[Chirley]

Hi,

I realize that this isn't an issue for those who have had Vidaza for MDS but my diagnosis of MDS is in doubt.

I've had 5 cycles of Vidaza and it's just possible that I didn't need it. Now I found an Internet site that says the Vidaza given to laboratory animals caused a range of cancers. These cancers ranged from skin to lung, breast, lymphoma and Leukaemia. I can't find that site again and don't know how reliable it is.

I emailed Celgene and asked them if I could have any follow up research on the long term carcinogenic effect of Vidaza. I didn't receive a reply so I rang Celgene Australia and spoke to a patient advocate. She said that the email had been referred to her but that she wasn't permitted to let me have that information.

Does it seem right to anyone here that this kind of information can be withheld?

I'm thinking of asking the oncology pharmacist to try to get this information for me. Does anyone have access to this follow up research? If I remember correctly the rate of haematopoetic and solid tumors was quite high but I admit that I wasn't reading the article closely and was just skimming through.

I got a call from the daycare I go to with the results of my last copper level (they are taking a week to come back now!) and it was well below normal. The level has dropped considerably since I've been having venesections and it seems a bit more than co incidence.

Another thing to ask my haematologist about.

Regards

Chirley