Author: Beth

I was diagnosed with MM in January of 2003. I underwent various treatments, including thalidomide/dex, revlimid/dex, dex alone, a clinical trial of CNTO 328, and Velcade, Doxil and dex until late August, 2007, when I had an autologous stem cell transplant after high dose melphalan. I experienced what's known as a very good partial response (VGPR). Since then, my myeloma has been stable.

Classic myeloma? A bit of an explanation.

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On the mailing list we had a discussion about bone disease in MM.  Here’s what Nancy said about it. I hadn’t realized before that IgA patients are less prone to bone disease.  One of my doctors did tell me we’re more likely to have kidney involvement though.

Some people never have bone disease…that’s just the way their myeloma is; just as some people never have kidney problems. The names given to the variations of myeloma are not different. Patients with IgA myeloma are less likely to have bone disease than those with IgG myeloma…and those with IgG myeloma are less like than those with IgA myeloma (or Bence Jones myeloma) to have kidney problems.

Perhaps by “classic myeloma” they are referring to myeloma that is in the bone marrow…as opposed to extramedullary myeloma which is outside the bone marrow….rather than affecting the bones. However, about 80% of patients do have bone involvement, so it is the most common symptom of myeloma.

For more information about multiple myeloma, visit the IMF web site:
http://myeloma.org

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Jupiter! (From Pilot Mountain)

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NASA image of Jupiter
NASA image of Jupiter

I had a chance to see Jupiter Saturday night! The Forsyth Astronomical Society (FAS) had a public observation event at Pilot Mountain State Park.  I looked at the moon quite a bit, too. To be able to see those objects in such great detail is amazing. When I was in college I got to view Saturn one night, but I had forgotten how incredible it is.  The FAS holds four public viewings a year.  I plan on being at the next one!

The FAS members were extremely friendly and eager to share their knowledge.

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Fred Baron dies soon after receiving approval to use Tysabri

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Dallas attorney, Fred Baron, lost his battle with multiple myeloma on Thursday. He was 61 years old. Mr. Baron made the news when he tried to get the Biogen drug Tsyabri to treat the myeloma that was taking his life. There aren’t any reports about whether or not Mr. Baron actually was treated with the drug.

I had never heard of Mr. Baron before a few weeks ago even though he was a supporter of and fundraiser for John Edwards. Edwards was a democratic candidate for president this year and vice president in 2004. He was a North Carolina senator whose affair with a woman who produced videos for his campaign probably ruined his future in politics. According to the Dallas News, Mr. Baron was the friend who got Mr. Edwards’s mistress out of Dodge when it was feared knowledge of the affair would go public.

Elizabeth Edwards, wife of John Edwards, has breast cancer with bone metastasis. It was discovered during his presidential campaign after she fractured a rib while moving some furniture, according to the News and Observer.

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About being registered to vote in more than one state

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There have been some questions lately, especially among college students, about whether it’s ok to be registered to vote in two states.  The answer to that question is NO.  It’s not ok to be registered to vote in two states.  When you move from one state to another, it’s YOUR responsibility to notify the old state that you have moved. According to our local board of elections, it can be considered a felony to maintain voter registration in more than one state.  If you have voted in a state in which you are not a resident, you have committed a crime.  You will want to choose ONE state in which to maintain voter registration, and notify all others.  Contact the board of elections in your area to find out how to do that.  Please do not find yourself in a situation in which you could be tried for voter fraud. Voter rolls are being scrutinized in the battleground states!  Worst case scenario = fines and prison.

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See you at the polls on November 4

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I got my assignment for election day.  I’ll be working at the polls as a greeter, rather than driving voters.  I think this will be more fun.  I’ll get to see more people that way.

I’ll be glad to see this election over and done with.  We’re all getting tired of the negative ads and speeches.  I hope people are just ignoring them.

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Panel: Rehire NC trooper shown kicking dog

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Please read this story and then tell NC Governor Mike Easley’s office and the Department of Public Safety NOT to allow this officer to be reinstated!  In fact, ask them to see that he is criminally prosecuted!

10/18/2008

Associated Press

A former North Carolina state trooper fired last year for kicking his police dog should get his job back, the state government personnel office has ruled.

The State Personnel Commission ruled Friday that the N.C. Highway Patrol failed to prove that Charles Jones’ actions amounted to personal misconduct, the News & Observer of Raleigh reports. The Commission also says Jones should get back pay.

Jones, a 13-year veteran, was fired from his state job last year after he was caught kicking his dog on a cell phone video. The former sergeant was shown suspending the dog from a railing and then kicking it at least five times.

He has been working as a police officer in Apex since earlier this year. A veterinary examination showed the dog, which has been retired from the patrol, was not injured.

The commission also ruled that the patrol lacked clear discipline standards for police dogs and found Jones’ actions were consistent with patrol practices. But the commission did rule that the Department of Crime Control and Public Safety had just cause to discipline Jones “for unacceptable job performance.”

The patrol initially planned to discipline Jones with a lesser penalty but fired him after the governor’s office got involved. Seth Effron, a spokesman for Gov. Mike Easley, referred questions Friday to the Public Safety Department.

Secretary Bryan Beatty had not seen the panel’s decision but “still believes that the Highway Patrol made the right decision in dismissing Jones, and that we will appeal the decision,” Highway Patrol Capt. Everett Clendenin said.

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Information from: The News & Observer, http://www.newsobserver.com

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Fred Baron, Myeloma and Tysabri

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Have you read about the furor over Fred Baron’s quest to get Tysabri to attempt to treat his myeloma?

According to his son’s blog, they believe it could help prolong his life. Andrew Baron says that Biogen, the maker of Tysabri (a drug used to treat MS), will not allow him to have the drug.  It is, however, being tested on MM patients in a phase I trial.

I still have to do some reading on this drug. The side effects are potentially serious, but, when you have only weeks left to live, I don’t suppose that matters.

Andrew’s blog:  http://dembot.com/post/54498664/open-letter-to-james-c-mullen-ceo-of-biogen
http://www.pharmalot.com/2008/10/biogen-tysabri-a-dying-democratic-fundraiser/

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