In a clinical trial ... and now I know what those side effects feel like!

  • 0 replies
  • 76 subscribers
  • 30 views

Hi, all. Been away from a bit.
Long story short, after I completed an induction course of BCG (6 installs), TURBT No. 4 still showed the presence of cancer ... but it was now in a bit of an improved state, from HGT1 to HGTa. 
So, a bit bummed, but my urologist's practice here in the state of Indiana, USA, has a research unit, and they got me into a clinical trial.
That trial is called Core 008, Cohort CX. In each install visit I get DDM (a prepatory agent) for a 15-minute hold. Then Cretostimogene Grenadenorepvec (an immuno therapy drug) for a 1-hour hold. Then Gemcitabine (a chemo drug) for a 1-hour hold.
Then I sit for a half-hour, they give me a last vital-signs check, and I'm free to head out. 
Having completed six such visits, I know have a six week break before another flexible scope. 
So, glad to be in the trial, for sure. And the people who have been caring for me have been lovely. 
The downside: Now I know what dysuria (pain while urinating) and frequency/urgency problems are. I've also gotten familiar with spasms, too!  And of course, our friend hematuria has visited ... sometimes out of nowhere.
Fairly sure it's the Gemcitabine driving these side effects, as the Creto hasn't had many reports of such symptoms.
So, on one hand, you sigh. You'd just like the wear and tear (especially on the psyche!) to be over.
On the hand, you know so many people go through so much worse, and you're so glad  for the care you're receiving.
Hanging in there, taking the acetaminophen (paracetamol) and trying to stay after it all in good cheer.
Best to you all.
Mark