Tuesday, January 13, 2009


The following is a rough timeline of what happend and when.
9/4/08 - annual physical (Dr. Morledge) w/ bloodwork - identified total protein level of 9.2. Doc proceeded to ask if I was taking any supplements, am I having any bone pains, etc. This blood spike (and the recurring spike as we move forward) was the first identifier that something was going on. The protein spike ended up as being an MGUS (monoclonal gammapothy of undefined significance).
9/24/08 - repeat blood work - total protein level 9.0
9/24/08 - frantic call to family doc (Dr. Ayers) who opened up a wealth of knowledge and details from a friend's (a very educated friend's) perspective.
10/2/08 - referral to Hem/Onc (Dr. Spaccavento) - bloodwork identified protein level of 9.4
10/6/08 - 24 hour urine test - no protein present, nothing alarming.
10/11/08 - skeletal study (x-ray) done - nothing of specific pertinence reported
10/21/08 - bone marrow biopsy done (Dr. Spaccavento) - general take - 30-40% of plasma cells identifying as plasma cell myeloma or multiple myeloma
10/21/08 - start the calls to family - the "network" gets started and I've got contacts at all the major health/cancer centers worldwide - gotta love the network!
11/24/08 - Cornell Weill - Dr Niesvizky - consultation
12/15/08 - Sloan Kettering - Dr Hassoun - consultation
12/16/08 - PetCT scan done at Lenox Hill Radiology - nothing specific identified in report
1/12/09 - Dana Farber Cancer Institute - Dr Richardson - consultation

  • identified increasing anemia rate
  • identified chromosomal issues w/ 17, 13 (not brought up by anyone else)
  • noted potential thinning of bone in sacrum and wanted to evaluate node on thyroid to identify if that may be causing any bone thinning.
  • suggested protocol at DFCI but can't participate due to distance
  • recommended starting RVD (Revlamid, Velcaid and Dexomethozone) off protocol.
  • want to check w/ Dr Jagganath (St Vincents) to see if he has a protocol in place using RVD as a backbone. Setting appt w/ Dr Jagganath.
1/21/09 Meet w/ Dr Spaccavento - need to schedule MRI (look at spine, pelvic region and saacrum). Also got scrip for bone strengthener (bisphosphonate). Not yet started that process.
1/23/09 Pneumovax vaccine (protect against pneumonia I believe)
1/24/09 Pnuemovax vaccine kicked my proverbial *ss. "the following side effects may occur..." - they all did!
3/9/09 Met w/ staff at St Vincent's - initial visit, outlined time frame for starting the RVD regimen. Expect process to start in 2-3 weeks.
3/12/09 Call from St Vincent's re; lab results. Levels weren't crazy and they found discrepancies in some of the paperwork (additions to 17p chromosome, not deletions, low iron levels, etc.) and they want to investigate before making a decision. Spoke to Docs at DFCI, still of the opinion that something exists, set another meeting with St Vincent's.
4/8/09 Tests at St Vincents - most levels are normal, spike in protein and first spike in calcium levels. Recheck on 4/10 to consider going on Zometa.
4/10/09 protein back down, calcium in normal limits - consider new protocol being implemented at St Vincents.
4/21/09 Appt at St Vincent's to sign protocol/clinical trial paperwork and have initial baseline tests done: biopsy, 24-hour urine, skeletal xray, bloodwork, etc. Based on these tests I'll be able to start the protocol.
5/5/09 Got first package of TBL-12, the 'product'. Tomorrow I begin taking the sushi-shots!
6/2/09 first month review, bloodwork, check posting from 6/3/09 for details.
7/15/09 First time getting Zometa - bone strengthener - hit me like a truck!

8/10/09 DFCI follow up visit and IGA counts hit 4k for first time.
9/21/09 SVCCC follow up visit and IGA counts hit 4k again
10/19/09 follow up visit at SVCCC - although IGA was down to 3.8k TotProtein and Calcium both spiked - moving to an RVD regime
10/30/09 Begin Cycle1 of Revlimid, Velcade and Dexamethazone.
11/20/09 Begin Cycle2 of RVD - massive drop in IGA and Lambda numbers - into normal as of Cycle2
12/11/09 Begin Cycle3 of RVD
1/1/10 Begin Cycle4 - only VD this time in prep for harvesting
1/29/10 Start of harvesting - take Cytoxan
2/3/10 Neupogen injections begin - carry on through 2/7/10
2/5/10 surgery to insert catheter for harvesting
2/8/10 harvesting begins - collect 9mm t-cells in first day (target 10mm). Two days of harvesting total. Also, cold from that weekend develops into a light fever, spend night at SVCCC to get antibiotics and monitor to make sure it doesn't develop into Pneumonia.
2/13/10 hair begins to fall out - finish the job on 2/14/10 with my clippers - now bald!
3/3/10 neuropathy still bothering me (apparently from the Velcade).  Been taking Lyrica, added Nortriptyline and was given a pain med, Delaudid, to assist.
3/8/10 Started Maintenance cycles consisting of Rev (25mg)/Dex(20mg), 21 days on, 7 days off.  Got off the Delaudid as soon as possible - making me too ditzy!  Keeping on Lyrica and Nortrip - see posts for details
5/3/10 Started 3rd cycle of maintenance, dropped Dex to 10mg.  Still having PN issues but no longer pain (more numbness)

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