Chapter 7:

Just Lie Down By Me, PRRT

Post made during her June/July 2017 hospital stay.

July 2, 2017

Many of you might me wondering, "What next."  We have had some discussions about hospice care.  Currently during most of Julie's conscious moments she is enduring pain and suffering, and quite sad and afraid.  She is ready for hospice if she choses.  There is also a hope that she will endure until she can try a new cancer treatment called peptide receptor radionuclide therapy, PRRT.  There are a few conditions to consider.

First, she would need to have the right receptors on the tumor cells.  PRRT works by taking the peptide known as octreotide and attaching radioactive molecules to the octreotide molecules, then injecting them into the body.  If the tumors have octreotide receptors, then the octreotide molecules and its radioactive particles will attach to the tumors and destroy them, or at least partially destroy them.  First, we have to find out if Julie's tumors have octreotide receptors, so we are planning on her having an octreotide scan this week.

Second, we have to find a place willing and able to do the treatment.  There are some trials being conducted in the US, but it might take a few months to get enrolled into the trial.  We are looking for other ways to shorten this wait, perhaps available as a private pay option.  We are pressing forward with that search.

Third, she will need to endure and survive until the treatment, and one of the biggest challenges will be nutrition.  Her brain is refusing food.  We would have to find ways to keep her fed.

This PRRT is the final option, and not a permanent cure, and might add a couple of years, and eventually Julie will be back to where she is now.  Still, that time would be very worth it to us, if she could enjoy it and not suffer continually.

I don't know if Julie can make a definitive choice in her current state.  We are taking one day at a time, and with each day, making the best choices we can, and looking forward and making what contingency plans we can.  I am praying for guidance, and trying to put out of my mind what I would do, or what others might do, and steer this to what Julie would want if she could have a moment of clarity to decide.  I hope that moment will come, so that we can decide together, and not me alone.  For now when we discuss it she says, "Just lie down by me."  For now, I am happy to do just that.