Thursday, December 31, 2015

Modestly Good News

Tuesday, December 29, 2015:


My new treatment regimen is three weeks old now, and my blood is being checked every week at Mayo Clinic (182-mile round trip).  For the first two weeks the myeloma markers went up - the treatment didn't seem to be working at all.  Nevertheless, Dr WG and I agreed  that I would continue on the study for the first eight weeks, then get the scheduled PET scan to get the best possible information about the state of my myeloma.

However (Yay!), my primary myeloma markers went down a bit at the end of this third week.  IgG dropped 12% from 1520 to 1350 mg/dL, and M-spike dropped 7% from 1.4 to 1.3.  These are not big changes, but they go the same direction and therefore are probably real.  I guess we'll find out for sure next week, and the week after, ...

One factor that confuses the measurements a bit is the slow decay of IgG, which has a half life of two to three weeks in the blood stream.  This means that even if the treatment does kill some of the myeloma cells that are spewing out the monoclonal IgG, that IgG stays around for a while to screw up the measurements.


It's hard to believe, but after more than 12 years with myeloma, I had my very first infusion just three weeks ago as part of the current trial.  I had another today.

At Mayo in Rochester, Gonda Building tenth floor, you are brought into a cute little private room (one of many) with a very fancy lounge chair, a TV & remote, extra chairs for my sweeties, outlets to plug in my laptop, and the infusion equipment.  They offer water, juice, and snacks as well.  Next time I'll ask about beer.

I don't have a port or picc line (yet?), so in my case they inserted a tiny needle into a vein on the back of my left hand (I'm right handed).  To hold it in place they covered the entire back of the hand with a clear plastic bandage, then bent the tube around and secured it with medical tape halfway up my forearm.  The infusion felt cool as it began to flow in, but there was no other sensation or reaction.  Thirty minutes later it was all over, as they flushed the very last bit of medication into me with a little saline.  Very easy.

Except: Medical tape of any kind is a problem for me.  If it doesn't tear my ancient skin off upon removal, the adhesive causes an allergic rash that can last for weeks.  So this time I brought my own stuff!
  1. Some skin was torn when the bandage was removed from the back of my hand after the first infusion, so I brought adhesive remover wipes (Uni-Solve brand works well) which the nurse was happy to use and which left no torn skin or adhesive residue behind.  
  2. When the adhesive tape wrap was removed from my forearm after the first infusion it left an allergic rash that is still not entirely resolved three weeks later, so this time I brought a first aid wrap, a highly stretchable tape that sticks to itself but not to the skin.  That held the tube in place perfectly and left no rash.
The nurse at Mayo told me that they have those items on hand, so I could just ask for them next time.  Maybe I will, but I'll bring my own just in case.

Am I getting good at this?  I don't like the idea of getting good at chemotherapy.  But my sweet wife recently acquired a sign that I see every day:  "if you are lucky enough to be here, you are lucky enough!"  12 years with myeloma, still here, still running marathons, heading into my fourth quarter-century - indeed I am lucky.

Friday, December 11, 2015

Bone Marrow Biopsy

PET/CT scan, PET/MRI scan, 46 vials of blood, two 24-hour urine collections, two more urine samples, ECG, Skeletal (x-ray) bone survey.  That is the list of tests required for qualification and for Cycle 1 Day 1 of my new myeloma therapy trial.  Not to mention height, weight, blood pressure, temperature, walking blood oxygen, and a short physical exam.

I won't name the medications involved in the trial yet because, in case they don't work for me, I wouldn't want to discourage anyone else from using them.  One of them is already a whiz-bang success for certain other cancers.  I can say that the study does involve immunotherapy, meaning that the medications take advantage of my own immune system to dispose of the errant plasma cells that are my cancer.

Tuesday I had an infusion of one medication, and was given capsules of another to take at home.  I have taken those faithfully for three days now, and will drive the 180-mile round trip to Mayo Clinic again next Tuesday to see how things are working out.  And the Tuesday after that, and on and on for a while.  Fingers crossed.

I had such a lovely 7-year ride on Pomalyst, running 60 marathons in 47 states during that time.  Wouldn't another 7 years like that be wonderful?  All prayers accepted.