Research project on Quality of Life - participants needed

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janetstanford
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Joined: 01 Nov 2010 17:54
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Re: Research project on Quality of Life - participants neede

Post by janetstanford » 04 Jan 2011 18:20

:? hmmm not quite the reaction i was expectng !!!!! may have to have another bi-op and i had discussed a few things with sophie and did not get to discuss these with him :cry: so i feel no further forward just confused as what to ask for / do i did speak to the nurse the following day and i am to forward my siblings details for a test to see if i have a marrow match at least that is something ??? yes sruprising it was not done earlier (2008)
all i have had is the inital treatment then watch and wait ?? and a couple of months ago another course of hormornes ... has to be something other than transfusions
but he does consider me to be low risk ...

thanks for asking take care janet
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Research project on Quality of Life - participants neede

Post by chris » 04 Jan 2011 19:58

Hi Janet

Well at least you do seem to be getting nearer an explanation and it must be comforting for you to know you are considered low-risk. Getting your siblings tissue- typed seems to be part of normal procedure when MDS is diagnosed so that they and you know quite early on what options are available should your condition deteriorate. And if you don't have a sibling match, it enables them to start a search on the bone marrow register for a suitable non-related donor. How many siblings do you have? My brother is a match for me and it was quite a relief when I found this out as it seems like a potential option if things get worse - which obviously I hope they won't!!

Take care
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
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
Contact:

Re: Research project on Quality of Life - participants neede

Post by janetstanford » 06 Jan 2011 13:55

hi chris

i have 6 ( :shock: ) 2 are half siblings so i am not asking them due to the info i have been given of the other 4 i believe 1 because of health issues would be a no no !!! so that leaves 2 female and 1 male and as you know if a match they take the male 1st because of anit-bs which are possible in females due to prenancy, so i am hoping he is the one ( last best hope) ...
i did speak to sophie again there are few things i still need to discuss with the doc, how do i put this he was not sure shall we say when i said about the quality of life quiz ect , she has suggested going to leeds ect which makes perfect sense , but i am not sure what to do,
i think my problem could be loyalty to the doc who saved my life because of his choices in life ect ect :roll:
anybody else have this problem ... and low risk yes i was pleased that he considered this
look forward to your next post take care janet
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