My husband has had severe painful neuropathy as a side effect of taking velcade which has now been stopped. He no longer has the pain but still has the numbness, tingling and difficulty walking.
I wondered what other peoples experiences are like of this condition, specifically how long it lasted for ?
Hi Samantha Jane
I'm not a member of this group so don't have the experience you're looking for but noticed that your post had gone unanswered. It may be that no one in this group has had this experience or just that they haven't seen your post yet. By replying to you it will bump your post back to the top of the page where it will be more easily seen.
I know it's not the same as hearing about someone's first hand experience but you could post your question about peripheral neuropathy in ask a nurse and one of the specialist cancer nurses will aim to respond within 2 working days.
When you feel up to it, it would be really useful if could pop something about your husband's journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
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Hi Samantha Jane,
I’m sorry you’ve not had a reply yet. I know PN is quite common after myeloma treatment, but this group is quite quiet at the moment so it may take a while for someone to come along with some tips. Personally, I have been very lucky not to experience it, but I know from others that it can be very difficult to deal with, so I definitely feel for you and your husband. One thing I remember people saying quite consistently is to try to remain as active as possible as I think that can help. I also understand that once off the treatment, things should improve, although I’m also aware of people having problems for quite a long time, I really hope that is not the case for you.
Here’s hoping you find some good answers soon.
All the best
I did have a reply from Jonty and Scott has asked the same question to the myeloma UK , facebook group.
He stopped having velcade over three months ago so we were hoping to see some improvement by now. I think the severity of the neuropathy may mean it takes longer to recover.
Generally he is feeling a lot stronger as he does a lot of exercise. We hired an exercise bike which we subsequently purchased. I then read that these are sometimes available for use during the SCT.
Cycling is easier than walking at the moment,
That’s great, I’m glad you’ve managed to get some information. Re: exercise bikes, yes, depending on the centre, they can be available during SCT. I had one in my room for the allo, although not for the auto. It’s a good way to try and keep the fitness up if walking is proving hard. How is your husband doing? Is the plan to have the SCT soon?
Hi. I am new to this group. I was interested to read this discussion about PN.
It is some months later now, but how is your husband getting on, Jane?
Unusually, I got severe nerve pain in my hands before diagnosis and treatment, so it would appear to be a side effect of the Myeloma itself. I have severe nerve damage in both hands. At one low point I couldnt do anything for myself - my food had to be cut up for me and I couldnt hold a pen. As I live on my own, I was in despair.
However, since my GP prescribed Pregabalin and Amitriptyline, my hands are much improved and I can do almost everything now. The Myeloma treatment might also be helping.
It will be interesting to see what happens when I come off treatment, hopefully in January.
Dear trick, It’s good to hear you are having some success with the drugs your gp prescribed for the pain in your hands. I noticed in your profile you had a delayed diagnosis, this is more common amongst blood cancer patients than you might be aware, bloodwise are currently trying to get better education for gps to change this. I hope your treatment is progressing well, will you be having a stem cell transplant.
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