Day One of Cycle One

I’m now on a study of a new drug (Primary drug), along with dexamethasone (Dex).  I take both once per week for three weeks, then one week off from the Primary drug, then repeat that cycle.

Yesterday was Day One.  We drove 100 miles to Mayo Clinic in Rochester for no reason other than to pick up the pills of the Primary drug (they wouldn’t Fedex them), then waited 3 1/2 hours to pick them up, which normally takes less than an hour (not Mayo Clinic’s best day, grump grump).  But we got back by dinner time, to take them as follows:

  • Dex with the evening meal: ten tiny 4-mg tablets = 40 mg.
  • Wait an hour and a half after finishing the meal and my one beer.  I asked – the pharmacist said beer is food.  Tsk.
  • Take a Kytril tablet (Granisetron) against possible nausea.
  • Wait another half hour.
  • Take the Primary drug.

This study has two arms which vary in the amount of the Primary drug. Apparently I’m in the high-maintenance arm, more likely to have side effects I’m thinking, but possibly more effective as well.  OK with me, because they’ll drop the dosage if I run into trouble.  I want to see that PET Scan spot (lesion) on my T5 vertebra go away.

So far, on day 2, also known as the morning after, NO Problems:

  • My biggest concern is neuropathy, but after just one day I certainly wouldn’t expect any neuropathy, and there is none.  I have just a little neuropathy anyway in fingers and feet, and that actually seems to be less today.  Perhaps the Dex is improving it temporarily – Dex is a powerful anti-inflammatory among other things.  Seven years ago the Dex with a different regimen cured my chronic headaches, apparently for good.
  • I experienced no nausea.  The prescription suggests taking one pill just before taking the Primary drug, then another 12 hours later.  I skipped the second one.
  • I slept well, despite the drugs.  Dex, especially, makes that difficult for some people – I’m lucky.
  • My blood oximeter displayed 97% with a heart rate of 55, both this morning and this evening.  Prior to this therapy, for the last seven years, those numbers would usually be about 98% and 44.  Heart rate is low because I’m a runner, with stronger than usual “cardiopulmonary function,” according to the docs.  We’ll see what they are during the week, off Dex.
  • In addition to neuropathy, the drugs can cause a drop in platelets and neutrophils, among others.  For this first month I will get weekly CBC counts.

I felt WONDERFUL in my run this morning, and ran faster than usual, an effect of the Dex.  It’s like waaaay too much coffee.  I’ve had Dex before, and if experience teaches anything I won’t feel quite so wonderful tomorrow, as the Dex effect wears off.  I’ll let you know.