[Cheryl G]

Re: I think my time as a smolderer is coming to an end

by Cheryl G on Thu May 14, 2015 5:04 pm

Every 3 months makes sense, FingersCrossed. That will give you results often enough to pick up potential changes (although let's hope that never happens). I could even see switching to every 2 months if your doctor was on board with that sort of frequency -- at least for the next year or so, to really get a sense of how stable your numbers are.

Smolder on!

[Carol of Eden]

Re: I think my time as a smolderer is coming to an end

by Carol of Eden on Thu May 14, 2015 11:32 pm

So glad for the clear MRI, Fingers Crossed. Here's to stable labs too, and your M-protein even went down! I hope you find out what that rib pain is and can alleviate it.

The great thing about being "just" a smolderer NOW is, we can expect better drugs available that are now in trials. I saw my onc today and she was literally smiling and giddy when she told me how great the treatment responses are for the new monoclonal antibody drugs (such as daratumamab), and how they may be approved by the end of the year. Said she'd just been to some meeting where that was discussed.

[FingersCrossed]

Re: I think my time as a smolderer is coming to an end

by FingersCrossed on Fri May 15, 2015 9:18 am

I'm most excited about the potential use of immunotherapy in treating myeloma.

My specialist also told me about daratumumab, so there are some exciting drugs in the pipeline. I think there is a trial going on right now using daratumumab in smolderers who are at high risk of progression. I don't qualify since I'm not considered high risk for progression. I have the 17 deletion but I also have a bunch of trisomies, too. There is a study that shows that they offset each other, but I think there's one that doesn't show the same benefit, so I'm not sure what risk I would be should I progress.