[suzettefoxParticipant]

Hi Helen

sorry to hear your experience with the biopsy. Never plesent .  I had my first one with no pain relief, apparently East Surrey have no pain relief available, my next two have been at the marsden where they give gas and air.  It does help, apparently the idea is to have about 17 deeps breaths before they start and continue throughout the procedure.  It does help, what pain relief were you given ?  Mind you I still dread them and I have one due in November  !!!!!

regards

suzette

[suzettefoxParticipant]

Hi all

I can see you are all approaching your SCT soon, just like to say all the best to you and I hope it goes well.    I had mine November 14,  as you say Helen, everyone is different, I have chatted with a lot of patients at the marsden when on hospital visits and we all vary in our symptoms before and after SCT.  I have had encouraging news when I have met patients that have been in remission for many years, and sadly the opposit but are now on another plan.  I do take comfort from that.  My SCT went well, be prepared for tiredness and not really wanting to do anything for a good few months, I was told of this but from one who was always on the go before didn’t think it would happen to me.  I am no longer on any myeloma drugs just pain relief, which unfortunately for me I am still in a lot of pain in my back.

I wish you all well for your treatments.

suzette

[suzettefoxParticipant]

Thank you for getting back to me.  It is reassuring to hear from you that I am not alone in this pain thing.  I am seeing the pain team again in a couple of weeks and will mention the pregablin. I have heard of other people taking this.  My curvature in my back is made worse by my breast bone (sternum) collapse because of the myeloma. It is a strange disease how we are all affected in different ways.  Are you active, can you walk far, I get so depressed as soon as I spend too long on my feet, weight bearing, I get the pain, making walking so stressful. I am advised to walk to strengthen my bones but finding this too painful.  I am not a weighty person either !! I have only been on 36 fentanyl for 2 cycles raised from 24.  I have noticed that I am incredibly tired and fall asleep if not stimulated.  Feel sick at times.  I think I sound drunk on the first day, although my friends say that I don’t .  I have been told to take paracetamol like you, yes it does help a little but does not take it away. Also I can take sevredol 10mg if I need extra but I don’t take it very often as I don’t like feeling drugged up.

I had my treatment at the Marsden Sutton and East Surrey hospital, everyone has been so nice, I have only been going to the pain clinic for a couple of months.  I didn’t get referred before.  So I am hoping that eventually he can help. I am seeing Dr Farquare smith at the marsden.

Like you am so grateful that my myeloma is in remission, just want some relief of the pain, only out of pain when laying down !!!

I wish you well, let me know how you get on. I am also 57. !!!!

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