[christinepughParticipant]

Hi All
Just wondered if anyone could share experience, tips, magic wand etc My husband Chris is really suffering with peripheral neuropathy, he's pacing up and down as we speak trying to get some relief from his aching feet and calves and shooting pains from his feet. He is taking pregablin 3 times a day , tramadol 4 times a day and co-codamol in between then a knock out sleeping tablet to finish the day. The puzzling thing is that after 3 cycles of Velcade he had mild tingling,cold toes. Cycle 4 slightly worse but again on and off, plus the last two cycles were given sub-cutaneously. It was two weeks after the last dose of Velcade that it really kicked in and has not got any better over the last two weeks. He is due to have a full allo on 13th Jan and we hope to god it subsides before then. He is not a complainer but this is testing him severely. Any suggestions would be greatly appreciated.

[meganjaneParticipant]

Hi Christine and Chris,

I am afraid we have not found a magic wand yet but just wanted to offer Chris my sympathy as I know how annoying it can be. My husband Phil had six cycles of Velcade sub-cutaneously and during the second cycle his fingers tingled a bit but that went away. At the start of the sixth cycle Phil's feet became very numb and felt cold all the time so they reduced the last two doses of Velcade. Unfortunately his feet have got worse instead of better, there is now a constant burning sensation that is not helped by massage or any type of lotion. Phil has just been prescribed a low dose of Amitriptyline but he has only been taking it for six days and the doctor said it could be a couple of weeks for it to help (if it does help!). We have read elsewhere that it can take up to four months for the neuropathy to fix itself so we are hoping that even if it does not go completely the burning sensation will stop.

Sorry I can not help but I just wanted to let you and Chris know that we understand how awful it is and hopefully both Phil and Chris will recover from it soon.

Good luck with the Allo in January.

Megan

[christinepughParticipant]

Hi Megan
Thanks for the reply,we are just helpless aren't we. I can't honestly say that any of the medication is making a massive difference, he's taking more tablets for this than on any of the chemo regimes. I asked him if it's any better than it was three weeks ago and he said a little but he has aching calves now which he didn't have then. Like you say we are just hoping that it subsides a little.

Is Phil working towards a transplant ?

Take Care and thanks again for replying

Christine

[GillParticipant]

No magic wand from here I am afraid. What did help Stephen a little was keeping extremities extremely warm (excuse silly choice of words)

Feet soed in warm water,loose bedsocks etc.

I wish you both well Gill xx

[meganjaneParticipant]

Hi Christine,

I will hopefully be starting a new post tonight about Phil's auto stem cell transplant but I don't want to jinx things by posting it too early! We are going to St. Bart's this afternoon and provided they can find a bed for Phil he will be in for his transplant. If no bed is available we will come home and try again tomorrow. Phil is booked in for a MRI today so if no bed is found it won't be a completely wasted journey. Hopefully the MRI will help establish if some of his new pain is due to bone damage or if it is just a side effect of the medicines. We know what you mean about too many tablets. It is also annoying that the drugs that make you better make you worse in other ways!

Megan

[christinepughParticipant]

Thanks Gill

The doc has put him on morphine today so that should work, he was going to cut my hair tonight I might leave it a day or two !!!!! I have been massaging his feet for him.

Christine

[BADGERParticipant]

Hello Megan
I have some PN which is unconfortable but not painful we have a foot machine that puts electrical pulses in the foot it does help i also rub in coconut oil thats good as well hope this settles for you husband i expect he can do with out all this
Regards Jo x

[meganjaneParticipant]

Thanks Jo,

We may look into the electric pulse thing if it doesn't get any better. Phil is hoping he will be able to block it out more when he is feeling better and gets busy doing things again. Phil finds it most noticeable when he is sitting or lying and doing nothing so hopefully once he is moving more it will fade from his mind a bit.

Megan

[2grahamParticipant]

Hi Christine and Chris
I too suffer from PN at times but not as severe as in your case. Apart from keeping myself hydrated (as if we don't have to drink enough!) my hospital also offer Complementary Therapeutic Services such as massages and acupuncture into my feet, legs and hands. It works for me!
Graham

[TerryMGParticipant]

Hi Christine

I have suffered and an suffering from PN but I tried not to take anything for it as I think that there is enough going through my body with the Chemo stuff as well. I kept a note each day what I was taking and what effects I was getting. Otherwise one day just merges into another. Thus I began to understand which days were better than others and I work around that. I fined the first cycle of any treatment my body reacts badly and then after that things get better. After the third cycle of Velcade everything settled done to an acceptable level. The 3 day of a cycle was my bad day of the week and after that things got better. By taking too many pain killers can hide other things going wrong. I agree that you should drink a lot, at least double of that before you were diagnosed with MM. Sorry if this is not a what you want to hear but I feel that his has helped me and when I am asked question I have chapter and verse and everyone is impressed including the pharmacy that when in hospital most of August they let me self medicate.

I try and keep my mind occupied by project managing a restoration of a sports car and know which day I can work in the garage and these where I cannot. It does take a lot of will power but I try mind over matter. Sometimes it is hard but it has been worth it in my case. I must admit I am taking cocodamal but this is for my ?Tree Trunk? right leg while I am awaiting the hospital to sort Radio therapy after the holidays but only as a very very last resort. When the hospital look at my leg they cannot believe I can carry on with the way it looks and not take anything for it.

So stick in there you may find it reduces the more cycles you have.

Regards Terry MG

[christinepughParticipant]

Hi Terry

Thanks very much for your message. After trying allsorts of pain relief the morphine was the last straw, he said he wanted some clarity of thought so stopped them all apart from co-codamol because he was stumbling through each day like a zombie. Chris is still kind of working as he has his own hairdressers so cutting hair bombed out of your mind isn't good for business !
He's not on any chemotherapy at the moment just waiting to go in on 13th Jan for his full allo. He had 4 cycles of Velcade, which he only achieved partial remission from but good enough for the allo according to our consultant.

He has a Royal Enfield motorbike in bits in the garage so hopefully he will be tinkering like you very soon.

Christine

[christinepughParticipant]

Hi Graham

Thanks for the reply. I did think whether Acupuncture would be any good. Apparently they offer complementary therapies at The Christie when Chris goes in for his transplant but hopefully it will be better by then.

I'm always mithering about drinking but it must be hard to keep drinking that much fluid !!!!

Take care

Christine

[TerryMGParticipant]

Hi Christine,

I have stopped taking co-codamol as the second cycle of Lenalidomide (Revlimid) seems to have reduced the pain in my ? tree trunk? Right Leg. I have 2 appointments at Guy?s & St Thomas?s on Friday 28th December were I think I will have Radio Therapy on the ? tree trunk?. I do not know what levels Chris has got to but Kings where I had my SCT usually do 3 cycles and then the SCT. In my case I went from an Igg of 70 to 3 in 3 months on CDT and then had another 3 months of CDT while I was being transferred from my local hospital to Kings. I had my SCT in March 2011 but this did not work for me as I got a tumour at the site where the Hickman line was removed. Velcade gave me a good quality of life from October 2011 and I was off it in February 2012. Unfortunately, my levels began to rise again in June with my right leg being a problem. In August I went back on Velcade and the first month my levels improved. But then went the wrong way so I am now on Revlimide. With Myeloma we are all different but this site gives you some idea as to what does and can happen. Good Luck for January. A project like restoring a Motorbike is a good distraction from all this medical rubbish we have to go through!! Have a good Christmas?.. Terry.

[Anonymous]

Hi my husband henry suffers from PN a side effect from thalidomide and he is taking Amitriptyline which helps slightly. Doctors told him the damage was permanent in his finger and feet:(. I try to get him to drink loads and when he is chest infection free we go for short walks.
Take care
Love sarah xxx

[TerryMGParticipant]

Hi Sarah & Henry,

I have had PN mixed up with spinal cord compression. It tends to be in the feet and hands. I had 6 reflexology sessions from the Mac Milan centre within the local hospital. This seemed to help me with my feet and the symptoms of PN reduced. I then paid for reflexology sessions of my own usually within the rest week of the cycle of treatment it was on. The tips of the fingers do get sensitive to heat but I know my wife?s friends also had the same with chemo for other types of cancer. I found when off chemo ( originally CDT )the PN gradually reduced so I think there is hope that Henry?s fingers are not permanently damaged. I gradually became free of PN but it came back when I relapsed and was put on Velcade. When I was off Velcade the symptoms reduced much mere quickly. I am now on Lenalidomide for my second relapse I do not have PN in the feet only spongy feeling and mild sensitivity in the fingers which if this was all I had to contend with I would be happy. However, I currently have a lot more to put up with so PN is the least of my worries. Good to hear that Henry has full remission.

Good luck and best wishes to you both. Terry xxx

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