MDS with 5q-deletion - urgent help

[layla g]

my mother is in Iran diagnosed with MDS, she is very sick, she had 2 transfusions in 4 weeks. I'm in Australia, trying to understand the disease. Doctors in Iran have given her 5 months. I went to a specialist in Perth(Aust.), he prescribed Revlimid, she is on Talidex 100mg, unfortunately it is not doing much. Due to the sanction, not many drugs are allowed to be sent to Iran. I really do not know what to do! Can any body suggest any thing......

[Chirley]

Hi Layla, I'm sorry to hear about your Mum.

I don't know a lot about immigration rules but are you able to apply for your mother to come to Australia on compassionate grounds. I know that she wouldn't be entitled to any help from Medicare for health issues but if you can afford her health treatment, that might be an option. Celgene ?? sometimes allows compassionate use of their drugs if the doctor submits an application. This would help with the cost of the Revlimid.

So sorry to hear of your dilemma, it must be very difficult for you.

Regards

[Greg H]

Hi Layla!
Chirley has a great idea about getting her to Australia, or trying to get Celgene, the manufacturer to help). Revlimid is definitely the standard therapy for deletion 5q, and it helps the majority of folks in that category.

So sorry to hear about your dilemma.

Take care!

Greg

[layla g]

Thankyou very much for your advice. I am thinking of bringing my mum to Australia. I do not know how long it will take for the process and I don't know whether we have enough time. I have found the generic form of Revlimid which is Lenalid in India but I'm not sure whether they are the same. I am trying to obtain the cheaper version as soon as possible but as doctors in Iran are not experienced with this drug they are not prepared to take the responsibility and start the drug so I have double dilemma. Somehow I have to overcome this. I have to get my mother in a more stable situation so that she is able to travel. The only thing I have is to pray at the moment.