Monday, July 20, 2009

A recap for those who are just joining us.

I'm going to give the run-down of the last year, just in case someone is joining us for the first time here. You can most easily stay connected to this unfolding journey with over 11,000 people through Facebook by clicking here, then clicking "Like". We also use the Cancer Kicker Foundation Facebook Page as the forum to share stories, questions, encouragement, hope
and stay connected.
July 2006: At age 25 Phil gets a pulmonary embolism and is put on the blood-thinner Coumadin.
2007: Phil gets two more blood clots, this time in his legs, after going off of Coumadin. He goes back on both times. All genetic testing to date returns negative...no one at this point knows what is causing the blood disorder.
June 2008: Several friends recommend seeing a hematologist. Eventually, we ask for a referral and get one to a hematologist and are sent to the University of Michigan and testing commences.
Beginning of July 2008: Phil's tests for genetic abnormalities such as Factor V Leiden come back negative. Phil's total protein is slightly elevated. Like a tenth of a point. The hematologist refers him to an oncologist. Wha-wha-what?
End of July 2008: The oncologist does more testing, including a bone marrow biopsy. He mentions MGUS and Multiple Myeloma as possible culprits (we'd never heard of either one), but believes we're dealing with MGUS. Doctor goes to Poland for two weeks as we get the results back from the lab. Our med student friend helps us interpret the results... 11% plasma cells in the marrow, which means smoldering myeloma, not MGUS.
August 2008: We get the official word from the oncologist that this is, in fact, smoldering myeloma. Other than the blood clots, which no one will claim are a result of his myeloma...yet, Phil is asymptomatic so the plan is to watch and wait (review blood work every 3 months). We are told that perhaps it will take several years to begin progressing, and others tell us it may not progress at all. Google tells us Phil has less than five years to live. Phil celebrates his 28th birthday.
July 2009: We traveled to Little Rock, Arkansas for a second opinion. It is determined that Phil has several areas of concern on his bones (rib, femurs, several vertebrae, and ilium) as well as a couple of recurring infections, which is now considered by many to be an indication of symptomatic myeloma. His numbers have done a steady climb in the wrong direction. All of this indicates that he is ready to begin treatment.
August 2009: We decide to stay at The University of Michigan for treatment. Then we decide to go on vacation before treatment begins.
October 6th 2009: Phil started chemo treatment of Rev, Velcade, Dex, Doxil (RVDD)
October 9th 2009: First Doxil infusion
October 12th 2009: Week 1 Complete! (watch video)
March 1st 2010: Chemo Complete (7 cycles of RVDD) (watch video)
March 17th 2010: Cytoxan and Blue Hair
March 29-30th 2010: Stem Cell Collection (watch video)
April 5th 2010: Melphalan
April 7th 2010: First Autologous Stem Cell Transplant
April 20th 2010: Released from hospital
June 23rd 2010: Second Autologous Stem Cell Transplant
September 7th 2010: Start of Consolidation Therapy (target 4 cycles of RVD)
October 9th 2010: Phil recognized as the Honorary Captain of the MSU Game (watch video)
November 9th 2010: Begin of cycle #4. Medical staff discusses adding two additional cycles; we decide to go for it. Phil is feeling pretty tired in the afternoon/evenings.
January 2011: Beginning of maitenance therapy, 10mg Revlimid. M-spike at 0.1.

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