Hi de hi

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Scubadude
Posts: 11
Joined: 22 Dec 2014 20:00
Location: Medway, deepest darkest Kent
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Hi de hi

Postby Scubadude » 23 Dec 2014 10:31

Hi there from a new member on this forum and unfortunately a newly diagnosed MDS patient.
I'm in the Medway area of Kent if any other members are near by?
Early days for me yet. Have requested the information pack but I'm sure in due course there will be things I will want to ask on here.
Regards
Ian.
Diagnosed with MDS (RCMD) in Dec 2014.
Fingers crossed for a transplant soon.
MollyP
Posts: 73
Joined: 04 Mar 2013 13:01
Location: South East England
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Re: Hi de hi

Postby MollyP » 23 Dec 2014 13:39

Ho de ho, and a happy Christmas.
I know from experience of using this site that answers to most questions are not very far away.
If you can do go to a patient meeting, we went the first year of my husbands diagnosis and found it very helpful.
My husband is coming up to the second anniversary of his MDS diagnosis and is as well today as he was the day he was diagnosed, VERY WELL. and in our case although rare we are over the scary stuff you read in the booklets so do take some of that with a pinch of salt and talk to your oncologist about survival rates if you have read scary stuff.
Best wishes
Molly
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK
April 14 Taken off Hyd' - low neutrophil
Still w&w
Jan 15 raised counts but retains w&w status
May 16 still w&w
Scubadude
Posts: 11
Joined: 22 Dec 2014 20:00
Location: Medway, deepest darkest Kent
Contact:

Re: Hi de hi

Postby Scubadude » 23 Dec 2014 13:54

Thanks Molly, nice to read your post.
Yes some of the stuff in the booklets is a bit scary, to be honest wasn't sure I would make it to today reading them :)
I have to say that so far the consultants at my local hospital have been excellent, as have all the staff there. I am sure they will fill me in on anything I need to know.
Was quite funny as they gave me a booklet which listed 5 types of MDS. When I asked which one I was the reply was none of them lol. Seems mine doesn't really fit in to those boxes.
Onwards and upwards!
Ian
Diagnosed with MDS (RCMD) in Dec 2014.
Fingers crossed for a transplant soon.
NW1958
Posts: 11
Joined: 13 Nov 2014 11:30
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Re: Hi de hi

Postby NW1958 » 23 Dec 2014 14:11

Ian

We are in a similar position i think.
My diagnosis is very recent and as you say when you ask which type have i got then, the answer is well none of those, at least not quite.
The information is brilliant but i am finding out quickly that you have to be selective in what you read. I tend to get a big dose of hypochondria as well!!.
I hope things progress well for you.
Regards
Nigel
Male, Aged 56, Still working, Recent diagnosis, Based nr Exeter
Scubadude
Posts: 11
Joined: 22 Dec 2014 20:00
Location: Medway, deepest darkest Kent
Contact:

Re: Hi de hi

Postby Scubadude » 23 Dec 2014 16:22

Cheers Nigel.

There is it seems quite a bit of info out there but as you say probably need to be a bit selective with it.
Likewise hope things progress well for you too,
Diagnosed with MDS (RCMD) in Dec 2014.
Fingers crossed for a transplant soon.
janbev
Posts: 25
Joined: 23 Dec 2013 13:18
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Re: Hi de hi

Postby janbev » 24 Dec 2014 17:27

Hi Ian,
First let me wish you a happy christmas. The problem with MDS is that there are so many variations on the theme that only little bits of information apply to you so you have to be selective. My husband was diagnosed with MDS in July 2013 and was told at the time he had one form 3 months later it was different! He was also told that he had had it for at least 3 years looking back at his blood tests. We attended the UK patients meeting in October in London and found Dr Austin's talk very informative. He told us that if all the people in the room (there were 30 to 50 all told) had MDS then each one would be different, that no 2 MDS patients are exactly the same so they need to be treated as individuals. He also told us that the survival charts are historical and refer to patients who have not been treated for MDS so not to take them too seriously. The next magazine should have a report on the meeting.
One thing have a look at the Travel Insurance part of the forum - if you want to go abroad getting travel insurance can be quite a struggle as most of the main companies wont insure you. Also remember anyone going with you needs to declare your MDS.
Happy Christmas
Janet
Janet N - Husband diagnosed with RCMD July 2013. On watch & wait. Low neutrophils, low white blood cells. At present on 6 monthly hospital check ups
Glynjo
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Joined: 20 Oct 2014 17:49
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Re: Hi de hi

Postby Glynjo » 26 Dec 2014 21:18

Hi Ian,

I am also recently diagnosed MDS back in summer. I would concur with all comments made by fellow members, it's a good source of information and advice. I am further along the South Coast in Hampshire, waiting for stem cell transplant. Try the face book page.

Glyn

Diagnosed Aug 2014 - intermediate 1, transfusion dependent currently and started azacitidine this month.

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