Velcasde/Neuropathy

HiThere:

Am having trouble with my feet.  I am 12 years out with MM and now going through my 4th session of Velcade.  I've had the dose changed twice due to a very bad rash, and then problems with the steriods while taking the lowest dose of Velcade possible.  Now we're going to try increasing the Velcade a little and hope this works on getting my m-spike down.  Originally scheduled for transplant, this has all changed and I've been told "too risky" for me. I just don't tolerate meds well at all. 

My feet are killing me.  I have awful feet to start with - hammertoes, bunions and just plain crooked toes.  Even before treatment my feet hurt and the bones are a real problem.  But now I have a constant burning...and everyone suspects I'm now suffering with neoropathy.  Can anyone describe the actual feelings of neuropathy....does it last forever...it is going to get worse as I continue taking the Vel.  Never had any of this during my first go round 12 years ago. Of course I'm 12 years older and now experiencing a lot more problems.  Does anyone know of Vel causing problems with the tendons in your feet?  Wpuld appreciate hearing from some of you wonderful people on the message board.

Thanks,

Maryann

My wife was on Velcade for about 6 months and had neuropathies in her feet. Numbness, tingling, etc. One year later they have diminished some, but not gone away entirely.

Regards,

Craig

Hi Mary Ann,

I was also on Velcade/Dex and had three sessions and a piece of another.  The velcade started after the thrid session and i am up most nights because my feet hurt so much.  You are describing neuropathy perfectly.  I have tried both neurontin and am now on Lyrica.  It does help but the numbness does not go away.  I can deal with a lot of numbness if the pain will stop. I am getting ready for transplant and need to find a drug that will give me some relief..Sleeping in the recliner is no longer working. My biggest problem is sleep and my feet touching the sheets. I have tried all sorts of shoes and really now have bought bigger sandles and now wear them with soft thick socks..Not sure if there is a fix here..My feet just get worse, not better.  On my worse days it feels like the pain shoots out the end of my toes.. Keep trying different drugs until something works.

My best to you.. Gayle

From Anna,

Hi MaryAnn, Unfortunately once the Neuropathy starts it doesn't go away.  Sorry. Dad's a MM going on 11 years that we know of and had Neuropathy most the time.  

Your friend,

Anna

Hi Maryann,

I'm sorry you're having so many problems at the same time.  I have neuropathy from the Velcade also.  This is what is feels like for me: 

Numbness (like when you're out in the cold), and the tingling (when the feet are warming up from the cold), pain can be in the tips of the toes and also pain all over the bottom of my feet from standing or being on them for a long time.  Sometimes the pain eases when I elevate my feet.  Walking on hard floors makes it feel worse, so I wear shoes/sneakers or cushioned slippers.  If I don't wear anything, then walking on hard floors is very painful.  Carpets are okay.

I don't take anything for the neuropathy because I don't want to deal with side effects of other drugs.  Right now I'm not on Velcade and the neuropathy has gotten better, but it takes a long time.  While on the Velcade, my dose was lowered because of the side effects.

I've never heard of Velcade causing problems with the tendons. 

I'm sorry I couldn't help you, but just wanted to let you know the neuropathy is very common.

Good luck and take care.

Lois

Hi All (craig, Gayle, Anna, Lois)

Thanks for the info.  It doesn't sound like this is going to be anything that I can shake real quick, if at all.  I know what you mean about the shoes and walking.  Between the tendon problem and the bottom of my feet burning I'm wearing 5 pair of shoes a day - have even taken to using a cane.

But since Velcaade seems to be the only drug right now that I can take, looks like I'm stuck.  Will let you know if it continues.  Again, thanks for your response.  

Best to all of you.

Maryann

Maryann,

I forgot to tell you something I'm going to try.  I just bought a pair of hiking shoes.  When I compared them in the store to running shoes/walking shoes, they gave me much more stability.  The sole is wider than the other ones.

This morning, my feet were still hurting when I got up, so I'm going to try them out for the next couple of days.  I'll let you know in a few days how my feet are.

Take care,

Lois

Mary Ann,Lois,

I can so relate to to the five pairs of shoes a day and the desperation to stop the "friggin" pain.  Well a couple of years ago I had back pain that I was given Fentanyl for.  I usually do not keep old meds but the Fentanyl was still in the bottom of the pill box in it's wrapper(expired in 2008). 50 micro grams and the other night anticipating the trip to see my nephew with Down's Syndrome and he is newly in remission from testicular cancer.  I wanted to make the trek one more time before my transplant as he is use to our monthly trips, I won't be able to go out there for awhile,AND I have the most beautiful granddaughter that he needed to hold! I carefully placed the Fentanyl patch on my belly the night before and hoped for the best!!  WOW! By 3pm the foot pain is gone, even before that the foot pain had much improved.  Even so much I could make the couple of block trip to the Hallmark store in Laramie! Watching my 27yr old nephew and his childlike ways walk a few blocks pushing the stroller and then bend over to kiss my 6lb granddaughter, then he would push her a bit further, another kiss and a few more steps.  The Fentanyl allowed this to happen...I'm calling my onc tomorrow for an RX...Sadly my granddaughter goes home tonight.. But only to fly back in a few weeks! By the time she is 6 months she will be a pro at flying..But by then I will be able to fly to see her and my transplant will be history...Another plus! I slept till 9:25AM. I am curled up in my recliner writing to u all, not suffering with pain any longer..I am counting the hours till I can call in the AM..Think I will cook for the family tonight..Happy, Happy! Gayle

Good Evening Maryann;

I am 12 years out with MM.

CONGRATULATIONS on reaching this milestone! A true fighter if ever there was one! 

Now we're going to try increasing the Velcade a little and hope this works on getting my m-spike down. 

Have you considered adding Revlimid to your cocktail? Rev and Vel tend to counteract each others' side effects. I was on REV/VEL/DEX and experienced no side effects. Tell your doc that you want to add Rev .5/m2 to your cocktail.

Good luck and take care;

Kevin

Gayle:

Congratulations on your granddaughter!  I know the feeling.  Terrible to say...but I hae 12 step grandchildren and love them all...but...when my daughter had her little girl, my heart just turned over - and still does.  She is my angel on this earth and keeps me straight.  We don't cal anything ugly or stupid, but I have a "silly back' and "crazy feet" and when she asks if my back or feet are acting silly or crazy, the pain just goes away.

I have tried the patches for other things and actually was going to ask about using some lidoderm patches I have - from nerve pain from shingles.  Never can tell, they might work.  At this point we have decided to spread out the neurontin that I had been taking for restless leg throughout the day and see if that works.  Have to find something because the doc wouldn't even let me do treatment this past Tuesday.  And I do need that!

Stay well, keep flying and enjoy that baby.

Maryann