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hi kev i have sent a private message so let me know if you have got it, just so i know im doing things right!!!

Hi Alison,

Just checked my messages but have nothing from you. Hope your ok,

X Kev ;-0

hi kev...lets see if this works, for some reason it wont let me send private messages!

i was just saying im glad ive found someone in the same boat as me. answering your question my wbc was 350 when i had my blood tests done on that friday, no wonder they called me up to go straight in, i knew then that something was wrong. they hooked me up straight away for fluid, 10 bags in total had all sorts of tests done that night then the consultant came in sat morning to break the news to me, and my god did i scream the place down....looking back i can see why they gave me my own room before dropping the bombshell!!  i got moved to oncology two days later and the following day had my bmb.  i started straight away on hydroxeurea alloprurinol klexane and pain killers.  my wbc started to come down straight away, then slowed dow so the dose was increased then they shot down again!!  i was offered to go to see the professer yin at manchester royal infirmary to discuss the trial, i went and few days later i decided to take part, i went back the following week and went through tests and questionaires then waited to find out what the computer picked out for me.... i got dasatinib. 3 weeks into treatment now.

 am very happy with the care i have recieved so far, within 20 days of being diagnosed i had started the treatment. take 5 days out from that when i was deciding whether to go on the trial or not!!!!

i am feeling very positive about things now especially after reading stories about people like you. the first week my life flashed before my eyes.

i am due my first follow up in man next thurs so fingers crossed.

you take care and thanks again for responding.

alison.x

Hi Lisa, I just wanted to know if you were still in remission?? I went into remission last week so very early days!!! But I was just searching for some positivity and I’m so keen to know if there are long term survivors out there.

Hi RiaEliza

I had ALL back in 2012.. next month I will be 5 years post SCT and I am doing ok. My immune system is sluggish still due to some drugs I had post SCT to treat EBV but it is managed well with me giving myself immunoglobulins at home and I never seem to get ill. 

Life is very normal for me with work, social life and hobbies very much as before.

Hope that gives you a shot of positivity this morning!

Paul

Hi Paul, it does thank you!! Everything is slow with me. I signed up to a trial and the medication knocked me for 6!!! So glad to hear that everything is now normal for you, hopefully that will be me one day. 

Hi, 

I am now 18 and went through something similar to your partner. I had a bone marrow transplant after being diagnosed and it worked however came back after a while, so went through treatment again, not to mention all the other barriers i faced. My sister was my doner both times and years on and i am very happy and healthy, i see the doctors about once a year now and they are happy with me. I hope this helps even in the slightest! But as you said everyone is different and experiences different problems. 

Hi RiaEliza,

I'm in remission from AML following a transplant in November. My doctors say I'm doing really well and I have no reason to think about all the things I was afraid of before.

Hi Lisa, 

I know you wrote this post a while ago but I just wanted to know how you were doing now? I was diagnosed with AML whilst in labour in August 2017. I've been in remission since December 2017 but worry terribly. Did you have AML also?? I hope you're still doing well X X