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.