2016-10-28

Valcade + Darzalex + Dexamethazone

Reference Info:


A routine week goes something like this:

  • Thursday 
    • 07:45 Labs including CMP and CBC, record vitals
    • 08:30 Oncology Physician consult + lab review + vitals review
    • Physician sign-off of days treatment protocol, adjustments made if required
    • 09:00 IV setup, catheter insertion
    • 09:15 100ml saline + steroid + anti-nausea + benadryl
    • 10:00 Pharmacy delivers 500ml saline + 55ml Darzalex
      • Darzalex drip started at 100ml/hr
      • Blood Pressure + Oxygen content measure
    • 11:00 Increase Darzalex drip to 150ml/hr
      • Blood pressure + Oxygen content measure
    • 12:00 Increase Darzalex drip to 200ml/hr
      • Blood pressure + Oxygen content measure
    • 13:00 Blood pressure + Oxygen content measure
    • 14:00 Abdominal subcutaneous delivery of Valcade ~2.26ml
      • Blood pressure + Oxygen content measure
    • 14:30 Line flush, catheter removal
      • Blood pressure + Oxygen content measure
      • (Done at clinic - go home)
    • 20:30 Daily meds + Dexamethazone
  • Friday
    • Likely no sleep from Thursday night unless HPK used and then only sometimes
    • Muscle and some bone ache
    • Fatigue
    • Feeling of physical "fragility", irritable
    • Distal neuropothy - mostly feet, some in large muscle area of upper leg
    • magnified weakness in hips
    • Spinal pain masked by dexamethazone
    • Little or no sleep
  • Saturday
    • Wash-rinse-repeat of Friday x 2
    • Intense fatigue
    • Intense irritability
    • Inability to focus
    • Depression like symptoms, slightly diminished cognitive function
    • Spinal pain masked by dexamethazone
    • Sleep finally comes sometimes with the help of HPK
  • Sunday
    • cognitive function back to normal
    • Spinal pain returns - no longer masked by glucocorticosteroid(dex)
    • magnified weakness in hips and lower back
    • mood stabilizes somewhat - less irritable
    • some intestinal disturbance
    • shortness of breath after minimal activity
  • Monday
    • Generally a good day
    • A bit weak yet
    • improved stamina
    • Spinal pain controllable
    • distal neuropathy evident but lessened
    • appetite about normal 
  • Tuesday
    • Wash-rinse-repeat of Monday
  • Wednesday
    • Best day of the weak
In addition to the above, there are two side-effects that showed up for me which sustain and do not diminish throughout the week:
  • Upper respiratory congestion.  The coughing is like to give one a hernia(anecdotal).
  • Nasal congestion.  Mostly, my nose runs continuously.
An inhaler does help with the coughing sometimes.


General History:
  • First obvious signs of disease: October 2012
  • First Diagnosis late February 2013
  • Confirmed Diagnoses ~May 2013 (see damage to spine, loss of 8 inches of height in ~45 days -> Select MRI Button at this link
  • Treatment - Radiation ~May 2013
  • Treatment - Revlimid ~ Late May 2013
  • Treatment - Autologous Bone Marrow Transplant - March 5th, 2014
  • Shingles January - March 2015, developed permanent neuropathy 
  • Relapse -  October 2015
  • Treatment - Surgery for osteonecrosis February 2016
  • Treatment - Change from revlimid to Valcade ~ Sept 2016
  • Treatment - Added Darzalex ~mid-September 2016
I am putting this here as my own reminder as well as in case someone runs into it and wants to know some things to expect should they end up with this treatment protocol.  The protocol itself is rather new as of this writing.  I am the only patient that is being treated this way by my oncology team at this point.  Adjustments are being made to help with quality of life as we go along.  For example, the dexamethazone schedule was initially 10mg/day for two days then a day off.  This was simply too much for me to handle.  The mood swings were unpleasant for me and everyone around me, not to mention the sleep schedule was impossible.   Thus, the team chose to go back to the 20mg once per week on Thursdays.  The point being that the darzalex/valcade combo can be adjusted.  No one is an expert at this stuff yet.  The FDA fast-tracked the protocol for whatever reason and clinical trials ended just shortly before my team offered the option up to me.

To be honest, the fact that it was offered up to me indicates two things to me, and this is just my impression: A) I am in good enough shape that the experts on the team think it will work and B) The failure of the previous treatment was serious enough in my case to make it worth taking the risk on a new treatment.  

Again, this is my impression.  The oncology team has been and is straight forward with me: They answer my questions honestly.  That said, cancer treatment is as much an art as a science right now.  I know the team does everything they can do to keep the message positive without withholding information nor spinning it.  In cases when they don't know, I believe they simply stay positive.  A very good strategy I think, and I appreciate it.  There are a lot of known unknowns in this cancer game.  What is known for sure is that no one walks away from multiple myeloma having been cured.  That is a simple fact.  I am alive because some very talented folk juggle a lot of variables, do a lot of research, collaborate with other professionals and ....well, care about what they do.  Underlying that, and even more fundamental to my quality of life, are family and friends who are supportive in letting me do what I feel that I need to do, while encouraging me when things are a bit tough.  I am blessed, lucky and grateful.

Enough said... I have shit to do tomorrow.....