Category: Myeloma

Myeloma

I’m out of the TNB-383B trial

Things have taken an unexpected turn.  While my blood tests looked pretty good, my PET scan results were disappointing. The PET scan showed that I’m not okay, and I am no longer eligible for the trial because of disease progression.

Here’s what the report said:

MUSCULOSKELETAL: Multiple hypermetabolic osseous lesions in the appendicular skeleton, including the right proximal humerus, left distal humerus, and bilateral femurs. Index right proximal humerus lesion SUV max 2.11 (image 114).

Multiple hypermetabolic osseous lesions in the axial skeleton, most significant in the right eccentric L1 vertebral body, SUV max 8.37 (image 184). Index proximal left sacral lesion SUV max 6.40 (image 243). Index distal left sacral lesion SUV max 4.89 (image 255). Index lesion in the left iliac bone adjacent to the SI joints, SUV max 2.42 compared to 1.9 previously (image 232).

On Tuesday, I had another bone marrow biopsy. On Wednesday, I saw the PET scan with my own eyes. It was a bit horrifying to me. I have never, in my 18 years with myeloma, had bone issues.  Suddenly, there it is.  “Worsened diffuse metastatic disease in the axial and appendicular skeleton in the setting of multiple myeloma as detailed above.”

I have a few FDA approved drugs I can try, and I have some more trials I could try.  There’s one drug called selinexor that I’m passing on.  My doctor says it takes a lot of meds to control the nausea associated with it.  I would simply do almost anything to avoid nausea. The other FDA drug I haven’t tried yet is something called BLENREP.  Here’s what caught my attention immediately: “BLENREP can cause changes to the surface of your eye that can lead to dry eyes, blurred vision, worsening vision, severe vision loss, and corneal ulcer. Tell your healthcare provider if you have any vision changes or eye problems during treatment with BLENREP.”

I am considering enrolling in another trial.  I’ll get more details on that soon.

 

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.

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

How green tea could help treat bone marrow disorders

http://www.futurity.org/amyloidosis-green-tea-1356282-2/

Jan Bieschke of Washington University in St. Louis studies how proteins fold and shape themselves, and how these processes can contribute to a variety of diseases. He says the compound epigallocatechine-3-gallate (EGCG), a polyphenol found in green tea leaves, may be of particular benefit to patients struggling with multiple myeloma and amyloidosis.

These patients are susceptible to a frequently fatal condition called light chain amyloidosis, in which parts of the body’s own antibodies become misshapen and can accumulate in various organs, including the heart and kidneys.

“The idea here is twofold: We wanted to better understand how light chain amyloidosis works, and how the green tea compound affects this specific protein,” says Bieschke, assistant professor of biomedical engineering at the School of Engineering & Applied Science.

Bieschke’s team first isolated individual light chains from nine patients with bone marrow disorders that caused multiple myeloma or amyloidosis, then ran lab experiments to determine how the green tea compound affected the light chain protein.

“We all want this compound to work in a patient.”

Bieschke previously examined EGCG’s effect in both Parkinson’s and Alzheimer’s disease, and found it prevented dangerous buildups of protein present in both diseases. His team had a similar conclusion in this study: In the lab using samples from bone marrow patients, the EGCG transformed light chain amyloid, preventing the misshapen form from replicating and accumulating dangerously.

“In the presence of green tea, the chains have a different internal structure,” Bieschke says. “The ECGC pulled the light chain into a different type of aggregate that wasn’t toxic and didn’t form fibril structures,” as happens to organs affected by amyloidosis.

Why kale and green tea could be a bad combo

While Bieschke is gaining a greater understanding at the intracellular processes involved, his partners at the University of Heidelberg are working in tandem with him, running clinical trials.

“My group is looking at the mechanism of the protein in a test tube; we are studying how it works on a foundational level. At the same time, clinical trials at the Amyloidosis Center in Heidelberg, with Alzheimer’s in Berlin and with Parkinson’s in China examine the process in people. We all want this compound to work in a patient.”

The research appears in the Journal of Biological Chemistry.

Source: Washington University in St. Louis

One of those weeks

I’m having one of those weeks in which I feel exhausted at the cellular level.  It wears me out to speak, even.

I have new labs to post, but it’ll have to wait until I have a bit more energy.

I think this has been building for a while now.  I decided that I’m going to go back to the University of North Carolina at Chapel Hill Cancer Center(UNC), to an MM specialist, for management of my case.  I want to be sure things are handled properly from now on.  I had switched to a local heme/onc practice for convenience, but was alarmed at the apparent lack of experience expressed in casual comments the doctor made. As you know, myeloma is not something you want to mess around with.  I believe every effort should be made by the patient to get the best care possible for the best possible outcome.

I’ll post the results soon!

In the meantime, here’s a picture of a kitten.

Would you like to adopt a kitten?
Would you like to adopt a kitten?

Just about 8 years

It’s been nearly 8 years now since I checked into the Bone Marrow and Stem Cell Transplant Clinic at Duke for my autologous SCT.

I hate that my transplant buddy, Joyce, couldn’t make it this far with me.  When she told me her time was running out, I didn’t realize how fast it would go.  I thought there’d be more time. Three months, even.  I think it was about 3 weeks instead.

As for me, I am still living an uneventful life.  My MM test result are slowly climbing.  I have no symptoms.  My doctor said we’d wait for a “triggering” event before considering treatment.  He means that we’d wait until I have some symptoms, such as anemia, before undertaking any treatment.

In July, I broke my left shoulder, but it had nothing to do with myeloma. I wound up with something called a Bankart fracture (“bony Bankart”) and Hill-Sachs deformity. A piece of the bone called the glenoid broke off.  The orthopedist explained that there’d probably be no benefit to attempting surgery to repair it.  I will just be at risk for future dislocations, but he didn’t think that would be very likely.  I was happy to avoid surgery.

Here are some some pictures that show the injury.

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Farewell, friend.

I just found out that my friend, Joyce Wells, has died.  Myeloma took her life.

Joyce and I met in 2003, because she saw something I posted to the ACOR myeloma list, and wrote to me.  I always signed my posts, “Beth in NC.”  Joyce asked where I lived in North Carolina, and it turned out that we were less than a 30 minute drive from each other.  We met for lunch, and were friends ever since.  We scheduled our clinic visits and treatments at the same time whenever we could.  We’d meet for lunch before (or after) and sit along side each other when we were having infusions of something or other.  We tried to schedule our stem cell transplants for exactly the same time frame, but it didn’t quite match up.  Mine started a week before Joyce’s.  Still, our apartments were next door to each other, and we saw each other in the clinic every day.

Joyce WellsJoyce made me laugh.  I’ll never forget how she spoke of stem cell transplant programs as being either “inhouse” or “outhouse.”  Of course, she meant to say inpatient or outpatient.  It stuck though, and that’s what we called it from then on.  She explained what the term, “Massholes” meant.  It has never come up in conversation, but, if it ever does, I’m not going to have to ask what it means.

Dr. Peterson, who we both saw for a while, used to call us the “Myeloma Twins.”  I have to say that, if you can manage it, having a treatment buddy is the best way to get through chemo.

I don’t have anything more to say right now, except that I’ll miss her terribly.  I’ll never forget Joyce.  I’ll try to post more memories of her as time goes by.

Here are blog posts I’ve been re-reading to remember Joyce. I wish I had written more about her over the last dozen years.  Farewell, Joyce Wells

The Leukemia & Lymphoma Society new & improved blood cancer discussion boards

new & improved blood cancer discussion boards

The Leukemia & Lymphoma Society (LLS) is excited to announce our new Blood Cancer Discussion Boards. The discussion boards are a great place to communicate with others who are going through experiences similar to yours. Share stories, ask questions, receive and provide support, or just see what others are saying.

To access the new discussion boards, click here. If you were previously registered for the boards and have not yet logged in to the new site, you will need to reset your password. You can learn about using the discussion boards in the Getting Started Guide.

If you have any questions, please contact an LLS Information Specialist:

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