Limbo

     It's been a long month.   We were planning on doing T-Cell collection so that his cells could go off on an adventure to be trained how to kick butt.   However, we found out the week before that insurance denied the treatment.   We have been very fortunate as fighting for treatments isn't something we've had to do.   CAR-T has been FDA approved for myeloma for a year, but it's not on their list of approved treatments yet.   Well, unless Chris had lymphoma.  So frustrating!   One think we were still trying to wrap our heads around, was that after doing CAR-T, there is no chemo until you relapse.   No chemo, something we never thought was a possibility.   We understood when he was diagnosed that he would be on chemo until he died, so this was something we hadn't even thought about.  They are appealing and perhaps it's still in the future, but for now... for now we are in limbo.   

     He did one cycle of PVD (Pomylyst Velcade Dex) but ended up skipping the last week of Velcade.  His Lamda Light chain and M-Spike numbers showed it wasn't working and the Velcade was already causing more neuropathy.  Losing the ability to feel more of his fingers for something that wasn't controlling the rampant myeloma cells.    The decided to start yet another chemo (the 5th so far this year) of Pomalyst Bendamustine Dex.   He started the Pomalyst last week and we are still waiting for insurance to finish approving the Bendumustine.  We don't need another PET scan to know what it would show.   The masses that we fought so hard to get rid of with two cycles of intensive chemo earlier this year are clearly back and growing quickly.   It's taking a toll on has body (and spirit) and it breaks my heart to see him suffering.   

     When we learned about being  denied CAR-T, Dr Sborov mentioned a new drug called Teclistamab that is being FDA approved in September.   It is a T-cell–redirecting bispecific antibody that targets both CD3 expressed on the surface of T cells and B-cell maturation antigen expressed on the surface of myeloma cells.   In simple terms (if I explain correctly), it locates the myeloma cells and grabs it with one hand.   Then with the other hand, it grabs a T-cell.   It brings them together and forces the T-cell to recognize and attack the myeloma cell.   Sounds like a great new option, but if it's just being FDA Approved next month, how long will insurance drag their feet before allowing us to use it.  

     So as I type this and know that September is just over the horizon, we are so very anxious to know what comes next.  Not because we want to know what chemo he will be doing, but to hope that we can move out of this awkward limbo we've been in since May where we hang on the mercy of some pencil pushers deciding on their own time frame when we can make the next move.   

     To end on a different and not so depressing note! Chris's birthday is next week.   It would make his week and hopefully help us end the month on a positive note.   Send a text, an e-mail, a card, a letter, a picture, a meme, a facebook message.   Let me him know you are thinking of him.  Doesn't matter what day (we celebrate all month at our house), just when you have the time.