Michael & Robin Tuohy - Founders/Leaders of The Connecticut Multiple Myeloma Fighters Information Group. Michael was diagnosed in September, 2000. Age 36. Our children were 2 and 7 years old. IGG Lambda. Bone Involvement. Oligo Non-Secretory.
Doctors - Ruben Niesvizky (NY Presbyterian/Cornell); Brian Durie (Cedars Sinai); and Joseph Bowen (Harold Leever Cancer Center, local oncologist).
September 2000 - presented with plasmacytoma to sacrum, destroying 2/3rds of sacrum. Low dose radiation to sacrum to shrink tumor. Harvest and collection of stem cells for possible future autologus stem cell transplant. High dose radiation to eradicate tumor. (Note: high dose radiation compromises stem cells). Started Aredia (bisphosphonate) 1 X per month. Monitoring blood/urine monthly.
Winter 2002 - started breaking rib bones. Disease became oligo non-secretory. SPEP/Immunoglobulin test not indicative of myeloma activity. (Freelite test not yet available). Began preparation for autologus stem cell transplant using dexamethasone alone. 40 mg 4 days on/4 days off.
September 2002 - Autologus Stem Cell Transplant at New York Presbyterian/Cornell (Dr. Ruben Niesvizky). Only complication: allergic to all antibiotics (fevers of 105+ for 5 days). Discharged home without any antibiotics. Complete Remission. No maintenance therapy. Bisphosphonates monthly (aredia).
Fall 2004 - Novel surgery to sacrum using kyphoplasty. Rods, pins, connecting right illiac wing (hip) to sacrum, kyphoplasty to stabilize sacrum/spine. Note: Kyphoplasty is not FDA approved for use to the sacrum. Complication: Kyphoplasty leaked out of sacrum and into sciatic nerve canal.
Summer 2005 - Freelite test indicating myeloma is active again. Relapse.
Fall 2005 - Started Expanded Access Program Clinical Trial of Revlimid (25 mg 21 day cycle) and Dexamethasone (40 mg 4 days on/4 days off) with adult strength aspirin daily. Month 4 of cycle suffered blood clot. Started on daily warfarin - stopped aspirin. Spring 2006 numerous hospitalizations due to low immune system and catching numerous colds,flu. Reduced Revlimid to 20 mg (21 day cycle) and Dex to 40 mg (once per week). September 2009 dose reduction to Revlimid 15 mg (21 day cycle) with Dex 20 mg every other week. Stringent Complete Remission!
Summer 2007 - Myeloma Mobile Trip across America!
Current Treatment as of September 2010: Revlimid 10 mg (21 day cycle) with Dex 20 mg every other week. Warfarin, lorazepam, pain medications. No bisphosphonate therapy (see new Bisphosphonate Guidelines). Weekly INR and CBC to monitor viscosity of blood as well as counts. Monthly Immunoglobulin and Freelite blood tests. Annual PET/CT. Fall 2010 developed spinal meningitis; but not related to myeloma and no mm complications. Started IVIG therapy to help immune system.
Lots of "little stuff" in between all the myeloma, but I think this gives you a pretty good picture of my myeloma!