Category: Myeloma

Myeloma

Sponsafier NASCAR design contest

Congratulations! Your support for “The Survivor” has pushed the car ahead into the semi-final round of the Sponsafier NASCAR design contest!

“The Survivor” is a myeloma awareness racecar designed by patient Keith May and the IMF, and it is one of only 10 cars (out of over 3,100 submitted!) to advance to the semi-final round in the “Cause” category! Our cause, of course, is “beating myeloma to the finish line,” as Keith has written on the car.

Our spot in the semi-final round is an exciting chance for all myeloma supporters to be in the driver’s seat as we raise awareness of myeloma and the International Myeloma Foundation.

To help “The Survivor” forge ahead into the finals, please vote every day for the next 10 days by logging onto http://nascar.myeloma.org and simply clicking the “vote” button! It takes only 30 seconds, and you won’t have to enter an email address or any personal information!

The winning entry will be built as a full sized car, showcased at a NASCAR race, and your votes can help push us across the finish line!

The messages on the car are simple: “Beat myeloma to the finish line,” and simply “beat cancer.” What better way to get there than by racing?

Visit http://nascar.myeloma.org to cast your vote once per day! And spread the word! Voting is open until September 23.

Help get Toyota racing to beat myeloma

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.
http://www.sponsafier.com/#/gallery/view/367247

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.

Incidence of myeloma by country

Paula just added an interesting post here:

http://feresaknit.wordpress.com/2010/08/04/whys-africa-not-red/

Our toxic environments have a lot to do with why we got myeloma. (see http://www.sciencedaily.com/releases/2009/08/090813142148.htm)

From the maps linked in Paula’s blog, you can see that the industrialized countries have more MM in their populations.

There’s some information to be found on myeloma cancer clusters by googling:

http://www.google.com/#hl=en&q=meyloma+cancer+clusters&aq=f&aqi=m1&aql=&oq=&gs_rfai=&pbx=1&fp=ea2cd8eab02d18af

I’ve been really lazy about posting these days.  There’s a lot going on.

Test results and other stuff

I had blood drawn on 6/3, and got the results back today.

Test: Result (Normal Range)

IGG: 455 (600-1700)
IGM: 34 (35-290)
IGA: 466 (40-400)

This is from last time, so you can see there’s not much change!

IGG: 466 (600-1700)
IGM: 31 (35-290)
IGA: 408 (40-400)

I found a new web site that I’m still checking out.  It has details about lab tests and other info.
http://www.clinlabnavigator.com/

Anyway, the doc says I’m still smoldering!

I was at Five Points Pet Resort a couple of weeks ago, where this green-winged macaw engaged us.  He has a lot of personality!

StoryCorps/NPR Broadcast on Multiple Myeloma

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
listen!
Sy Saliba talks to his daughter, Yvette, about her mother, Pat, who
passed away from multiple myeloma, a type of blood cancer, in 2005.
http://bit.ly/93jYOB

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.

Myeloma Blogs web site gets a facelift

MyelomaBlogs.org, a blog feed aggregator for patient and caregiver myeloma blogs, has been revamped.  It’s all new, thanks to our good friend, Lopo Lencastre de Almeida of iPublicis.

The site has a new look and will allow you to read a short excerpt of posts, search posts and browse by tags.  You can also help spread the word by sharing blogs posts on many social networking sites.

You’ll see what I mean.  Head on over to http://www.myelomablogs.org/.

More facebook time

Most of us need to find reasons to spend more time on facebook, so Margaret and I have come up with a facebook group for myeloma patients, caregivers, friends, family and others.

http://www.facebook.com/group.php?gid=108654495840465

From Margaret’s blog:

  • And finally, as if we weren’t busy enough!, day before yesterday a friend and I decided to create a Multiple Myeloma Support Group on Facebook. It’s a private support group (that is, FB users who are not group members cannot read anything we write)…so, if you belong to FB, please join us! The group was created less than 48 hours ago, and we already have 74 members… By the way, this group is intended mainly for myeloma, SMM and MGUS folks and caregivers, but other cancer patients are welcome, too. Click on: http://www.facebook.com/group.php?v=app_2373072738&gid=108654495840465#!/group.php?gid=108654495840465 (I hope the link works…please let me know if it doesn’t). Then click on “Request to join.” If your membership request doesn’t get approved immediately, that simply means that Beth and I aren’t online, so please be patient. Anyway, until there is a cure, we need to provide support for one another…and also exchange useful information about both conventional and alternative treatments, with a bit of humor sprinkled around, whenever possible…!
  • While you are at it, you can also become a fan of my blog on FB: http://www.facebook.com/photo.php?pid=3900082&id=600258519#!/pages/Margarets-Corner-Living-with-smoldering-myeloma/312414599519?ref=ts

Please join us there. Stop in and say hello!

Lingering effects of peripheral neuropathy

I started to get some neuropathy just a few months into my first treatment, which was Thalomid. I knew it was a possibility, but I’m hopelessly optimistic, and assumed it wouldn’t happen to me. I quit taking thalidomide within 8 months, because I didn’t want the neuropathy to progress beyond a point that I thought would severely impact my quality of life.

What I ended up with is numbness in my feet and sometimes pain. It started out as a pretty intense burning feeling just three months after I started treatment in 2003.  My feet felt as though they were on fire!  From there, it progressed to numbness.  It sort of feels like my feet aren’t my own. Shoes are no longer comfy.

After treatment with Revlimid and then Velcade, my neuropathy progressed some more.  It changed a little, too.  I now have some significant pain at times. I have to work with my feet up.  I can’t sit at a desk, or anywhere, really, for very long. If I’m seated with my legs down for more than a half hour, I end up with pain up to my knees. I have to get my legs elevated or even lie down to get some relief.

When I first began to feel the effects of peripheral neuropathy (PN), I even had some trouble walking.  I’m used to it now, so I no longer have to keep my eyes on my feet when I walk.  It took a while for me to adjust.

A few days ago I was attempting a an exercise that involved hopping. It was really weird, because I didn’t really know where my feet were.  I had to ask someone else if my feet even left the ground!  That evening, while I was walking the dog, I tried something I hadn’t done in ages.  I tried skipping, just for the heck of it. I couldn’t do it!  Is that something I forgot how to do, or is the PN messing with me?

I decided to look for some information on the web, and found some facts on Livestrong.com:

What are the symptoms of neuropathy?

Peripheral neuropathy can affect the nerves which allow you to tell the position of your hands or feet, the nerves that allow you to sense hot or cold, or the nerves that carry pain sensation. The types and severity of neuropathy symptoms vary greatly. It is difficult to determine the degree of peripheral nerve injury only by the symptoms produced. Peripheral neuropathy symptoms are almost always greatest at night.

Common signs and symptoms include:

  • Numbness or tingling, especially of the hands or feet
  • Pain or cramping, especially of the hands , feet or calf muscles
  • Sensitivity to touch or temperature
  • Loss of reflexes
  • Muscle wasting in the hands and feet
  • Weakness, especially in the feet or hands
  • Clumsiness
  • Loss of balance, particularly in the dark
  • Dizziness, especially when getting up from a bed or a chair
  • Sexual dysfunction

Are some survivors at greater risk for neuropathy?

Neuropathy may occur from cancer or the treatment received. The following types of cancer may bring a higher risk:

  • Lung
  • Breast
  • Ovarian
  • Myeloma
  • Lymphoma and Hodgkin’s disease
  • Testicular

Here’s a link to the entire article: http://www.livestrong.org/site/c.khLXK1PxHmF/b.2660677/

I even found that they have a group for discussion of neuropathy secondary to drugs:

http://www.livestrong.com/groups/group/livestrong-neuropathy-secondary-to-drugs/