The New Plan

We have a plan.  Thank goodness.

Matt and I went down to U of C today and, after waiting for far too long, met with Dr. J.  He informed us that Matt's light chains have not gone down as much as they would have liked and because of that, they don't believe transplant is the best option.  The main reason for this is that the drug they give Matt to wipe his immune system is something called Malphalan, and it's in the same category as the Cytoxin he just received.  Meaning there's a high possibility that it wouldn't work as well as they need it to prior to transplant.  I also learned today that both of those drugs are in the same class as VDPACE, which is the infusion Matt received before our initial plan of a donor transplant in 2021.   Which, of course, didn't work then either.  So I think it's safe to say, that category of drugs is essentially useless to Matt. 

So, we pivot.

The new course of action is to do a carT called ciltacel.  This is similar to what Matt has done previously.  They will collect his t cells, send them to a drug manufacturer where they will attach the 'car' to them.  This process takes about six weeks before they are ready to return to Matt and do their job. At that time, he will go inpatient for 7-10 days (usually), receive a day or two of high dose chemo and then they will infuse the newly transformed t cells.  These cells then go to work and kill the cancer cells in his bones.  The side effect of these cancer-fighting cells is that as they go to work and eliminate the disease, they release toxins that can have some brutal side effects.  Most commonly with carT they watch for something called Cytokin Release Syndrome (CRS), which typically looks like confusion, fever, fatigue, etc.  So the higher the burden of disease at at the time of infusion, the higher the level of toxicity and the more side effects.  Luckily, most of these are temporary and they anticipate.

So then the question comes, how do they continue to control his disease before the next carT?  For now, they are going to put Matt back on something called KPD Dara (kyprolis, pomalyst, dextamethosone, and daratumamab).  He was on a similar plan years ago and side effects were minimal.  It worked okay back then, not great, but it did lower his numbers, which is ultimately what matters.  He will go in every week for his infusion, a schedule we are very used to.  They will monitor his numbers every two weeks.  If the numbers trend in the right direction, they will look at carT 2-3 months down the road (even further if it's consistently working).  If things don't trend in the right direction, they can change his weekly regimen to something else that may work better (but does come with a lot more side effects).  

So there it is.  Our plan in two paragraphs.

Thank you to everyone who has reached out and offered to help as we anticipated transplant in the coming days.  As we continue on this journey, we will continue to need help.  But hopefully that is a ways down the road and for now, we can breathe a little sigh of relief. 

All our love,

Matt & Mandy