It’s been a while since I wrote. I began relapsing during the talquetamab/daratumumab/pomalidomide trial. I participated for about a year. The drugs worked for a good while – from June, 2021 until May, 2022.
Here are graphs of the free light chains (ratio and free lambda)
I have an appointment on September 20th to discuss the possibility of CAR T-Cell Therapy. Right now, I’m doing bridge therapy. Cyclophosphamide, carfilzomib, and dexamethasone. I’ve had this before, but I did relapse while on it. I hope it gets me through!
This is going to be a pretty boring post. I’m going to do my best to recall the events of my stay in the hospital while my trial drugs were administered according to the protocol.
On May 25th I was admitted to the hospital to start the daratumumab, talquetamab, and pomalyst trial. The reason a hospitalization is required for this drug trial is that the majority of patients develop cytokine release syndrome (CRS). The percentage of patients who developed CRS in a phase I trial of talquetamab alone was 67%. In an abundance of caution, the designers of the trial determined that patient safety required the stay. I was admitted to the BMT floor, which was pretty nice compared to other hospital rooms I’ve seen.
I had the first dose of both drugs injected subcutaneously (SC) on the morning of May 25th. About 36 hours after the first dose of talquetamab, I experienced chills and a fever, as well as a few other subtle side effects (adverse events). I had a small bit of stomach pain and some body aches. The first fever reached 101 degrees and I was treated with fluids and acetaminophen. I could compare this to my first experience with CRS in November, 2020, when I started the TNB drug trial.
A few days later, I was supposed to have the second dose of talquetamab, which would be a half dose like the first one. The second dose was withheld due to low platelets, and scheduled for the following day. I can’t even remember what day that was because I waited too long to write this! Anyway, the second injection caused a grade 2 CRS. My temperature at its highest was 104.3, and there were other factors that caused it to be graded that way. My systolic blood pressure dropped 30 points, respirations were 32 per minute, and my O2 was 92%. The doctors there decided to get a stat order in for me to have tocilizumab to reverse the CRS. The nurses call it “toci.” I remember thinking it was hilarious that one of the nurses told me I was going to “get cozy with toci.” I don’t remember what time of day this happened. You know how you kind of zone out when you have a high fever?
The toci worked to help me get through the CRS. They decided to administer a second dose 8 hours later, because my temperature was still over 103 F. The end result was that the CRS was handled rather well by the staff. Thanks to Dr. Khalil, who was extraordinarily competent and comforting. I wish he could stay at WFBMC after the completion of his fellowship.
On June 5th, I was allowed to go home. I really hated being confined to the hospital. I hope these trial drugs will be effective and it’ll be years until I even have to think about being a patient in the hospital.
In my next post, I’m going to talk about the side effects I’ve experienced with SC talquetamab.
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.
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.
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.
It’s been ages since I posted, but that’s because there’s been nothing new to report.
I recently began treatment with one of the new-ish monoclonal antibodies called Darzalex (daratumumab, aka dara). In addition to Darzalex, I’m taking an older drug that I’ve used before, called Revlimid. Once a week, I take a 20mg dose of dexamethasone.
It had been a little more than 9 years since I had any treatment for myeloma. After a stem cell transplant in 2007, I had no need for treatment. My disease stayed pretty stable for several years. Then, about 3 years ago, I began to relapse a little more noticeably. Finally, my doctor thought it was necessary to start treatment before I started to exhibit any symptoms. Only recently, my RBCs dipped below normal.
I’ve had two infusions of dara so far. the first one took several hours to complete because of an infusion reaction. My blood pressure shot up to 203/97 and I developed a wheeze. The treatment was stopped for a while, and then the infusion was resumed at a lower rate. I was at the clinic for almost 12 hours that day. I’ll write more about that in a future post.
As for Revlimid, I had that in 2006. It did very little for me, but I’m on it because my insurance company won’t pay for Pomalyst. This is because the dara/pom combination is considered “off-label” use. The price tag for Rev is about $11k per month, and Pom is about $13k per month. My clinic has billed about $45k for each infusion of dara. It’s hard to imagine, really!
Another first for me is that I’ve had a port implanted to handle the frequent infusions. It was an outpatient procedure. I was in at 7:15 Friday morning and out by 10:30 am. There’s some discomfort, but it’s not terrible. The surgeon prescribed some norco tablets. He even gave me a prescription for a lidocaine gel to apply before port accesses to numb the area before the needle is inserted.
That’s it for me now. I’ll provide some more details in future posts.