon us in the States; I'd like to have a picnic. Our tomatoes are coming along, and our peas are just taking off with the warm weather. Unfortunately, they won't be ready by Monday, but hopefully soon!

An update

Two months after the cessation of hostilities (against my CLL cells and with collateral damage to my gut), I seem to be doing about the same, which is feeling pretty good. I am back to work full-time (although I really only took two days off a week while doing the treatment), and cleaning up loose ends. It is a task made more difficult with having supervisors who are much more focussed on their own situation, ensuring that work flow continues unabated by anything foolish such as illness. And by supervisors who cannot let work go out, but are intent on sending work back again and again until it is not only polished, but fairly sparkles. And that is for the most routine of tasks, such as letters to incarcerated folks looking for someone to talk to (men get this task, for we have had a number of cases where these men, who are so hungry for interaction with women, that they become letter-writing pests).

On the other hand, my CLL continues to inhabit my body. I did not expect a complete remission from flavopiridol (Alvocidib). Virtually no one gets one; I think only one person in the entire history of clinical trials using the agent has achieved even a complete remission, let alone a molecular one. So it's a partial remission I've received. And that's just fine. With a response rate of only 50%, it's fortunate that I responded at all.

One excellent feature of flavopiridol is that when relapse comes (an average of 12 months over-all, and 9.4 months for 11q del folks such as myself), the regime almost always works just as effectively the second time around.

This leads me to conclude that perhaps our two-faced friend might be used effectively as a maintenance drug. I like to think of one dose a month being enough to keep CLL at bay for a long period of time. But no one is testing that treatment regime, which I think is unfortunate. Really, really unfortunate.

And my partial response may not be a terribly solid one. My counts improved nicely over the last two months, and my hemoglobin and platelet counts are near-normal. For that, I thank God.

On the other hand, my white count, after improving each week, has now tanked for whatever reason. I've not needed a Neulasta shot for the two months, but I am now skirting along near the magic 500 number. If my neutrophils drop below 500, I will have to get a shot. Not good.

What could be causing this? The worst possibility is that the idiotic decision I made two years ago to take FCR has ruined my marrow, and given me myelodysplastic syndrome (MDS) a terrible new chromosomal insult resulting from the combination of fludarabine and cyclophosphamide.

MDS is becoming more and more common, as a result of chemotherapy such as FCR. MDS is where CLL was 15 years ago; few treatments available, and none of them effective at all. Survival estimates range from a few months to a few years.

Funny MD Anderson never warns you of the possibility of a fatal complication from using their beloved FCR. It may be unfair, but it seems that certain docs there love FCR, dole it out like candy, and just brush away concerns from patients like so much dirt under a rug. Gotta push the drugs!

MDS usually appears as anemia, and then progresses to take out all lines of the myeloid precursors, resulting in neutropenia (what I have) and thrombocytopenia, in addition to anemia.

I didn't get more than four months remission from the FCR. Definitely not worth the potential price.

There are other possibilities to be considered with neutropenia after FCR. One could be acute myeloid leukemia, a very nasty leukemia (especially in folks who acquire it secondarily to chemotherapy), or something called chronic myelomonocytic leukemia (CMML). Or perhaps aplastic anemia (AA). (The NIH says of the latter, "Secondary aplastic anemia may be an unavoidable consequence of treatments such as chemotherapy.) Nice. Only in CLL it is now not necessary to have chemotherapy.

Or it could just be a benign problem. Some people never recover neutrophils after FCR. Meaning that they stay on growth factors such as Neulasta for as long as they a-last-a (sorry). That is a remote possibility, but it is a possibility.

I had a bone marrow biopsy (my 15th, for those keeping track). Dr. Kipps is worried enough about MDS that he is running a special test looking for tell-tale signs of the disease. He wasn't particularly worried about it before, since it turns out that flavopiridol can lower neutrophil counts (which I didn't think happened).

So, as usual with CLL, I just have to wait for the results. I am praying for the best, hoping for the best, preparing for the worst.

What a penalty for making the mistake of using the FCR candy. Death. Not good. When will MD Anderson learn that there are much better options than that? Ever? They developed it, I guess, so they want to use it, over and over again. I guess it's the 'invented here' mindset.