MY STORY AT LAST!!

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

Moderator: Steering Committee

John Watson
Posts: 11
Joined: 12 Jan 2009 10:12
Contact:

Re: MY STORY AT LAST!!

Post by John Watson » 25 Mar 2012 18:02

Hi Jayne, Janet and Chris
Thank you so much for your supportive comments. Yep the Hickman line is a weird innit Jayne, Liz says it reminds her of Startrek characters, leads to plug in!! I was given a sort of small sling affair to support the lines whils the stitches heal.
My brother will no doubt say how the GCSF is affecting him Chris! He is rather forthright with that sort of feedback!!
Seems the transplant consultant will use the drug 'Campath' after transplant to reduce graft v. host disease as it removes t cells, which will be introduced later in the engraftment process! (Got a bit heavy for me at that point!).
Thanks again team and keep on posting!
John xxx
56yrs, diagnosed 2008 MDS - RCMD, neutropenia, anaemia and platelet clotting problem (aggregation). Currently taking Aranesp EPO weekly.
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
Contact:

Re: MY STORY AT LAST!!

Post by janetstanford » 26 Mar 2012 08:15

Good morning John

engraftment yes it would have got heavy for me at that point you head must be reeling from it all trying to understand and stay calm :?
i like your wifes logic and being a fan (new generations ) i can picture the alien she may be on about :lol:
well john you have a sunny day for it so to speak and i wish you luck hope all starts well
take care Janet :)
Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

Re: MY STORY AT LAST!!

Post by Jayne » 04 Apr 2012 18:18

Hi John

Just sending you lots of positive thoughts and to let you know I think about you daily and hope your treatment is going well.

Love Jayne xx
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.
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: MY STORY AT LAST!!

Post by chris » 11 Apr 2012 11:15

Hi John

How's it going? Are you able to get onto the Internet? I hope that you are not being too incapacitated by the chemo and that any sickness etc is being managed. You must be into your third week by now? Or maybe you have gone home now to let your counts recover?

Best wishes to you and Liz.

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.
John Watson
Posts: 11
Joined: 12 Jan 2009 10:12
Contact:

Re: MY STORY AT LAST!!

Post by John Watson » 18 Apr 2012 11:50

Hi Chris (and Jayne)
All going OK thanks, chemo nausea managed very well by staff here in Exeter. Still no sign of neutrophils increasing yet (14 days post chemo) and platelets have been a problem but still have what little hair I had to start with!!
Thanks Jane for the caringbridge tip-off, I have aso set up a journal. You are all welcome to read and leave guestbook messages if you wish.
http://www.caringbridge.org/visit/johnwatson1.
Many thanks for your messages of support, Liz is doing fine thanks Chris, plenty of family support.
Best wishes,
John
56yrs, diagnosed 2008 MDS - RCMD, neutropenia, anaemia and platelet clotting problem (aggregation). Currently taking Aranesp EPO weekly.
Post Reply

Return to “Our Stories”

Who is online

Users browsing this forum: No registered users and 44 guests