[boisvertParticipant]

All that information is so useful.
Having been on a clinical trial for 4 years, I am feeling rather abandoned at the moment so am glad to be in this forum thread.Whilst on the trial, I have had a research nurse with me at every appointment and she has got treatment for me for other conditions very promptly. Now that she has finished, I feel thrown into the normal NHS and am not sure how this will be and ifI will get another nurse to consult. At my last appointment with the consultant on 22 December, he said he would see me in a month but I have heard nothing. On the trial, I saw the consultant and my next appointment was ready within 48 hours. It’s a bit scary,I have to say.

[boisvertParticipant]

Hi everyone.
I am new to this forum and have been interested by your conversation.
Having been on a trial drug plus lenalidamide for 4 years, the myeloma has started to rise. Hence I have been given literature to read on Velcade and Belantamab with the view to starting 2nd line treatment. Having been on a trial for 4 years with a specific trial nurse helping every step of the way, I feel very much on my own and it’s scary. Need some friends who understand.

[boisvertParticipant]

I am in a similar situation but note that you have not had any replies. Sad when we need help. I have just been taken off first line treatment after 4 years. I have been given notes on Velcade andBelantamab to read after Christmas and decide if I want to go ahead. I too would like to hear more about it from those who are on the same treatment. No CST as too old!

[Author]

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