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.

Cy-Car-D

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.

Kyphoplasty

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.

Relapse and future plans

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!

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.

 

Back to getting talquetamab every week

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?

Evusheld significantly protected against symptomatic COVID-19

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.

Evusheld

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

 

Almost through cycle 8 of talquetamab / daratumumab / pomalidomide trial

I’m nearly finished with cycle 8.  For those of you who’ve asked, the side effects have remained the same throughout for me.  the situation with my nails has improved, though! They’re not peeling away from the bottom of the nail anymore.  Still, I have issues at the tops of the nails.  I have to keep them trimmed or they catch on things and tear.  They just seem really fragile, splitting and tearing without provocation.  The same thing happens to the nails on my toes.

My sense of taste hasn’t changed.  I still have little ability to taste certain things.  When I can taste something, it’s a bit different than what I’m used to.  For example, I can taste sweet things, but there’s an underlying bitterness to it. Some things have no flavor at all. I think I mentioned before that dill pickles have no taste.  Mustard is another thing I can’t taste.

I am still having difficulty swallowing.  I  always need to have water close by at meals to help me swallow certain foods.  Sometimes I take pills with yogurt, because that makes them easier to swallow.  I completely avoid some foods because they’re just too hard to swallow.

I still have a weird reaction to becoming too warm, whether it’s just the ambient temperature in a place (or outdoors), or I’ve exerted myself doing yard work or something else. What I experience is something I can only describe as being electrical shocks all over my head and upper body.  I described it to a friend who has MS, and she said that happens to her, too. She has the same sensitivity and reaction to heat.

Twice, since I started this treatment, I’ve had nausea and vomiting.  Usually, I have periods of time during which I feel queasy.  I take Zofran or compazine and usually feel better.  I  haven’t decided which works best for me.

I still have dry mouth issues.  The only concern I have about that is how it’s affecting my teeth.  I’ll see the dentist on Monday and will find out if anything’s changed in the last 6 months.

Every Other Week!

I was just told today that, starting with cycle 9, I’ll be moving to an every other week treatment schedule.  That’s amazing news.  The weekly treatment schedule has been trying.  I also found out that I had been getting daratumumab just once a month with cycle 8.  I hadn’t realized it, but was thinking I had just lost track of when I was getting it. I am looking forward to seeing how the reduction in frequency of administration will improve the side effects I’ve been experiencing.

One thing that will happen, though, is that my talquetamab dose will be increased to make up for the change in schedule. Early on, I experienced acute pancreatitis from talq.  My dose right now is something like a quarter of the original dose,  I’ll have to come in for labs in the weeks between treatment just to make sure my pancreas is ok.

One of the staff here told me that they know of a patient who had to drop out of the trial for some reason, and that this person had been free of any treatment for 8 months since then.  That’s encouraging. It would be nice if this drug could give us some time away from treatment at some point.

Masks

I walked into the cancer center this morning and saw someone with his mask pulled down below his nose and someone else with no mask on at all.  Someone else had their mask pulled down to their chin. I realize that nobody wants to have the mask police job, but this is the cancer center. There was a volunteer, clinical staff, and security right there.  How can patients and visitors not understand how important it is to protect themselves and others by properly wearing a mask?  I’m so disappointed.

I bought a shirt with this graphic.  I wish I’d worn it today.