'Shrooms and Stuff

Bummer. I started taking medicinal mushrooms in the hope that it would stimulate certain anti-cancer cytokine production including tumor necrosis factor (TNF) and various interleukins by my immune system to see if that would reduce the HCL tumor burden; however, it looks like HCL may actually proliferate in the presence of TNF based on research by Barak, Nisman, et al (see Tallman and Polliack, 'Hairy Cell Leukemia', pp. 107 - 123). Using mushrooms (or any other method) to secrete more of these cytokines may be a bad thing.

This same research indicates that hairy cells may have a decoy IL-1 (interleukin) receptor which binds IL-1 without inducing any effect, and "soluble IL-2 receptor levels were shown to correlate well with HCL tumor burden and disease activity...while levels clearly decreased during therapy [with Cladribine] and after clinical response."

There are many other interesting facts in this research article. In fact, hairy cells appear to secrete TNF and shed TNF receptors into the bloodstream. TNF has been measured in large quanities in HCL patients.

Conclusion: Unlike other cancers, it may be a bad idea to try to increase your body's TNF and interleukin production if you have HCL. HCL is very unlike other cancers and expresses a biochemistry which is uncommon and may proliferate in the presence of certain cytokines.

Per the April 9 test at my hematologist, my blood counts have not changed significantly, but that report did not include the level of differential detail needed to compare it to the tests run by NIH.

New results from the March 31 test: Dr. K evaluated the binding capacity of certain proteins expressed on the surface of the hairy cells (CD20, CD22 and CD25) to monoclonal antibodies being researched. The mean number of molecules of anti-CD20 bound per hairy cell was greater than 100,000. The mean number of molecules of anti-CD22 and anti-CD25 bound per hairy cell was 58,656 and 14,103 respectively. This bodes well for treatment with Rituximab (the anti-CD20 drug being used in my trial) as well as RL22 and HA22 (other drugs being researched by Scripps and NIH).

My neck and thoracic MRI from April 2nd showed some slight degeneration of the disc between my C5 and C6 vertebrae. This is the most common degeneration for any adult. The bone marrow signal is heterogenous (abnormal intensity) because I have HCL, but the spinal cord signal "shows normal intensity with no evidence of abnormal enhancement." No well defined lesions were identified. Nothing too unusual for someone with HCL.

One more week before the final round of testing and chemo begin.