Waiting for Stem Cell Transplant

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

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Sarah Reakes
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Joined: 11 Aug 2011 17:51
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Re: Waiting for Stem Cell Transplant

Post by Sarah Reakes » 15 Jul 2013 23:40

Dear Janet,

So so sorry to hear of Ken's further health problems. Like Chris, I am sending all my best wishes for Ken to have a full and speedy recovery and that you continue to be strong for you both. I shall certainly pray for you both that things start to get better.

Take care now.

Sarah
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.
janetgreen
Posts: 35
Joined: 01 Aug 2011 19:11
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Re: Waiting for Stem Cell Transplant

Post by janetgreen » 21 Jul 2013 09:11

I am so sorry to tell everyone that Ken lost his battle against the severe pneumonia yesterday afternoon. In the end everything was failing and none of the very intensive treatments they had been giving him was making any difference.

Critical Care have done a fantastic job and they have made sure that he never suffered. He was kept sedated and went very peacefully with his family around him.

Thank you to everyone for all your messages and support.

I would like to remain on here to keep up to date with things that are happening.

Take care everyone.
Wife of Ken, 57, diagnosed with MDS (refrac cytopenia, multi-lineage dysplasia with 5q- and del of 12 and 13) in Jan 2011, was transfusion dependent. Stem cell transplant on 14th December 2012 but sadly passed away 20th July 2013. Live in Barnsley.
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
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Re: Waiting for Stem Cell Transplant

Post by janetstanford » 21 Jul 2013 19:40

Dear Janet
I am so sorry to hear your sad news ,i am pleased that the care team made sure Ken did not suffer and that he passed away with all his family around you were all able to say goodbye,you have been such a caring loving wife and support Ken to the enth degree i have been impressed at both your loyalty and positive attitude .
I for one would be so happy to still hear from you on the site keeping us both update and in touch with you ,i do hope in some small way that we have been a support and help to both you and ken in past

Heartfelt sympathy
Janet x
Sarah Reakes
Posts: 76
Joined: 11 Aug 2011 17:51
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Re: Waiting for Stem Cell Transplant

Post by Sarah Reakes » 21 Jul 2013 22:50

Dear Janet,

I am so sorry to hear that Ken has passed away and lost his battle against this awful disease. My deepest sympathy to you and your family. I have to confess that when you posted that he had developed pneumonia, it worried me greatly that this might mark the end of his fight and that his body just couldn't cope any more.

It is naturally a great comfort that the care team were able to make him comfortable throughout this latter stage of his illness and that he didn't suffer. Your support to Ken has been amazing and like Janet, I would welcome you remaining in touch on this Forum when you feel up to it. You have been through so much with Ken throughout this ordeal, and naturally you are going to have mixed feelings of relief that he is now out of pain and at peace, but then inevitably you are going to be hit by the great sense of profound loss.

My thoughts are with you at this very sad time. Please take care.

Sarah x
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.
Jayne
Posts: 194
Joined: 16 May 2011 11:33
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Re: Waiting for Stem Cell Transplant

Post by Jayne » 31 Jul 2013 20:42

Dear Janet

I am so sorry to hear about Ken passing away, it has upset me greatly. Can you believe I am struggling for words! I hate this bloody awful disease and the grip it can get on us. The scary part is that we are all so different despite being under the same diagnostic umbrella. I do feel very devastated that Ken has died, I feel very sad and upset for you too and I do send you lots of love and hugs. You've been through such an awful lot. My only advice, try to remember the good times, the healthy Ken and take comfort from your happy memories. You've been blessed to have each other.

Lots of love
Jayne x
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: 624
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Waiting for Stem Cell Transplant

Post by chris » 01 Aug 2013 15:32

Dear Janet

I have also left a message on Ken's Caringbridge site to say how sorry I am. Ken certainly had to struggle every step of the way against MDS and the stem cell treatment and, from what he and you said on his blog, the last few months had been quite uncomfortable for him. You must be at such a loss having spent so much time visiting and caring for Ken so please surround yourself with friends and family and take care of yourself now.

With sympathy

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
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