Myeloma Shells.

Last night, Monday, January 14th was our monthly Myeloma support group meeting.  I forgot to count how many were there.  I am guessing at least 30.  Speaker was great even though she had to leave early.  She spoke on healthy eating and cancer fatigue.  Both very good articles especially the fatigue.  It's is real and she had some pointers on trying to relieve some of the fatigue feelings.  Food was excellent again.  Vinzo's is the restaurant that prepares it for us.  We had chef salad, regular salad, eggplant parmesan, spinach lasagna, spinach and mushroom chicken Alfredo, pasta sauce, penne pasta, cakes and cannolis.  Doesn't that make you want to come to one of our meetings?  Our next meeting is February 11.  Our very own Benn will be our speaker.  Can't miss this one.  Seriously, if you read this and you know someone that is dealing with Myeloma, we would be glad to have them attend one of our meetings and they will be hooked.  If you need more info, IM me.   It's a happy place for me I know.

1 down and 3 to go.  I had my Kyprolis treatment today, January 15th.  Tomorrow I will get another one.  Then January 22nd and January 23rd (that date sounds familiar), I get the last two Kyprolis treatments until after the pet scan results.  My appointment has been set for January 30th for the pet scan.  Will see Dr. Sarriera on February 1st.  Then we go from there.  No active Myeloma (this is what we want) treatment like doing now but only once a week instead of twice and changes to dosages. Darzalex the same (once a month, same dosage), Kyprolis once a week instead of twice (dosage will be half of what it is now) and no Dex (dosage ZERO).  This is what we want.  Myeloma labs will be the monitor of this plan.  I am assuming these will be every 4 weeks before my appointments with Dr. Sarriera.  Will verify all this at my appointment on the 1st.  Myeloma found (this we do not want), another treatment plan will be started as the one above isn't working.  Whatever happens, I will be on a treatment plan forever as this Myeloma I have is aggressive.  So preparing myself for a forever treatment plan.  Maybe there will be a cure found for Myeloma and I will be cured before my forever wears out.

Today I have Kerrie in the lab draw station.  When she and YoYo were discussing my labs to be drawn, she said we only needed to dram CBC labs.  I questioned her why not the CPM?  This is the lab that measures my bilirubin.  She explained I questioned this once before and she researched it.  Only need to draw for bilirubin every 28 days unless the doctor orders it.  So something else we need to keep track of.  Port accessed, labs drawn and off to Vanessa in room 21.  Found Bill already seated and waiting on me.  Vanessa asked usual questions and said she would get the lab to mix my Kyprolis.  Oh but wait, you have to wait until you get my lab results back for my platelets first.  She just left the room.  Advocate, advocate.  Platelets drop to 86 from 118 last week.  Still okay to go.
Mixed the Kyprolis, administered, port access removed, done.  See you tomorrow, Wednesday, January 16th.

During our support group meeting, the last thing we do is go around the room and tell of our journeys.  We have heard it all before from some of the members but give them our respect so we can share with the new persons (we had 4 last night) and hear theirs.  When it was my turn, I told of my July 2016 diagnosed date, November 2016 transplant, 6 month after relapsed date, radiation 2017, relapse, treatment plan I am now receiving.  Then I told of my upcoming pet scan and what happens when we get the results.  As I was speaking, I said if the pet scan doesn't show any Myeloma shells.  What shells?  Someone hollered chemo brain.  What a good laugh we all had.  Shells???  Because we live in Florida?  This is why our support group is good for us all.  Laughter.  But really shells??? I do like that better then cells.

Quote:

We are cancer warriors and at times, we can laugh without the fear of the future.