Thursday, May 28, 2009

Just the FACS m'aam

FACS: Fluorescence-Activated Cell Sorting

FACS is a precise technique which is able to individually differentiate cells taken from the peripheral blood stream. It examines each cell individually, then categorizes it. It works by aiming a beam of light at a droplet containing a single cell and then examines the reflected light pattern. The light pattern is unique to the various types of cells in the bloodstream; thus, each cell can be categorized. It's able to examine millions of cells over the course of several hours.

One of the advantages of participating in the NIH HCL clinical trial is that in addition to the weekly CBCs, my blood is periodically examined using this form of flow cytometry. It's able to identify the individual hairy cells and determine the hairy cell numeric density in my peripheral bloodstream (the blood in my veins, not the marrow).

Because of the number of patients and hours required, it takes awhile to prepare, run and get the results of this test. I just got the latest results from blood drawn on 5/20, and the results are very promising. The table below gives a summary of the hairy cell numeric density before treatment, on Day 4, and 3 weeks post-treament.

Date FACS HCL count
4/20/2009 78.5
4/27/2009 40.1
5/20/2009 4.1

This means the density of hairy cells in my bloodstream is almost 1/20th what it was prior to treatment. The cladribine has definitely had an impact on the blood in my veins. Let's hope it's only a matter of time before the marrow shows similar progress!

The hope is that in 3 weeks, the number of cells will be immeasurable using FACS and a cloning technique known as polymerase chain reaction (PCR) will be required to find the hairy cells. The PCR technique being used at NIH is very sensitive -- able to find 1 hairy cell from 1 million regular blood cells. Prior to accepting me into the trial, Dr. K had to verify that they could develop PCR primers specific to my cells and then clone my cells in a reasonable amount of time. This highly sensitive technique will allow them to identify the faintest amount of minimal residual disease (MRD) and treat it with Rituxan at the 6 month post-chemo epoch or any time MRD is detected thereafter, according to the protocol.

Side Note: Interesting news for those of you dealing with solid tumors. I read another article on Grape Seed Extract today. This one discussed how it has anti-angiogenic properties. It arrests signals that solid tumors use to grow veins to nourish themselves, thus causing the tumors to starve to death. Here's the link.

Tuesday, May 26, 2009

The Good, The Bad, and The Ugly

The Bad: I lost a total of 8 pounds from Friday the 15th through Saturday the 23rd. It all started with bone pain and muscle aches around 5 o'clock that Friday. At work, I had to hunch over when I walked and take small steps. I went straight to bed when I got home and took my temperature, which was 98. Not too bad for me since my normal temp is 97. By 8 o'clock I felt like I was burning up so I took it again and it was 100.1. Nothing too alarming, but given how abnormal it was, I called Dr. K to find out if I should be concerned. He didn't think so and told me to call him in the morning if it went above 101. It didn't, but for the next few days, it kept oscillating between 99 and 100.5. I lost my appetite and didn't eat much between Friday and Wednesday. I felt better on Thursday and Friday, but still wasn't feeling as good as before. By the time I got around to weighing myself on Saturday the 23rd, I had dropped 8 pounds.

The Ugly: On Wednesday the 20th, I went in for my 1 month post-chemo bloodwork and bone marrow biopsy. The CBC results showed the overall WBC count hadn't budged in 10 days, which was very dissapointing; however, my neutrophils did edge up a little bit -- from 450 to 680. My platelets remained at an intransigent 105 (same as 10 days before). Then came the BMB. They took it from my left hip this time. It was a dry tap. No marrow (the jelly-like plasma inside my bones) could be aspirated. This scared the Hell out of me. I thought for sure that plenty of hairy cells would have been killed off by now and the marrow factory would have been back in some degree of production. After all, my CBCs since chemo had shown some progress even if the past 10 days were marginal, but then again, maybe everything in my blood was just settling back to the pre-chemo levels. After augering out the core, they tried to aspirate marrow four times to no avail -- it came up dry each time. On the 4th try I could really feel it burn. "You're almost there," I said, but they gave up because they didn't have a longer needle to go any deeper.

The uglier: Today I got the biopsy report for the core sample. It read "80% infiltration." Eighty percent? That's more than when I was diagnosed back in March! What the Hell is going on? "Don't worry about it" they tell me. "Sometimes it takes months to respond." Then why do you take the BMB at 1 month? Can you take another one next month? "No." Why not? "We'll take another one in 5 months." I'm confused and to top it all off, my total cholesterol is at an unbelievably low 71 mg/dL. Most people are happy if it's below 200, but I don't think my level of 71 is something to be happy about because my HDL (good cholesterol) is only 18. This is a dramatic drop from 28 just a month ago. A healthy level is 40 or above with a low risk target of 60 or higher. Dr. K admitted he doesn't know much about the cholesterol/HCL relationship and doesn't seem interested in pursuing the subject. He attributes my low level to inactivity, but didn't bother to ask me what my activity level has been. I haven't changed my activity level at all, other than getting sick for 4 days. With the exception of the sick days, I've either done 2 mile walks, or worked out for 30 minutes on the elliptical and exercise bike every other day. My request for a referral for a specialist who can help me went unanswered. I suppose that sometimes research scientists are so focused on one aspect of a disease that they can't be distracted by patients various requests, or they simply forget.

The good: My brain MRI was negative. There was a small signal in my front right lobe, but my neurologist assured me that this is very common and nothing to be concerned about. My tinnitus appears to be idiopathic, so he prescribed a sedative that may help to address the symptoms. Overall, it's helped me sleep, although I did awaken to a sharp single tone the other night. I had another CBC today. The white count edged up to 1.42 from 1.28 over the past 6 days. The platelets are now at 136, which is a number my body probably hasn't seen since November 2007. The absolute neutrophil count (ANC) is back up to 800. Something must be working. Hopefully, whatever it is, it's working on the marrow and not just the peripheral blood systems, but the BMB report is inconclusive at this point. For now it's just a game of "hurry up and wait."

My next CBC is in two weeks.

Saturday, May 16, 2009

Back to Work...

Sorry it's been awhile. I started back at work this week and haven't felt like updating the blog.

I got my CBC results back on Monday. The WBC count is up from .97 to 1.29 of which my neutrophils more than doubled from 190 to 450. My platelets are up to 105. That's all good.

I've been suffering from tinnitus (ringing/buzzing in my ear) in my right ear since mid-March, and it seems to have gotten louder and more annoying over the past month. Sometimes I awaken in the middle of the night to loud ringing in my ear. As I sit here typing, an annoying white noise is resonating in my head.

To make sure the tinnitus isn't due to anything more serious, I went to see a neurologist in early May and had an MRI done this past Thursday (5/14). I'll get the results next Thursday. The tinnitus is probably due to getting older and nerve damage I've incurred from prior ear infections (no thanks to the HCL), but I just want to be sure nothing else is going on.

Ever since the MRI, I've felt weak and achey in my bones. I still do now. At work, I had to shorten my gait to reduce the pain when I walk, and I had a mild fever all night last night and felt miserable -- kind of like a fever combined with growing pains. I usually read 96.5 to 97.1 on the thermometer, but popped up to 100.1 and stayed there until this morning. I completely lost my appetite. Up until Thursday, I was eating around the clock just to maintain my weight. I definitely think I'm burning a lot of calories keeping the marrow going. Dr. K. thinks my marrow may be working in overdrive right now and causing the bone pain. He didn't seem to think the fever was due to an infection but told me to watch it and call him if it goes over 101.

Aside from the leukemia, I've also noticed that in the 3 months since I've gone gluten/wheat and peanut free in my diet, I haven't had a single canker sore (mouth ulcer). Canker sores used to be a common occurence. I used to get one every 2 to 3 weeks prior to going gluten and peanut free. They were incredibly painful and made brushing my teeth a nightmare as the bristles would scrape over the ulcer and agitate it even more so it wouldn't heal. Here's an article which discusses the causes of canker sores, which includes peanuts and gluten sensitivity.

I go back to [the clinic] this Wednesday for a CBC, abdominal ultrasound, EKG, bone marrow biopsy and clinic appointment. It'll last the better part of the day.

Monday, May 4, 2009

Killing Tribbles

I had my blood tested this morning and got the results this afternoon...

Q: Is there anything lower than absolute zero?
A: Yes, my white blood cell count!

I've been feeling great ever since I had my last chemo 1 week ago, but my white blood cell count has definitely taken a beating. In particular, my absolute neutrophil count has tumbled from 1.05 down to .19. The normal range is 1.78 to 5.38. Dr. K says that this is to be expected with the Cladribine, so nothing too unusual, and it looks like the type of pattern that suggests a path to remission. In fact, he doesn't see any reason why I shouldn't return to work since most infections in HCL'ers are from internal pathogens. He recommended avoiding crowds and direct contact as much as possible. I'll verify this with my regular hemonc just to be on the safe side. I suppose I'll have to put off the County Fair 4H pig wrestling fund raiser until next year...

Overall, the composite WBC count nose dived from 2.34 down to .97 over the past week. The normal range is 4.23 to 9.07. Dr. K. indicated that days 12 through 17 are typically the low points for all counts, so these should start to level off and come back up starting next week. I've read so many horror stories from fellow HCL'ers posts that I'm not sure if I should go back to work or wait out the next week, but Dr. K doesn't seem to think work will be a problem. If I get a fever (which I haven't yet), I should just give him a call, and they'll bring me in and treat me.

The good news is that my red cells and platelets didn't budge. I guess that's why I feel so good. Dr. K has a feeling that I'll recover faster than most.

Anway, nothing clear-cut at this point, but nothing abnormal either. I've got my 3M 1860S surgical masks ready regardless... (got 'em on Amazon for 1/10th the regular price before they became the official mask of the 2009 Swine Flu Epidemic).