Mini stem cell transplant

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berry83
Posts: 3
Joined: 05 Sep 2013 11:41
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Mini stem cell transplant

Postby berry83 » 15 Jan 2014 14:43

Hi

does anyone know anything about these as I was given a hsct two weeks ago as an emergency procedure as had become very ill by burying my head in the sand and avoiding all treatment once told the last Ford of chemotherapy had aggregated mds and caused aml.

the doctors only kept me in for 24 hours and I haven't been given much information other than to go for check ups at least once a week. it all seems a bit strange I've tried searching for info online but can only find info regarding 100 day quarantines and that's after heavy chemo first due to risks of gvhd. what is the likely outcome for me should I be worried about gvhd and what can I tell work, I'm desperate to be able to tell them something as I neglected to mention I had mds which was why I was able to busy my head in the sand for as long as I did.

any help or info would be greatly received. thanks
chris
Posts: 576
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Mini stem cell transplant

Postby chris » 20 Jan 2014 15:12

HI there

I would strongly suggest you talk to Sophie about what has happened to you. I cannot believe you would be discharged 24 hours after a major procedure like a stem cell transplant with just weekly follow-ups. As regards your work,you cannot really tell them anything if you don't know yourself but you should certainly be taking lots of precautions against infections if you have had a stem cell transplant.

Can you ask your GP for a copy of the letter from the hospital as you could use that to inform your workplace, claim sickness benefit etc?

It really is important to get all this information as it will affect your chances of a successful recovery.

With best wishes

Chris
Chris. (F) Age 65. MDS diagnosed in 2008. Closest sub-type is CMML-1 but with anomalies! Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
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Re: Mini stem cell transplant

Postby sophie » 20 Jan 2014 16:09

berry83 wrote:Hi

does anyone know anything about these as I was given a hsct two weeks ago as an emergency procedure as had become very ill by burying my head in the sand and avoiding all treatment once told the last Ford of chemotherapy had aggregated mds and caused aml.

the doctors only kept me in for 24 hours and I haven't been given much information other than to go for check ups at least once a week. it all seems a bit strange I've tried searching for info online but can only find info regarding 100 day quarantines and that's after heavy chemo first due to risks of gvhd. what is the likely outcome for me should I be worried about gvhd and what can I tell work, I'm desperate to be able to tell them something as I neglected to mention I had mds which was why I was able to busy my head in the sand for as long as I did.

any help or info would be greatly received. thanks


Hi Berry83 - please call us or email us asap - so that we can help - and point you in the right direction for the assistance you need.
We always stress the face that this forum is NOT a place to seek clinical advice - it is extremely important you contact the right people if you need clinical advice.

Everyone - please - if any aspect of your care or treatment is unclear - always talk to us in the main office before you post anything on this forum. This forum is for support - once you are clear about your diagnosis, care and treatment options.
If you don't understand something or can't explain it clearly - it makes it more difficult for others to reply to you.
We are here to help you understand the complexities of MDS - so you can discuss them with others.
Thank you.
Berry83 - we look forward to hear from you.
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.

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