Category: Myeloma

Myeloma

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.

Message from Pat & Pattie Killingsworth

Hi Beth-
I attended IMF conference in Twin Cities last weekend. Some interesting opinions and exciting news about maintenance therapy with or without a transplant. Go to www.multiplemyelomablog.com and follow my reports. How are you feeling? Hope all is well- Pat

Pat & Pattie Killingsworth
Pat@HelpWithCancer.Org
St Croix Falls, Wisconsin
Toll-Free 866-336-1696

Myeloma treatment could be advanced by discovery

Have you seen this news?  Could this lead to more effective myeloma treatment?

Multiple Myeloma Genome Unlocked
Discovery paves way for better therapies for some blood cancer patients, experts say
Posted July 29, 2009

WEDNESDAY, July 29 (HealthDay News) — The sequencing of the first three multiple myeloma whole genomes has been completed by U.S. scientists, who said this success will lead to a better understanding of this form of blood cancer and advance efforts to develop new therapies.

The analysis of DNA from more than 50 patient samples was conducted as part of the Multiple Myeloma Genomics Initiative. Overall, more than 250 patient samples have been collected and additional multiple myeloma genomes are being sequenced, according to a news release from The Broad Institute.

The first three complete genomes should be available online to researchers within the next several months, the news release stated.

The data from this research “will play an important role in developing better treatment options for individuals who derive little benefit from existing therapies and may ultimately help provide multiple myeloma patients with the most appropriate treatment for his or her disease. Furthermore, knowledge from this effort could also benefit patients with other types of cancer,” Louise Perkins, chief scientific officer of the Multiple Myeloma Research Foundation (MMRF) and the Multiple Myeloma Research Consortium (MMRC), said in a news release from the Broad Institute.

This research initiative “has created an unprecedented opportunity to examine an extraordinary breadth of genomic information to pinpoint the most important genes and cellular processes driving the disease,” added Jeffrey Trent, co-principal investigator on the Multiple Myeloma Genomics Initiative. “Such a remarkable dataset exists for very few other cancers; it will no doubt pave the way toward personalized medicine for multiple myeloma patients.”