New Patient

Please post here your experiences of MDS as a patient, carer, family or friend

Moderator: Steering Committee

Post Reply
Bagpuss
Posts: 3
Joined: 17 Feb 2012 13:46
Contact:

New Patient

Post by Bagpuss » 22 Feb 2012 14:59

My name is Roger, 65 year old male diagnosed MDS last Wednesday 15th February and still reeling with shock. Not yet sure what sub group in but mind whirring and very anxious. Spoke to Sophie last week and she is sending me more information. Spoke to my support nurse today who has said that application for funding for Azacytadine is being made.

I live in Sandhurst Berkshire and would like to know if any other patients live near the area. Would welcome support from anywhere.

Roger
Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

Re: New Patient

Post by Jayne » 22 Feb 2012 22:10

Hi Roger

Welcome, you will find this site of enormous support. I'm a Yorkshire lass so not the right area I'm afraid, and I am rubbish at remembering where everyone is from but I have a feeling that there is a group that meets near you. Someone will post the correct info.

I would like to post something of more support but I'm also not an expert re Azacytadine, but I have seen lots of posts on here with regards to it's success. Maybe have a bit of a look around the site and search for it.

So, it's just a warm welcome from me!

Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
Contact:

Re: New Patient

Post by janetstanford » 23 Feb 2012 00:16

Welcome Roger

Same as Jayne i live a bit further north than her and i am no expert as she says have a look on site regional meetings may be a good 1 and i would say give sophie a call or e-mail she will be able to give you info on both subjects :)

well again welcome to the site hope you will join in and post we do not mind
take care Janet :)
Bagpuss
Posts: 3
Joined: 17 Feb 2012 13:46
Contact:

Re: New Patient

Post by Bagpuss » 23 Feb 2012 09:44

Thank you for your replies and advice Janet and Jayne. Early days for me yet!!

Roger
Sheldon

Re: New Patient

Post by Sheldon » 23 Feb 2012 13:46

Hi Roger
Welcome to the forum, I like you found the forum and became a member days after my diagnosis. Everyone (Jayne, Janet, Chris etc ) was very welcoming and reasuring. The advice from the long term members/suferers is invaluable and will help you on your journey.

I dont know if there is a Berkshire suport group, but I do believe there is one in Oxford that has only recently being set up (not to far fromyour neck of the woods)

Sheldon
chris
Posts: 633
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: New Patient

Post by chris » 24 Feb 2012 12:26

Dear Roger

I'm sure we all remember those initial days after our diagnoses and the confusion and feelings of hopelessness so our sympathies are with you. I presume you have had a bone marrow biopsy and that you will soon be told about which category your MDS is in? Before you begin to panic/despair over what you have no doubt read on the Internet, try to hold fire until you have all the information from your medical supporters. What Sophie sends you will also be very helpful and she will also know if there is any local support. Please look at the events section on this website for details of meetings as you may, for example, be able to get to the London meetings?

If the plan is to give you azacitidine, you will find some useful posts on this forum about people's experiences with that drug. Use the search facility. See especially the posts from David. Indeed, the Chairman of MDS UK Patient Support, Dr Rodney Taylor, has been on it for several years and it has made an enormous difference to him so please take some encouragement from that..

Not sure which hospital you attend but many of us have felt that, with such a rare disease, we would be better off at one of the Centres of Excellence for MDS. It is a personal choice and you have to weigh up the convenience of going to one's local hospital against the undeniable advantages of going to a centre which sees not just a few but hundreds of MDS patients and has research facilities and the capacity for delivering clinical trials.

How is the MDS affecting you on a day-to-day basis? Was it MDS symptoms that led to your diagnosis or did it turn up in the course of other medical investigations? For so many, it seems to be an out-of-the-blue diagnosis in people who felt they were otherwise pretty healthy.

I hope you are not finding the waiting too onerous - that seems to be the worst thing initially - please use the Forum for support. We obviously cannot give you any medical advice but we all have a range of experiences so at least you have then comfort of not feeling you are the only one - rare yes - but there are quite a few of us around!

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Bagpuss
Posts: 3
Joined: 17 Feb 2012 13:46
Contact:

Re: New Patient

Post by Bagpuss » 25 Feb 2012 09:29

Thanks to Chris and Sheldon for your comments. Also thanks to David for the telephone conversation last night. It all helps. I am still waiting to hear if I will be starting treatment with azacytadine. Sophie has been acting on my behalf in explaining to my nurse key worker that there is no longer a need to fill in application forms for funding for the drug. It is the waiting that creates anxiety. but have found the postings helpful.

Roger
Post Reply

Who is online

Users browsing this forum: No registered users and 1 guest