New to MDS diagnosis

[katydid]

Hi Ray
Sorry but we don’t all live in the states – we live in a little country called New Zealand – on the other side of the world from you guys – we have a total ( country ) population of just under 4 million people. So forgive our lack of knowledge and resoruces but we just don’t have the expertise to call on that you guys do – and we have have no money to leave here so we are depending on this site to understand stuff

Cathie
ps – I bet the numbers you quote relate to US of A – in this country there are probably about 20 people who have what I have

[Jeanie]

Hi Everyone,

Very happy to find this forum. I was just diagnosed with Intermediate-1 of this disease. Since March of this year I have had blood transfusions every 3 weeks. After 3 bone marrow biopsys, they finally came up with a diagnosis. I will be starting injections next week with Nuprogen and Procrit. I want to learn everything I can about this disease and hope to share anything I learn with everyone. Most all to give and receive support.
Jeanie

[maggiemag]

Welcome Jeanie! Glad you have found us, although I’m sorry that you need us. If you haven’t already, I suggest calling the MDS foundation that runs this site, and have them send you the free booklet about MDS. It is over 100 pages and very comprehensive. It is also very easy to understand, IMO. You can find answer to pratically any question you might have.

Mags

[Jeanie]

Hi Mags,
Thanks for the warm welcome. I will definitely call the MDS foundation to get the free booklet. Right now I am so overwhelmed with all of this and basically trying to come to terms with it. I have a loving and supporting family and now this forum, so just plan to take one day at a time and keep a positive attitude. My heart goes out to everyone that goes thru these life threatening illnesses and prayers go out every night for all. Basically just trying to read some of the posts to get a feel for all of it.
Jeanie

[katydid]

welcome Jeanie – you sound a lot like me – int 1 and not long found out what we are dealing with.How are you going dealing with family / friends reactions ??? I get a bit over this site sometimes as i have trouble fitting in – but good you are here – keep us in touch with what is happening

Mags and Laurie – I haven’t been here for a while – they have found me a donor ! very scary – but seems to be the teatment of choice out here in the colonies !
Hope you are both as well as possible
much love
Cathie

[Mary4Mike]

Cathie,

You are extremely blessed to have a compatible donor. Have they scheduled your transplant? Do you know what your exact MDS classification is, such as MDS RA or MDS RAEB? Have they mentioned if you have blasts? This whole transplant thing is extremely overwhelming. As you can read from my signature, we are into the early stages of post transplant (Day 14). If you have questions along the way, I would be glad to try to give you answers from our experience.

Keep us posted and stay strong!

Mary

[katydid]

Hi Mary
Lovely to hear from you
My blasts are at 2% from April this year – but I am scheduled for next BMB on Nov 9th – Will hear on 9th Dec what the results of that are and whether I have been accepted by the transplant panel so – fingers crossed ( I think !!! )
Int 1 is the RAEB I think – still have trouble translating these things between here and America
And wow – day 14 of the first hundred days – what is your partners name and how is it going so far ??
love and thoughts
Cathie

[Mary4Mike]

Hi Cathie,

2% blasts is better for you going into transplant. My husband, Mike, had less than 1% going into transplant. This allowed him to go without total body radiation. He just had the standard pre-chemo protocol. You would not be classified as RAEB because the EB stand for excess blasts. You may be MDS RA Int.1 (?)

Have you done any treatment at all? It is a big decision to go the transplant route, but if you trust your doctors and take in all the info, it ultimately comes down to YOUR decision. I couldn’t make it for my husband……HE had to make it. Of course, we discussed it ALOT, but it came down to him. He is the one who has sat and endured hundreds of units of blood, thousands of blood draws, hundreds of chemo treatments, not me. He was ready and so we went for it.

This is a new page in over 30 years of marriage and we are living every minute to the fullest. This can really pull you closer, but it is very stressful and scary, and therefore could put a strain on a relationship that isn’t already solid.

You have a couple of months now to really think on this, pray about it if you are so inclined, and come to the decision that is right for YOU.

All the best,
Mary

Things are going well. We have our first clinic visit after being discharged tomorrow. More blood tests and med tweaking.

Stay in touch.

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