Friday, May 21, 2010

Neuropathy and other notes

I noticed yesterday that for much of the day, I had a barely perceptible tingle in my feet.  I first noticed it around noon and it persisted until I went to bed.  Today, I feel it less, but it is still there.

I wouldn't say it's enough to get me overwrought, but I am starting to get a tiny bit concerned.  I doubt it is from the Revlimid, since I didn't develop neuropathy while on Thalidomide and that's much more likely to cause it.  The more likely culprit, then, is the Velcade.

I am told Velcade-related neuropathy can go away if the Velcade is discontinued.  I am obviously not going to do that, but I might see if they want to dose reduce back to 1mg/m2 from my 1.3.  The higher dose is because of my unfavorable sub-type of the disease, even dose-reducing that could deter me from my progress which I don't want to do.

I visit Little Rock next week for PET, MRI, bone marrow and potentially kyphoplasty on my back.  It should be an interesting few days, as always!   I wasn't originally going to submit to the PET but I confess that I'm interested in getting as much information as possible given that the stray monoclonal light chain wandered into the immunofixation analysis the other day.

Among the questions I want to ask BB about:
- neuropathy
- reimmunization thoughts
- use of polymerase chain reaction test to determine molecular remission

Obviously I'm also keen to see if I have reached "MRI complete remission" yet.

Lastly, I was invited by ASCO (the American Society of Clinical Oncologists) to attend their upcoming conference in June.  I would ***LOVE*** to do this, but my schedule will not permit it.  However I do hope to do the next one.


  1. i have an undeniable tingling and pain in right leg into right hip that occurs about once a week and last for most of the day. right shoulder is numb most of the time though i do not experience the tingling or pain. and here is the kicker; i have not taken revlimid since june 2009 with this condition starting sometime during the revlimid treatment and with me noticing the same condition soon after completing the transplant in august 2009. have you heard of others experiencing the same prolonged effects affects? (sorry the confusion has set in and I can’t decide which word is correct)


  2. Nick:
    FWIW: I'm told that neuropathy associated with Velcade does typically resolve when Velcade is discontinued. I experienced slight neuropathy during my Velcade treatments. Not enough to get in the way of anything (I played guitar just as badly with or without the neuropathy). When Velcade was discontinued, the neuropathy completely disappeared.

  3. Nick, my father had myeloma. I know how hard you are battling. Keep up the fight. I am rooting for you.

  4. Nick -- I have also heard that the neuropathy connected with Velcade does resolve, but perhaps the tingling is associated with your back issues... maybe the kephoplasty will take care of that?
    MSG for Ed - how's your guitar playing now?
    I intend improvements in all areas for you, Nick, with your visit to Little Rock.

  5. Sandy: My guitar playing would be a lot better if I practiced more. But my ability is not related to my myeloma treatment. It was unaffected by the neuropathy and any of the medications.

    Nick: you are now a portal.