Had MDS three years now

[Rosemary]

Hi!
Not new to MDS but new to using the forums. I have 5q- MDS, diagnosed l5th January 2009, and after blood transfusions and a bone marrow biopsy, the 5q- was discovered and my doctor put me on Revlimid. It gave me back my old energy and I have had a very good two years since starting it in October 2009. I realise that it could stop working, but I'll take what I can get for now. I am too old for a bone marrow transplant, and also have heart trouble and high b.p. so wouldn't be a candidate anyway.
I go to a local cancer support group, which has been a great help in dealing with all the feelings that go along with being diagnosed with a rare disease I had never heard of, and I volunteer at the local hospital now, in the Oncology Clinic.
Life since retirement was a bit dull, but since my diagnosis, all kinds of interesting things have happened and I have made some lovely new friends, so it's not all downhill. I particularly enjoy the webinars put on by the AAMDSIF, as they are so informative and I can ask questions as well.
I like to walk every day, although some neuropathy in my feet doesn't always help, and I have to be extra careful, but it's good exercise.
I look forward to reading comments in the forums and a long and happy relationship with Marrowforums

[Greg H]

Hey Rosemary!

Welcome! It sounds like you are doing quite well living with MDS, which is definitely no picnic.

I, too, am a huge fan of the AAMDS webinars and archived presentations. My work schedule pretty much prevents me form attending one of their events in person, so it's great to be able to get in on the action via the internet. I have learned so much from those folks.

Take care!

Greg

[cathybee1]

Welcome, Rosemary. This is a journey for everyone here, these forums have been a godsend for me, it is wonderful the Revlimid is working for you. I am glad you are with us.

[kgtuck]

Hello, Rosemary, Glad to meet you, this is a great site for those with similar diseases and stories to come together. Like you, I have found a successful treatment (Dacogen) since first diagnosed in summer of '09 and have been able to lead a normal life since. Certainly one has a new outlook on life, enjoying every little thing every day! Great that you have support group and volunteer job! My husband keeps abreast on the latest research, such as the webinars you mention, and that new drugs and applications are on the horizon!!! Read a wonderful quote recently, "If life hands you a bitter pill, it may turn out to be the very medicine that will make you strong." Take care and hope that everyone on this forum will find their "miracle" drug and/or combinations for these bitter diseases!