High risk mds more info needed

[Michelledoh2002]

Hi all I'm quite new to all this and mds but my father was diagnosed with high risk mds a few weeks ago. He has not yet started treatment he is due to start azactidine but his haemaglobin levels keeps dropping even after 3 blood transfusions in 2 weeks it's still dropping has anyone else experienced this or knows what the next step will be. Is there anything else to get haemaglobin levels up, can he still start azactidine if levels keep dropping? Any help or advise would be appreciated thank you!

[Neil Cuadra]

Originally Posted by Michelledoh2002

Hi all I'm quite new to all this and mds but my father was diagnosed with high risk mds a few weeks ago. He has not yet started treatment he is due to start azactidine but his haemaglobin levels keeps dropping even after 3 blood transfusions in 2 weeks it's still dropping has anyone else experienced this or knows what the next step will be. Is there anything else to get haemaglobin levels up, can he still start azactidine if levels keep dropping? Any help or advise would be appreciated thank you!

Azactidine is likely to make blood counts worse before they get better, and it doesn't work quickly, so stabilizing your father's haemaglobin is a more immediate concern.

If transfusions aren't sustaining his count, the doctor may give him Epo, a man-made version of the natural hormone erythropoietin. Epo is a growth factor that can boost red blood cell production and therefore haemaglobin. In the U.S. the formulations go by names such as Aranesp, Epogen, and Procit. For the U.K. I've seen mention of the names Aranesp, Binocrit, and NeoRocormon.

The specific recommendations you get will depend on the specifics of your father's situation. Almost every case of high risk MDS differs in some way from other patients, so educating yourself will help you ask the right questions, but not always help you predict the answers.

Good luck to you and your father.

[Callie]

Michelledoh2002 - First, let me welcome you to the forum. While I wish you didn't have to find it under these circumstances, you won't find a more helpful, welcoming, and knowledgeable group of people to help you through this journey (as always, special thanks to Neil and Ruth for creating this!). My dad (Bailie) never had issues with the red blood cell group (reds, hematocrit, or hemoglobin; his concerns were low platelets and whites), so I can't help you too much there. But he did complete many, many bone marrow biopsies and Vidaza (azacitidine) rounds, so I can tell you how that process went for him (very few side effects; more discomfort/fatigue at the end of each cycle than anything).

Dad was a success story in so many ways. I hope his journey continues to help others, and if there's ever anything I can assist with - as a daughter having just been through this for 3 1/2 years, please let me know! One of the biggest things we learned, as Neil pointed out - it's so important to know and understand the disease so you can ask the right questions. But how each person reacts to the disease and treatment is anybody's guess (even when it appears they are in the same medical situation).

I wish the very best for your dad!

[Michelledoh2002]

Thank you folks. I've been online researching for days there is so much to take in, I'm sure it will take me a while to get any understanding of this illness. I'm glad there is forums like this reading through a lot of people's journeys is a great help and reading them to my father is helping him a lot as he now realises other people have the same symptoms as him. One thing I have realised through this site is my father is a lot younger than most of the patients here he's only 56 so hopefully that will help him fight this illness better. I will continue my research and I'm sure I will have a lot more questions in weeks to come.

[Neil Cuadra]

Originally Posted by Michelledoh2002

One thing I have realised through this site is my father is a lot younger than most of the patients here he's only 56 so hopefully that will help him fight this illness better.

That's good to hear. The combination of age and overall health makes a practical difference and typically influences doctor recommendations. Is your dad generally healthy?

Doctors use the word "comorbidities" to mean "other diseases or health conditions that you have." Statistics tell the story. For example, one study found that MDS patients with congestive heart failure or chronic obstructive pulmonary disease fared significantly worse, statistically, while diabetes made much less difference.

It pays off in many ways when we each take care of ourselves, watch our weight, eat right, get exercise as we're able to, alert our doctors when we notice changes in our condition, and follow the medical advice they give us. One of those payoffs is an improved prognosis when a serious illness occurs.

[Michelledoh2002]

Yes hes healthy aside from mds he's never been sick or had any other illnesses. He does have diabetes but doctors have confirmed that it won't cause any complications. He's been diagnosed 4 weeks now and no treatment has started yet so it's just so frustrating at the minute, every week we are getting told nxt week but bloods keep dropping even after transfusions so treatment gets delayed.