Waiting for Stem Cell Transplant

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

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janetgreen
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Joined: 01 Aug 2011 19:11
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Re: Waiting for Stem Cell Transplant

Post by janetgreen » 21 Jun 2013 22:31

Ken has had a bad week. It started last Friday evening after a good clinic appointment where everything was good. Ken started with a really bad headache and then tingly, itchy hands.

On Sunday, he started with pains in his hips and down into his legs. They couldn't find anything on Monday so gave him some co-codamol. However, he was still in a great deal of pain and couldn't sleep (neither could I!!). We went back to the hospital last night and they gave him some stronger painkillers but these made him sick. He was slowly getting worse so we had to get the hospital to call an ambulance and he has now been admitted to try and find out what is causing the pain but also to get on top of the pain.

We were supposed to be having our first night away tomorrow but instead Ken will be in hospital :(

Keeping fingers crossed that they get it sorted quickly so that Ken gets a good nights sleep and gets home again as soon as possible.
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.
Jayne
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Joined: 16 May 2011 11:33
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Re: Waiting for Stem Cell Transplant

Post by Jayne » 22 Jun 2013 12:45

Hi Janet and Ken

Blimey, you are certainly going through the mill at the moment. At least Ken is in hospital and is in the best place to get 'fixed'.

Let's hope it is a speedy and easy fix.

Love and best wishes
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.
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 » 22 Jun 2013 13:43

Hi Janet,

Sorry to hear that Ken has had this set back but as Jayne says, he's in the best place to get to the bottom of the symptoms he has been experiencing and to treat them.

I knowing from reading your previous postings, that It's been a horrible time for you both and I really hope that things start to look up soon.

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.
chris
Posts: 624
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Waiting for Stem Cell Transplant

Post by chris » 22 Jun 2013 16:06

Hi Janet

Please give Ken my best wishes for a solution to his current problems with pain. So frustrating when the cause cannot be found and when nothing seems to be alleviating the pain. Post-stem cell-wise, it's good that all his counts were fine last week.

Such a shame that your night away has gone by the board...... but look forward to hearing some better news soon,

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

Post by janetgreen » 28 Jun 2013 22:25

I am sorry to say that the bad news just keeps coming :(

After the MRI not showing anything up. they did a lumbar puncture on Ken yesterday. He also had a Electromyogram (EMG) today and the doctors are almost sure that he has developed Guillain-Barre Syndrome.

Sorry but I don't really feel like writing out what it is so I will leave you to google it. They will be transferring him to a Neurology ward soon.

It looks like it is going to be a very long road and I am also sorry to say that I don't feel very positive at the moment.
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.
chris
Posts: 624
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Waiting for Stem Cell Transplant

Post by chris » 29 Jun 2013 12:51

Dear Janet

So sorry to hear your worrying news of Ken's current situation. Of course you don't feel very positive. You have both been through so much and it's hard to remain constantly upbeat in the face of it all - and why should you?! Accept your emotions and, if it would help, try to talk with a Macmillan Counsellor as it's sometimes difficult to share difficult thoughts with those closest - especially if they are the ones suffering.

We are all hoping for Ken's condition to improve and please pass on best wishes.

Take care, Janet

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

Post by Sarah Reakes » 30 Jun 2013 15:34

Dear Janet,

I can only echo Chris's comments to you and pass on my own good wishes to Ken to make a speedy recovery. It is so difficult for you to be able to rise above all that you are going through at the moment and it really does seem like one thing after another for you both lately. The one positive thing is that after all the uncertainty surrounding Ken's symptoms, you do now have a diagnosis and so your medical team now know what they are dealing with. I did look up the condition and it does sound serious but not hopeless albeit that recovery can be rather slow and tedious.

I endorse Chris' suggestion to you that you seek some professional emotional support because this is an incredibly hard thing for you as his wife and carer to deal with and the pressure you are under must seem relentless.

Take care of yourself and remember that you are both very much in my thoughts and prayers.

Kind Regards

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
Contact:

Re: Waiting for Stem Cell Transplant

Post by janetgreen » 04 Jul 2013 21:16

I have to say I feel a lot better than I did this time last week.

Ken has been moved to a Neurology ward and has now finished the Ig treatment. To me, he seems better than he was and not in anywhere near the same amount of pain he was.

It was nice to see him actually sat out of bed this afternoon. It is, hopefully, just the long hard slog of getting his muscles built back up.

The doctors from Haematology have been this afternoon and they seem quite happy with him.
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.
janetgreen
Posts: 35
Joined: 01 Aug 2011 19:11
Contact:

Re: Waiting for Stem Cell Transplant

Post by janetgreen » 08 Jul 2013 23:08

Hi everyone,

Just a quick update - Ken has developed pneumonia and has been moved onto Neuro Critical Care this evening.

I will try and keep you updated but, anyone out there, please say a little prayer for Ken. :(
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.
chris
Posts: 624
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Waiting for Stem Cell Transplant

Post by chris » 13 Jul 2013 22:39

Dear Janet

Sorry for not responding sooner. Am sending you my hopes and best wishes for Ken's recovery and thinking of you both.

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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