Hello,

I found a post you submitted a while back (20th June 2011) where you described your sudden onset of PN and WM dx. I have a few questions re your post and I hope you don't mind me writing to you directly even though this post is about a cream for PN! Here goes:

I'm so sorry to hear that you've been dx with WM.

I had a sudden onset of PN in both feet in Oct 2010 and was diagnosed with cancer (Waldenstroms Macroglobulinemia) 6 weeks later. The IgM level at dx was 7,500 mg/dl (Dec 2010), but is now 230 mg/dl after 6 cycles of FCR (chemotherapy).

I have tested negative on EMG and NCV. Even so, my PN is severe. I can't wear shoes (only Crocks) and I can only be on my feet for an hour a day. I take Lyrica and Amitrypteline. The PN is actually getting worse even though the IgM level has fallen so nicely. They can't find anything else that makes the nerves unhappy so I can only hope that it will eventually get better now that the underlying cause (high IgM which destroys the myelin sheath) has been treated.

1) Did you have an IgM level of 8,000 mg/dl at the time of dx? Has that come down to 2,000 mg/dl?

2) How bad was your PN at the time of diagnosis?

3) I suppose you, like me, had chemotherapy first (?) and then Ritux maintenance (as I understand every 3 months). This is important to me: at what point in time did the PN get a bit better?? Was it during chemotherapy or much later?? I'm hoping your answer might give me some sort of hope - that's why it's important!

By the way, the life expectancy of WM is now 12 years - it was 5-7 years a few years ago. New treatments (e.g. using Rituximab in the chemo combo) has extended the life expectancy.

Sadly I can't give you my email adress as I've only written three posts.

Take care,
Grete