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Please post here your experiences of MDS as a patient, carer, family or friend

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Cheryl C
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Joined: 22 Oct 2013 12:47

Just joined this forum

Post by Cheryl C » 31 Oct 2013 10:16

Hi everyone

Just introducing myself to this forum. I'm in Australia, and I have MDS (RCMD). I think forums are a marvellous tool to find out more about MDS and how other people are coping with it - so many courageous people out there!

In September 2011 I was diagnosed as being on the cusp of RAEB2, as I had 10% blasts.. I had had chronic idiopathic neutropenia for around 6 years prior and had become progressively unwell over about the previous 2 years. At the same time I was diagnosed with hypogammaglobulinaemia, for which I have been having gamma globulin infusions monthly ever since.

I decided to take the BMT option, and my older brother turned out to be compatible. Over the next 4 months, I had all the tests to see if I would be a suitable candidate for transplant, and these culminated in another BMB. I had been praying that God would show me if I should go ahead with the transplant. Amazingly, when the results came back my blasts had dropped to 2% and I was re-diagnosed as RCMD and taken off the transplant list.

I have monthly blood tests and am remaining reasonably stable. Although all my cell lines are abnormal, only the white cells and neutrophils are a worry at this stage. Last BMB Jan 2013 showed blasts still less than 5% overall.

Do any of you have hypogammaglobulinemia as well as MDS? I'm interested to know if there's a connection with low globulins and low white cell/neutrophil count. Do any of you know whether having gamma globulin can compensate for the low white cell count? The reason I'm asking is that even though I'm mostly severely neutropenic, since starting the gamma globulin I rarely get an infection.
Diagnosed with MDS RAEB2 Sep 2011. Now MDS RCMD + Hypogammaglobulinaemia. Main problem: WCC - neutrophils. In Watch and Wait mode.
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Post by Goldtooth » 01 Apr 2015 18:34

I was diagnosed with RAEB 2 at the end of last November, I felt as if my life had hit the buffers.
My own GP did not refer me to a specialist after nearly two years of sinus infections sometimes with nose bleeds
So disillusioned by this I consulted a ENT specialist privately who after tests referred me to a haematologist who after tests and a BMB diagnosed RAEB2.
I am starting my fourth cycle of Azacitidine on 7/4. I have not had any adverse reactions to the drug as yet but dread every blood test result. The results after the second cycle were very good but the true effect can only be assess after 6 cycles.
The haematologist told me effectiveness can last 1-5 years.
I am physically fit, but emotionally a wreck. I get overcome by the enormity of my situation and wake in the night with panic attacks.
The hospital treatment is superb on all fronts and they are arranging counselling for me to deal with this issue.
I would dearly like to hear from anyone else in a similar position as I have not met anybody at the unit I attend undergoing the same treatment or with the same condition
I am a male of 70 and think I'm still 25
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