Author: Beth

I was diagnosed with MM in January of 2003. I underwent various treatments, including thalidomide/dex, revlimid/dex, dex alone, a clinical trial of CNTO 328, and Velcade, Doxil and dex until late August, 2007, when I had an autologous stem cell transplant after high dose melphalan. I experienced what's known as a very good partial response (VGPR). Since then, my myeloma has been stable.

A Second Cancer

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It’s been a long time since I posted anything.   Recently I was diagnosed with a second primary cancer.  I’ve had surgery and am well on the way to recovery.

My hematologist and the head and neck cancer specialist agreed it wasn’t necessary for me to undergo aggressive surgery for this cancer, so I didn’t have a radical neck dissection.  Both agree that it’s likely my suppressed immune system (from myeloma and treatment) was part of why the second cancer developed.

I’ll explain more about what happened when I can.

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Participate in Research

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GRYT Health is looking for relapsed/refractory multiple myeloma patients to share their experience. Participants will be asked to complete two virtual research engagements: a 10-minute survey and a 90-minute interview. If you are interested in learning more about this research and/or participating, please visit our study webpage HERE or contact us at projects@grythealth.com.

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Cy-Car-D

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Right now, I’m getting cyclophosphamide (Cytoxan), carfilzomib (Kyprolis), and dexamethasone every week.  I’m tolerating it very well.   Even though I had it in 2019 and eventually relapsed, it’s working for me.

After this, I’m hoping to try TAK-573 in a clinical trial.

Abstract
Background TAK-573, a humanized, anti-CD38, IgG4, monoclonal antibody genetically fused to two attenuated IFN?2b molecules, was designed for targeted delivery of attenuated IFN?2b to CD38 expressing (CD38+) cells, utilizing a unique epitope of CD38 that does not compete with current anti-CD38 therapies. Preclinical evaluation of TAK-573 confirmed activation of type I IFN signaling in CD38+ cells inducing direct anti-proliferative effects on multiple myeloma (MM) cells and direct and indirect immune cell activation. Here we provide the preliminary analyses of the pharmacodynamic data currently available from the ongoing Ph I/II TAK-573-1501 clinical study in patients with relapsed/refractory MM (NCT03215030).

Collins, Sabrina, et al. “357?TAK-573, an Anti-cd38–Attenuated Interferon Alpha (Ifn?) Fusion Protein (Attenukine™), Has Demonstrated Ifn? Receptor (IFNAR) Pathway Modulation in Patients with Relapsed/Refractory Multiple Myeloma.” Journal for ImmunoTherapy of Cancer, BMJ Specialist Journals, 1 Nov. 2020, https://jitc.bmj.com/content/8/Suppl_3/A218.1.

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Kyphoplasty

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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.

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Relapse and future plans

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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!

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L5 Compression Fracture

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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.

 

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Back to getting talquetamab every week

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I was getting talquetamab every other week for what seemed like a short while.  I think it might have been two cycles. The talq dose was triple the dose I had been receiving every week.  I had pretty severe headaches on the increased dose.  I tried to hang in there, but it was bad enough that the only thing that would help was oxycodone.  I was wasting a lot of time feeling really miserable and was considering quitting the trial.

Now that I’m back on weekly talq, I feel better.

These are the side effects I continue to have.  I am in cycle 12 now.

  • Altered sense of taste.  Most things are tasteless or flavor is significantly reduced.
  • Difficulty swallowing.
  • Dry mouth.
  • Sore scalp.
  • Weird kind of electrical zappy, prickly feeling when I get too hot.  It doesn’t seem as bad as it once was, but I will see how it goes as the outdoor temperature increases.
  • Chills and fever 4-5 days after injection. I use Advil to treat and report it to the on-call oncologist, no matter what time of day or night.
  • Headache that starts 3 days after injection. No longer severe. It can be treated with OTC Excedrin or similar. It usually only lasts one day.
  • Fatigue.  This could also be due to other drugs.
  • Nail issues. My nails chip and tear. They also are very sensitive, making it a little bit difficult to type. I can’t do things like open cat food cans or drink cans with my nails anymore. They no longer look like this, thank goodness.

I am also on daratumumab once per cycle.  I take 40 mg of dex each week. I am on a 21 day cycle of Pomalyst.  I have Zometa every 3 months.

Do you all have to take an antibiotic and antiviral prophylactically?

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Evusheld significantly protected against symptomatic COVID-19

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Astra Zeneca says “Evusheld significantly protected against symptomatic COVID-19 for at least six months in PROVENT Phase III trial in high-risk populations.”

https://www.astrazeneca.com/media-centre/press-releases/2022/evusheld-significantly-protected-against-symptomatic-covid-19-for-at-least-six-months-in-provent-phase-iii-trial-in-high-risk-populations1.html

I’m glad I received the injections.  I’ve read that we will probably continue injections every 6 months while needed.

I’ll be getting my next vaccine booster on Monday.  I was told to wait until 30 days after the Evusheld injections to get the booster.

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