[MollymooParticipant]

Hi some of you might remember me and my Husband Eric from when I used to write from Bulgaria.
Well we came home in April and Eric was in very good partial remission but with susspected AL Amyloid with cardiac involvement. It didn’t take long for him to see a specialist and I had had all his medicals records translated which helped speed things up. They did a fat pad biopsy which came back negative and tests with the cardiologist were inconclusive so we began to hope that the doctor in BG was wrong.
His remission was short lived and by August the Myeloma was creeping back, they dicided to send him to NAC for further testing and they confirmed that he did indeed have AL Amyloids with kidney, spleen and Cardiac involment. He went back to NAC 2 weeks later and they sent him to the London Heart for a MRI and then asked if he would like to consider the Millenium trial to which he said yes. We have just been back for our 3rd visit and he was screened for the trial, we should find out in around 28 if he is suitable for it and if so which arm he got randomised for.
We just take each day as it comes and just hope that if he gets the trial it will have a favourable impact on this dreadful desease.
I would also like to add what an amazing place the NAC is and the services they provide to make your stay less stressfull. The Oncology clinic at the Royal Free is also a great place with staff that made me howl with laughter. God bless them all.

[PatGParticipant]

Hi Sharon,
Sorry no one has come back to you before now. I don’t think there are too many people on here with Amy. I was diagnosed 2 years ago now with kidney, spleen and nerve involvement and have had VCD for 8 cycles. My Amy is stabilised at the moment but the kidney damage appears to be getting worse. I am due to have counselling regarding dialysis options, but this is not immediately imminent thank goodness. I think they are just getting all their ducks in a row as it were. I’m off to NAC next month to see what they say there and yes, they are very good. Always felt in good hands when I visit.
I do hope Eric has a positive outcome when he next visits NAC and he gets on the trial and you never know, we might just meet up one day.

[Author]

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