[akearonParticipant]

Hi Fiona,

I understand your response but I have looked into it from the efficacy perspective. At some of our largest cancer hospitals it has become the elephant in the room. Companies such as Cipla Pharm. Sun Pharm etc are massive companies with manufacturing in Germany as well as India and with state of the art equipment. Clearly the big issue is $6682 per month compared to less than $1000. It has a big impact on how much treatment you can have. Not everything that comes from India is bad.

Regards

Alan

[akearonParticipant]

Pauline57 and Marc,
Sorry to hear your news but and I mean but, don't despair. You didn't leave an email for a personal reply. I contacted Cinzia who ironically lives less then 3 km from me. She was a breath of fresh air amidst the fear. My Myeloma is fortunately early or around 10% and my AL was diagnosed after we thought I had gall bladder problems and found out that I had some large lymph nodes. When they tested them they found AL. I also have type 2 diabetes with good control. Recently I had a special MRI in Research and Development mode where they found that the heart has AL involvement which lead to a touch of Heart Failure for two months.

I start Velcade next week and know that Cinzia has had good results with that Chemo. Do not read old things, if it's a year or more it's probably out of date Don't Google. Mayo Clinic, Boston Clinic etc. are reputable sites.

[akearonParticipant]

Eve,
Thank you so much, I have also received the information that I asked about as well as the option to contact Cinziaz which I will do. I can't tell you what it felt like to see such fast responses.

Thank you

Alan

[akearonParticipant]

Cinzia,

My name is Alan and I have just registered. I live in Melbourne also and have just found out that I have MM and AL. I was at the Alfred last week for a scan using the MRI machine in Research and Development mode which can do lots more than the standard MRI to detect Amyloid. My question is, what is the name of the Cardiologist at the Alfred who specialises in Amyloid. My Cardiologist said that he and probably most others have little knowledge of the problem. My Haemo is good but refers to a specialist in Brisbane.

Kindest Regards
Alan

[Author]

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