Category: Myeloma Treatment

Myeloma Treatment

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

Revlimid, Darzalex and Dex

It’s been ages since I posted, but that’s because there’s been nothing new to report.

I recently began treatment with one of the new-ish monoclonal antibodies called Darzalex (daratumumab, aka dara).  In addition to Darzalex, I’m taking an older drug that I’ve used before, called Revlimid. Once a week, I take a 20mg dose of dexamethasone.

It had been a little more than 9 years since I had any treatment for myeloma. After a stem cell transplant in 2007, I had no need for treatment.  My disease stayed pretty stable for several years. Then, about 3 years ago, I began to relapse a little more noticeably. Finally, my doctor thought it was necessary to start treatment before I started to exhibit any symptoms. Only recently, my RBCs dipped below normal.

PomalystI’ve had two infusions of dara so far. the first one took several hours to complete because of an infusion reaction. My blood pressure shot up to 203/97 and I developed a wheeze. The treatment was stopped for a while, and then the infusion was resumed at a lower rate. I was at the clinic for almost 12 hours that day.  I’ll write more about that in a future post.

As for Revlimid, I had that in 2006. It did very little for me, but I’m on it because my insurance company won’t pay for Pomalyst. This is because the dara/pom combination is considered “off-label” use.  The price tag for Rev is about $11k per month, and Pom is about $13k per month. My clinic has billed about $45k for each infusion of dara.  It’s hard to imagine, really!

Another first for me is that I’ve had a port implanted to handle the frequent infusions. It was an outpatient procedure. I was in at 7:15 Friday morning and out by 10:30 am. There’s some discomfort, but it’s not terrible. The surgeon prescribed some norco tablets. He even gave me a prescription for a lidocaine gel to apply before port accesses to numb the area before the needle is inserted.

That’s it for me now.  I’ll provide some more details in future posts.

 

https://www.darzalex.com/
http://www.revlimid.com/

Be your own expert!

I was going through papers a few nights ago, when I discovered the handwritten notes that Dr. Richardson (Dana-Farber) had written while I sat in an exam room, there in Boston, in March of 2003.  That was 11 years ago.  I remember him telling me, “We hope to get you to your 50th birthday — and beyond.”  At the time, I was 41 years old.  9 years seemed like a long time.  Well, that 9 years has come and gone.  I’ve known about my myeloma for more than 11 years now, and have been treatment free since 2007.  With the exception of quarterly Zometa.

Notes on my myeloma by Dr. RichardsonWhat have I learned in the last 11 years?  Lots of things. Most important among them is that no two people will have identical experiences with their myeloma disease process or treatment in the aggregate.

If someone asks me what a stem cell transplant is like, I can only tell them about MY experience.  Even if you have IgA lambda MM, and start off with the same lab values I had, and then use the exact same treatments I did, I doubt that you’d have the same experiences or outcomes.  We’re just all different.   When people ask me what I did to last so long, all I can say is, “I have no idea.”  Is it because I waited, and had the SCT later? I don’t know!

The second most important thing I’ve learned is that no other patient or caregiver is the expert, where I’m concerned.  Nobody can tell me anything I already don’t know about how to live with my myeloma. At first, I was scared of treatment side effects and procedures.  I wanted to know what other people thought and did.  I frequently asked, over and over again, things such as, “What do you do for your peripheral neuropathy?” And, “Do you have a sedative before your bone marrow biopsies?”  The answers to these questions did help me at first.  I had to find my own way, though.  I’ve been lucky enough to live long enough to keep trying different things.

At this point, I’m annoyed by people who push their opinions about the “best way” to do this or that.  It’s good to know about all of your options.  Just remember that no other person has your best interest in mind the way you do, or the way your loved ones would.  And, sometimes, you’re going to disagree with even them. Heck, yeah!

I guess I’m just trying to say that there’s no easy answer to the questions you have about what to do when you find out you have myeloma.

Here’s a short list of some things that I’ve found helpful over the years.

  • When you’re on chemo, take the anti-emetics your doctor prescribes.  If they’re not working for you, ask for something different.  Don’t stop bugging your treatment team until you get something that helps.
  • Likewise, if you have pain, keep agitating for relief.
  • For covering a Hickman or Neostar central venous catheter for showering, Glad Press-n-Seal is the best!
  • Get plenty of rest and drink plenty of fluids. Make sure your doctor recommends proper fluid intake for you, especially if you have impaired kidney function.
  • Have fun as much as is possible for you.  Just don’t hurt yourself.
  • Try to laugh.

Hang in there, everyone.