Furs.

Yesterday, I had my last of the 8 weeks of Darzalex.  Got at the Cancer Center around 8:20.  Back to my room around 9:00 after accessing my port and drawing labs.  Seemed to be running late.  Chiara, my oncology nurse for the day was ready with my premeds.  I told her that I usually do not get these until my labs come back.  Need to see if all my numbers are okay to precede.  And if I took them now, I would be out.  We think she was new because several other nurses seemed to be "checking" on her.  And I did not recognize that name.  One that would be easy to remember.  Labs came back okay.  Bilirubin up some.  Waited on Dr. Sarriera to approve to continue.  Which he did.  Started the Darzalex around 10:45.  No Kyprolis this week.  I was out about 11:15.  Hourly vitals.  All good.  Until after the infusion was complete.  Last blood pressure was super high for me 184/78.  This all started around 4.  At one point, the machine would inflate, deflate, inflate, deflate.  Moved to other arm.  Still high.  Chiara would wait like 15 to 20 minutes, take again.  Still very high.  Not letting me go home.  Headache starting.  Chiara contacted the PA on duty several times for advice.  Finally took pressure with a manual blood pressure cuff.  Still high.  Not going home.  Decided to give me a Fioricet pill for the headache around 5.  Waited until 5:30 for another reading.  Redid with the manual cuff and was down to 147/74.  Decided that I could go home but continue to take my pressure there.  I did several time over the course of the night.  Pressure was up at 11 so took another Fioricet.  Down around 12:30.  Finally fell asleep around 1ish.

Today was our appointment with Dr. Sarriera after my first 8 weeks of Darzalex.  I thought I had off a week to start my every other week of the Darzalex.  Nope, I am on my cycle 3 of Darzalex.  They count 4 weeks as one cycle.  Hence, cycle 3 to start July 17th.  NOOO!!!  Juliana to come in that day. Dr. Sarriera was very thoughtful of my needs to spend time with her and said I could take that week off and not start until July 24th.  Juliana leaves on the 25th.  Then Jakob and Audrey come July 27th for a week.  I will not have a Darzalex treatment while they are here either.  Worked out.  I may have Kyprolis treatments but not sure yet.  Thank you Dr. Sarriera.

Very concerning in today's appointment were my headaches and blood pressure.  Dr. Sarriera had a fellowship intern with him today.  They did some research on the net regarding headaches and the meds I am on.  All of meds, of course, causes a certain percentage towards headaches.  But even more concerning to them was my increasing blood pressure.  Looked over past history and notice this seemed to be creeping up and up.   Maybe the blood pressure that could be caused by the meds could be causing the headaches.  So guess what, I am now adding a blood pressure pill to my regiment of meds.  If this takes these headaches away, I will not complain.  Of course I know that it may take time to achieve the intended effect.  I have the Fioricet to fill in till then.  Since these headaches seem to be mostly behind the eyes, Dr. Sarriera ordered a MRI to make sure there are not any Myeloma lytic lesions causing any other problems behind the eyes.

Other discussions.   Our trip to Moffitt and how they are on the same page with Dr. Sarriera. Asked if there were other treatment plans if this Darazalex would not happen to work.  He started to list off all these other drugs that could be used.  His comment to me was that I have to be willing to keep an open mind.  Told him it was hard at times; he understood.  He is all for the Car_T trial if it opened up for me in the event of Darzalex failure.  He felt my lab numbers looked good even though my M Spike that has been zero forever is elevated.  Felt my light chains looked good.  Darzalex causes some readings to be distorted.  I will continue to take my Dex weekly even though I will not be having treatments.  Bill was so happy about that.  Next appointment to be with Abby on August 8th.  Need to do Myeloma labs one week before.  MRI is schedule for July 26th.

We pass this small store on the way to the Cancer Center that has had me baffled.  The sign says "Cold Storage and Furs".   So I am guessing since it doesn't get cold even here to wear a fur, that it is a place to visit so you can wear your fur??  This is Florida so could be.

Quote:

Everyday that I challenge this cancer and survive is a victory for me.