Post Secret CLLer?

I found this image on Post Secret, the blog run by Frank Warren, a guy in Maryland who encourages people to send in anonymous post cards. These cards usually express things that the senders would otherwise keep to themselves.

No, I didn't send it in, and I can't be sure it's from a patient with chronic lymphocytic leukemia. But it does speak for all of us, I imagine, although I don't feel guilty for not suffering more.

The fog lifts

The fatigue that accompanied the start if my lenalidomide (Revlimid) therapy has pretty much disappeared after about three weeks. I didn't realize how bad it was until I started to come out of it and suddenly found myself with a lot more energy than I expected to have. I had started to forget what "normal" felt like. 

After therapy began on March 4, I began sleeping nine to ten hours a night and napping for perhaps an hour during the day. Even during my waking moments I was running (or I should say moseying) at about half speed. As this routine dragged on it became rather depressing. I have been fortunate in that I have not had the CLL-related fatigue that some patients report. Living with a drug-induced taste of it for a few weeks opened my eyes to how difficult it can be. 

Is the cessation of fatigue dose-dependent? I started at 10 mg daily, which was reduced to 5 mg about a week in. The fatigue still continued for awhile, though. I will no doubt attempt to step up to 10 mg again at some point in the near future. I'll just have to see if the fatigue returns.

Other than that, there is little to report so far. Blood work shows that my red counts continue to improve. There's no sign of low platelets or low neutrophils, either or both of which can accompany Revlimid therapy. It is possible that there is a slight, incremental improvement in my lymph nodes, but these can wax and wane under normal circumstances so I hesitate to read too much into it. One study put the median time to best response at 5.9 months and I haven't even been on lenalidomide for a month yet. Patience is both an art and a discipline.

Finally

Today, with President Obama's signature, health care reform became the law of the land. It’s not perfect but it’s a significant improvement over the mess we have now. The United States has taken a big step toward joining the industrialized world when it comes to insuring that the basic needs of its citizens are met.

It is a shame that thousands of Americans had to die on the way to this day because they couldn't afford insurance or because their insurance provider found a reason to drop them when they got sick or refused to cover preexisting conditions.

Despite their crocodile tears, Republicans did nothing when they controlled Congress and the White House to address those issues, not even basic matters of fairness that most reasonable people would agree upon. Now they have gone off the deep end, embracing all manner of wingnuttery.   

A new Harris Poll of Republicans shows that 67% believe that President Obama is a socialist, 57% believe he is a Muslim, 45% agree with the Birthers that Obama was "not born in the United States and so is not eligible to be president," 38% say the president is "doing many of the things that Hitler did," and 24% believe that Obama "may be the Antichrist."

And these people think they know better when it comes to health care?

Republican pols, of course, are running around like headless chickens pandering to the rightest of the right wing, squawking "repeal" and saying that Americans are against health care reform. Today's USA Today/Gallup Poll shows Americans supporting the measure by 49% to 40%. As Taegan Goddard of Political Wire pointed out on Monday, analyzing a CNN poll: “Parsing the numbers shows that many of those against the plan actually oppose it because 'it is not liberal enough.' In fact, 52% of Americans either support the current legislation or think it should be more liberal, while only 43% oppose the plan saying it is 'too liberal.' "

At some point in the future, people will look back and wonder what all the fuss was about. And more people will be alive to wonder, thanks to this legislation.

Lenalidomide lets loose

In a word, brutal. That's how I would describe my first ten days of lenalidomide, aka Revlimid.

I took my first 10 mg dose on Thursday, March 4. For the next two days the main symptom was fatigue, which is common among those starting the drug. It was nothing insurmountable, but it did require an extra hour or two of sleep at night and a nap during the day. (I took the pill at bedtime, which is recommended.) Waking hours were accompanied by a certain amount of cat-like lethargy, but I was still able to work at my home business. I would not want to be starting Revlimid while holding a high-pressure job or managing a busy household. This drug is the enemy of multitasking.  

By Saturday I was starting to feel noticeable effects of tumor flare, which is where the brutality comes in. It seemed as if my lymph nodes (and probably spleen) were growing by the hour. My abdomen became so distended that I looked at least eight months pregnant. A baseball was developing under my right arm. By sometime Sunday my neck was wider than my head. I could barely button my largest pair of pants. I was eating less because I was feeling full faster -- my spleen was probably pressing on my stomach and the abdominal bloat was pushing up from the other direction. I would say that in a matter of just a few days my lymph node bulk increased by at least 50%, and that's just a rough guess. It could have been upwards of 100% in some areas.

Each nightly pill added fuel to the fire. It seemed as if the nodes were intent on growing whether there was space for them to do so or not. While I knew that tumor flare is a normal side effect of lenalidomide, it was still scary. It provided me with a snapshot of how much worse my chronic lymphocytic leukemia could get if things got that much more out of control.

By Sunday evening I was experiencing a new symptom: trouble getting a deep breath. Up until then I was willing to tough it out, despite the discomfort. Bloated, distended, ready to give birth to an alien baby, that I could handle. Shallow breathing, not so much.

The shortness of breath was not constant, nor was I feeling like I was going to pass out. I was getting enough oxygen. But it was disconcerting, to say the least, and it was becoming more frequent the longer I stayed on the drug. Perhaps a mass of nodes was pressing on my diaphragm, or perhaps nodes were interfering somewhere else with the breathing process, or perhaps both. I couldn't help but wonder how much worse it might get.

I should interject here that, according to studies, tumor flare can crop up anywhere from 0 to 56 days after starting Revlimid. Median time to resolution is 14 days. I was just four days in.

By Monday night I had the intuitive sense that taking more Revlimid had the potential to push me into the realm of unintended consequences. I considered using steroids to dampen the inflammation since ibuprofen had proven worthless -- both ibuprofen and steroids are  accepted methods of managing tumor flare -- but steroids also interfere with the ability of Revlimid to prod an immune response to the CLL. So it seemed somewhat counterproductive to start down that road, and I had no idea how long it might take for steroids to begin to work effectively.

Ultimately, I decided not to take the drug. I checked with my doctor on Tuesday, and on her advice I didn't take it that night, either. The shallow breathing actually worsened on Tuesday, to the point that I curtailed most physical activity. I didn't feel an improvement of symptoms until Wednesday, especially later in the day, a few hours after I had my weekly 1000 mg dose of oftatumumab.

I met with my doctor that day -- try holding an intelligent conversation a half hour after you have gotten 50 mg of intravenous benadryl -- and we decided to temporarily scale my Revlimid dosage back to 5 mg. Since then, the tumor flare has continued to abate.

There is some debate about whether tumor flare presages a better response to the drug. A report issued by Celgene, the drug's maker, summarizing the findings of various studies, put it this way:

"There have been conflicting reports regarding the association of response to therapy with the occurrence of tumor flare (TFR) symptoms. Padmanabban et al. reported (2006) that TFR may be associated with clinical response and Coleman et al. reported (2008) that [in] four CLL patients, symptoms of TFR signaled a response. Sher et al. also stated that the occurrence and severity of TFR appeared to correlate with clinical response (2009). However, Ferrajoli et al. reported that, in their 2008 study, TFR did not predict for a higher response rate, but did develop more frequently in patients with lymph nodes >5 cm compared to other patients (53% vs. 15%)."

So, ultimately, there is no way of knowing for sure whether my lymph node explosion was a good thing. There's also no way of knowing whether cutting it short was a good or bad decision CLL-wise, although it certainly was the right call breathing-wise. If you can't breathe, CLL is a moot point.