Hey! Run, do not walk, over to Margaret’s blog now and read about the work of Jay Bradner, who just may have figured out a way to stop myeloma dead in its tracks. After watching the video below, I started wishing I was a mouse! (The video has since stopped working. Apologies for that!)
I wanted to share this link with my readers, because it’s an important discussion about cure vs control and other aspects of myeloma treatment or management.
Please read it and let me know what you think. I’ve long thought I probably should have held off on treatment for as long as possible, and my post-SCT strategy is to stay treatment free for as long as possible. I expect to withhold treatment until symptoms affect QOL.
This was done in 2007, when Ms. Ferarro was in remission. She expressed concern in this video about the fact that drugs that allowed her to stay alive were not available for all. This continues to be the case. Unless you have a lot of money or good insurance, you may not be able to get the treatment many of us count on to keep us among the living. In this video, she’s getting Velcade and talks about research and funding.
This is from the Millennium Pharmaceuticals web site. Just a snippet here, with the URL so you can read more. Chances are good you’ve already heard about this if you’re on Velcade.
As a precautionary measure, Millennium is voluntarily recalling a limited number of lots of VELCADE® (bortezomib) for Injection 3.5mg/vial due to the possibility that small white polyester particles may be observed upon reconstitution of VELCADE drug product.
Millennium is undertaking this recall in consideration of the potential for safety issues if the affected product is administered to patients including local injection site reactions, inflammatory responses and thromboembolic events.
The VELCADE Package Insert (Section 2.7) and Investigator Brochure have specific guidelines recommending visual inspection for particulate matter or discoloration prior to administration. Do not use the reconstituted product if you observe particulate matter or discoloration.
The U.S. Food and Drug Administration (FDA) has been informed of this voluntary limited recall.
This action is limited to the VELCADE lots listed below, produced by one of our manufacturers before certain process improvements were implemented.
I was in a trial once, and got a letter about there being some particles found in my drug, too. I wonder how polyester and other things get into our drugs?
A reader just told me about this. How cool! I’m going to go vote for the “Myeloma Survivor” right now! You can vote every 24 hours.
I thought you may be interested to know that the International Myeloma Foundation has entered a Toyota racecar design in a contest called Sponsafier. The winning entry will be built as a full sized car, and your votes can help push myeloma awareness across the finish line.
The idea and the car design come from a myeloma patient in Normal, Illinois. Keith May has covered the car with slogans to raise awareness of myeloma, and the work being done to beat it. The IMF has named the car “The survivor.”
“Survivor” is one of several hundred entries in the Sponsafier contest. Some entries are just artistic designs and some like Keith’s support a cause. For the next 12 days, please log onto nascar.myeloma.org to vote for Keith’s design. Please also ask your friends, families and colleagues to vote too.
This is a great opportunity to educate a new audience about myeloma and blood cancers, the advances that have been made in treatment and the challenges that lie ahead.
From a reader:
I’m writing from StoryCorps, America’s largest nonprofit national
oral history project. Because our broadcast this morning on NPR talks
about the experience of a family affected by multiple myeloma, I
thought it might be worth sharing with your readers. Please have a
Sy Saliba talks to his daughter, Yvette, about her mother, Pat, who
passed away from multiple myeloma, a type of blood cancer, in 2005.
StoryCorps is an independent nonprofit project whose mission is to
honor and celebrate one another’s lives through listening. Since 2003,
tens of thousands of people from across the country have interviewed
family and friends through StoryCorps. Each conversation is recorded
on a free CD to take home and share and is also archived for
generations to come at the Library of Congress.