Category: Myeloma

Myeloma

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:

lls

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.

Test results from September 11, 2013

These are the latest test results.

IgM
25 mg/dL (60-263)
IgG
411 mg/dL (768-1632)
IgA
891 mg/dL (68-378)

FLC with ratio
Kappa: 0.15 mg/dL (0.33-1.94)
Lambda: 2.60 mg/dL (0.57-2.63)
K/L free ratio: 0.06 (0.26-1.65)

CBC w/differential

WBC 6.6 4.5-11.0 x(10)3/microL
Lymphocytes % 31.3 20.5-51.1 %
Monocytes % 6.0 1.7-9.3 %
Granulocytes % 62.7 42.2-75.2 %
Lymphocytes # 2.1 1.5-5.0 x(10)3/microL
Monocytes # 0.4 1.7-9.3 x(10)3/microL
Granulocytes # 4.1 1.4-6.5 x(10)3/microL
RBC 4.37 4.00-5.20 x(10)6/microL
Hemoglobin 13.3 12.0-16.0 mg/dL
Hematocrit 40.9 36.0-46.0 %
MCV 93.4 80.0-100.0 fL
MCH 30.3 26.0-34.0 pg
MCHC 32.5 31.0-37.0 mg/dL
RDW 13.4 11.6-13.7 %
Platelets 162 150-440 x(10)3/microL
MPV 7.2 7.0-10.0 fL

Other stuff

Beta-2 microglobulin
1.6 mg/L  (Normal range is 1.1-2.4)

 

Serum Protein Electrophoresis

Total protein 6.7 6.0-8.5 gm/dL
Albumin 4.0 3.2-5.6 gm/dL
Alpha-1-globulin 0.2 0.1-0.4 gm/dL
Alpha-2-globulin 0.5 0.4-1.2 gm/dL
Beta globulin 1.1 0.6-1.3 gm/dL
Gamma globulin 1.0 0.5-1.6 gm/dL
M-spike 0.3 gm/dL
Globulin, total 2.7 2.0-4.5 gm/dL
A/G ratio 1.5 0.7-2.0

 

Comprehensive Metabolic Panel

Sodium 139 136-144 mmol/L
Potassium 4.0 3.6-5.1 mmol/L
Chloride 107 101-111 mmol/L
CO2 23 22-32 mmol/L
Random glucose 106 65-140 mg/dL
BUN 12 8-26 mg/dL
Creatinine 0.72 0.4-1.0 mg/dL
eGFR >60 2
Calcium 9.0 8.9-10.3 mg/dL
Albumin 3.9 3.5-5.0 gm/dL
Protein, total 7.2 6.5-8.1 gm/dL
Alkaline Phosphatase 95 50-86 Units/L
ALT (SGPT) 51 14-54 Units/L
AST (SGOT) 34 10-41 Units/L
Bilirubin, total 0.7 0.4-2.0 mg/dL
Anion gap 8.5