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recently diagnosed with mds raeb II

Posted: 05 Sep 2013 17:11
by berry83
Hi,

I've recently been diagnosed with mds and although feel a bit tired am otherwise fine and still going to work. have been told that they are going to give me vidaza to treat it along with procrit (I think) does anyone know anything about this or what I should be taking for best chance of getting a transplant. I'm 29 years old.

my doctors don't know much about it and are playing a guessing game any advice would be great.

Re: recently diagnosed with mds raeb II

Posted: 05 Sep 2013 22:31
by raymondhowell
berry83 wrote:Hi,

I've recently been diagnosed with mds and although feel a bit tired am otherwise fine and still going to work. have been told that they are going to give me vidaza to treat it along with procrit (I think) does anyone know anything about this or what I should be taking for best chance of getting a transplant. I'm 29 years old.

my doctors don't know much about it and are playing a guessing game any advice would be great.
Hi Ray here, sorry to hear you have mds but from how your explaining your condition and treatment you are not to sure about how it is being treated,you realy need to have a good clear talk to your mds specialist,if you are saying it is your GP that is playing the guessing game this is because GPs are no to clued up on mds,you should also give Sophie Wintrich a call or drop here an email she can give you plenty of help ,information,and some good advice, hope this is useful to you kind regards Ray.

Re: recently diagnosed with mds raeb II

Posted: 05 Sep 2013 23:17
by berry83
Thanks Ray,
M
I am very confused as whats going on. I was given info saying that prognosis is two years unless i have a transplant and it all just went over my head. How can i only have two years left when apart from feeling a little tired and needing bloods every few weeks i feel fine and csn carry on at work. It doesnt make any sense. Doctor says i should consider taking time off sick but I dont fel sick. i have a toddler its natural to feel tired. yes i knkw blood transfusions.are.not normal but since giving birth i hace lalways needed tgen due to anemia so nothing is new now.

Nothing makes sense and the doctors dont seem to have any answers.

Re: recently diagnosed with mds raeb II

Posted: 06 Sep 2013 15:22
by sophie
Dear Berry83,
please do give me a call - so we can go through all the information you were given so far.
It is often easier to do over the phone.
At the beginning - when you have just been diagnosed, reading detailed information is just so hard.
And remembering all that consultants say is difficult as well.

As you say - information goes over your head - and you are confused.
This is normal.
We can help you understand it better.

I'd like to help with simple explanations to start with.
Once you understand the basics about MDS - you'll be able to slowly add in the more complex differences about the sub-types of the condition.
You are very young - so you have the option of a bone marrow transplant - which is a cure for MDS.

It is very important to understand the differences - and that everyone with MDS is individual in their type and response to treatment.
It may be that you also need a referral to a MDS specialist - we can talk about this too - many patients do this to get an additional opinion.
This is a standard request when it comes to a rare disorder like MDS.

Please do give us a call today or early next week (I am away on holiday 12th Sept-27th Sept).

Hope to hear from you.