[markyParticipant]

I was diagnosed with MM back in April. I had 4 cycles of VTD, the last being 1/2 dose Velcade due to Periperal Neuropathy. I had a great initial response to the treatment however when the Velcade was reduced the MM started to build. I am now on Lenalidomide, Ixazomib and dexamethasone. This seems a much easier regime but peripheral neuropathy is still a problem and getting worse. I can’t sleep at nights, my feet are numb and it seems to be reaching my knees. My mobility is compromised. The question is – Do I just have to put up with this as an inevitable side effect? If I don’t put up with it will my MM treatment be compromised? The difficult part of all of this is the open ended nature of the treatment. I have no goal and don’t relish the thought of spending the rest of my days with this level of discomfort.

[paulapurpleParticipant]

Hi there,

Unfortunately once you get Peripheral Neuropathy it rarely goes away. Velcade is a big culprit for causing this but so is thalidomide and as Lenalidomide is part of the same family, I’m guessing this is why it’s getting worse. Mine went up to my knees too, however when I stopped treatment I now only get it in my feet and hands.
My advice is to talk to your team now to see what can be done but you may have to accept it.
You might like to join the UK Myeloma Facebook page; it’s a very friendly group with a wealth of experience. That way you will get lots of answers to your questions very quickly.

Good luck

Paula

[Author]

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