[christinepughParticipant]

Hi Sarah
Sorry only just seen this post. When did Henry start with the PN ? How have they decided that it's permanent ? Chris's symptoms are just starting to slightly subside after 6 weeks he's had an acupuncture session and got another booked in. It's a real nuisance and no let up with the pain.

Thanks for replying and hope the chest infections stay away for Henry.

Christine

[suewiParticipant]

Hi Christine
Just read your posting, what were Chris's symptoms regarding legs, I am on thalomide and my legs are very weak and wobbly find it difficult to walk, I have no spinal cord comprssion and no pain just this horrible feeling in my legs.

Hope all goes well
take care

susan

[DaiCroParticipant]

My PN started with my frontline CDT… put down to the 'T' of Thalidomide. It was mainly in my feet with only the slightest sensation in my hands. The second wave came with Velcade, which exacerbated the PN in my feet and calves and started to show in my fingers and hands. I am now on Bendamustine… which includes weekly Dex and Daily Thalidomide.

The PN eased somewhat after my SCT but came back with a vengeance during Velcade and has stayed with me ever since. I have only been back on Thalidomide for 4 weeks and it is too early to say if there has been any further deterioration… although I do believe my fingers are a little worse.

I haven't had a lot of pain as such but I describe the sensation as akin to coming in from playing in the snow as a child, where your feet feel like they have got chilblains… and my feet are like that on a permanent basis. Its a numb feeling but comes alive if I try to move my feet and if I kick anything with my bare feet it is excruciating.

I suppose I am stuck with this condition now and my only hope is that my fingers don't get any worse. I love playing my guitar and singing and I have already had to abandon any subtlety in my playing due to the PN.

My 2p worth.:-)

Dai.

[christinepughParticipant]

Hi Susan
Chris was on Velcade and symptoms were pain both dull and shooting in his feet and legs, fizzing in his feet and numbness but no weakness. Hope that helps but check with your doc as it needs keeping an eye on.

Christine

[christinepughParticipant]

Dai

Chris's allo has been postponed due to rising levels in the space of time its taken to organise the donor etc.He has been admitted as an in-patient for intensive chemo last week and is now on a short course of Thalidomide, so we are keeping a close eye on the PN.

It has eased a little but it's doubtful that it will go away. It's a cruel blow that a side effect takes away from you the things that you love. Chris was very fit before the treatment but muscle wastage and feeling generally crap has prevented him from running and cycling. He was walking every day which he now finds difficult because of the PN. Annoying for you.

Christine

[Author]

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