[Cheryl C]

Hello Twilee's Mum - I understand a lot of what you are feeling as I was also diagnosed with MDS (10% blasts) around 10 months ago. Support sites such as this one are wonderful so keep logging in and asking questions. There are people who have trodden the road before us and their responses are often invaluable.

Please try not to be stressed because I'm sure that stress contributes to our level of well-being. Just find out as much as you can about the disease and prognosis and make informed decisions. I decided to continue my life as it was (working, etc) until I knew all I needed to know. That took 5 months, while my brothers were tested for compatibility and I had all the tests to ensure I was fit for a transplant, then at the last biopsy before going ahead with a BM transplant, my blast cells had inexplicably dropped to 2% and my diagnosis changed from RAEB to RCMD.

The best thing I have done now is to stop work and go on an extended holiday with my husband. We're travelling around Australia. Although my blood counts are all abnormal I'm not having any treatment except for 4-weekly infusions of IntraGam for hypogammaglobulinaemia. So far I'm going OK. Yes, I feel unwell at times, but I find that regular walking actually helps me feel better afterwards.

I guess what I'm saying is, try not to panic and make really fast decisions! Every time you think of a question you want to ask write it down and go through the list when you see your doctor.

May God bless and guide you as you seek the best options for you!