[jeapal23Participant]

Mike had his treatment stopped about 4 weeks ago he was on his 5th cycle of velcade but didn't finish it. He was taken into hospital with suspected spinal compression, pleased to say he didn't have that. He was having terrible trouble walking and peeing and his speech was awful. He had a stoke 11 years ago and has post central pain syndrome all down his left side and trouble walking and his speech is not perfect anyway. It was all a bit of a shock having treatment stopped.

Since he has stopped treatment his pain in his legs is getting worse, he has electric shocks in his feet and feels like a burning poker is being stabbed into them, I’m taking it that this is neuropathy pain.

How do people cope with this sort of pain, he is on 300mg of pregabalin twice a day, this has been put up from his normal 150mg twice a day. He also is taking morphine twice a day and parecetomol I’m worried he is taking too much pain killer. He is spending a lot of time in bed because this is where he has less pain. It’s a bloody awful life. I have a lot of issues with work at the moment and I’m on a phased return to work after having some time off with stress.

I also am finding that all the doctors seem to be doing at the moment is humming and haaing, that is causing its own pressures. Mike is back at the hospital on the 12th September and I want to see the big boy and I want answers and decisions made.

I would appreciate any advice on the neuropathy pain please

[eveParticipant]

Hi Jean

I can only tell you what I do with Slim,his as far as I know has not been that bad,we have had the odd night when he has to get out of bed and keep moving usually I am up there with him,it's a bit of a dance around the room,because he has to hold on to my shoulders,I massage his feet and legs a couple of times a week ,I use Palmers cocoa Butter formula,from boots,someone recommended it,at first Slim cannot bear for me to touch him,but his legs seem to relax and it's easier. I have kept this up for well over a year now.

One of the reasons I believe a massage is good,is all the Chemo goes through artery,s and veins,and it must effect there flexibility,trying to get Slim to do gentle stretching excises for his artery,s and Veins,plus ligaments must tighten through lack of real excises,so even if its not the cream,the massage must do some good.

This life lacks quality,I nag Slim to get dressed and take him out twice a day,walks 20-30 yards then push him,his general mental health has improved,I know he is very fatigued,plus lack of sleep,but he does seem to have improved a bit. Eve

[PerkymiteParticipant]

Hi Jean, Just spotted your post.

I was pulled off Velcade for the same reason. I get the electric shocks in my feet sometimes it is just a split second other times it can last a few seconds. My legs feel very, very uncomfortable all the time, right up to the hip and I have to wear bed socks when I go to bed. The skin feels detached from the muscle.

Like Slim I generally get up at least twice in the night to have a little walk around the bedroom. I am very prone to cramp in the legs and I am very quick to react as soon as I feel it starting. I gently move stretch out my legs until the warning signs go.

To be honest I do not take any pain killers for it. In fact I am reducing the amount of morphine I take each month. I have gone from 80mg in 24 hours to 20mg in 24 hours. I am not suggesting you do the same your situation is entirely different from mine and you should obviously consult your Doctors before reducing any medication.

I intend to bring the matter up with my Consultant on Friday, this week, and if I get any pearls of wisdom I will post it. I am not hopeful the last time I was, very nicely, told it might reduce over the next two years! (LOL I should live that long!)

Sorry I could not be of more help.

Kindest regards – vasbyte

David

[HelenParticipant]

Hi Jean and David and all
I'm sorry I'm not as involved as usual but I'm still trying to keep tabs on everyone.
I'm finding this Velcade lark very difficult to get to grips with and dexamethasone dementia is NOT helping, in fact the best day in each cycle is when I'm on the 2nd day of it, have energy and the least amount of PN.
So they have reduced the dose, its still working for me, light chains now at 6…… Hurrah… And only get the dex, cyclophos and Velcade once a week instead of twice.
I've been very carefully monitored and was told last week that I'm on the edge, 'PN takes a very long time to recover,' he said. 'We will not give you the next cycle if it is not resolving by the end of the week off'
I am taking paracetamol and codeine only for it but it is so uncomfortable in the weirdest of ways, like you David it extends above my knees. My legs feel weighty and tire so quickly, sometimes I feel as though its not real, if that makes sense? I suppose that normally our limbs are just there…. We don't expect them to cause bother unless we have punished them with unaccustomed exercise. I am finding I have to keep them moving a lot as its often the only way to stop them hurting, even though it's not painful all the time.
Anyway that's my dex ramble for now.
Hope everyone else out there is ok.?
Love Helen

[alpenatorParticipant]

Hi there
Just finished cycle 4 of CTDa and, like Mike, am suffering from PN in my left leg. Again the whole leg feels heavy and very tender if touched with the occasional sharp pain. It is not at all pleasant.
I alo have problems with my speech at times, and hand tremors, so much that my GP checked for Parkinsons (that was OK.)
I have been on 10mg morphine patches since starting treatment but this cycle my consultant added Oramorph, I only take 2 spoons a day but it does the trick most days.
There seems such a wide variety of side effects and treatments, gets very confusing.

[Author]

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