Myelodysplastic Syndrome with Excess Blast MDS EB2

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

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Myelodysplastic Syndrome with Excess Blast MDS EB2

Post by ABE153 » 23 Jul 2019 07:06

Dear all,

My dad has been diagnosed with Myelodysplastic Syndrome with Excess Blast MDS EB2. He has gone through 5 cycles of Azacitadine + Venetoclax treatment for the past 6 months and unfortunately proven not affective.

Currently, his doctor has suggested to take Cytarabine and Thioguanine treatment to suppress the cancer cells but will not cure them.

Does anyone have similar experiences and I would be extremely grateful if you could share your treatment experiences and their effectiveness.

Many thanks,
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Joined: 07 Mar 2013 11:22

Re: Myelodysplastic Syndrome with Excess Blast MDS EB2

Post by christina » 24 Jul 2019 17:15

Hi Alex sorry to read about your Dad, do hope you receive a few replies, the trouble is we are all so different and what works for one doesn't mean it will work for someone else. I was diagnosed in 2009 and have several different types of medication which enabled me to live a normal life, however I'm now on my 14th cycle of azacitadine, plus fortnightly blood transfusions and as I'm now 73 still able to live a fairly full life, my biggest achievement this year is that today after over a year I felt I could manage to play nine holes of golf, still pinching myself as I have had times when I feel so poorly and never thought I would play again, it's so important to try and keep active and believe me I do know how hard that is. Have you had contact with Sophie at King's she is so knowledgeable and supportive. I wish you and your Dad all the very best regards Christina
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