Monday, December 20, 2010

Holiday Season Update

It's actually a bit hard to tell where I'm at vis-a-vis CLL. I feel OK, but my nodes are slowly growing again. Since I'm at the average response period after flavopiridol (Alvocidib), I should expect these events, I suppose.

My energy level is high and I'm able to work full-time on my own business (since retiring from the State of California). Like a lot of people, I find I'm busier now than when I worked. (Why? When I was working, I just put things off that I couldn't get down. Now I am able to load those tasks onto my daily plate.)

I have not felt sick, and believe that flavopiridol could very well find a place in the doctor's bag of therapies, especially in end-stage CLL patients such as myself. This drug has worked in this 11q del patient who has failed HDMP+R, ISF-35, and FCR.

In any case, I am casting around for something else to do to keep the CLL monster at bay. I personally have given up on a cure (since it doesn't exist, except in the rare case of a long-term transplant patient who survives that ordeal). I'm looking for long-term control, if I can get it.

I suspect that I'll either choose Revlimid+Rituximab or some version of CAL-101 or the new PCI-32765, though currently that trial is often limited to those 65 and older, which I'm not.

There are a number of good-looking candidates for more benign treatment of CLL coming down the pike, but cures they are not. Long-term control in a disease of (usually) the elderly might be enough, though I suspect that Drs. Kipps and Keating don't want to end there.

Have a nice Christmas and New Years'. I can't believe this year is almost over...

Thursday, November 25, 2010

Happy Thanksgiving

Another Thanksgiving has come. I hope all have a blessed and wonderful day of thanksgiving. I'm personally thankful that my wife is recovering and getting better every week. I'm doing OK. My counts are still below normal because of permanent damage caused by my stupid foray into FCR-land.

I had a severe inner-ear infection a couple of weeks ago. It seems to have abated, but it's left me with a nasty cause of tinnitus. For those who have been lucky enough not to have experienced this 'ringing in the ear', it's a constant (in my case) high-pitched buzzing, caused by long-term exposure to loud noise (not my problem) and infection.

It's very annoying, and it's accompanied by hearing loss. I have an appointment in January with the ENT doc, but there's nothing they can do. Medical science has a long way to go.

Anyway, hope things are better with you all. Be thankful for what we do have.

Friday, November 5, 2010

Survived Halloween

Halloween is my least favorite holiday. I dislike being tied to the house, waiting for teenagers to show up after 9 o'clock for a freebie. I also dislike the trend for parents in their thirties to hold out a bag for themselves after their tiny tot has gotten a treat.

We had over 65 trick-or-treaters this year, down from about 150 last year. I had one woman confess that she drives over to our area from hers, because it's 'safer and has better candy'. At least she's being honest. I've long suspected this, because there are only about 30-40 children in the two blocks around ours, and they don't come around twice.

Anyway, I'm holding my own. My ear infection has improved, though the antibiotics have interfered with my digestive system, reminding me of the days a year ago when flavopiridol did much the same (though to be honest, it was worse with flavo).

I'm shopping around for another treatment to keep my CLL in check. At this point in time, I think that that is the best we (and especially) and I can hope for.

Have a great holiday season, folks. By this time next month, I'll probably be involved in yet another clinical trial.

Saturday, October 23, 2010

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.

Saturday, October 9, 2010

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.

Tuesday, October 5, 2010

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.

Friday, September 17, 2010

The latest

Saw Dr. Kipps on Tuesdays, the only day he pretty much sees patients. I had some CLL friends in San Diego who were very nice and ferried me around a bit, picked me up from the Cancer Center and helped me get around. Also, they took me out to dinner at a place called Milton's. It's a Jewish-style restaurant in La Jolla. It was very good; the pastrami was excellent. I had a soda called Dr. Jones (I think) and it's apparently a NY classic that you just can't get many places. It was good and made me feel a bit of a connection to NY, which I've been to exactly one time (to see an herbalist who cured one man of CLL, though no one else, to my knowledge).

Dr. Kipps is worried about me, since my counts are still in the tank. He suspects something else is going on. He wants me to start treatment again, giving me four different trial consent documents. Combined with re-doing flavopiridol or Cal-101 at Stanford, that makes six different protocols. That's if my beaten-up marrow has not transformed. He seemed pretty worried, and gave me a hug.

The bone marrow biopsy was pretty painful, even with the percocet I insist upon. (That was a problem in itself; Dr. Kipps apparently forgot to send the prescription over, so his nurse had to track down this busy man, and get him to write a script.)

So I am now waiting and worrying over what this latest biopsy will show. He said my last biopsy in May was fairly normal, and he doesn't understand why my counts are so terribly low (especially the white blood count) when the marrow looks OK.

There may be something else going on...

Tuesday, September 14, 2010

My Marrow has been "Chewed Up" by FCR

I saw a CLL doctor for yet another opinion, this time a doc at Stanford. We discussed my situation, especially in light of Dr. Kipps' recommendation that I start a search for a donor for a much-feared stem cell transplant (the survival figures are not as high as I'd like).

I had to wait over an hour to see him, which seems to be par for the course for busy CLL types. I gave a brief rundown of my history, and the fact that I've had four treatments; HDMP+R, ISF-35 (direct nodal injection), the idiotic FCR, and flavopiridol. According to his labs, the slight improvement in my numbers noted at UC Davis has disappeared, but I think some of that can be ascribed to different labs. I like Davis' lab, because I always have better numbers there.

He said there were two drugs in trials at Stanford that he likes for CLL: Cal-101 and another drug that he didn't even mention the name/number of. Something like PCI something or another. I'd pass the name along, but he didn't pass it along to me. (Searching the web I do find two candidates: PCI-32765 & PCI-45292, both Bruton's Tyrosine Kinase inhibitors.)

We then talked about why my marrow has never recovered. The doc said my marrow was 'chewed up' by FCR. I asked if there was anything I could do to make it better. He said, 'no'. He also said, 'they never mention that when they publish glowing reports about FCR.'

So, in addition to a heightened risk for Richter's tranformation, and myelodysplastic syndrome, our non-friend FCR can 'chew up' your marrow. Wonderful. Apparently, FCR has left me with a permanently scarred and chewed up marrow. Sweet!

The doc is going to send me the protocol for Cal-101, which he seems to like a lot. It apparently doesn't give many people a complete remission, but it does help shrink swollen lymph nodes.

Besides my chewed up and spit out marrow, the abdominal nodes may or may not be making a comeback, so this might work well. We will see. I see Dr. Kipps soon as well. And, joy, I get another bone marrow biopsy! That will make number 16. I wonder what the record is? I wonder if I have any marrow left in my hip after all of the sucking and drilling?

Monday, September 6, 2010

Holding my own, but problems may be ahead

I saw Dr. Kipps in mid-August. He was harried as usual; I had to wait an hour and a half. I don't know why he gets so backed up; I suppose it's partly because they fit people in as the need arises.

He started out by telling me my May bone marrow biopsy was good. I had a nodular partial remission, which is better than a partial remission. I still have CLL cells in me, but they are not so widespread. So the flavopiridol worked quite well. He was happy with my performance and over-all activity level.

However, he became concerned when he saw my blood numbers. They still haven't recovered from the FCR two years ago. He seemed disturbed by the numbers. He wants me to come back in September for yet ANOTHER bone marrow biopsy. My pelvis is more holes than bone, now, I think. This will make number 16 I believe. I'm a pin cushion.

He also mentioned that he wants to start a search for a stem cell donor.

As you can imagine, this was extremely disturbing news. I was certainly prepared to re-do flavopiridol if the drug company would allow retreatment (another 13-14 months of decent quality of life sounds EXCELLENT to me!!!). I suspect he thinks that things have gotten past that now.

It's all due to the FCR in my mind. My counts are still way low, and have never come back up.

The transplant, of course, it a sure death sentence. Few people my age make it more than a couple of years. No one I know, even through the internet, has survived more than five years. It's a terrible procedure that over-all, doesn't work. Up to 40% of patients don't even get out of the hospital. It takes a full-time commitment by a caregiver, and my 'caregiver' has a chronic disease herself.

Since I live in Northern California, I'm going to get a second opinion at Stanford. They have a decent CLL practice there, and they also do transplants.

A transplant is a last-ditch effort to keep you alive for a few more years. It just depends on how much agony (graft-v-host disease) you want to endure, and how your cancer responds to the graft. It also depends upon getting your disease down to a low point, at least a complete remission.

Getting to that point would present a problem; I've never had a complete remission in this disease.

Bad news all-around. This may be my last Christmas (if I make it that far).

OTOH, no one is guaranteed anything on this planet. It's just bad timing. Treatments for CLL are really getting a lot better, and promise to get better all the time. Just not soon enough for those of us with intractable cancer.

Sunday, August 15, 2010

Medical Rationing Begins

I HATE to see stories such as this:

Medicare Says No to Stem Cells for MDS
By Charles Bankhead, Staff Writer, MedPage Today
Published: August 06, 2010

WASHINGTON -- Medicare patients with myelodysplastic syndrome (MDS) will receive coverage for allogeneic hematopoietic stem cell transplantation only when participating in qualified clinical trials, the Centers for Medicare and Medicaid Services (CMS) has ruled.

CMS decided against coverage because available evidence "does not demonstrate that the use of allogeneic hematopoietic stem cell transplantation improves health outcomes in Medicare beneficiaries with MDS."

However, the agency also ruled that allogeneic stem cell transplantation is "reasonable and necessary" for MDS through the Coverage with Evidence Development provisions of Medicare regulations. As a result, Medicare beneficiaries can qualify for coverage of therapy provided through clinical trials that meet certain criteria.

CMS will consider only prospective clinical trials that examine allogeneic hematopoietic stem cell transplantation's effect on the outcomes of relapse-free mortality, progression-free survival, relapse, and overall survival. Trials must address one or more aspects of three questions:

* How does transplantation affect outcomes in Medicare patients with MDS as compared with no transplantation?
* How do the International Prognostic Scoring System score, patient age, cytopenias, and comorbidities affect the outcomes?
* What characteristics of treatment facilities predict clinically meaningful improvement in the outcomes?

The complete text of the CMS decision is available at

NICE in the UK is notorious for denying life-saving drugs to their citizens (one of the latest is Vidaza for myelodysplastic syndrome, which is a side-effect for CLL patients of FCR). This is one of the few drugs that is available for MDS, but because medical care is under the purview of the government, and not private insurance companies, there is real pressure to save money.

This is not a good development. Look for further degradation of the American health care system to 'save government money'.

Things pretty much the same

No real changes to report. I have been a bit bothered by some pain in my duodenum. I found this out when I took a couple of aspirin because of some severe back pain I was having. I hurt my back when I filled my car up with gas. Perhaps a somatic response to the pain of paying $50 for a fill-up.

Anyway, besides the back pain, the pain in my duodenum, and miscellaneous pains elsewhere, more due perhaps to advancing age than the CLL, I have been feeling fairly well. I know that the average remission after flavopiridol (Alvocidib) is only nine months for 11q- folks like myself, so I'm half-way there. (My last treatment was in March.)

Unlike many chemotherapy regimes, most responders respond as well the second time to flavopiridol as they did the first time. I must be frank and tell you that I simply don't look forward to giving another eight months over to feeling fairly rotten two days of the week, four weeks in a row, with a blessed two week holiday after each cycle.

But if it keeps me alive, I would do it again.

And I understand that the treatment pattern has changed in the trial. Now, apparently, they are giving the drug for three weeks in a row, with two weeks off. Well, that's better than nothing!

My personal feeling (which may be totally without foundation) is that they might give flavopiridol once a month as a maintenance dose for those who do respond. The drug, it turns out, does depress the neutrophils, and perhaps the platelets, and the hemoglobin levels. So contrary to what I was given to understand, there is some hematologic effects.

In any case, I will see Dr. Kipps within the month, to see how I am doing. Since I stupidly did FCR, I am at a higher risk for MDS and Richter's transformation.

BTW, I did get a once-over by the dermatologist, and seem to be free from the other scourge of CLL patients, melanoma. I also have a fair number of dysplastic moles from my days as a frequent swimmer, hiker, and all-around pool guy. I love the out-of-doors, but there can be a price to be paid.

Thursday, July 22, 2010

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.

Monday, July 19, 2010

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.

Friday, July 2, 2010


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.

Saturday, June 26, 2010

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.

Friday, May 28, 2010

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!

Sunday, May 23, 2010

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.

Saturday, April 24, 2010

What to do next

For folks such as me, with the serious 11q deletion, eight months of flavopiridol (Alvocidib) gives, on average, a nine-to-ten month remission. That means, in total, start to finish, I'll have perhaps, on average, the need of something in 17 months, about a year and a half. (To be honest, that is pretty darn good realizing in how bad of shape I was in last July. My belly was rigid from tumor at the time.)

The question will be, what to do. The small study of flavopiridol patients show that five out of six patients who responded the first time, respond the second time, with a similar response rate, and a similar remission period. That means one might get 34 months out of flavopiridol! That's really, really good for people in my position.

Dr. Kipps has not mentioned doing flavopiridol again. And I really don't want to go through the CT scans again, just for the drug company's drug approval process. Perhaps I could ask for the drug on a compassionate basis.

He's also mentioned R&R (rituxan and revlimid) and ABT-263 as other options. Both of them have significant side effects; in the former, tumor flare syndrome, and in the latter, significant platelet destruction.

I would lean towards more flavopiridol, perhaps on the latest dosing regimen, which is three weeks on, and two weeks off. That would cut out one trip per cycle.

If I lived in San Diego, the flavopiridol would be more convenient and less costly, but I don't and it's not.

We'll have to see what Dr. Kipps says after the results of the scan and the bone marrow biopsy are in.

So how am I doing?

I'm doing OK. I am a bit concerned because my numbers aren't up as high as I'd like them, but at least I'm off Neulasta for the moment (thank God!).

I feel OK but I've developed the weird hot flashes again, which I associate with CLL because I've had them before when my numbers were really high.

My WBC is still below normal, but have come up. My platelets are at 100, which is low but not dangerously low.

Flavopiridol has given me an additional nine months, for which I am grateful.

I just can't help wondering why, since everyone relapses from flavopiridol, they don't offer it as a maintenance drug, once or if a remission is achieved.

I had a CT scan (which I hate because the radiation is so high- you get a lifetime's worth of radiation during the trial if you do all of the scans the drug company wants). What do they care, though? It's not like it's their body.

I have a bone marrow biopsy scheduled for next month. That means another trip to much-disliked San Diego. And another $200 for the flight and taxis and the like.

I mentioned my taxes last post. I did get them done (on April 15th, natch). I do get a refund of the over-withholding because of large medical bills. Not only the sheer size of my deductible, but all the travel to SD. It's in the five figures, believe it or not.

In retrospect, I could handle everything easily, the vomiting (only one bout on an empty stomach), the abdominal pains that night, and the tiredness the next day or so. It's the diarrhea that is the big problem. It resolves, but it takes a few days, and it's unpredictable and very urgent. Meaning that you don't want to be more than a couple minutes from any bathroom, at any time. Lots of gas, too.

Not a good combination.

Sanofi-Aventis needs to work on solving that problem, or they won't find many takers for Alvocidib (flavopiridol). Except for desperate patients who have started running out of options, such as me.

Tuesday, March 30, 2010

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, 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.

Friday, March 26, 2010

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.

Friday, March 19, 2010

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?

Friday, March 12, 2010

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.

Thursday, February 25, 2010

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: At least this page lets us know what happened to some of our CLL friends.

Friday, February 5, 2010

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.

Monday, February 1, 2010


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.

Saturday, January 30, 2010

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.