Category: Myeloma



I forgot to post an update after the kyphoplasty.  It wasn’t as much fun as I thought it would be!  Since I’ve been getting Zometa for years, my bones are very hard.  The neurosurgeon wasn’t used to seeing this with myeloma patients, whose bones are usually a lot softer than mine are.  I remembered that, when I was first diagnosed in 2003, the doctor who performed my first bone marrow biopsy remarked about how soft the bone was.

Out came the mallet and a tool that I was told resembles a nail.  I could feel and hear the sounds of the mallet hitting the “nail.”   I felt as though I was in one of those “Saw” movies. I was awake during the procedure.  That’s just how it’s done.  I had fentanyl pushed through my IV whenever the pain and torture of it was more than I could handle.  They also used versed for sedation.

After gaining access to the interior of the L5, the doctor took some marrow to be biopsied.  Next, they performed a radio frequency ablation of the marrow to kill it (and any myeloma in there).  Finally, the injection of the cement was done.

For a long while after the kyphoplasty, I had nerve pain (think sciatica), which is finally subsiding. It took some weeks for me to fully recover for that reason.  I’m really glad it’s over, and I hope I never have to do it again.

L5 Compression Fracture

Starting some weeks back, I was experiencing lower back pain.   It wasn’t getting better. It was getting worse!  I report anything out of the ordinary to the research team (I’m in a phase I clinical trial), and had been doing so with regard to this ailment.

Since the pain was only getting worse over time, my doctor decided to order a PET scan so he could tell if there was some myeloma blowing up in there.  I had that PET scan a little more than a week ago, and it was determined that there was a compression fracture at L5.  As far as I know, I’ve never had a vertebral fracture before this.

I saw someone from neurology as a next step, and I decided I would take their advice and have kyphoplasty.  That’s scheduled for Tuesday, the 26th.  I’m really happy to be having that done, because it’s said that the majority of people in my situation get pain relief almost right away.

In the last several years, I’ve broken my shoulder, a rib, and now this.  If I had to rank them in terms of which one hurt the most, I don’t think I could. Each one had its own unique brand of horribleness.  The L5, though, affects just about everything I do, from walking to standing and sitting. It’ll be a relief to get the kyphoplasty done.

The procedure will be done in the Interventional Radiology Department so the doctor can watch his progress using fluoroscopy.

I’ll let you know how it goes.



I’ve had two doses of Evusheld during the last month or so.  After my initial injections, there was an advisory from the CDC to get a second set of injections.  It’s thought one dose isn’t effective enough.

Evusheld is Astra-Zeneca’s pre-exposure prophylaxis for covid.

I keep reading that people seem to be unaware of its existence, and it’s sitting in stock rooms and pharmacies unused. At the same time, there are news articles saying it’s hard to get.  I didn’t have any trouble getting it where I receive treatment


Bone Marrow Biopsy

I had a bone marrow biopsy yesterday.  It was supposed to be tomorrow, but it got moved up a few days so they can try to get me admitted on the 25th to start the trial.

I hung out for a while afterwards to talk to the lab folks, and they answered all of my questions about the processes involved in getting the samples to the labs. This photo is a picture of a piece of the bone they removed.

If you’ve had one of these procedures, you know that the provider (that’s what they call doctors, NPs, & PAs now) withdraws some of the liquid from the bone and also take a sample of the bone itself. The part of the procedure that’s most uncomfortable for me is when they aspirate the liquid part of the marrow.  It produces a sharp pain the goes all the way to my feet. It’s over in an instant.

Mayo Clinic has a good reference here: Bone marrow biopsy and aspiration – Mayo Clinic.

My provider did a terrific job, and I think I have to say that it was the best bmb ever!  I am definitely going to leave a good review on Yelp.  Now there are two people I know I can ask for, and I know the pain will be insignificant and it will be done quickly. I just love it when it turns out that way.

Before I begin the procedure, I ask for Ativan, by the way. I get 2 mg in my port, and I’m good to go. I shouldn’t say this out loud, but I kind of wish I could have Ativan a lot more often!

In a previous post, I included a picture I took of the biopsy needle.  That was from 2005, so there’s definitely been some improvement in the devices they use. Some of the providers use an electric drill. I’ll try to get a picture.  I’ve only had a drill used once.

The bmb was the last thing I had to do to get qualified for the trial. Now I just need to wait for the full test results to be reviewed by the drug company. More to come soon.


I’m out of the TNB-383B trial

Things have taken an unexpected turn.  While my blood tests looked pretty good, my PET scan results were disappointing. The PET scan showed that I’m not okay, and I am no longer eligible for the trial because of disease progression.

Here’s what the report said:

MUSCULOSKELETAL: Multiple hypermetabolic osseous lesions in the appendicular skeleton, including the right proximal humerus, left distal humerus, and bilateral femurs. Index right proximal humerus lesion SUV max 2.11 (image 114).

Multiple hypermetabolic osseous lesions in the axial skeleton, most significant in the right eccentric L1 vertebral body, SUV max 8.37 (image 184). Index proximal left sacral lesion SUV max 6.40 (image 243). Index distal left sacral lesion SUV max 4.89 (image 255). Index lesion in the left iliac bone adjacent to the SI joints, SUV max 2.42 compared to 1.9 previously (image 232).

On Tuesday, I had another bone marrow biopsy. On Wednesday, I saw the PET scan with my own eyes. It was a bit horrifying to me. I have never, in my 18 years with myeloma, had bone issues.  Suddenly, there it is.  “Worsened diffuse metastatic disease in the axial and appendicular skeleton in the setting of multiple myeloma as detailed above.”

I have a few FDA approved drugs I can try, and I have some more trials I could try.  There’s one drug called selinexor that I’m passing on.  My doctor says it takes a lot of meds to control the nausea associated with it.  I would simply do almost anything to avoid nausea. The other FDA drug I haven’t tried yet is something called BLENREP.  Here’s what caught my attention immediately: “BLENREP can cause changes to the surface of your eye that can lead to dry eyes, blurred vision, worsening vision, severe vision loss, and corneal ulcer. Tell your healthcare provider if you have any vision changes or eye problems during treatment with BLENREP.”

I am considering enrolling in another trial.  I’ll get more details on that soon.


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.

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.

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