changed title: Resourcefulness

Robert is doing very intensive research on PVNS and Imatinib. He is collecting data and connections for presenting on my behalf to have it prescribed for me. He actually came across another drug substance that also has been used against the PVNS tumors successfully. He has been staying up all hours of the night to save my limb, and possibly my life. The first thing I am quoting here is a study done with this other medicine, called "Infliximab"; this is from a journal article Robert came up with after many hours of searches:
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BACKGROUND: Pigmented villonodular synovitis (PVNS) is considered to be a neoplastic-like disorder of the synovium histologically characterized by villonodular hyperplasia, resulting in dense fibrosis and haemosiderin deposition. The pathogenesis of the disease is still unknown. CASE REPORT: A patient presented with severe treatment resistant PVNS of the right knee joint. Several conventional treatment regimens, including open surgical synovectomy and intra-articular injections of yttrium-90 ((90)Y) failed to control the disease. After finding marked tumor necrosis factor alpha (TNF alpha) expression in arthroscopic synovial tissue samples, treatment with an anti-TNF alpha monoclonal antibody (infliximab) at a dose of 5 mg/kg was started. Additional courses with the same dose given 2, 6, 14, and 20 weeks later, and bimonthly thereafter up to 54 weeks, controlled the signs and symptoms. Immunohistological analysis at follow up identified a marked reduction in macrophage numbers and TNF alpha expression in the synovium. DISCUSSION: This is probably the first case which describes treatment with TNF alpha blockade of PVNS in a patient who is refractory [does not respond] to conventional treatment. It provides the rationale for larger controlled studies to elucidate further the efficacy of TNFalpha blockade treatment in refractory PVNS.
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This next letter is a result of correspondences with an orthopedic oncologist (oo for now on- too long to keep writing out!) in Texas. This oo is in the middle of Imatinib treatment with a PVNS patient, and the patient's tumor is responding well. It shrunk in the time period of 6 weeks so far. We have also been in phone contact a few times with this patient, himself. So Robert wrote to his clinic (Baylor Oncology Outpatient Clinic), and this is what he wrote:

I spoke with Dr. Mennel a couple of weeks ago, however, the story has taken a twist in that the planned hip arthroscopy was postponed due to the surgeon's concerns about the efficacy and safety of the surgery. The postponement happened last week when the surgeon saw the gaping wound left by debridement 2 years ago for NF (yes, two extremely rare diseases in the same area), combined with his examination of the MRI taken a few months ago. Consequently, we are interested in pursuing imatinib treatment in tandem with or possibly as a replacement for surgery on the affected hip, which may ultimately be determined to be inoperable in any case.

The problem right now is that Israel has fairly tight rules that dictate that medicines be prescribed only in accordance with the national "basket of medicines". Imatinib is on the list, but is not indicated for PVNS. Right now we are wondering if the laws in Texas and/or the U.S. explicitly allow imatinib for PVNS. Confirmation of such would allow us to appeal to the Israeli Health Ministry for an exception to be made, as well as helping us to apply to our private insurer, and even to Novartis [drug manufacturer], which sometimes donates their medicines to people who cannot obtain them in their country.

So could you ask Dr. Snoots (or Dr. Mennel) if there is an official and explicit linkage of imatinib and PVNS, or perhaps a general approval for use of imatinib with tumors expressing CSF1?
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Lets pray for Robert's continued strength and drive, and for immediate answers and solutions.