Category: Myeloma Treatment

Myeloma Treatment

“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.

Analysis of the immune system of multiple myeloma patients achieving long-term disease control

The article is called “Analysis of the immune system of multiple myeloma patients achieving long-term disease control by multidimensional flow cytometry.” It makes me think they mean long-term disease control was achieved by flow cytometry. That would be pretty awesome. They really mean that the analysis was done using MFC.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3533663/

Highlights (determined by me)

Multiple myeloma remains largely incurable. However, a few patients experience more than 10 years of relapse-free survival and can be considered as operationally cured. Interestingly, long-term disease control in multiple myeloma is not restricted to patients with a complete response, since some patients revert to having a profile of monoclonal gammopathy of undetermined significance.

My comments: How can the monoclonal gammopathy be characterized as being of undetermined significance, when the pt has had MM? Obviously, there is a significance. I’m just picking. I know what they mean. It’s good to see that they’re asserting that complete response is not required. I have never had that. I think people put too much emphasis on it.

In summary, our results indicate that multiple myeloma patients with long-term disease control have a constellation of unique immune changes favoring both immune cytotoxicity and recovery of B-cell production and homing, suggesting improved immune surveillance.

My Comments: None, really. I just like the word constellation. :) Dr. Peterson used to use that word a lot.

Despite the fact that until recently MM was considered incurable, the introduction of high dose therapy/autologous stem cell transplantation and novel drugs has made it possible for a small fraction of patients to attain long-term (≥5 years) disease control even in the absence of a complete response, after reverting to having an MGUS-like profile. The underlying mechanisms leading to disease suppression in these patients are largely unknown, although immune surveillance has been hypothesized to play a critical role.

My Comments: This is me, in a nutshell. The small fraction.

Six years ago

Six years ago on this date, I had a stem cell transplant at Duke Medical Center.

You can read what I wrote that day by clicking on the picture of my stem cells.  I didn’t document it very well.  I remember feeling just terrible when the stem cells were being injected into my line.  I felt so bad that they gave me something that pretty much knocked me out.  It felt like someone punched me in the chest.  I felt sick, too.  I can’t even remember if I took this picture, or if someone else did.  Ativan. :)

Stem Cells