Hi Jane

I know exactly what you mean….when I was told I was not eligible for the trial because my screening results were better than expected and I was therefore not ‘high risk enough’, part of me was pleased (of course), but another part of me was disappointed as I knew this trial represents an opportunity to get a drug that could make a…[Read more]

Hi Jane

Yes a disappointment re the trial but we’ll see how it goes throughout this year. To answer your questions:

Yes I believe a PP level of 30 or more is needed to qualify. Also, as part of the screening, I believe they test your ‘light chains’ in your blood (this was not something that my normal monitoring had tested previously). My result…[Read more]

Hi Jane

Since last posting I have been through the trial ‘screening’ but was then deemed not eligible as my PP level was 25 (this despite my previous readings during normal monitoring being 30). So it was a surprise to hear that the screening test showed a lower level. Which is positive news I guess, but disappointing in terms of the trial as it…[Read more]

Hi…like you I’m unsure about any trial as I’m not sure about having treatment when I don’t necessarily need it. It will be a difficult decision once I have to make it.

I’ll keep you posted with any developments….likewise please keep me posted about what you decide.

Thanks!

Hi Cygnet

Which hospital are you at?

I’m still waiting on further details (still waiting to see consultant) so I don’t know yet about whether I’ll be eligible to be considered for the trial.

Are you going on the trial/has your consultant suggested you do so? It’s probably a difficult decision…have you smouldered for long or is it quite new?…[Read more]

Hi Jane

Many thanks for your reply. I’m pleased to hear that your husband is considered low risk and is still smouldering.

Once I get some more details about any potential trial then I’ll let you know – at the moment I don’t have any details as it’s only something that has been mentioned to me as a possibility. My PP level is currently 30 so…[Read more]