[IzzieParticipant]

Hi Everyone

Just to let you know I now have a pencilled in date of the 5/6th May for my stem cells to be put back in. Just hope I start to feel better before then – still having terrible neuropathy in my feet and legs – which obviously makes walking difficult – seem to be at my GPs most weeks trying different painkillers. Sunday night – didn’t sleep a wink with the pain – but most people don’t seem to mention it – I am assuming I must have a very low pain threshold – which doesn’t bode well for the times ahead. Also terrible tiredness – slept three hours this afternoon on the settee – and had not done anything!!!

Anyway will close for now
Wish me luck
Izzie

[HelenParticipant]

Hi Izzie
The pain from peripheral neuropathy is horrendous! I found I had to keep my feet up and rest my legs a lot of the time and took all the painkillers and the psychotropics all the time.
Good luck with the SCT
Helen

[dickbParticipant]

You will probably find the Neuropathy will dissipate, I had it really badly in my feet from October until Christmas and then it seemed to go almost overnight. I get a little twinge now and then, especially if I sit cross legged.

I actually found the opposite to Helen was best. Keep moving and keep the circulation going. We are all different. Good luck with the SCT

[rebeccaRParticipant]

Hi Izzie,
Glad you have decide to SCT in the end and sorry to hear you’re still having a rough ride – it won’t be like that forever. Had my SCt at Xmas and totally back to normal now it’s as though I’ve never had it as I now have no after effects anymore from it like tiredness so keep looking at the bigger picture. Regarding peripheral neuropathy/pain threshold – I had velcade for 8 cycles reknown for the dreaded PN but I only got it a bit near the end and I thought it was because I was still exercising but I read an interesting article that they have now found something in our genetic make up – a particular marker – that more or less determines whether you’ll get it or not when taking velcade and they are now looking at how to stop this particular marker with a view to making velcade more accessible for people (very long term project). So I guess why we all react differently is basically down to genetic make up rather than outside influences. If you ever want to meet up before your SCt I have sent you a private message with my mobile no. – just open “your Account”. Best of luck Izzie.
Rebecca

[IzzieParticipant]

Hi Helen – Thankyou for your reply – comforting to know that someone else felt the same way I do now – thought it was just me. Hopefully – you no longer have it? Been back to GPs this morning for another type of painkiller – so fingers crossed – this may be the one – in which case why didn’t she give it me in the first place! Sorry – having a bit of a rant – but that’s what pain does for you.

Will let you know
Regards and Best Wishes
Izzie

[IzzieParticipant]

Hi DickB – Thanks for taking the time out to reply. I can’t remember how long I have suffered with it – but it does seem an age – I like you find moving about is better – although I have serious fatigue problem – which doesn’t help – so am in a bit of a catch 22 situation. Hopefully will look back on this episode and wonder what I was making such a fuss about!!

Best wishes
Izzie

[IzzieParticipant]

Hi Rebecca

Thanks for your reply – I did get your email with telephone number (thankyou) but to be truthful do-not go anywhere because of the fatigue – it just wipes me out. Not sure if this is because of the constant pain of the neuropathy or just me. I had occasion to ring Hallamshire for something else and thought I would mention how I felt – and they were very sympathetic and said – everybody is different – probably just the way I am. But I felt just like someone else on this website (I forget who) who said she didn’t feel like she was in remission because she felt so ill. I feel the same – Hallamshire told me I had achieved a very good partial response – paraproteins down to 1.9 – but I still feel rubbish.

I have read about you saying you are back to normal and must admit to feeling very jealous – I suspect you were very fit before you had Myeloma?
Best wishes
Izzie

[tomParticipant]

Hi Izzie

Good Luck with the pencil in SCT but the sooner the ink is on the better lol,

I had a bit of PN  in 2009 whilst on CTD but not too much that it bothered me to be fair, just near got rid of it when the darned MM came back (was told December 5th) now on Velcade once per week subcutaneous and my iccle Dex, can just feel a slight change i my toes but not too much to bother so far, I do get fatigued but I rest when am early told by my body but do a fair bit of moving about on my feet long walks with the dog nice and steady ones.

 

God Luck with your SCT

 

Love Tom Onwards and upwards xx

[IzzieParticipant]

Hi Tom

Thanks for your reply. I was also on velcade and remember initially having minor pins and needles – the medical staff asked me about it and I said that it didn’t really bother me and to be fair at that particular moment in time that was the only problem I had. Little did I know how serious it would become and the fact that I had to stop velcade because it caused my blood pressure to drop dangerously low – so I assumed the minor pain that I had been having would also cease – which was not the case. If it had been explained to me more fully ie that the velcade can damage the nerve endings in you feet and hands I would have sought help sooner! That’s me all over – tomorrow is another day and it will probably be better then. I am my own worst enemy! You do seem quite fit – I have suffered with fatigue so that combined with the pain of neuropathy makes walking difficult – and I know the lack of exercise is not really helping. Just hope these new painkillers that I have got to-day – Oxylan – will sort it.

Good luck to you also
Best Wishes
Izzie

[HelenParticipant]

Hi Izzie
First time I’ve been called a couch potato!
But yes moving helps a lot but when you can’t stand on your feet without it feeling like you are walking on marbles it is very difficult.
I worked full time after my relapse until I’d finished the 4th cycle of Velcade twice a week, then the dose was reduced to once a week but I found the discomfort in my feet really got worse after the 6th cycle. It’s now 5 months since it finished and most of the time I’m back to my usual pace, but I still feel like I have stones in my shoes a lot of the time. I’m back to work again but I’m not as good as I was despite my best intentions.
Just grab the time after the SCT one do as much as you can.
Helen
p s Tom your old twinkle toes! just don’t let them get too sore with the Velcade

[tomParticipant]

Thanks izzie.

yes I hope your new drugs help ease your pain.

Helen I am a granddad to six and our home has got toys from one end to the other these iccle toes are used to standing on lord knows what and lord knows how sharp it is, haha

 

love from iccke ole twinkle toes he he

Tom onwards and upwards x

[keithmtParticipant]

That’s good news Izzie, I had my SCT 19 days ago and remember well how great I felt for the 2 days following. I had my post SCT review 3 days ago and apparently the transplant has taken. Cells have grafted to my bones and have rebuilt my bone marrow. My neutrophils are already back to “normal” levels so I’m all set to climb out of the after effects of the Melphalan which can’t come quick enough.

I’m lucky that I’ve avoided and major PN so far so I can’t offer any advice but will offer my thoughts and prayers as you go through this.

All we can all do is to repeat the Mantra ……. “Things will get better”

Best wishes for a successful SCT for you.

Keith

[Author]

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