Category: pomalidomide

Dose Reductions

This’ll be quick.  My talquetamab and Pomalyst doses have been reduced due to the effects on my pancreas.  I started a few weeks ago on 4 mg of Pom.  Now I’m taking 3 mg.  Talquetamab was administered at 400 micrograms/kg, and now I’ll be getting 135.  I was feeling as though I’d had a punch in the gut, and my lipase results were elevated. A CT scan didn’t reveal any pancreas disease, but the study team decided it’s better not to allow it to get that far.

One of the RNs told me that MANY people have trouble tolerating Pomalyst.

I had Zometa today, too.

I’ll post some test results next time.

Celegene REMS Has An App

It’s been a while since I took Pomalyst or Revlimid.  I used to have to make a call to Celgene to take a survey.  The purpose of the survey is just to make sure patients are aware of the safety concerns.  I just got a call from the cancer center pharmacy that I can pick up my pom prescription when I go in on Thursday, as long as I’ve completed my survey.  I searched for the online survey, and found out that they have an app now!  It will remind me when my next survey is due.

The starting dose for pom is 4 mg per day, for 21 days.  Since I’ve had it before, I already know there’s going to be a dose reduction in my future.

Daratumumab, Pomalyst & Talquetamab Trial

I’ve signed consents and started testing for a new trial using daratumumab (dara), pomalyst (pom) & a new drug called talquetamab.  The one thing I have left to do is the bone marrow biopsy, which will be done next Thursday.  Here’s a link to the info about the trial.

https://clinicaltrials.gov/ct2/show/NCT04108195

I’ve had another PET scan since I last posted, and a few spots have gotten worse.  It’s disconcerting. But, I hope the trial drugs will stop the myeloma and give me time to wait for some more treatments to come down the pipeline.  This is different for me, because I’ve never had bone issues before & I assumed I never would.  There’s some pain associated with it, especially in my spine and left hip.

I’ve had dara and pom together before, but just briefly.  Daratumumab is also known as Darzalex®.  This version is called DARZALEX FASPRO®.  Is it supposed to be all caps, or is Janssen shouting at me?  The reason this version of the drug is different, is that it’s given as a subcutaneous injection, rather than by IV (which is how I had it some years ago).  We must remember to the ® when we write about daratumumab by its brand name. ; )

This trial requires a hospital stay of up to 10 days.  The reason for that is that the injections can cause cytokine release syndrome (CRS).  I had grade one CRS when I had my first infusion of the Teneobio drug in the last trial/treatment.  I’m expected to have that again, and one doctor told me the second injection will be worse than the first. I’ll be on the BMT unit, which has nice rooms. I hope I’ll have a nice view!

Speaking of nice views, these are some Carolina Chickadees I saw in the back yard a few days ago.


I’ll let you know how everything goes.

Still on Darzalex

This is just a quick update.  I’m still on Darzalex, but am also taking 2 mg of Pomalyst (pom) 21 days a month.  I’m not taking dex at the moment.  I just get 20 mg of dex with each dara infusion. We’ll see how that goes.

For the last 3 or 4 months, I’ve been getting dara via rapid infusion.   That cuts down on a lot of chair time. It feels like I may be having some more pronounced side effects from the rapid infusion in the form of fatigue and a bit of just feeling yucky.  I asked my doctor if he’s heard others say they feel a little worse after the rapid infusion, and he said that seems to be the case with some people.

Anyway, I am still alive and am stable at this point.

dara = daratumumab
pom = pomalidomide