Hi Eva – from Melbourne to Scotland – that's quite an adjustment. I have lived between the UK and Australia all my life. My childhood in London, young adulthood in Melbourne, back to London for 16 years until I turned 40 and now back in Melbourne again. Love both places so much. The cost of Velcade here is $1800 per injection and it is only…[Read more]

Hi Clara,
Sorry to hear your dad's MM has returned – I hope his next course of treatment is successful and that he tolerates it well.
My CDT had a good partial response but after 8 months of it they thought it unlikely to achieve a complete response. My heart is definitely too weak at the moment for a stem cell transplant so i decided to…[Read more]

just wondering how things are going with you now Tracey…

Hi Duncan, I also have amyloidosis – its in my throat, stomach, liver, heart and scalp strangely enough. I am 48 years old and was diagnosed in Oct last year. Whilst it felt as though the symptoms came on very suddenly, on reflection there were signs earlier. There is much information about amyloidosis on the internet but be careful what you…[Read more]

thanks Eve – I have started my own post. Hope your husbands SCT goes well – its been confirmed taht its too risky for mine to go ahead. I am taking much comfort in reading other people's stories and everyone's journey is different. I am also going to London later this year to see friends and relatives – are you going there to for tests, etc?
I…[Read more]

Hi Nadine and Dai,
I am having similar doubts. I have had a great response from the CDT treatment and am uncertain whether to proceed with the SCT. My specialist wants to discuss other options with me as he understands my reluctance (amyloid has been detected in my heart so the risks associated with the sct are higher). Once I have seen him I…[Read more]

Thanks Gill for your kind words and best wishes,
Saw cardiologist today and heart mri revealed amyloid (not surprising really) – SCT may not be an option but will wait to hear from transplant specialist next week. She did reassure me that treatments have come a long way and that if I can't have the SCT there are other drugs which get good…[Read more]

Thanks Bridget. Its great to hear about a person's journey and what they exerienced. The sct scares me a little but I know many of you have gone through this. I just have to get used to the idea that it will be a few months of feeling awful and then things start to look up again. Thanks again for your quick response – I don;t feel like its such…[Read more]

Hi everyone,
I live in Australia but there are no forums I can join there. I have been reading your posts and they do fill me with optimism. I have MM with the added complication of amyloidosis. I am 47 years old and have been experiencing symptoms for over 2 years but no doctor would view my symptms holistically. My swollen ankles were treated…[Read more]