[cleonicemullerParticipant]

hi all

new to this..my partner has myeloma..had a sct 5 years ago and was in remission but his paraproteines  have just gone up from 1.8 to 8.5 in six months…question any ideas when he should start treatment..would he have a new sct…transplant or have we got the same new drugs approved in the USA…over here?He had a really bad time with velcade….Carfilzomb…seems to have been tried as a new option..anybody knows anything please…we are trying to be positive and have lots of plans..

[bandityogaParticipant]

Unfortunately the new drugs are not available here yet. As he has had a good remission with his SCT he would be eligible to have another. Has your husband had revlimid or velcade? Farydak is also available. Hope this helps.

[kevinParticipant]

I had my second SCT about 4 1/2 years ago. I had ctd when first diagnosed and because I achieved a good result I had ctd the second time. Although the side effects were different I achieved another good result. Sorry I cant remember at what paraprotein level I started treatment at my first relapse but I think this does depend on you consultant. My current relapse started about 6 months ago with a count of about 5. In April it had gone up to 8. My consultant hasn’t given me a figure when he would want to start treatment but said this time it would probably be Revlamid. I see him again in July.
Best wishes
Kevin

[sabsParticipant]

Hi,

my partner is newly diagnosed a few months back, he is on the Carfizomb Trial, all i know is that pending on where you are being treated there are are usually a handful of trials taking place, at the UCLH they are do two different trials for newly diagnosed and one for relapsed. I don’t know what makes someone a candidate but have heard of people asking to be put on trials, I guess my other half just ticked all the boxes for age (very young), gender, ethnic background we were put forward for the trial even before we had the full myeloma diagnosis. And I don’t believe you can get the Carfizomb if you are no on a trial if you had it previously, but I guess if you don’t ask you don’t get.

BW

Sabs

 

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