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RAEB2 and Azacitidine

Posted: 01 Apr 2015 19:49
by Goldtooth
Recently diagnosed with RAEB2.
I start cycle 4 on 9/4 and I have no adverse reactions to the treatment.
I'm physically fit but an emotional wreck, often overcome by fear and feelings of helplessness.
I'm determined not to go down without a fight though.
Does anybody recently diagnosed experience these feelings?


Re: RAEB2 and Azacitidine

Posted: 07 Apr 2015 12:29
by chris
Dear Anthony

I think we can all identify with your current feelings and I would support the idea (which you mentioned in other posts) of having some counselling to help you make sense of how you are feeling and maybe allay some of the anxiety that most of us would have when being confronted with a difficult diagnosis. Personally, I'm not a great one for the battle analogy because to "lose the battle" and succumb to the disease somehow implies you didn't fight hard enough -when in reality a lot of what happens as a result of MDS is down to or own physical make-up, how the disease decides to progress and the skills of those medical people caring for us! But, as they say, we are all different and deal with disease in our own way. I also felt pretty helpless when first diagnosed and didn't see the point of much of life. Now I find I am OK mentally as long as "symptoms" do not manifest themselves at which point I get anxious all over again!!!

It sounds as though the Azacitidine is working for you and that is a great bonus. Also great that you are not suffering any/ many side effects from the treatment. All good news. There are plenty of people on this forum on Azacitidine who could share their experience - just search Azacitidine and they should all come up!

I wish you all the best in coming to terms with MDS.

Take care


Re: RAEB2 and Azacitidine

Posted: 07 Apr 2015 19:18
by Goldtooth
Dear Chris,
Thanks for your reply and words of encouragement.
I'm certainly not going let the disease take control of my life, I will fight it for all I'm worth.
I'm seeing my haematologist a week later than normal next week as she was at a conference today when I should have seen her.
She always has a blood test done on the day, but in this instance any test next time I see her will be at the last day of the present cycle.
This would show my levels at their lowest so I arranged to have a blood test today before I started treatment.
Some levels up and some down, but certainly an improvement on the levels shown in the blood taken last Thursday.
Like Rocky Balboa, my fight goes on.

Best wishes