Category: Cancer

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/.

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/

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

Oral mucositis caused by your myeloma treatment

I was told about about a research project that’s underway.  I have no affiliation with the group, so please do your due diligence.  If you participate, let us know how it went.

We are currently looking for people that have suffered “oral mucositis” (mouth inflammation or sores) as a result of cancer treatment to participate in 45 min telephone interviews.

The purpose of this research is to understand what does or does not work as treatment for this condition.

The interviews can be scheduled this week and next and participants receive $100.

Please respond with interest to contacts below. If this is not you, please refer or post for others that may have interest.

Kind Regards

Jan Mallery-Groom RN
Clinical Project Manager
+510-922-9710
recruitingresourcesllc.com

Possible link between formaldehyde exposure and myeloma

According to a recent article published in the Journal of the National Cancer Institute Advance Access published online on May 12, 2009, it looks as though exposure to formaldehyde could raise one’s risk of lymphohematopoietic malignancies (blood and lymph cancers).

For an extremely statistical look, read the abstract -> http://jnci.oxfordjournals.org/cgi/content/abstract/djp096

I had some exposure to formaldehyde during my twenties. Nobody can say for sure if that was the risk factor for me though. I worked around plastics.  A certain type of plastic, called high density polyethylene,  gives off fumes that contain formaldehyde when it’s heated to a high temperature.  We stood around at a factory with melting HDPE around us all the time.