3 Months Post-Chemo and Counting

It's hard to believe 3 months have passed since I underwent chemotherapy. I had my last blood tests on July 22nd, and the results were mixed. The good news is that about 99% of the malignant cells in my peripheral blood have been knocked down, and blood count-wise things are not getting worse (although I do have some questions about my T-cell ratios).

Each month the rate of reduction in the malignant cells has decreased by half. The first month 98% of the remaining hairy cells were destroyed, the second month 50% of the remaining hairy cells were destroyed, and the third month 25% of the remaining hairy cells were destroyed. I'm gonna go out on a limb and guess that this month 12.5% of the remaining hairy cells (of which there are very few) will be destroyed.

The bad news is that my blood counts aren't really that much better than last month. My white cell count is still about one-third of normal. Still, I've got 3 more months to improve, so I keep reminding myself I'm only halfway there. My liver function tests (AST and ALT levels) came back very high. I'm assuming this is because of the Clonazepam I've been taking to help me sleep, so I stopped taking it for the past week. I'll stay off it until I have my primary care doc do a liver function test next week.

I've lost about 16 pounds since chemotherapy. I simply can't eat enough while I'm at work to keep up with what my body needs. On the bright side, I'm back to working full days on some very interesting NASA science and technology satellites -- NuSTAR (to research the super-massive black hole at the center of our galaxy) and GLORY (to research Earth's aerosols, clouds and irradiance).

I'm really not too concerned about the low neutrophil count anymore. It seems to be slowly increasing, and from all accounts, I'm more susceptible to infections from germs already in my body than external pathogens. Christi, Claire and I went with our friends to the water park last week and had a great time splashing, sliding and playing in the water. I made sure to slather myself in sunblock spray to maintain my lovely pasty-white complexion. It's my sworn duty as leader of the Pasty Boyz.

The following charts show my blood count progress up to the last blood test:

Typically at 3 months, the WBC count is close enough to normal to warrant only testing the peripheral blood 3 months from now, but in my case, I need to go back in 3 more weeks (1 month since the last one).

On a good note, I can workout on my elliptical and exercise bike much more easily than I used to. About two weeks ago, I rode 20 miles on my exercise bike on interval training at about 75% of the bike's full resistance. I'm very anxious the get back to the Grand Canyon and see what I can do once my RBC recovers to a normal level.

Last June, I hiked an hour into the Canyon and it took me about two hours to hike back out. I had to stop and rest about every 200 feet to catch my breath and keep going up. At that point, I was already probably below normal on platelets, and I'm sure my red count was suffering too. Thank God my friends were there to share their water with me and keep me going.

It was exhilarating to make it out on my own two feet -- knowing that my friends were there to pull me through; but I was left wondering "How come it was so much harder for me than everyone else?" Certainly, sitting for 12 hours a day at work didn't help, but I kept wondering if something else was wrong. I wasn't really dehydrated, my legs just got tired really easily. Two days later, 4 people died when a medivac rescuing a hiker from the Canyon was trying to land and collided with another copter taking off from the Flagstaff Hospital. Without the right friends, that could have been me.

HCL and Secondary Cancers

A lot of the HCL blogs and discussion boards that I follow have patients who want to know more about secondary cancers, so I thought I'd do some more research into the subject.

An intensive study was conducted by NIH which examined the risk of secondary cancers in 3104 2 month + survivors of HCL. It found that the cumulative probability of a secondary cancer in 25 year survivors was 32%, but not everyone in the study lived that long. Most patients usually die of other natural causes first, but the finding is a major bummer for the younger than average patients like myself. Statistically, the mean follow up time with patients in the study was 6.5 years. Some died, some moved, some stopped participating out of apathy.
Standard incidence ratio (SIR) is a term used to compare the rate of a cancer among a particular group to the general healthy population; hence, for healthy average Joes, the SIR of a particular type of cancer is one. For HCL'ers, the SIR for Hodgkin lymphoma is 6.61 (6.6 times more likely to get it than a normal, healthy individual). The SIR for non-Hodgkin lymphoma is 5.03. Thyroid is 3.56. Lucky for me, the SIR for lung cancer is less than the normal population, coming in at only 0.63, but that's probably just due to the fact that people stop smoking when they find out they have leukemia -- a macroscopic trend which doesn't really transcend to individual risk reduction. Overall, the SIR for all secondary cancers over the HCL population is 1.24 -- or 24% greater than average.
In fact, HCL isn't the first cancer I've been treated for. I was treated for a basal cell carcinoma (BCC) in late July, 2007, so it's likely I've already experienced a secondary cancer from HCL even though it was treated prior to the official HCL diagnosis. BCC is a type of skin cancer which doesn't metastasize but can become disfiguring if left untreated. One of the nurses at NCI told me they tend to see more than the average number of skin cancers in patients with HCL. Be forewarned, I'm going to show you some pictures of my surgery below, so if you're squeemish, don't read on.
My BCC started as a persistent pimple on my left nasal ala -- mainly in the crease between my nostril and cheek. Over the course of several months, it gradually turned into a surface rash that sometimes bled when I showered -- cycling between healing and bleeding. At the time, my platelets were already down to the low end of normal, so this may have exacerbated the bleeding. Soon, I started feeling throbbing in the region and feared that veins to a tumor might be forming so I went in to get it checked out. With one look, my dermatologist knew she had to take a biopsy and sure enough the pathologist determined it was cancer.

As promised, here are the pre-close and post-close pictures from the Mohs surgery. Mohs surgeons are trained pathologists. This is required because the surgery is conducted in multiple phases to minimize cosmetic impact while ensuring that all the roots of the cancer are cut out. The surgeon uses a special dye to examine each sample of excised skin under a microscope and ensure that enough healthy margin exists at the edge of the cancer.

My surgery took 4 phases because it was rooted much deeper than anticipated. I was lucky that it was in the crease of my nose. The doctor did a great job, and most people can't even tell that I ever had surgery. It took extra long for him to cauterize my flesh and stop the bleeding, and he noted that to me when he did the surgery. That led to my Dr.'s appt. in October of 2007 which first noted that my platelets were at the low end of normal (140). Come to think of it, I think that's one of the reasons I demanded a CBC (or "the works" as I called it) at the time. Here's a link to a short video on Mohs surgery.

Anyway, I don't want to scare any of you HCL'ers out there, but you do need to be aware that you should take extra precautions, avoid the sun moreso than others, and live as healthy a lifestyle as possible after treatment.

My next blood test is in two weeks. I follow a lot of the discussion groups and many fellow HCL'ers who were treated at the same time as me are already in remission. I'm jealous but very hopeful that my blood tests will show significant improvement next time.