Clinical Trial Started

Hi everyone,

First, Rob’s resting at home and is doing good, considering everything he’s going through.  I wanted to start with that first, and then give a lengthy update.

Rob completed day 1 of the clinical trial yesterday at LCI. This arm doesn’t require hospitalization, thankfully.

The trial is randomized, and the arm he was selected is Daratumumab, Pomalidomide, and Dexamethasone (DPd). This is also the same treatment he would have been on if he hadn’t entered the trial.

There are no placebos in their clinical trials- you are either in the experimental arm or the standard arm. So Rob is in the standard care  of treatment arm.

We were at the clinic from 7:00 am until 8 pm, making for a really long and incredibly anxious day. But, it is over and all is well right now.

Here’s a (lengthy) recap. Excuse typos.

They did labs first thing at 7:15,  then appointment at 8. We then had a 2-hour wait (you can’t check into infusion more than 30 minutes before your infusion, understandably). Thankfully, they have a Keep Pounding lounge with comfortable chairs and snacks, which is a good option for waiting in between appointments. They also have plenty of seating outside the infusion suite. – mentioning this as we have some newcomers to the Keep Pounding Rob blog  who are also new to LCI. Keep Pounding!!

He checked in to infusion at 10:30, but then got a message while in the waiting room,  saying his bilirubin and bilirubin direct labs were high, and this may delay treatment. This was unnerving to hear, to say the least. While they were slightly elevated by  .1 from last week, they were up by .1 this week. When they called him back to the infusion suite, we were hopeful and nervous at the same time.

Thankfully, his hematologist oncologist advised him to drink lots of water and retest. He literally “Kept Pounding”  many bottles of water they kindly offered, and the second labs met the requirement to proceed.

It is important to note that had it not been for the trial, Rob probably would have been able to go ahead with treatment to begin with, despite the level being slightly elevated (barely high). This was just a trial protocol that had to be met.

If needed for any reason, Rob can withdraw from the trial at any time, as his treatment would remain exactly the same, without  the trial protocols in place.

This is something we are keeping a very close eye on as we proceed, and we are so grateful to his AMAZING hematologist oncologist and nurse extrdoinare for doing the same. These two individuals are amazing in their knowledge, help, and advocacy. ❤️❤️❤️ 

After he got the ok to proceed, he had the premeds (including the Dexamethasone), then had to wait an hour, then they administered the drug Daratumumab.

After receiving the Daratumumab, he had to be observed for 6 hours, due to the possibility of a reaction. Going forward, he won’t have this long of a wait after receiving the med. There will still be observation, but not near as long. Being it was the first time getting this drug, we were thankful to have that observation, just in case something had went wrong.

He will begin taking the oral chemo, Pomalidomide at hone every night.

The Pomalidomine makers advises you shouldn’t operate machinery (like driving) after taking it.  We are beyond thankful (once again), for his hematologist oncologist said taking it at night was a good idea with that in mind. It is important to take this medicine at the same time each day.

Rob is feeling tired, as he didn’t sleep well with Dexamethasone from yesterday.  He is also coming off of 4 nights of not sleeping due to anxiety. However, he thinks another night of two of getting better sleep will help.

The Supportive Oncology department (formally known as Palliative Care) gave him the ok to increase his sleep medicine. Hopefully, trying this will help get him back on track for regular sleep soon.

We are grateful for everyone on his team at LCI, and appreciative of their help with this multiple myeloma  relapse and treatment, from his  doctor and nurse, trial nurses, infusion nurses- everyone. ❤️🌻🌷

We have more to add, but wanted to give a recap of yesterday first.

Thank you for helping Rob Keep Pounding!❤️❤️❤️