Category: Myeloma

Myeloma

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/

Myeloma Planet – the list of every myeloma blog in the world

There’s a new list of myeloma blogs, which will make it easier to keep up on your favorite patient and caregiver blogs. It’s not really every myeloma blog in the world, but I’m trying.

If you want your blog to appear on the list, get in touch with me. Please know that  I can only add blogs that have an RSS feed and are written by patients or their caregivers.

Visit the planet » Myeloma blogs

Latest electrophoresis, proteins and free light chains

Here are my latest results.

Specific Proteins

Test Name    Result       AB    Normal Range   Units
IGG          466          L     600-1700       MG/DL
IGM          31           L     35-290         MG/DL
IGA          408          H     40-400         MG/DL

Electrophoresis

The SPE pattern demonstrates two bands of restricted mobility in the gamma region.

Immunofix, Serum

Monoclonal component typed as IgA Lambda. Concentration of monoclonal protein determined by serum protein electrophoresis is 0.4 g/dL.
Monoclonal component typed as IgA Lambda. Concentration of monoclonal protein determined by serum protein electrophoresis is 0.3 g/dL.
*Suggestive of a monoclonal component typed as IgG Kappa. Concentration of monoclonal protein is too low to accurately quantify.

* This is new! Previously, I’ve only ever had just two m-spikes. That’s not enough?  I vaguely remember seeing this on one other report, so maybe it’s something that comes and goes.  In any case, it’s not enough to measure, so I’m not alarmed.

Serum Free Light Chain Assay

Test Name                  Result     AB  Normal Range    Units
Kappa Free, Serum          0.1380     L   0.33-1.94       mg/dL
Lambda Free, Serum         1.24           0.57-2.63       mg/dL
K/L FLC Ratio              0.1113     L   0.26-1.65       mg/dL

Still, no myeloma treatment for over two years.

My two m-spikes

I wanted to post my results, and got a little behind! Here it is:

SERUM PROTEIN ELECTROPHORESIS: COMPARED TO 6/1/09, NO SIGNIFICANT CHANGE IN PREVIOUSLY CHARACTERIZED (2) IgA-LAMBDAS FROM 0.25 TO 0.26 G/dL AND FROM 0.19 TO 0.15 G/dL.

The two m-spikes have been staying this way for several months now. The complete bone survey report says, “No
aggressive lytic or sclerotic osseous lesions.”

Good, eh?

Dr. Brian Durie to host a teleconference

Dr. Brian Durie, Chairman and Medical Director of the International Myeloma Foundation, will host a teleconference next week to highlight key myeloma presentations at the upcoming American Society of Hematology Annual Meeting. The teleconference will take place on Monday, November 30th at 11 a.m. ET.

Discussion topics will include:
§ Treating the full cycle of myeloma
§ Pipeline drugs – what’s next and why they’re needed
§ Genetic variations in survival and outcome

Here are the dial-in details for the teleconference:

800.860.2442 (U.S.) or 412.858.4600 (outside of the U.S.)
Pass code: IMF

International Myeloma Foundation’s 3rd Annual Comedy Celebration for the Peter Boyle Memorial Fund

Ray Romano hosted the IMF’s third annual Comedy Celebration for the Peter Boyle Memorial Fund a few days ago. I’m so glad to see the IMF getting these big names to help raise money for research. Every life lost to myeloma is an important one, which is why these people are giving their time and lending their names to this cause. Read more at www.myeloma.org.

I really respect and admire the people at the IMF.  I’ve been to three of the patient and family seminars and recommend them to anyone I meet who has myeloma or cares for someone with myeloma.  I hope you’ll make a contribution so the IMF can find a cure and continue to educate patients and their families.