Father with MDS
January 8, 2017 at 1:25 pm #31513
All, my father (who is now 79) was diagnosed with MDS a little over 2 years ago. I believe it was caught a bit late as his blood tests showed signs of something wrong since 2011 but unfortunately neither him nor his GP/doctor paid much attention to it. Once diagnosed he was classified as RAEB-t and had 21% blasts. He lives in Italy, hence I am not sure the way things are classified is the same, but from what I read on this site he was already moderate to high risk. He was put on Azacitidine/Vidaza straight away, for 7 days a week. His blood counts seemed to get worse little by little – haemoglobin, platelets, white and red blood cells – and I could see that he was getting weaker. I was worried and we just seemed unable to get any honest explanations from his doctors (my father always had the feeling they didn’t care but this may be due to how vulnerable he feels). So I took him to one of the MDS centres of excellence in Italy for a second opinion. We found a much more empathetic doctor who explained to us that the treatment my dad is doing is right for him. That it had some effect (got the blasts down to 14%) but not the results that they would hope for. And that he should just continue.
My father is getting fixated with how long he has to live and it is just not possible to give him an answer.
In January last year he started to get transfusions as his blood counts were just too low. Vidaza was reduced to 5 days a week as it was getting his platelets down.
In the last few months I have seen him getting worse and worse. He is also getting very forgetful, as if his brain was not working properly anymore….but I don’t think this is connected to MDS.
I am really worried and feel totally hopeless. I live in London and try and get back as often as I can but never feel it is enough and I just can’t face the thought of losing him and just can’t accept the fact that there is nothing that can be done….or at least tried. My dad is really down as he is scared and tired most of the time. Neither him or my mum are getting any psychological support, which I actually think could be beneficial. Their life has changed radically and they are lost.
So, I am really sorry for the long email but I wanted to know if anyone has any suggestion or advice. I read about clinical trials and even listened to some of the MDS conferences on line. I hear there is so much research going on and would be prepared to take him anywhere in the world (provided he is good enough to travel…).
I also wonder if there are additional therapies, supplements etc. that can help make his life at least a bit more tolerable…I would be really grateful for any help! Thanks so much. AnnaJanuary 8, 2017 at 3:12 pm #31514
In the US a blast count of 21% is no longer MDS but is leukemia (AML). I had MDS RAEB-2. At age 73 I had a successful stem cell transplant. This is the only cure. Other than a transplant Vidaza and transfusions are the current treatment. I did a clinical trail that reduced my blasts from 11% to 1%, so you might want to explore that treatment.
RayJanuary 8, 2017 at 4:54 pm #31515
Thanks so much for replying Ray. I also thought blasts so high would be leukaemia, but my father was definitely diagnosed with MDS with a chance for it to develop into leukaemia…Where did you get the trial and what was it? I am just not aware of any clinical trials in Italy….Thanks again!January 8, 2017 at 7:35 pm #31516
The drug I took was Enasidenib, also known as AG-221 from Agois, is a potent and selective IDH2 inhibitor with potential anticancer activity. It is only for people with a mutant IDH2 gene. Clinical trials are free. Treatment in the US is expensive. For my transplant, complications and aftercare the bill was $2 million. I did my clinical trial at University of Colorado Hospital in Aurora Colorado. You can find all US clinical trials at https://clinicaltrials.gov/January 9, 2017 at 4:52 pm #31525
Thank you!February 8, 2017 at 1:33 am #31623
Hello. I’m so sorry about your father. My father had MDS. He was 83. This is the most horrible disease. And yes, psychological help would be very helpful, because it is a disease that makes everyone envolved feel hopeless and helpless. Also, good nutrition is so important. No matter what they say! I pray for you , your father and your mother. And yes, life changes drastically because of this disease. It is definitely a disease that needs more research! !!!!! I really believe that healing must include spiritual, emotional, nutritional, as well as physical. Thank you for listening.March 5, 2017 at 12:24 pm #31817
Thank you for your message, so sorry it took me long to reply. Anna
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