http://www.mdspatientsupport.org.uk/forum

Hi. I'm new to the group.

My 90 year old father has just been diagnosed with MDS and given 12 - 18 months to live without treatment. Can anyone offer advice on how much extra time Azacitidine might give him and whether it will give him a better quality of life. He has no other ailments and is still very sharp and capable. However, he's very confused about what to do. To keep going with transfusions as long as he can or commit to treatment which involves multiple clinic hospital visits and potentially unpleasant side-effects. Am I right in thinking that with his current prognosis, the treatment might only offer him another few months at best.

Many thanks

Nigel

Hi Nigel I am 73 and was diagnosed in 2009 since then I have had a few different treatments that have enabled me to live a normal active life, however last year mine changed from MDS to AML and I was offered a transplant or treatment with azacitadine which I've been on since May and have been told that I appear to be responding to treatment, I chose the azacitadine over a transplant because I felt I couldn't go through that intensive program at my age. I feel I've coped with the azacitadine treatment but there are irritating side effects, no one can advise you on this as we are all so different however if your father at ninety has a fairly good quality of life I would say think very carefully about it, azacitadine isn't a cure but hopefully keep it at bay and to have injections for 7 days can be very tiring plus I still need a transfusion every 2 weeks, but it's enabling me to live a fairly normal life. I wish you all the very best with your desicion it's not an easy one, just keep asking lots of questions and give my regards to your father Christina (Tina)

Many thanks for your reply Christina.

My Dad has decided to go ahead with the treatment and is set to start later this month. Will post updates on progress. He's always been very hardy - this is his first time ever in hospital, apart from as a visitor - so hopefully he won't find the side effects too wearing.

Take care

Nigel

Give your Dad my best wishes, I was up at King's yesterday and I'm going to have the azacitadine every six weeks instead of monthly as they are pleased with my progress after having 12 cycles, so feeling happy about that, massaging primrose oil on the injection site has really worked for me, wish you both well for your dad's future treatment Tina

Thanks for the comments here. I'm 72 and will be starting with Acacitidine in the new year.