Hi. My husband was recently diagnosed with Myelodysplastic Syndrome (Myelodysplastic syndrome (MDS)). We live in Zimbabwe and very little is known about Myelodysplastic syndrome (MDS) here. The doctor had to contact the haemotologist who made the diagnosis to find out what it was. We have been told that there are no treatment options available and it will have to be managed by blood transfusions. Our questions about what to expect, diet, regular blood tests and how often he will need transfusions have all gone unanswered. We were also told not to make a follow up appointment until we felt a transfusion was needed! Any advice would be appreciated.
Good morning and welcome to the forum.
It must be very tough with the limited information you have been given and the lack of knowledge from your doctor.
I’m sure others will be able to share their experiences. In the meantime here is a link to the information on Myelodysplastic syndrome (MDS).
Once you have read the information I would suggest writing Dow all of your questions. When is the next appointment?
I am going to make an appointment for mid December so that if a transfusion is necessary it can be done before the holidays
A great big welcome to our forum.
This is obviously a UK site so medically the medications and treatments can be very different.
I attach this sites details on Myelodysplastic syndrome (MDS)
Myelodysplastic syndromes (MDS) - what is it, symptoms, treatment and prognosis | Blood Cancer UK
Perhaps write down all the questions you would like to ask at your husbands next appointment, whenever that is needed.
Your husbands diagnosis sounds as if might have come out of the blue.
It was a great shock to me.
How are you both emotionally and you might both be dealing with it very differently.
As to what to expect this is a personal reply, no a medical one, that perhaps is just an balanced, healthy, diet.
As I said earlier medically it depends on the services in your country.
Good idea to make an appointment for mid December.
Look after yourselves and please do let us know how you get on.
Thank you for that. His diagnosis was made after repeated infections over the past 2 years, some of which required hospitalisation. For now, we have changed our diet to a much healthier one, and we are trying to find out as much as we can about Myelodysplastic syndrome (MDS) as well as being as positive as we can about this.
I am glad that you have found us. I was diagnosed with Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) overlap at the beginning of 2021. I am treated with a drug called Aranesp which helps my blood count and so far h is working well and so I am not needing blood transfusions yet. I did have 4 weekly appointments with blood tests first, but now I go for 7–8 weeks between appointments. I hope that you are able to have blood tests regularily. Keep positive and keep in touch. Very best wishes Kate