KDCEP Cycle 2

    About a month ago I wrote a blog which you may have missed called "The Calm".   There wasn't much to share, just that we were waiting, so I didn't post it to Facebook.  Since then Chris was able to get the PET scan (the second this year) we needed.   It showed that the first cycle of KDCEP had worked.   One mass had shrunk from 48x35 mm to approx. 8x18 mm.   A huge improvement!     As well the SUV (a measurment of how active) went from a 5.3 and down to 3.    The numerous masses in his lower abdomen had  "improved significantly" but there were small residual ones remaining.   

     So, we ended March by starting another round of KDCEP.    It again was a 4 day continuous infusion of chemo.   However this time we were able to complete it at home.   While daily trips to the main Huntsman were needed to change the chemo bag out for a new one, being able to sleep and simply be at home was a huge blessing.    They slightly increased the dose.   They also anticipated his blood numbers to drop to the point where he needed treatment, so we made regular trips for testing but, just like the first cycle, no platelets or blood was needed.

     One the 22nd, he had yet another PET scan.   We were both optimistic that this one would show that there were no lesions left, but there is still a persistent one.   It now measures 2.2x.8 and SUV of 2.6.  Chris had also said he would be willing to try a bone marrow biopsy again.   It was scheduled for the same day, but when the machine broke down before we arrived and they had to cancel our appointment. Chris took it as a sign and decided not to do it.   

     We met with Dr Sborov again last week.   He has suggested strongly that he wants to do a bone marrow transplant.  We both have reservations and aren't 100% that this is what we feel is the right thing to do.   It comes with significant risks.   He did also mention clinical trials as a possibility.   The two cycles of KDCEP came with tough side effects, but he was very pleased with how Chris was able to tolerate it without major complications and that the masses have shrunk so significantly.  

      We are so very grateful that it worked as well as it did.   But it did come at a cost.   His neuropathy (constant burning, numbing, stabbing and tingling pain) is much worse and now spreads nearly to his knees.   In addition it also affects two fingers on each hand.   It's very painful and has made many things a challenge, especially sleeping.  As well, he's battling an infection that required treatment and antibiotics.   He's slowly recovering from the fatigue that also deepens as the cycle goes on.   It's pretty safe to say that we're both drained mentally, emotionally and physically.  So when Dr Sborov's plan was to allow some time for Chris to recover it didn't take persuasion on our part.    Although we had a small break in January, myeloma has kept us quite occupied since this fall so we are very ready for it.  I was searching for a good quote and think I found our prescription...Play, Laughter and Joy.   

Any ideas on where to get it filled?