[millieParticipant]

Hi
I was diagnosed in August and have had 5, 3 week sessions of chemo, I am not sure what I have and do not understand several of the drugs to which others on this site refer. This is all quite new to me and I know very little. I live in Spain and so you probably have had more explanations than me.
My question is
has anyone experienced peripheral neuropathy? It is driving me mad, and the consultant simply says it is the treatment but I am sure I could get some relief, paracetamol is doing nothing.

I am due for stem cell transplant in December so any advice on this would be welcome too
Thanks

[dickbParticipant]

Hi there,

I have peripheral neuropathy in my feet, at best it's a warm sensation, at worst it's like walking on needles, especially bad at night with cold feet.

I suspect you are on Velcade as it is a known side effect. You will probably be on Dexymethasone and Cyclophosphomide as well. I don't use pain relief, I have the pain killers prescribed for the general bone pain and a pair of warm socks to wear in bed. Apparentley the key is to keep the feet warm and the circulation going. Hope that helps.

[millieParticipant]

Thank you, socks in bed it is then tonight

[jeapal23Participant]

My husband has neuropathy pain. It has been really bad at times. He is now taking Oxycontin this helps and he has oramorph for break out pain. It was the Velcade that gave it him, he had 4 1/2 cycles before they stopped it, he was getting all this pain a problem with his walking they thought he had a spinal compression but thank goodness he didn't. the Velcade also was not reducing the PP level so that is why they stopped it. He has now started Revlimid with dex, lets hope that sort things out

[clarabellParticipant]

Hi Millie,

My Dad suffered with this and asked doctors for capsicum cream, to rub on his feet It is hot as its made from a from of chillies so should be used very sparingly but helps (well helped him!) Also drinking lots of water is advisable. On a positive note PN did get better after about 6 months. Hope this helps C x

[CarolsymonsParticipant]

If you are taking thalidomide then that drug can also cause neuropathy.

Carol

[keithmtParticipant]

I was also diagnosed in August, triggered by strange pins and needles in my lower legs and feet. Apart from that I have no other classic symptom of MM so I lucky that they’ve caught it early.

My PN in my feet is still there but it’s manageable. Strangely, my feet are worse in bed when my feet are hot.

My treatment is CTD so I’m on Cyclophosphamide. My para-protein levels have dropped from an initial 57 to 33 to 21 so things are going in the right direction. I’m just coming towards the end of my 3rd monthly cycle and the consultant reckons I may need 6 before I’m ready for Stem Cell Transplant. I hope you manage to get yours done in December.

Good luck

Keith

[JohnoParticipant]

I know this subject has been done before but I’m hoping a bit of advice directly related to what I am experiencing will help. I have for some time had really bad tingling, shakes and cold in my hands which stops be writing, doing up buttons etc. Also my feet are the same but are swollen and up my ankles. Also, and I can only put this down to months of sitting around I cannot walk without a Zimmer frame. It feels like I’m walking on painful sponges, if that makes sense. I don’t have any strength in my leg muscles and the muscles look wasted.

I started out on this journey last October with 3 fractured vertebrae hence the sitting round, the back feels a lot better although I am on painkillers, including fentanyl, garbapentin and paracetamol. The doctors have just taken me off of Thalidamide in readiness for further stem cell harvesting next Tuesday and I haven’t had Velcade for 2 weeks tomorrow.
I was hoping that coming off off these would help but not as yet. As a matter of fact my right foot feels so ‘spongy ‘ that I fell yesterday even though I was using the frame.
Any advice or comments would be appreciated. Also feel free to ask any questions. John

[alpenatorParticipant]

Like many others I suffer from PN in m y feet with the same feelings as others have described. I do find that bed socks help at night.
I also suffer from very cold hands which I suspect is also PN.
All not very pleasant but better than some side effects.

[RobertmauriceParticipant]

Following my first relapse I began a course of Velcade and Dexemethasone. After 3 cycles I was in complete remission and was offered a second SCT. I turned this down when I was told my remission would probably last only 12 months. I think I have an aggressive form of MM. So I carried on with the Velcade. The neuropathy in my feet started after the 4th cycle and after the 5th cycle the pain was very severe, so I was taken off the treatment. That was 8 weeks ago but the pain has worsened. My doctor has prescribed gabapentin but said it would take some time to work. I find the best self-help treatments are massaging my feet (not easy),secondly and much better- lying on my back with my feet up the wall! I will try cocoa butter – thanks for the tip. Has anyone tried acupuncture?
Robert

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