DaiCro

Same old same old (ish)...

I attended my consultation yesterday to find out that my second 24 hour urine test still failed to show sufficient myeloma in my urine... the last qualifier I need to carry on with my trial audition.

I have filled in all the paperwork and my consultant will rush me through the rest of the qualifiers (Cardiac/full body scan/ bloods etc.) as soon as my urine shows 0.5 myeloma. The pig is my urine has always shown presence of myeloma very quickly as the other relapses but this time it is refusing to show (0.025 last test) - the 0.5 needed is a very low marker so it should be there soon.

So we have decided to hold on until next week to try for a third time - doing the necessary on Tuesday so as to take it in and have my bloods done on the Wednesday - giving more chance of the results coming back for my next consult on the 27th February. My consultant is getting concerned because the trial may close any day soon - if she gets so notified we will bring everything forward and rush it through in time for the closure date and hope for the best.

So far my bloods are holding up - everything has dropped across the board but nothing to get concerned about yet. I have some rib pain when I turn and/or stretch too much and the pain in my shoulder refuses to ease or go away... so my consultant has put me on my honour to report as soon as it starts to get too bad - my last 'FreeLight' test - taken on Feb 2nd wasn't back from Birmingham as of yesterday... but if it shows a high reading my consultant will make the call and I will go straight onto Revlimid & Dex. So Its more or less the same old, same old (ish). I'm hanging on for the 3rd 24 hour urine test next Tuesday and then wait for the 27th for the results... and hope that we make the magical 0.5%.

Of course, even if we do make the mark and pass all the other qualifiers my name will still go into a hat and drawn out... with a 50/50 chance of being accepted onto the 'Aspire' clinical trial - one of the 700 people worldwide.

The 'Aspire' trial of 'Carfilzomib' will continue but 'Onyx', the USA manufacturers and trial conductors, have already applied for its license in America. Carfilzomib is from the same family as Velcade but seems to have better, longer lasting results with far fewer side-effects. If I do make it I will have Carfilzomib twice a week for 3 weeks with a week off between cycles with 18 cycles in all. That would tie me down to the day-care centre at the hospital for approx. 3 hours x 2days per week with each infuse lasting an hour but I can only say 'Bring it on' because unlike Rev & Dex, which keeps the MM quiet - Carfilzomib actually knocks the disease back - hopefully into remission status. Even if it does I will have to continue with the Rev & Dex indefinitely... until it eventual fails... but the Carfilzomib will give me the possibility of an 18 month extension with as much as the Rev & Dex can extend it to follow.

Carfilzomib is taken with Revlimid and Dexamethasone. Those that don't get picked out of the trial hat get Rev & Dex alone... so, unlike some trials, you know your not on it... but Rev & Dex is my next step anyway...

I plucked up the courage and asked the consultant if their was a median for Revlimid and she said yes (ish). It is changing (for the better - the more results they get in) but it looks around the 30 months marker - although they have patients at Nottingham who have passed the 2, 3 and even 4 year markers on Rev and Dex alone.

If I don't get on the 'Aspire' trial I will start on Rev & Dex and hope to last long enough to see Carfilzomib with a UK license and available as a next step for me.

My SCT lasted only 10 months and my Velcade only 6 weeks but I do respond well to treatments when I am actually receiving them... and I am hopeful that Rev & Dex will prove the same... but Carfilzomib on top will suit me even better.

Staying positive...

Thanks for reading.

Dai.