[mandyphillips41Participant]

Hi Everyone

I have now been diagnosed with Carpal Tunnel Syndrome and the Specialist suggested that this could have been caused by the Lenalidomide that I took for the first 5 months after being diagnosed with Myeloma
Has anyone else suffered this? I went to see the surgeon on Thursday evening and he is going to perform an operation on both of my wrists to relieve me of this. I am in agony – mostly in the middle of the night so at the moment sleep for me is practically nil… and has been for approx 4 months.
I am so looking forward to Monday, it will only be under a local anaesthetic as a day patient, so fingers crossed as they say that the relief is instant!!
I have been on the clinical trials for my Myeloma and the last visit I had to see my Oncologist, they ask me is I would be prepared to stay on the maintenance program which involves taking the Lenalidomide drug, they asked me to have a think about it and let me know at my next appointment.
Well I think the answer to that will be a great big fat NO!!! – are they for real or am I just a guinea pig to them…
Just read that back – I dont half moan dont I? LOL
Well thats my rant over with – Goodnight to all and I do hope you are all fighting this horrible battle – good luck to you all
Mandy xxx

[eveParticipant]

Hi Mandy

It makes sense,lenalidomide or Revilimid as some people know it,is derived from thalidomide ,which kills off nerve endings,but I wonder if you had a weakness there to begin with. The reason I am asking is Slim gets cramp in his hands mainly effecting thumb area,and I know he had some nerve damage there years ago!!.

I suppose they do not know the long term effects on some of these new drugs,as how many are around 10-15 years later to compare, I would imagine Myeloma are good guinea pigs,you have cancer! You want to live! And they do not have to pay you any money to test these drugs! Plus if they do not work you will not be around to sue!

That said I am sure you make a lovely cuddly furry specimen 🙂
Bottom Line is devil or deep blue sea.At clinic yesterday,nurse asking general questions,Slim said getting fed up taking so many tablets,her reply was do you want to stop,Slim said What!!,she said you can stop if you want,He said I do not have much choice!!!. My thought were you insensitive B—–d

Now that's what you call a rant!!,she did a very good job,of spoiling his day. Eve

[tomParticipant]

Hi Mandy

Morning young lady, I don't have that problem just wanted to wish you luck, will they do BOTH on same day ???

And Mandy neither yours Nor Eve's was a good rant lol.

Take Care
and not forgetting Onwards and Upwards 😎

Tom xx

[mandyphillips41Participant]

Thanks Eve & Tom

Tom, Yes they are doing both on the same day – I cant stand the pain a day longer, I realise it may be a struggle for a few days with both hands bandaged but hey ho seems nothing compared to some of the things I have been through this past year and I am desperate to get better and feel normal again.

Once this is sorted I then have to go for a brain scan as I have fluid leaking from my spinal chord and they think this may be why I am in such pain also with the joints in my legs – it really does seem that as soon as they fix one thing another is broken… still as you say Tom onwards & upwards!!!

Mandy xx

[mandyphillips41Participant]

Hi Eve

I think I would have had to have said something to the nurse – the sarcastic B***h is there really any need to be so unkind to someone that is so poorly!! It makes my blood boil and we just dont need it. Good luck with everything xx

[tomParticipant]

Hi Mandy
Good Luck with having both done at the same time 😀 am sure you will cope well.

as you say its one thing after another that needs fixing 🙁 when I was ill I used to say am like an old car I used to run, one thing would break and need fixing every week just like I do Lol.

But here I am SCT in 2009 and sat here in remission and drug free 😎 soon be you saying same 😀

Love Tom Onwards and upwards xxx

[mhnevillParticipant]

Hi Mandy

Of course the carpal tunnel syndrome developing might have had nothing to do with the drugs. I have had it for many years. Just had a really bad bout and had second injection into my wrist. It really acts like a miracle. Surprised they didn't suggest that to you first.

However, I've heard very good reports of the minor operation so hope you get some good nights soon. It really is one of those things that destroy quality of life.

Long may your remission last. I am now a year on.

Love Mavis x

[avantrompParticipant]

Hello Mandy
I had an operation on one hand about 3 years ago after taking Revlimid for about 7 months. My specialist said that there was a greater chance of getting carpal tunnel syndrome if you had MM. I have been taking Revlimid since then with no effects on my other hand. The operation was a great success. However I would think twice about having both hands done at the same time. It was extremely incapacitating. I couldn't use the hand at all until it had healed. Discomfort in the hand lasted many weeks but this gradually disappeared completely.
Good luck with the operation
Annette

[jillsParticipant]

Hi Mandy,

My Mum has had carpal tunnel syndrome in both hands, she had the operation on both hands at different times. As you say the op is very straight forward and quick. As Mavis says I think it is quite common in people with MM. I also have a younger friend who needed the op last year – apparently it is also fairly common in women. Annette is right the operation is quite debilitating – you will be unable to do anything much with the hand for about 6 weeks – could be difficult with both hands out of action. You also need a bit of physio afterwards to help build the handle and wrist muscles up.

All the best for tomorrow anyway,

Jillx

[mandyphillips41Participant]

Hello All

Well I do hope that I will be able to work my hands as I was planning on going back to work this week after the work but typing this is making me thing differently after reading some of the comments…. hope I can prove everyone (including myself) wrong as I am so fed up. Its been 10 months since I last worked and I am more than ready for it.
Oh well… what will be will be!!
As Tom says – 'Onwards and Upwards'

Thanks for your comments and advice as always

Mandy x x x

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