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.

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.

End of Cycle 5 – Talquetamab and Daratumumab plus Pomalyst

During cycle 5, the study team was given some freedom to adjust my dose of dexamethasone.  We could do anything, from eliminating it completely to decreasing it.  For 3 cycles, I was having 40 mg of dex a week.  Dex is rough.  If you have taken 40 mg of dex for any amount of time, you know what I mean.

I tried no dex at all, and I ended up having a fever because of CRS (cytokine release syndrome). The next week I took 10 mg of dex to tamp down my immune system just a little.  I still had fevers. So, this week I’m back at 40.  This sounds crazy, but I would rather have a fever than take dexamethasone.

My nails are improving, so that’s nice.  I now have one really good nail on my left index finger.  That’s the one I can use to open cans. I’ve taken my finger nails for granted my entire life.  The other nails are growing out from the bottom, so it’s only the very tops that tend to be splintery and need to be kept trimmed so they don’t catch on things.

My sense of taste has not improved.  Everything still tastes watered down.  There are still things I can’t taste at all. Yellow mustard is one of those things. Another thing I can’t taste is butter. If I have buttered toast, it tastes like toasted bread with Crisco on it. It’s not worth it.

I still have a sensitivity to heat. That hasn’t changed at all.  I’m glad summer is behind me, and I don’t have to be tethered to a fan and/or air conditioning. Doing chores around the house will still cause me to get too hot and get that uncomfortable feeling of electrical zaps to my head.

I have occasional itchy scalp.  This was the worst on the week when I had not taken any dexamethasone. It’s crazy-making!

After work last weekend, I stopped to take a look at a covered bridge that’s on the way home. This is the Pisgah covered bridge. I was curious about why covered bridges were built, so I looked it up. According to Wikipedia, they were built that way to improve durability. A covered bridge could last up to 100 years.

Cycle 4 of talquetamab and daratumumab

I’m in cycle 4 now.   I still go every week for treatment, but here’s something to look forward to:  At the end of cycle 6, I’ll have a PET scan.  If everything looks good on the PET scan, my treatment schedule will change to every other week.

My Pomalyst dose has been decreased to 2 mg/day.  It’s been noticeably easier to tolerate than 3mg.

I am getting daratumumab every other week now.  I’m still getting talquetamab every week.