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LGL leukemia

kieran-bardill's picture
kieran-bardill
Posts: 7
Joined: Sep 2014

 

hi my name is kieran and im from england . im 19 and was diagnosed with lgl leukemia just after my 18th birthday. i had horrendose headaches and i was brought into hospital and they found i was severly anemic so much so if hadnt come into hospital i would have died . at first the doctors thought it was mylodisplasia but as its progressed they now have accuratley diagnosed it as lgl leukemia. basically my question is how do you deal with it realy beacuse my case is apparently very rare because usualy it doesnt at appear in people my age. does it get better? and realy i just want to know how other people like me cope

monda
Posts: 15
Joined: Jul 2014

Hi Kieran,

My daughter was just diagnosed with LGL T-cell Leukemia last week, is your diagnosis NK-cell or T-cell ?

kieran-bardill's picture
kieran-bardill
Posts: 7
Joined: Sep 2014

T cell

monda
Posts: 15
Joined: Jul 2014

Hi Kieran - Have they given you any medications ? my daughter just started Chemo she is taking oral Methotrexate, have they started your treatment yet and if yes what is it ?

All the best

kieran-bardill's picture
kieran-bardill
Posts: 7
Joined: Sep 2014

yeah im on methotrexate pills and injections to keep my red blood cells from dropping too low

monda
Posts: 15
Joined: Jul 2014

How is Methotrexate effecting you ...my daughter is very tired all the time and sleeps a lot - as well she has a very slight fever most of the time she is taking a 14mg dose once a week....

kieran-bardill's picture
kieran-bardill
Posts: 7
Joined: Sep 2014

im always tired and i get out of breath realy fast just walking up the stairs im out breath. when i first started takeing them i felt quite sick but thats so eased off now. also im always hot not a temperature but just realy hot 

 

monda
Posts: 15
Joined: Jul 2014

Hi Kieran

So very similar effects, how is yoru appettite have you changed your style of eating - are you focussing on certain foods that would help increase your red blood cells and strenghten your imune system ?? when is your next blood work to see if the MTX is working or not. Yes she also gets very tired quickly she is not much out of breath, you are out of breath because your red blood cell must be very low that is how the oxygen is transported to the rest of yoru body...what is your RBC ?

I hope you are able to rest a lot .....Kieran attitude is King you need to stay positive this is a treatable condition, people live a normal life with it so keep that in mind. Talk to you later.

kieran-bardill's picture
kieran-bardill
Posts: 7
Joined: Sep 2014

at the moment my red blood cells have been teetering around the 8-10 mark at the moment but when drops below 10 i just cant tolerate it.the methotrexate has started working my nutrifills have started going up, for a year they were at around the 3 mark but its slowly going up. and with the appetite i have lost alot of my appetite i dont realy eat that much at all now. 

monda
Posts: 15
Joined: Jul 2014

Hi Kieran - well not eating is serious  - in order to increase your RBC you have to eat, and eat meat produts as well - and to balance what MTX is doing to the immune system you absolutely have to eat balanced meals. how long have you been on MTX and how often do you get your blodd work done ?

kieran-bardill's picture
kieran-bardill
Posts: 7
Joined: Sep 2014

ive been on the methotrexate for about 6 months nows and have my bloods done about every 6 weeks.

i do eat meals its just i find im not realy very hungry most of the time

monda
Posts: 15
Joined: Jul 2014

is methotrexate workign for you ?

kieran-bardill's picture
kieran-bardill
Posts: 7
Joined: Sep 2014

i guess it is working because my netrafills have been going up although it has taken a very long sign to show any improvements . i was on them for about six months before we saw any real improvements.

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