Gavin - Just diagnosed

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

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Re: Gavin - Just diagnosed

Post by GAVIN1976 » 21 Jun 2013 19:45

Well transplant all went well, and been keeping really well all week. Started GCSF infections today, so see what hat brings!

Caringbridge website, is against my name: GavinHepburn
Posts: 194
Joined: 16 May 2011 11:33

Re: Gavin - Just diagnosed

Post by Jayne » 22 Jun 2013 12:24

Hi Gavin

I've just checked your caringbridge website and hope that you are still progressing well and feeling good?

Wising you all the luck in the world. Keep visualising your life as you want it to be and every day will be a step closer to your dream.

Best wishes
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.
Sarah Reakes
Posts: 76
Joined: 11 Aug 2011 17:51

Re: Gavin - Just diagnosed

Post by Sarah Reakes » 22 Jun 2013 13:53

Hi Gavin.

So pleased you've had your Transplant and so far, so good. Have noted your Caringbridge blog and will keep in touch on there. Jayne's story must be a great source of encouragement to you and will help you to remain positive - her whole approach and attitude was simply amazing throughout and quite inspirational, but I know the support she had from her family and friends helped to keep her going.

Will be thinking of you.

Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.

Re: Gavin - Just diagnosed

Post by GAVIN1976 » 27 Oct 2013 09:05

Hi, can't believe I not been on here since end of Jun after my transplant!

So just an update! mentioned transplant went well, and had very few probs, came out of hospital feeling well, and this continued, with bloods staying stable, and all looking good. Then 3 weeks ago, out of nothing, started getting real bad pains in my back, it was like I had pulled my back, every movement really hurt, then urine started turning darker and darker....I gt onto hospital who told me to come in.
To cut a long story short it turned out I was suffering fom autoimmune haemolytic anaemia....over the next days I deteriorated rapidly with numerous transfusions, but he body was just destroying all the red blood cells. At my worse my HB dropped to 3.2, at that point I don't remember a thing about it. They carried on transfusing, whilst putting me on high dose of steroids to stop the effect. Within 48 hours HB started coming back up, and I'm here to tell the tale, but very scary moments. It is just so frightening how quickly things can change. But back home resting now and hoping that was a one of episode!
Posts: 633
Joined: 01 Dec 2009 21:52
Location: Essex

Re: Gavin - Just diagnosed

Post by chris » 28 Oct 2013 11:53

Crikey, Gavin! Goes to show with these transplants that it ain't over until the fat lady sings!! Where do these things come from after so many trouble-free months? Did you get any explanations?

Glad to hear you are recovering well now. Keep it up!!

Take care

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
punda milia
Posts: 22
Joined: 01 Oct 2012 14:08

Re: Gavin - Just diagnosed

Post by punda milia » 28 Oct 2013 12:41

So sorry to hear that you had such a difficult time after a reasonably long period when things seemed to be going OK. I do hope that you continue to improve. You are certainly being very brave and are an inspiration to the rest of us on the forum who grumble about minor problems.

Look after yourself

66 year female. Diagnosed with mds 2012. In 2002 treated for Non Hodgkins Lymphoma with chlorambucil. Have enlarged macrocytes, low neutrophils & low white cells. Also have Trisomy 8 & classified Intermediate 1. Now on watch & wait
Posts: 52
Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks

Re: Gavin - Just diagnosed

Post by Russell » 28 Oct 2013 22:40

Hi Gavin,
Seems you've had a bit of a rough time. I hope things are looking up and you get an opportunity to give an update. I'm amazed at your upbeat message despite enduring a clearly horrible moment! Keep positive!
Age 55
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 Marathons
4 other Half Marathons, a 10 miler and a Spartan Race!
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