Myeloma And Neuropathy: A Personal Story

Today's post from multiplemyelomablog.com (see link below) is a personal story of living with the disease and the neuropathy that frequently comes with it. Myeloma is basically a cancer of the plasma cells and can have significant life-changing consequences. The writer has no connection with HIV but when you read about the experiences with the neuropathy treatment drugs, with which many of us are familiar, you may be able to relate it very closely to your own situation. Whatever the cause of your neuropathy (and there may be more than one potential cause), many of the experiences with both the disease and the neuropathy drugs are similar and that alone may help you feel less alone in coping with the problem.

Pat’s Medical Update: How do I feel?
Posted on February 19 2013 by Pat Killingsworth

How do I feel today? That depends on what you mean by “feel.” By feel do you mean my energy or pain levels? How about emotionally? Dropping Revlimid from my chemo regimen (still on weekly Velcade and 20 mg dex) has jump-started my numbers. All my blood counts are back to normal and my energy levels are up.

Great! Emotionally, my stress levels are relatively low. Money is tight but the bills are paid. Pattie and I are getting along just fine. Watchful waiting? I’m on cruise control, ignoring the fateful meeting I have set with my myeloma specialist, Dr. Alsina, in three weeks. Why fateful? Because that’s when I will learn if Velcade and dex alone are keeping my myeloma at bay, or if we will need to add Revlimid back into the mix as a temporary fix until we can decide which new therapy direction to go.

So energy levels are good–the best they’ve been since before my stem cell transplant 20 months ago. Emotionally things are fine. That leaves pain.

How do I feel? I’m hurting! A pair of old lesions have left big holes in my right hip which is now riddled with arthritis, making it difficult to walk. Nerve compression in my lower back hasn’t improved. If I sit and write, read or watch TV for longer than 10 minutes I can barely get up. I get headaches and stingers caused by previous damage to the vertebrae in my neck. And my peripheral neuropathy (PN), best I can tell caused by my myeloma and using Revlimid for the better part of six years hasn’t improved as much as I would have hoped since I stopped using Revlimid several months ago.

Small doses of oxycodone (20 mg spread throughout the day) works miraculously to dull pain in my back and hip. Without it I don’t think I could walk! It helps numb my PN, too.

Yesterday morning I forgot to take my Gabepentin. By mid-afternoon my hands and feet felt like they were on fire–a reminder that that medication is also working for me or things would be a lot worse.

I have written often about how difficult living with multiple myeloma can be for those of us that are fighting battles on two or more fronts. How about our myeloma brothers and sisters that have kidney issues. Think they feel good going through dialysis? Those of us with bone damage? Or patients and caregivers racked by anguish and depression?

I have trouble separating how I feel from those I hear from everyday. As you can plainly see, it makes it difficult for me to focus! Today’s post is supposed to be all about me!

I feel good when I’m laying down and sitting for short periods of time. I feel good once I’m up and moving for awhile. And I feel better if I take my meds as scheduled.

Like a lot of things in life, I guess what could or should be a simple question isn’t always so simple. My advice? Don’t ask me, “How are you?” unless you have a few minutes to sit-back, put your feet up and snooze. Ask a simple question and get a long-winded answer!

As always, you can ask questions or let me know how you feel by commenting here or emailing me:

Pat@HelpWithCancer.org

Feel good and keep smiling! Pat

http://multiplemyelomablog.com/2013/02/pats-medical-update-how-do-i-feel.html