I've been taking Pomalyst again now for a month, 2 mg every day, with dexamethasone (DEX) 40 mg weekly, waiting for the drugs from the most-recent study to wear off, and Tuesday I received my first infusion of Darzalex. That was an experience. I have been SO lucky - more than 12 years with myeloma without any infusions EVER. That ended last December, with the last study, because one of the two study drugs was an infusion, but Darzalex is in a class by itself. This is NOT a complaint, because we myelomiacs do whatever is required to stay alive and running marathons (or whatever) and we don't whine about it, right? This is just a report.
According to the manufacturer's Darzalex Dosage and Administration instructions, there is the possibility of an infusion reaction of some kind. For this reason the infusion rate starts out low and builds up. If any reaction occurs, the infusion rate drops back to the beginning. Furthermore, the very first infusion is a special case - the infusion rate is very low indeed - and if the instructions are followed correctly it cannot take less than 6 1/2 hours. With a reaction, it could obviously take longer. A few weeks ago in Virginia Beach we attended a support group meeting where I spoke with two people for whom it took most of the day. Then I spoke to a friend from our own support group who breezed right through it - didn't recall that it took 6 1/2 hours.
In addition to infusion time, some amount of time is required to prepare for the infusion. Since I don't have a port of any kind the nurse had to find a good vein (I have lots) and set up the temporary port. Then I was given oral Tylenol and Benadryl, followed by an infusion of prednisone (the pre-meds), all to reduce the likelihood of a reaction, and there was a little waiting for the Mayo Clinic pharmacy. When the Darzalex infusion arrived, the drug itself (I think three 400-mg vials) was already mixed with a liter of saline, that bag covered by a semi-transparent shroud intended to keep light away from the mix.
At first my "vitals" were taken every 15 minutes, really just blood pressure and heart rate I think, not even temperature or pulse oxygen, but of course they always asked how I felt. The 15 minute intervals became 30 as time went by, I had no infusion reaction at all, and I suppose the Darzalex itself took about 7 hours total, maybe a little more because the infusion pump stopped and beeped every time they needed to take vitals. Added to other delays I was in the chair for almost nine hours. I dozed a little (the Benadryl) but mostly talked to my sweeties and amused myself with the computer. Easily the most physically relaxing day I've had in years.
My advice: Go with the flow, get an early morning appointment with nothing else on the day's calendar, and plan on a nice, long, but easy day. Bring stuff to do - computer, smartphone, Kindle, books, magazines, friends to talk with, even watch TV or sleep. My sweeties brought me food now and then during the day, and even a Starbucks.
Mayo Clinic knows how to do infusions! The nurse who started me out (Andy) very carefully wrote out the start times for each medication on a whiteboard, and a chart of the specific settings for the infusion pump for each hour of the Darzalex infusion. All of the nurses referred back to that chart as the day went on and shifts changed. I wish I had taken a picture of the whiteboard.
Unfortunately for us Mayo isn't next door, it's about a 200-mile round trip, but we have an infusion center within a short walk of our house. Darzalex infusions are weekly for the first eight weeks, then every other week for a while, and although I have appointments for three more infusions at Mayo I also have an appointment with a local provider to see if the infusions can be moved next door. Mayo would, of course, continue to be my primary source for overall management of the myeloma.
We know that after seven wonderful years on Pomalyst my myeloma finally progressed, as we knew that it would eventually. A PET/CT revealed a hot spot appearing in one vertebra. According to my doctors, that is probably a sub-clone of the original myeloma, somewhat immune to Pomalyst. I was then taking Pomalyst as a single agent, and according to one doctor it's possible that the new clone could have been managed for a while by the simple addition of DEX to the regimen, but now after the failed studies it appears that we need both DEX and a third drug to manage the clone or clones. Dr WG suggested that if this regimen gets my numbers down nicely, and the hot spots disappear, then perhaps Darzalex could be my next seven-year treatment. Wouldn't that be something? 82 years old, getting monthly infusions, and maybe even still running a marathon now and then. Dream big!