Neuropathy and Velcade

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RE: Neuropathy and Velcade

by Windymoose50 on Fri Dec 25, 2009 12:23 AM

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Oh boy howdy did I have Neuropathy! I also had Velcade. I had an SCT 3 months ago. The day of my sct the massage therapist stopped by to do massage on my feet.  They come on Mondays and Thursdays.  That was the stopping of my pain in my feet. That was a miracle to me!  I still have numbness and both feet are red and swollen and my toenails look like crispy potato chips. I am on Fentanyl 75 mics, Vicodan 5/500 (which is no longer necessary) and Lyrica 125 which I plan to lower to 100 soon.

RE: Neuropathy and Velcade

by ctauri on Mon Dec 13, 2010 01:21 AM

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On Dec 17, 2009 3:52 PM AMW56 wrote:

Hi friends,

  My husband has done really well post SCT.  His counts continue to climb, and he is taking time to rest and grow his "newborn" immune system.  All in all, the SCT wasn't as bad as he was expecting...although the mouth and GI issues were the roughest part.  The Methodist SCT in San Antonio was awesome in making sure he stayed comfortable, he was pre-treated for nausea and any other issues, and the nursing care was superb.  (Being a nurse myself, I can say it was the best nursing care I have ever witnessed). 

  Okay so....now the neuropathy question.  He doesn't have it too bad in his hands, but his feet are hurting all the time.  While he was in the hospital they put on a Fentynal patch for the mouth sores, and it seemed to help the feet.  However, he tried a lower dose and the pain is there really bad now.  He has tried acupuncture, massage, Lyrica, Vit B Complex....with no improvement.  He is now out 2 months from his last Velcade treatment...so we know it will take time. 

Any of you try anything else to decrease the pain of the neuropathy?  The numbness is one thing...and he can deal with that but it is the shooting pain in his feet that is problematic.  He went and had new shoes fitted...by an expert in this, just to make sure that he had a good fit....and the shoes help, but not all the time.

  Any and all suggestions are appreciated.  At this point, we are both just hoping that someone has had some treatment that even improved it a bit.  The old addage that it takes time is certainly something expect, but anything to speed up the process is most appreciated.  AMW

Hi,

I just read your message from December, 2009, about you husband's neuropathy. My husband had a SCT in August, 2010 and about 2 weeks later the neuropathy started. Pain in his legs and feet, numbness, tingling, cramps and burning. He takes Neurotin, Oxycotin, Oxycodone and Cymbalta.  With all this medication, still the pain persists. His legs are so weak that he needs a walker. A neurologist has said that he has nerve damage but that is all the ifo we have gotten. I am just wondering if your husband has gotten better and if he found any medicine that worked for him. Any and all help is greatly appreciated. Thank you.

RE: Neuropathy and Velcade

by Anna9563 on Mon Dec 13, 2010 05:02 PM

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From Anna,

Hi Ctauri, Ok Dadn't didn't do this but I heard it helps for some. Put a bar of dial soap in a sock and put it in the bed with him. 

Dad has tried that stuff that you roll on your feet. Its some kind of hot stuff. Not Icy Hot but similar. Sorry I'm drawing a blank on what its called.  Maybe you know what I'm talking about or someone here does.

Your friend,

Anna

RE: Neuropathy and Velcade

by Windymoose50 on Tue Dec 14, 2010 05:00 AM

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Hi all,

I am now 15mos out from my transplant, I am seeing the light at the end of the tunnel.  My feet are starting to wake up, I felt the bottom of the shower today and it was like a dream today. I am down to Lyrica 100 am and pm.  Fentanyl, I will drop to 50 this week. I finally feel awake and alert. You can also put Vicks Vapo rub on them and then place socks over them at bedtime.  Alpha Lipoic acid also helps, start with 200 or 250 but take no more than 1800 mgs a day. I asked my doc and he was thrilled with me wanting to take this.  So ask your doc to be safe and good luck. My podiatrist said whatever is left at two years will be what neuropathy you will be left with.   Gayle

RE: Neuropathy and Velcade

by maresdl on Wed Dec 15, 2010 02:43 PM

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My mom was on Velcade and had debilitating neuropathy, was seen by neurologist who specializes in oncology patients.  She has been taking Cymbalta for over three years now and has gone from barely walking to minimal pain in her feet (the pain was all the way up her legs).  She did try gabapentin, lyrica and other meds (opiates) which only blunted the pain.  I know it is advertised as a depression med (SSRI) but it has worked well for her.  You may want to inquire about it or other neuropathy meds before going down the opiate path. MDL

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