Author Archives: Beth

Darzalex as a single agent

Published / by Beth / 2 Comments on Darzalex as a single agent

I haven’t posted any updates lately. The reason is, after having had MM for so long, I just don’t think about it very much.  It’s not like it was in the beginning.  I used to wake up every day, and that was the first thing I’d think about. That was 2003.  It’s just a part of my life now.  I’ve been very fortunate to have had few problems.

RevlimidIn January I started on Darzalex, Revlimid and dex.  I’d taken Revlimid before, in 2006.  You can read all of my previous posts about Revlimid here:  https://www.myelomablog.com/?s=Revlimid. I have not tolerated it well, so I stopped taking it at the end of January.  In fact, I felt so miserable that when it came to taking that last pill in the bottle, I couldn’t make myself do it.  Revlimid causes me to have some really awful GI issues.  I think I can understand what people must go through when they have IBS or similar afflictions.  Revlimid causes me to have GI cramps, diarrhea, constipation, and some nausea. That was at a 25 mg per day dose.  I may be trying a 15 mg per day dose soon.

The reason I may be trying a lower dose is that Darzalex as a single agent (with 20 mg of dex) has not held my MM back.  Dara (Darzalex or daratumumab), Rev & dex did a great job up front, though.  But since I stopped Rev, the numbers have started climbing.

My doctor wants to try to get me on Pomalyst. In January, we were told that my insurance would not pay for Pom at the same time I’m getting dara. It’s considered an off label use of the combination. He says he thinks he can get it approved this time.  If it doesn’t happen, I’ll use 15 mg of Rev.

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

The Myeloma Twins

Published / by Beth

During the time I was in treatment, I coordinated my doctor visits and chemo with another myeloma patient who lives about 25 miles from here.  We traveled to Chapel Hill appointments together and, when we were told the only treatment left to us was a stem cell transplant, we had ours together through The Duke Adult Blood and Marrow Transplant (ABMT) Program in Durham, NC.  We even had apartments next door to one another!

One of our doctors started calling us the “myeloma twins.”

I’m really glad to have just gotten the news that Joyce is moving to Pinehurst, which borders on Southern Pines (where I live)!  She’ll only be a few miles away, so we’ll get to see each other more often.

Yay!

Test results from February blood draw

Published / by Beth

I got these results last week.  Pretty much the only difference between these results and the last ones is that the IgA is about 200 mg/dL higher.  Last time, it was 663.  The m-spikes are the same.  This time, the kappa/lambda free light chain ratio is just inside the normal range.  IgM and IgG are suppressed, and at about the same levels they were in October.  Why the increase in IgA? My doctor suggested that it may simply be a normal immune response to something.

Blood tests for myeloma Feb 2012

Latest Labs

Published / by Beth

The serum free light chains weren’t back yet when I got this. I don’t think about this stuff as much as I used to, so I probably won’t even call in to ask about it. I’ll wait for my next appointment in a couple of months to find out.

I had been seeing the doc every 4 months, but now it’s going to be every 3 months, due to a small increase in m-spike. The doc asked me if I want to start maintenance, but I said no. The m-spike was somewhere about 0.3 five years ago after I had my auto SCT.
Myeloma blood test results 2012 July

Puppy Mills in North Carolina

Published / by Beth

This was forwarded to me on the AAMC mailing list.

 

This is a picture of a puppy currently residing in a puppy mill in North Carolina. Under present state law, because she has “food, water and shelter” she cannot be rescued. Only when she is dead will she probably get out of this cage.
We are hoping (probably against hope) that the legislature might take some time away from passing a fracking bill, to consider legislation that would define the requirements of “food, shelter and water” a bit better than is pictured here, as well as require exercise and veterinary care.

Puppy Mills in North Carolina

If you agree that this is cruel and inhumane treatment, please let your legislators know. In Moore County, your state representative is Jamie Boles ( jamie.boles@ncleg.net ) and your state senator is Harris Blake ( Harris.Blake@ncleg.net ). You might also address comments to the Senator Pro Tem Phil Berger ( Phil.Berger@ncleg.net ) and Speaker of the House Thom Tillis ( Thom.Tillis@ncleg.net ).

There are a lot of animals in North Carolina that would appreciate your speaking up for them.