October 12, 2016

by kpw413

Wow!!  I have been remiss.  

The port has continued to work well over the past year.  I am still on Kyprolis (carfilzomib) although the dose and regimen has changed last March.  Instead of a normal dose taken for 2 days a week for 3 weeks followed by a week off, I am now on a double strength dose for two days every other week.  This works better for my travel schedule.  

My numbers, especially M-Spike have hovered between 0.3 and 0.8 for this entire year.  I don’t see that I’ll be stopping therapy anytime soon.  But at least the myeloma is in good control.  Side effects are more harsh with this extra strength therapy.  I get a fever sometime during the night following the first day (of 2) therapy.  It is usually gone by the time I get my next dose. I tried discontinuing the dexamethasone because I was complaining of headaches and Warren said we could try it for a while and see what happened.  Then I was diagnosed with TMJ (TemproMandibular Joint) which was causing the headaches and other issues.  (I got a Mouth Guard from my dentist and the symptoms seem to have disappeared.)  

So, Warren and I decided that perhaps I should add the dexamethasone back in and see how I fared.  I am happy to report that my issues with nausea have decreased and my sleep situation is about the same.  So now, I only take the dexamethasone on the first of the two days of treatment.  

Warren has also told me that he has patients who have been on Kyprolis for over 2 years.  It seems there is precedent for the direction I seem to be heading in.  

I hope that my next communication will not take as long as another year.  But if it does, I would hope that it would only mean that things have been puttering along in similar fashion to this last year.  

Thank you, Lord Jesus, for my healing and for all the healing received by those fro whom we pray.