Experience

The only thing for it is to think.

This week I re-read everything I could find about Rituxan: journal articles, drug information sheets, blog entries, cancer forums. I also asked other HCL patients about their experience.

Once again I'm outside the norm. 85 percent of patients — 17 in 20 — get a complete remission after one treatment with 2-CdA. 10 percent — 2 in 20 — get a partial remission. That would be me. The other 5 percent — 1 in 20 — get no benefit at all, or not enough to matter.

WAID (stands for whatamidoing), in California, is in the 5 percent. Following diagnosis in 2003, at age 31, she tried 2-CdA twice. It did nothing. Then she did a couple of rounds of Rituxan (only), with unimpressive effects. Her latest regimen is ritux + alpha interferon, which seems to be working a bit better. The Rituxan gives her a mild, temporary case of anemia, knocking her hemoglobin down about 1.5 points and reducing her white blood counts, but not dramatically. So far, her counts bounce back after 2 months or so. I've had slightly more problems every time I've taken it, but overall I still have no complaints. She can control the side effects during the infusion with antihistamines and steroids. In my experience, the reports have been much scarier than the actual experience.

Judging by her many responses on the HCL discussion board, WAID knows a lot. Her advice: Since I assume you'd rather treat yourself, as a whole human being, instead of just creating a prettier set of numbers on the lab report at any cost, I'd say you should ignore the BMB results for now and see how you do for the next month or two. She suggests a second opinion from one of the major HCL researchers, Tallman at Northwestern, or Savens at Scripps.

Meanwhile, Pat says having 5-10% really isn't that bad, as your blood levels are coming up nicely! 200 for platelets... oh man, it's been a long time since i've seen that, heh heh... But concerning side effects of the Rituxan, as long as you take the precautions against "reaction," you will do just fine. Everyone who was a little apprehensive was pleasantly surprised how smooth the Rituxan treatments go.

Carolyn: I was treated with 2-CdA in October 2005 and had a BMB in mid December with a residual 5-10% Hairies (I think I had >90% at diagnosis). My counts have remained pretty stable for over 2 years and I never have had any real symptoms that can't be attributed to age, etc., except maybe the overwhelming tiredness that sometimes comes on me. That may be my age as well.

It's your cancer — do it the way you want to. Nice. Thanks, Carolyn.

And Paula: My last BMB was done the first of December and I am at 8% hairy cell, same as I was four years ago when diagnosed. My levels are all at low normal with the exception of ANC and it is at 1500, almost low normal. Sooo... I am just sitting around living life until something more goes south. She still hasn't had any treatment.

Tim failed 2-CdA twice. Then he started the HA-22 clinical trial, but had to back out of it after building up immunity to the drug. Krietman at NIH recommended 2cda+Rituxan, Army Doctor #1 recommended wait until I get worse. With his primary doctor (a third), Tim decided it was too early for another round of 2-CdA, only a year out from his 2006 treatment, with his bone marrow still recovering. So he and his primary doctor went with ritux. Considering the fact that Rituxan does not work very well in patients with marrow that is 50-100% involved, I asked to start early, rather than late and hit the HCL while it was not as established in my spleen and marrow. Sept-Oct 2007 I received 8 weeks of Rituxan. At the start I had so-so counts and knew my marrow was around 15-20% involved with HCL. I am doing pretty well right now. I tolerate the Rituxan very well, no real side effects, so that is also a contributing factor to deciding to continue to get treated with Rituxan to try and maintain my current condition and try and keep the HCL from regaining a foothold.

Finally, John got his diagnosis 14 years ago. He's done 2-CdA five times. Since 2002, I have been out of remission and have tried Rituxan. Rituxan does not have serious side effects, except while it is being administered. You can develop rigors. You have chills and shake. I did. I stayed home from work the next day and then resumed working.

Basic advice: Ignore the bone marrow. Watch your counts. You can live nicely with low counts. I have. I am never sick. This is a chronic disease. Once your ANC gets down to 1.0, it is time to treat. If your platelets get below 100, it is time to treat.

Don't make yourself crazy with this disease. I know now that I often embraced anxiety and fear in the past. Today I am much more relaxed about living with HCL.

All this experience is worth a million times more to me than dry statistics from the medical literature. Sometimes I think the Internet's an act of God. It's a complete miracle for people like me. With a disease that affects only 600 Americans a year, how else would I ever find the others?

Next post: how to decide.

Fear

Bad news today. My biopsy results came in, and they don't look very good.

Hairy cells still make up 5-10 percent of the bone marrow sample. That's a remission, but only a partial one, and not a very good one at that.

Next stop, another visit with Dr. B on March 3. We'll discuss whether to do a round of rituxan, or whether to wait and watch for symptoms. Usually rituxan is a series of 4-8 weekly treatments. Each infusion takes a few hours. Side effects can be very serious.

At times like this — as if I'd ever had a time like this before — it helps me to remember the Litany Against Fear, from Dune:

I must not fear.

Fear is the mind-killer.

Fear is the little death that brings total obliteration.

I will face my fear.

I will permit it to pass over me and through me.

And when it has gone past I will turn the inner eye to see its path.

Where the fear has gone there will be nothing.

Only I will remain.

Biopsy

• Hemoglobin 13.2 (normal 14.0-17.3)
• Absolute neutrophil count 2.2 (normal 1.4-7.5) — NORMAL
  
• White blood cell count 3.1 (normal 4-10)
• Platelet count 200 (normal 150-450) — NORMAL

Yesterday I had my followup bone marrow biopsy, or "BMB," as they call it around the Cancer Center. I'll get the results on Friday, or Monday at the latest. They'll tell me whether I've had a CR (complete remission, with no evidence of disease even at the molecular level), a GPR (good partial remission, with up to 1 percent hairy cells visible on flow cytometry), a PR (partial remission, up to 5 percent hairy cells), or — worst case, very rare — no real remission at all.

Dr. B's assistant, Ms. I, did the biopsy. Not quite as easy as last time, partly because she was teaching a student to do the job.

First Ms. I injected lidocaine deep into the upper part of my hipbone, just above the waistline on the right side of the back. This is the worst part, because you can feel the needle. (I don't really understand how a needle can penetrate bone, but it does.) The lidocaine burns like the fires of hell, but in a few seconds you're numb.

Next came the aspiration (narrow needle, for pulling out a fluid sample). Pressure, probing, pain, but not too awful. I just kept on breathing, trying to stay Zen. At the first biopsy in October, they couldn't aspirate at all, even though they tried three times, because the matrix of hairy cells was too thick. This time, it went well, and Ms. I had no trouble sucking out a cubic centimeter of fluid.

After that came the core sample (thick needle, takes out a 1.5 centimeter, narrow, circular core of bone plus bone marrow). These really f-ing hurt. This time Ms. I showed the student how to do it, guiding her hands. The night before I'd heard a doctor friend talk about learning to do this 25 years ago. Now it was my turn to sacrifice my body for the good of the profession. They have to learn somehow.

The student's unconfident, tentative pushing and wiggling actually hurt much more than Ms. I's firm, expert tapping and pressing — but at least she didn't push right on through to sample my kidney instead. Her lack of expertise showed up when they looked at the sample; she'd broken it in half, making it unusable. So Ms. I had to take another core. That's still better than last time, when they did three tries at an aspiration and two core samples — five stabs in all.

Today I feel like I've been kicked in the back with a steel-toed boot. Fortunately it's like a bad bruise, only hurts when I sit down wrong or try to twist too much.

Had more blood tests, too. Results are mixed. Hemoglobin and red cells are still climbing nicely. According to UM standards my hemoglobin's even normal now (at 13.2), since they use 13.0 as the bottom of the range. But the WHO standard for normal hemoglobin in men is 14.0, so I'm hoping it'll climb a bit more (and it should since my red cell count is still slightly low). Around mid-March I expect it'll all flatten out.

On the other hand, my white count is subnormal again. Not terrible, but still low. Could be (said Ms. I) because I've got a cold right now; tends to bring the white counts down. She didn't see a reason to worry about it. So I won't. Or at least I'll try.

Waiting for Friday's test results now... nervous but hopeful.