[janebParticipant]

Hi

my husband was diagnosed with SMM Nov 15 aged 44. Had just over 12 months on ‘watch & wait’ regime. PP Levels have recently elevated and  now nearing 30. Consultant thinks he may be eligible for a clinical trial using daratumumbab available at Nottingham.

Do any Smoulderers have any experience of this trial/drug?

many thanks

jane

[docmikeParticipant]

Hi Jane,
This is exciting and thankful news for smoulderers ,relapsers and potential relapsers .I stand corrected but this seem a very recent development so experience uk wise must be limited.But it is not a chemotherapy type agent but an antibody such that allergic reactions are possible.
Having had smouldering myeloma before going onto standard tx I would have gone for this if had it been available 3 yearsago .
Best WISHES
Mike

[adriwest1Participant]

Hi Jane, when I saw my specalist in Dec 16 he discussed this drug and told me that this could be a game changer. I am 4 cycles down the VTD route and no trials were available but would have seriously considered this. Adrian.

[janebParticipant]

Thank you both for your responses. I understand this is a worldwide trial that has been recruiting for some time. I seem to recall reading some preliminary results but I can’t find the reference!!!

From what I have read my main concerns are that if this is indeed a game changing drug then is it better to wait until the disease progresses before using it and not playing your ‘ace ‘ card too early?!!

My other concern is that when the drug stops becoming effective then there appears to be some uncertainty as to whether the Myeloma then becomes more aggressive and therefore more difficult to treat?

There is also no clear evidence in the limited literature to suggest that treating Myeloma at the smouldering stage actually improves survival! Although instinctively if this means avoiding chemo for a bit longer then if feels like the right thing to do.

Iam still very interested in any Smoulderers who are currently on this trial. I now only a few hospitals in the uk are offering this.

If anyone has found any published results from this trial then I would be very interested if you have a link.

Thanks again

jane

[docmikeParticipant]

This general reference explains about daratumumab (which has until recently been used in relapsing/refactory patients who tend to have poorer response rates and tend to have more aggresive disease becuase of previuous multiple treatments and the passage of time) http://www.myelomabeacon.com/pr/2017/01/05/janssen-bristol-myers-squibb-darzalex-opdivo-collaboration/
Your husband faces the benefit/risk question with a step into the dark as regards what to do in the smouldering scernario.But i think the move for earlier treatment in smouldering is now gathering pace but this was not the case 8 years ago when i started reviewing the literature and had the same questions you have now.This a trial to answer a question for which the answer is unknown and will remain so for a few years but the range of effective treatments now available (even despite the rationing of Nice )make it a realistic proposition.I do realise however it is a dificult decision because no one can tell you if it leads to the best outcome.
Best Wishes Mike

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