Category: Myeloma Treatment

Myeloma Treatment

Side Effects I’ve Experienced with Talquetamab

This is a list of most of the side effects I’ve had since I started talquetamab.  The most surprising and disappointing problem I’ve encountered is the loss of my sense of taste.

Xerostomia
Dry mouth. This is so bad that at times my teeth stick to the inside of my mouth. It’s not always that bad though.

Dysgeusia
My sense of taste is altered or absent.  A dill pickle tasted like nothing to me.  I could smell the dill, but the experience of eating the pickle was totally unsatisfying. It was like a crispy water snack.  Vanilla ice cream tasted like salt. I had a hot dog with mustard on it, but couldn’t taste the mustard at all.  The hot dog had a muted flavor. There are very few things that taste like much of anything. I still drink coffee every morning.  I’ve made it excessively strong, to see if I can detect more flavor, but that hasn’t helped.  The coffee smells great, but tastes like hot water with 2 teaspoons of sugar in it.  Yum.

Dysphagia
Swallowing problems. I have trouble swallowing most foods.  I have to keep a full bottle or glass of water nearby to wash things down with.  If I try to swallow without the help of water, I cough or choke a little.  Most things get stuck in my throat. We believe this is a result of the dry mouth/effect of the drug on the salivary glands.

Nail/skin changes
My nails are separating from the nail beds, which is painful.  The skin on my fingers and hands is peeling.

Heat sensitivity
I’ve been experiencing pins & needles on my head, neck and torso when it’s too warm. My face gets flushed.  My internal temperature rises a bit. This happens if I’m outdoors and the outdoor temperature is in the upper 70s or higher.  It also happens if I’m exerting myself in any way. Including doing such simple things as folding laundry. The only remedy I have is to rest immediately and try to reduce the temperature in my environment.

Acute pancreatitis
Treatment was withheld this week for this reason. This is still under investigation.

International Myeloma Foundation

The IMF has a good video describing some of the data from a phase I trial of talquetamab as a single agent:

https://www.myeloma.org/videos/updated-results-phase-1-first-human-study-talquetamab-relapsed-refractory-multiple-myeloma

 

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.

Cozy with Toci

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.

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.

“Varying Intervals”

I had my second infusion of TNB-383B yesterday.  There were no immediate side effects of the infusion. It was explained to me that some people have a recurrence of cytokine release syndrome (CRS), which could be as bad as the CRS accompanying the first infusion, or less severe. I had none, thank goodness.  While mine was only a grade 1 CRS, it may as well have been a grade 1,000,000 to me!  My sympathy goes out to everyone who has ever suffered CRS at any level.

The one thing that surprised me is that I’ve had nausea and vomiting from time to time over the last three weeks. The nausea ranges from mild queasiness to the “get me a bucket” kind. That reference will make sense to Monty Python fans. I spoke to a Cancer Center pharmacist, who told me to stagger my anti-nausea meds for a few days to stay covered. Maybe I can let up after that, and just take them when I first notice I’m starting to feel bad.  I have Zofran and Compazine. I think Compazine is working better for me.

I reported this unwanted side effect to the research staff. I asked if others are experiencing nausea and vomiting, and one RN said some are, “at varying intervals.”  What I’m hoping is that it will subside after I get adjusted to the drug.  Maybe soon?  I sure hope so!  I also hope this won’t affect you.

TNB-383B Phase I Trial

I recently enrolled in a clinical trial at Wake Forest Baptist Health.  A phase I trial to test TeneoBio’s TNB-383B. Before this, I spent several months on carfilzomib, dex, and cyclophosphamide.  Test results and bone marrow biopsy indicated I was relapsing.

TNB-383B is a BCMA x CD3 T-cell engaging bispecifc antibody being studied in relapsed or refractory multiple myeloma who have received at least 3 prior lines of therapy.

TNB-383B is being developed by TeneoOne through Phase 1. AbbVie holds the exclusive right to acquire TeneoOne and lead subsequent global development and commercialization of TNB-383B.

AbbVie, Inc. “TNB-383B.” AbbVie. Accessed November 24, 2020. https://www.abbvie.com/our-science/pipeline/tnb-383b.html.

I had one infusion of the drug almost two weeks ago. The first infusion required a hospital stay due to the potential for serious side effects, primarily cytokine release syndrome and tumor lysis syndrome. It sounds scarier than it was, in my case.
About two hours after the infusion of TNB-383B I began to experience an extreme skin sensitivity, aching joints — mostly knuckles and elbows, rigors, headache, and a fever of something over 103 degrees F.  I’m not sure what the ultimate high temperature was.  I had not known about rigors before this event.  I don’t think I was shivering as much as what I’ve heard others talk about.  I was extremely cold, and I think I was constantly begging for a blanket.  I don’t really remember everything!  I was aware at some point that they were talking about testing me for Covid-19, just to make sure that wasn’t the cause of the symptoms.  They were also giving me fluids and Tylenol.  I remember being wheeled to an isolation room, which was something they did as a precaution. In case I had Covid-19. My blood pressure also dropped about 30 points.  I had a rapid heart rate, too.  I heard a nurse talking about giving me morphine, which I declined.  I’m not sure why I did that.  Later I learned that morphine helps with rigors.
I could tell the efforts of the staff were beginning to be successful when I was no longer cold. Isn’t it weird that having a high fever would make me cold? Throughout the next few days, I was given fluids and Tylenol.
By the way, I was not positive for Covid-19.  And, the swab test is not as bad as the crybabies on TV have reported. :  )  I guess it’s all relative. If you’ve had bone marrow biopsies and bone fractures, no swab into the nasal cavity is going to bother you.
Next time, I’ll post some of the test results.

Carfilzomib and Cytoxan

Well, the daratumumab and pomalyst train has left the station without me.  My doctor decided that it wasn’t helping me anymore, so I’ve moved on.

A few weeks ago I started carfilzomib (Kyprolis) and cyclophosphamide (Cytoxan).  I also have 20 mg of dexamethasone every week. I have carfilzomib on Thursdays and Fridays and Cytoxan only on Thursdays.  I’ll have three weeks on, then one week off.  So far, my CBCs are pretty good.  I have only slightly low hgb, rbc and platelets.  Those were all low most of the time before this, anyway, so that’s nothing new.

As soon as I have some test results to post, I’ll do that.

If you’ve been on this treatment, I’d like to hear from you.

 

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