[DebsParticipant]

Hi everyone,

I've been suffering from quite bad peripheral neuropathy from the velcade I took. I only ended up on about 3 or 4 cycles and in the end it was reduced dose and only once a week because of the neuropathy I was having.

Since I stopped 3 months ago, it has been slightly better during periods of intense chemo (during my transplant) but has now got worse again and hurts more at night. It feels like my feet are burning off, my toes are broken,and I can't bend down easily as my calves ache a lot.

Has anyone any experience of what you can do to help? I am currently on 900mg gabopentin and also take loads of morphine!!! It barely touches the sides!!

My sister who is a physio wondered about tens machines and also whether pessaries could help at all…I know nothing!!!! I have a meeting with a pain specialist in a couple of weeks, but it would be good to go armed with suggestions!!

Thanks all!
Debs x

[brochoParticipant]

Hi Debs just thought do you have any contact with the Macmillan nurses? They are expert in pain relief and so knowledgeable about different types Perhaps you could ask for a referral. I have found minne so helpful in all sorts of ways it might be worth a go for you love Bridget x

[eveParticipant]

Sorry Deb,Slims on Velcade but does not suffer neuropathy I do give his legs a good massage,but i suppose you legs are to painful to touch ,I think Dai has a lot of knowledge and scott you could try e mailing one of them

love Eve

[GillParticipant]

Hi Debs

I think I have said before that Stephen does not visit this site but is always interested in whatever is posted. He has always sufferred from PN and the when on Velcade it became unbearable

He aked me to tell you that his PN reduceed significantly once he started taking the food supplement Coenzyme Q 10 (obtained from Healthspan Thanks for the site Min much cheaper than H and B) Stephen took it first of all to reduce the cramp in his hands

He takes 200 mgs of Q10, 5 – 10 mgs of oramorph (even if he has not had to use it during the day) gabapentin and paracetamol before he goes to bed. And he swears by bedsocks (ordinary day socks are too restrcitive) he started wearing them after seeing Prof. V regarding radiotherapy advised him too. His feet sometimes get get too hot but he says he would rather just hang them out of the bed than put up with PN.

He doesn't wear PJs and he started the bedsock lark by borrowing mine (pink and fluffy you can imagine how we laughed) but now we have some manly black ones but still share mine. I am just about to order some more from Amazon. I don't know what they will be like but M and S and Matalan seem to stick to seasons and there are no bedsocks at the moment.

I do hope you get relief soon love from Gillxx

[mhnevillParticipant]

Hi Gill

So sorry your PN is so bad. Do hope some of the suggestions here help. It's one of the things I dread as I have something similar following nerve damage through one of my hip operations. I find Reflexology helps. Although sometimes a bit painful during the treatment it does seem to get the circulation going. I wonder how Dai got on with his new toy – a circiulation device. I also have one of these which did help a bit.

Do hope you get some relief soon and that the Pain Specialist is able to help.

Bast wishes.

Mavis

[susannahParticipant]

Hi Debs so sorry to hear about Velcade, Michael had a terrible time with Velcade only had 3 cycles as it caused terrible PN in his feet and lower legs. He stared on gabopentin but the pain clinic have put him on high dose pregablin he also takes codene 3 times a day. He says some days are better than others but at night finds it unbearable. He has thought about using a tens machine Ill let you know if he does

Take care
Sue

[TinaParticipant]

Hi Debs,

I often think of how you are and have wanted to give you a call but have lost your number.
Your symptoms sound familiar but unfortunately PN with Velcade is pretty common but a bu**er to deal with. Sounds like Gill's suggestion of Coenzyme Q10 is certainly worth a try, Patrick tried Gabapentin without success, he used my TENS with no positive result and took up to 180mg morphine a day plus oramorph for breakthrough pain. It's definately a good idea to see the Macmillan Nurse they seem so much more switched on to pain relief.
I will say that when Pat stopped Velcade treatment The PN pain dropped off pretty quickly.
I hope the pain clinic can find something for you.

Best Wishes

Tina X

[DebsParticipant]

Thanks everyone for your responses….I've been 3 months off the velcade so have this horrid feeling this could be a permanent gift of getting a short term remission 🙁

I will definitely try to get referred to Macmillan for pain support…I'm hoping for something less 'druggy' as the gabapentin isn't doing much and nor is the oromorph.

Gill, please thank Stephen for the Coenzyme Q10….will try to get hold of that as an option…prefer that to the bedsocks (think my husband thinks MM has affected our life enough already…lol!)

Mavis, reflexology isn't a bad idea either…I could do with seeing if there is any way that I could get it more locally than the Royal Marsden is Surrey….a 3 hour round trip is a bit far. But there must be a way I can get hold of some local treatment if I speak to the macmillan people.

Tina, lovely to hear from you….how are you doing? I think about you often and talk to my husband about when we met and how sad it was to hear about Patrick after. If you ever want to private message me, feel free, or email me at gascoyne2@virginmedia.com.

Thanks everyone again.
Debs xx

[DaiCroParticipant]

Hi Debs,

I have exactly the same symptoms, with exactly the same effect as you and it drives me to distraction.

I don't bother with the Oramorph because as good as it is for general pain it just doesn't work on nerve pain. I'm afraid that I have no other suggestions (i bought a Tens Machine but had to stop using it after one session after discovering that I had a DVT… which made using it a tad dangerous.

Like you I am interested in the suggestions made and any other information added.

Dai.

[DebsParticipant]

Hi Dai
Funny you say that oramorph doesn't work at all, as when my neuropathy first got bad, it really worked! In fact it turned my life round for the week before my SCT. But ever since, it hasn't seemed to work in the same way. It does work a little, I think, and I tend to take it to help at bedtime – not sure whether it just helps me sleep through the pain or whether it is helping the pain!!!
Were you recommended the TENS machine? If so, I'll try to speak to someone about it at the hospital.
The other thing someone has suggested is acupuncture…another thing I am going to speak to the hospital about…I have a friend who does it so I may get her to give it a go if I'm given the ok by the hospital.
I can't stand the pain I get some nights…makes me cry…..like tonight!
Debs x

[TinaParticipant]

Hi Debs,

If the TENS machine works for you and you consider having one for home use I have one that you can have.

Good Luck

Tina

[DebsParticipant]

Ahh, thanks Tina!!

Let me see what they say to me on the 13th and then if I'm allowed to use one, I'll pop over if that's ok with you….would be good to catch up and once the kids are back at school, that'll be easier!

Love
Debs x

[scott9Participant]

Hi Debs

I was on Velcade from last Oct to Jan. I had to stop that treatment as it was doing more harm than good. I also ended up with PN mostly in my feet but also in my hands. I've still got it but not as bad as you. It's really confined to the soles of my feet. Some days it's worse than others. I was in a lot of pain the other night but that's probably because my wife and I had been to a funeral ( a friend lost his battle with cancer) and I was standing for ages. It seems to be worse at night and then calms down again first thing next day. I'm taking so many pills that I don't want to take pain killers too so I just put up with it. My specialist says it may get better but on the other hand it may not! I live in hope.

All the best

Scott

[TinaParticipant]

Hi Debs,

Good luck tomorrow!

Tina X

[DebsParticipant]

Oh Tina
They've postponed it till next tuesday- I cried when I got the letter! I feel like my toes are broken tonight…worse than they've been in ages. It's partly my fault as I've overdone it today and not had a sleep but it's depressing to know it could have been looked at tomorrow and now I ve got another week to wait.
Enough moaning!! Down with the morphine…lol!!
I wanted to ask if I could borrow that TENS machine off you too- am going to take the initiative and try it out!!!
Thank you
Debs xx

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