[misswoosieParticipant]

I don’t know if everyone is aware but this is the myleoma uk clinical trials page.Myeloma UK clinical trials

[miraParticipant]

Me too – diagnosed for smouldering myeloma in August 2018. All the tests done and they monitor me every two months. I had my consultation today and things have not deteriorated, hence still on watch and wait mode. I am with the West Hertfordshire Hospitals NHS Trust and there has been no mention of the Daratumumab trial. Wonder why as I may be in the high risk group as my PP level is 54.9 and my kappa lambda ratio 0.01.

Are these trials based on individual hospital trusts rather than overall UK wide?

[bren123Participant]

Hi Mira
I don’t think trial is all over the uk,I am on the trial in Canterbury.
As I said, I am watch and wait with further tests, but the girls and guys having the treatment, it has reduced their paraproteins significantly.

Have you got over the shock yet? It took me a while. Was your Smm found out by routine blood tests?

Good luck and keep smouldering!!

Regards

Bren

[miraParticipant]

Thanks Bren for getting back. Perhaps I will check with my consultant when I see her in December (my two monthly visit).

I still cant believe it as I thought I led a fairly healthy lifestyle. Apparently, this is simple bad luck! I am in a much better place now and just trying to get on with life as far as possible.

Best wishes to you too.

Mira

[tomParticipant]

Hi everyone
I will be going on daratumumab soon, it will be my fourth line of treatment, it will be given via cannula. It should start in the next week or two….
All the best to you all…..onwards and upwards

Tom

[Author]

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