Tag: Neuropathy

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/

Lyrica

My doc gave me an rx for Lyrica a few weeks ago to help with the neuropathy.   I posted on the mailing list to get an idea of what kinds of side effects others had experienced when they used it. Mostly, I’d say they were not very positive responses.  Almost everyone quit taking Lyrica because of side effects such as edema. One patient’s experience was pretty severe. I won’t be taking it.  My PN isn’t present 100% of the time (although the numbness is).  I’ll just take tramadol or some other medication PRN.

The issue is that I plan on making a very long trip out of the country in the spring.  The PN is worse when I can’t either be moving or have my legs up, so I was concerned about taking an extremely long flight.  It might just be best for me to be prepared with some vicodin (someone recommended this).  Once I’m there, I’ll just need a good night’s sleep to recover and all will be well.

If you have any experience with chemo-induced PN, let me know how you handle it.

Long car ride

On Sunday I drove a friend to Rocky Mount, NC to visit some friends. It was 2 hours each way, with a few hours in between. By the time I got home, my feet felt as though they were in flames and someone was beating on the soles with a hammer.  From the knees down felt numb.  This happens to me when I have to sit for too long.  This is a result of treatment with thalidomide and Velcade.  Luckily, the pain and discomfort goes away by the next morning and I’m left with the numbness in just my feet.

What is it that makes the PN so much worse while sitting?

B vitamins to improve neuropathy?

I had a visit to the podiatrist Friday to have a foot problem checked out. I also let him know about my grade 1 neuropathy. He suggested something called Metanx, and gave me two 5 day sample packs. It’s a Rx only supplement. It actually says, “Medical food” on the box. That means it won’t be covered by insurance, unfortunately. I’ll give it a try though, and let you know how it works. He said it’s not for the painful kind of neuropathy. For that, he prescribes Lyrica or Cymbalta, which he says are well-tolerated.
Here’s the Metanx web site if you’re interested.