How green tea could help treat bone marrow disorders

Published / by Beth / 2 Comments on 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

Revlimid, Darzalex and Dex

Published / by Beth / 1 Comment on 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/

One of those weeks

Published / by Beth / 1 Comment on 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

Published / by Beth / 2 Comments on 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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Joyce Wells

Farewell, friend.

Published / by Beth / 4 Comments on 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

Philo

Here’s some news

Published / by Beth

I got a dog!

It’s been some years since my faithful dog Buddy died rather suddenly. I’ve missed him terribly. A few months after his death, I adopted a sick old collie, who I took care of until kidney failure took her life.

This summer, I was working on a client’s network (the client is Five Points Pet Resort), when I realized there was a cute little white dog following me around, wagging his tail and just looking all happy and goofy.  I asked one of the staff, “What’s the story on that little dog?”  She told me that he had been found wandering a country road a few months ago.  Someone dropped him off there, at the resort, hoping they could find his owner.  They tried for two months to either find his owner or a new home for him.

He’s a crazy little guy.  I always had older dogs, which are usually pretty calm.  He’s the first small dog for me, and the first dog I’ve ever had that was under 5 or 6 years old.  The vets he’s been to think he’s probably between one and two years old.  He’s a wild little shredding machine!

Philo

His name is Philo.  He loves to run and play, and loves to chew up stuff.

Stay tuned for blood test results later this month.

Sunny Fall Day

Published / by Beth

This is my cat, Peeps, taking a snooze on the back porch on a sunny October day. Peeps has been with me for a few years now.  She showed up at my house one winter.  I called her Peeps because she used to stand up at the door and peep into the house through the windows. She ran away from me whenever I tried to approach her at first.  Not anymore!  Now she comes running whenever she sees me or when I call for her. She’s an amazing and wonderful cat!

Peeps Asleep

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

Published / by Beth

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:

lls