[meganjaneParticipant]

Hello,

My husband Phil is on his sixth (and final) cycle of dox-dex-Velcade and he has started to have some peripheral neuropathy symptoms from the Velcade, his feet always feel cold even when they are toasty warm. Phil finds this very disconcerting and I was wondering if anyone else had experienced this and found a way of tricking their feet into believing they are warm?

Thanks for your help,
Megan

[KeithH17Participant]

Hi Megan, I had 8 cycles of Velcade and although I didn't suffer neuropathy I did have spasms in my hands and feet after the 3rd cycle. The dose of Velcade was reduced and it did settle down. With Neuropathy you must catch it early as sometimes it can't be reversed. Inform the Consultant as soon as possible if you haven't already done so.

Best wishes.

Keith.

[meganjaneParticipant]

Hi Keith,

Phil did mention it but the Doctor was not too concerned, we will mention it again more forcefully when we go in on Wednesday as it is bearable as a temporaray side effect but Phil would not want it to continue long term! It is often hard to tell what is caused by the Myeloma and what is caused by the medication but we are sure this is a result of the Velcade. Thank you for the advice, this forum has been so helpful to me being able to read what other people have done in certain circumstances and reading all the information that is shared by everyone, it has made things less scary knowing we are not alone.

Megan

[DaiCroParticipant]

Hi Megan,

Unlike Keith who settled for PN Lite I decided to go for the whole MM experience… PN Heavy feet, complete with 100% pins and needles, painful to touch and feeling cold even when they are doing their impression of an old fashioned radiators. I also have slight PN in my hands but thankfully, (being a guitarist) nothing near as bad as my feet (and legs between my ankles and calves).:-S

My PN started with the thalidomide in my frontline treatment (CDT) but really became affected during and after Velcade… I was told it would settle down after Velcade but someone fibbed.:-(

There are certain drugs (low dose amytryptilline) that can help alleviate the symptoms but as far as I can gather once bitten you stay bit (depending on the severity of course). I would say that my PN runs at about 80% *pretty bad) but like my tinnitus I tend to shut it down and almost out for most of the time. I had a DVT in my left leg last summer (2011) and I am currently sporting a DVT in my right leg this autumn… combined with my PN they make walking an interesting pastime but I can still get around without aid.

MM has some nasty side-effect and some that are a damned nuisance… for me PN is a damned nuisance… but only when I'm feeling down or feeble – the rest of the time you learn to block it out.

Regards

Dai.

[meganjaneParticipant]

Hi Dai,

We spoke to a doctor again today and they reduced the dose. Phil only needs one more injection now on Saturday and they will reduce that dose as well so hopefully it will not be a long term side effect. Very frustrating that the medicine you need to get better can cause other problems.

Thanks for sharing your experience. I hope your DVT improves soon.

Megan

[Pickle2024Participant]

Hi Megan,

My dad was on ctd and suffered PN in both his hands and feet, painful to touch and he called them "old mans hands" as they seemed to wrinkle and go a funny colour. He stopped all his treatment last week and still has the sand symptoms and his hands were freezing yesterday, even though we were in the warm. I'm not sure if they will get better as time goes on as its only been a week…..I'll let you know. Dad has also gone for for the full on MM experience (as Dai so nicely put it) and has had every side effect going. Hopefully things will start to improve soon!!!

I hope your husband feels better soon

Nicola xx

[meganjaneParticipant]

Hello Nicola,

I hope your Dad's hands warm up soon. Phil discussed it with the Doctor yesterday and they reduced the dose of velcade he was given. Hopefully this will help, Phil's feet were still cold last night but today he actually didn't notice it until I foolishly asked if his feet were still cold and that brought them back to his attention! They are still cold but he thinks they are better as he was able to block it out until I mentioned it so it may be psychological because he has had a reduced dose of velcade and was hoping that would fix the problem or maybe it actually is getting better, only time will tell. I certainly won't mention them again unless Phil brings it up first! I hope your Dad is feeling better soon, it seems to take quite a bit of time for everything to work it's way through the system.

Megan

[DebsParticipant]

Hi Megan.

I was on velcade too and found that cold feet were the start of neuropathy. So glad that Phil has had the dose reduced as I tried to stick it out and it got worse and worse, to the point I had to have medications to try to relieve the pain…and they didn't always work! Luckily 6 months post velcade/ SCT things started to improve and I was fine for a year.

I seem to be getting first signs again now though (am on revlimid maintenance) and don't know how much to tell my consultant now as I don't want to be taken off it, but yet I know that when it gets worse it isn't nice….arrggh!

Good luck!

Debs x

[meeuuParticipant]

Hi Debs and all other kind folks.
My wife, Cecilia, has been on her current treatment of Valcade for more than 12 months now and is doing quite well TG. She has had PN for quite a while (including the dreaded cold feet) but since she went unto "Subcut" earlier this year, her PN has diminished greatly. Now she still has coldness in her feet and lower leg, but with the near constant use of the electric blanket, she gets along nicely. It was through this Discussion Forum that we heard of Subcut and we subsequently convinced her doctor to use this method. By the way, Ceo has not been on Dex since more than nearly two years ago because it and the steroids brought about Steroid Induced Diabeties (which she no longer suffers from). Hope this info is of some help.
Kindest regards to all.
John

[DebsParticipant]

Thanks John.

One of the issues is that when you're on trials like the Myeloma XI trial, they won't let you have it sub-cutaneously (or at least they wouldn't a year ago when I was on it!!)

Not sure about how much revlimid is known to cause PN so need to ask more at my appointment next month….didn't think it was a major side effect!

Thanks for the post 🙂

xx

[PerkymiteParticipant]

I got PN when I was on my original CDT treatment in 2009. I call it "sponge feet? because that is what it feels like. I also suffer from very cold hands and feet, and they are cold as opposed to being hot but feeling cold.

My sponge feet have got marginally better in that I have got so used to them that it is no longer even mentioned, the cold hands a feet are quite another thing. I sometimes sleep with socks on to help at night. The hands I try to warm on the wife – women can be so unhelpful sometimes 😎 😀 .

Kindest regards – vasbyte

David

[meganjaneParticipant]

Phil's last two doses of Velcade were reduced and his feet have not gotten any worse so hopefully the PN will fade over time. As Phil is on the PADIMAC trial he did receive it subcut but I am not sure how high the dosage was. Saturday was his last day of his induction treatment so he now has ten days off and then it is back to the clinic to find out about the stem cell harvest. Onwards and Upwards as Tom would say 🙂

Megan

PS – I have tried to warm my hands up on Phil for years but for some reason he has never thought it was a good idea:-D

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