Myelodysplasia (MDS)

[chevy]

Hi I haven't been on our community site for 2yrs since then I have had 4 cycles of FCR , unfortunately they stopped the last 2 cycles due to nutropenia now I have been dignosed with MDS ( Myelodysplasia ) is there anyone else that has this sorry about my spelling I have a bad bout of the flu. God bless and you all stay healthy

Ps I'm from Australia if I hadn't put that in my other posts .

[AussieNeil Administrator]

Hi Chevy,

I hope you don't mind me correcting your spelling so that others later can find your post. (I had to check the spelling myself as it is a challenging word to spell!!)

Sorry to hear of your diagnosis and to hear that you have the flu... Off hand I don't recall of any members posting about having this blood condition and site search didn't turn up any either). That's surprising, because it is a known risk from FCR treatment.

Have you made contact with the Australian Leukaemia Foundation? They support a large range of blood conditions, not just Leukaemia or Lymphoma:

leukaemia.org.au/blood-canc...

Do you have a good haematologist?

What's being proposed with regard to your MDS?

I hope that you can find some answers and the help and support you need.

Neil

[chevy in reply to AussieNeil]

I have a professor at Gosford Hosp I also have 2 wonderful cancer care nurses.with this MDS there are a few treatments the last resort if all else fails will be a bone marrow transplant.i have had 4 bone marrow bi ops. And since November last year I have been admitted to Hosp 5 times .

I am the 4 th family member to get leukaemia unfortunately they all passed away with AML I am only 46 yrs old. Finally I have been granted the DSP from centrelink .Thank you so much for your reply I'm of to bed now feeling very tired .

I wish u good health .

[PhilC]

Hi Chevy, I have MDS with excess blasts (RAEB) currently in watch and wait stage, if there are any questions I can help you with please let me know. Regards, Philip

[kady1270]

My husband was recently diagnosed with MDS. He started a clinical trial with Decitabine at half strength under the theory that this would slow it down. Unfortunately, it drove his blood counts so low he wound up in the hospital for 4 days and needed a hemoglobin infusion. Has anyone else had experience with treatments?