Thursday, October 29, 2009

Miracles Happen!!!

Good news! I had a bone marrow biopsy (BMB) and blood tests on Monday and Dr. K says my critical blood counts are all above the minimum thresholds for remission (even if the platelets and neutrophils are below the low-end normal standards). For remission, they use a platelet count of 100K vice 160K. For neutrophils, they use 1.5 vice 1.73. Still, we must get the results of my flow cytometry to determine the level of malignant cells still in the peripheral bloodstream before we can say for sure that it's a complete remission (CR).

The percent infiltration in my marrow is now 30% -- down from a peak of 80% one month after chemo. This is great news, but the level of infiltration is still very high, and I wouldn't be surprised if I relapsed within 20 months. I want to do something about it -- take Rituxan and eradicate it. Unfortunately, I believe the presence of disease in the marrow is used as a control for comparative analysis, not as a qualification for determination of Minimal Residual Disease (MRD) and treatment with Rituxan.

MRD testing is still in its infancy and uses less invasive flow cytometry of peripheral blood in lieu of bone marrow biopsy. Flow cytometry of bone marrow aspirate (BMA) can also be performed, but that is invasive. The goal is to make bone marrow biopsies after the first chemotherapy treatment for Hairy Cell obsolete by developing reliable hyper-sensitive MRD tests along with some other proprietary techniques. Hence, if my flow test does not show MRD, treatment with Rituxan will wait until it does, even though we know there is still significant disease in the marrow. This means the number hairies in the marrow may increase, although they very well may continue to decrease at this point.

The truth is I want my flow to show MRD so I can zap the hairies in the marrow ASAP. If the hairies in the marrow are continuing to die off, then the Rituxan will accelerate the process. If they have already nadired and are on the way back up, then I definitely want to hit them while they're still down.

Now for the bad news. They want more bone marrow aspirate before they treat me with the Rituxan so I've got to go back in for another bone marrow aspiration. That'll be my fourth in the past 7 months. I'm anxious to do it though, because I think there's a good chance it will help a lot with evaluating MRD in the future.

Here's a plot showing a very dramatic increase in the number of neutrophils since last week:



The NCI threshold for remission is 1.5. As you can see, my neutrophils are now at their highest level since I've been collecting CBC data. I'm very relieved, but I'm ready to keep going.

I'll keep you posted.


Update: I just received the peripheral and BMA flow results. The percentage of hairies in the peripheral bloodstream is down to .2%. The percentage in the marrow aspirate is 4%. Thus, MRD has been detected at 6 months post-chemo. I'll go in for another BMA procedure on Monday. The current plan is to see if the BMA hairies will clone before starting Rituxan. This will take a week, so we'll hold off treatment until November 9th.

Tuesday, October 20, 2009

Live Hard

We've finally reached the 6 month post-chemo mark, and I'm feeling good. Since last month's post, I've had two CBCs and blood chemistry tests with some very interesting anecdotal evidence regarding caffeine and blood counts.

After my testing in August, I blogged about some research which indicated that caffeine can lower TNFa levels and hypothesized that since some research indicates that HCL apparently thrives on TNFa, maybe drinking coffee and consuming other TNFa lowering foods may improve or sustain my response.

The results from August to September were markedly improved. Upon seeing my liver function test results in September, I stopped taking the neurology drugs for my tinnitus and stopped drinking coffee and omega-3 supplements (fish oil has also been shown to lower TNFa). I was asked to come in two weeks later (September 29th) for a another blood sample so they could try to clone my hairies for PCR one last time before Rituxan treatments start, and they offered to do another CBC and chemistry as well (Nurse R went out of her way to arrange this for me). As shown in the plots below, my red counts, platelets and ANC all decreased in the two weeks between September 14th and September 29th, when I had ceased the coffee, chamomile tea and fish oil.

After getting the September 29th results, I decided to start taking the coffee, tea and fish oil supplements again before my next test, which was today. As you can see, there was improvement in all the counts from September 29th to October 23rd. Obviously this data is only anecdotal but nonetheless interesting in that it correlates with the presence of the anti-TNFa beverages and supplements.









Anyway, I'm now the proud owner of a Keurig single cup coffee brewer. I may even buy one for my office so I can avoid the battery acid that they try to pawn off as coffee. During the daytime, my co-workers know me as mild-mannered Mr. Coffee, not knowing my secret identity -- Java Man -- killer of hairy buggers everywhere (at least the ones in my bone marrow).

Tomorrow, I go in for my 6 month MRI, and my bone marrow biopsy (BMB) is scheduled for Monday, the 26th. Assuming it will take a week to get the pathology report, I expect to start Rituxan either Monday November 2nd, or the following Monday, November 9th. The first round will be administered over an 8 to 10 hour period, and I'll stay at the hospital overnight to make sure I don't have any adverse reactions. Many patients develop fever and vomit during the first round, but most respond with minimal side effects. After the first round, the time to administer subsequent rounds decreases to around 4 hours.

With respect to my daily activities, life is as normal as it's ever been. I haven't had a nose bleed in months, and even though my neutrophils are low, I still engage in pretty much all the activities I would have were I HCL-free. I try to bike 8 miles on Tuesday and Thursday and anywhere from 18 to 20 on Saturday. We've been to several county fairs and recently took Claire to a local Fall festival where we saw pigs and milking cows, rode slides and took a hay ride. I've added some pictures for everyone to enjoy.







Likewise, I'm pleased to announce that baby #2 is now on the way and doing very well -- just in time prior to starting the Rituxan. Once the Rituxan starts, natural conception must be avoided for at least 1 year. In the immortal words of Andy Dufresne: "Get busy living, or get busy dying." I choose to live hard.