Adult ALL UKALL14 Trial

FormerMember
FormerMember
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Hi there,

Just thought i would introduce myself to those i havent already spoken too.

On 5th Oct 2012 my mum was diagnosed with ALL after being poorly for a few weeks. Looking back she had been lethargic for a while but we always put it down to age and her caring for my niece 4 days a week. She went into A and E the week before diagnosis with chest pains thinking she was having a heart attack and also lots of bruising over her body. A week later she was diagnosed and our world changed.....

My mum is by herself so i moved back home to live with her leaving a very understanding partner at home. My sister who has a family took on a lot of the day time care whilst i worked 3 days a week. Anyone else on the UKALL14 trial will know the protocol is extremely intense and in the stage 2 we were travelling to the hopsital 6 days a week for chemo...

Due to age being a high risk factor in ALL mum met the with the Bone Marrow Transplant Team and they set the wheels in motion for looking for a donor... (initial assessment was in January) They had one donor lined up but lost him and a 2nd donor was found. Mum was admitted on 8th May and had her transplant on 15th May 2013.

Transplant itself wasnt too bad and actually some of the infections she had when going through chemo were much worse as she had 2 nasty cases of e - coli. With the transplant what has been hard is the recovery as it takes time and comes with side affects..

She is currently being treated for GVHD and will hopefully be recieving photopheresis treatment to help sort that out as she has it on her skin and gut. Most the time it has been treated with steroids and creams but she had a nasty bout of it last week which is why they are looking at other treatment...

I wanted to share my story as when i was looking for ALL stories there wasnt much on the internet so i am overjoyed to see this group especially for ALL patients and families. For those who have just been diagnosed it is a long treatment ..more so than most cancers but it is curable. My mum is slowly getting her life back together and it has been a tough 14 months but it has brought our family incredibly close.

Helen xxxxxxxxxxx

  • Hi my story is almost identical. I am 44 and was diagnosed last September.

    Treated at Barts. Also on the same trial. Had stem cell transplant in May. 13 months in remission now. Some skin and gut GVHD which seems to be easing but may need some UV light treatment in Jan at the royal Lindon hospital.

    Back to work on Monday and have restarted at the gym.. It's been tough with many other side illnesses including pancreatitis, BK virus, septicaemia, and glandular fever!

    You just have to fight one day at a time sometimes... But I am through it and life is good :-)

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • FormerMember
    FormerMember in reply to Paul1969

    Hi Paul 

    Your right your story is very similar to my mums.... even down to the transplant month! 

    Its great that your doing so well and getting back to the gyn and work :)

    We are waiting on confirmation that mum is getting the UV light treatment but hoping she will do as she is suffering from GVHD too.

    Wow you have gone through it with infections haven't you... and now your immune system will be learning to fight these and you will be getting stronger by the day :)

    Your right and its great to see you here and enjoying life and sharing your story :) 

    Helen x

  • FormerMember
    FormerMember

    Hi Helen. May I ask your Mothers age? I’m seeing stories on here but most that I’ve read the pt has Ben 50 yrs or younger my father n law has recently been diagnosed with ALL. He is  74. Dr says he’s too weak health wise to do stem cell transplant. So he will begin this week taking a chemo pill, and alternate it with regular chemo for two months. We are just trying to prepare for what’s ahead. His white count is extremely low. His dr likes it around a 6 and it’s been about a .7/.8

  • Hi

    hasn't been active on the forum for a few years so I don't know if you will get a response from her. How is your father in law getting on?

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.