Being diagnosed...

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

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Simz
Posts: 7
Joined: 14 Mar 2010 22:17

Re: Being diagnosed...

Post by Simz » 25 Mar 2010 19:42

Dear Chris
It has been confirmed as MDS, he did not specify which type, but I have a loss of chromosome 7 and <5% blasts. He said I need a chemo and a bone marrow transplant. So all the preparation will start soon! I am feeling positive though, and will take it as it comes! I will try and keep in contact with the UK support forum, but I am sure I will be notified of any in SA. I will certainly try and update when I can here!

Take care

Simz
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Being diagnosed...

Post by chris » 25 Mar 2010 20:19

Dear Simone
Thank you for letting me know. I'm glad you are feeling positive about the proposed treatment and at least you now know what you are dealing with. I expect you will get the tissue typing done in SA and I do hope your brother is a match. I found out that my brother is so that feels comforting but, if not, finding a match on the international register is an option, I think. Do read the experiences of stem cell transplants on the discussion forum as there is a lot of information there about what to expect. I hope there is not too much delay when you transfer your care back to SA.

Have a safe journey home, make sure your family gives you lots of hugs (but no kiss and touchers!) and know that we are thinking about you and wishing you a good recovery.

Best wishes


Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Simz
Posts: 7
Joined: 14 Mar 2010 22:17

Re: Being diagnosed...

Post by Simz » 13 Apr 2010 20:27

Hi Chris
Sorry I have not been writing. We found out today my brother is unfortunetly not a match. So the search begins! I have found a great oncologist/mds specialist x2 who are working together. I will be having the transplant in Cape town, with Prof Jacobs who Cavenagh recommended and knows well. My oncologist here in Johannesburg is taking care of things until I go down to Cape town into Prof Jacobs hands. I am undergoing a detox, liver cleanse and receiving oxygen therapy at the moment. I want to be in optimal health for the transplant! I started a blog as well Feel free to have a browse http://simz2807.blogspot.com/

regards
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Being diagnosed...

Post by chris » 18 Apr 2010 17:40

Dear Simone
Thanks for replying - wasn't sure if you would be able to post here now you are back in South Africa. You have had a lot happen since your return and so sorry that your brother is not a match and I wish you well with the search for a matched donor. I've had a look at your blog - nice to see a photo of you to put the face to the name! Sounds like you have your medical care all sorted too and you are getting yourself in good shape for the transplant when the donor is found. I'll follow your progress through the blog and have now got the new blog address. Take care.

Chris

,86.160.202.173
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
amyg

Re: Being diagnosed...

Post by amyg » 21 Jul 2010 12:04

Hi

My name is Amy and Im 26 and have just been diagnosed with MDS. I suffered with aplastic aneamia 10 years ago and was given the all clear 5 yrs ago. My family were unaware with the link to MDS and AA so all of this has come as quite a shock to us. I think this forum and website is amazing and its great to hear other peoples thoughts and experiences. I am waiting for a bone marrow transplant, unfortunately non of my sibblings are a match but they have all joined the Anthony Nolan regsiter to see if they can help anyone else! Im hoping to get over this and have a family at the end of it all. The doctors just keep telling me how unlucky I am!! I suppose the hardest bit is waiting as I am ready to fight this now just like I did with the AA. Look forward to continuing reading peoples thoughts, anyway best get off to the doctors now. Blood transfussion this afternoon!!

Amy
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