You are here

getting back to 'normal'?

Categories:

hi there. 

nearly 8 months since diagnosis and my BCR-ABL is down from 519,950  to 0.015. i understand from my consultant that this is a fantastic response and i am MR4 (molecular response - i am slowly learning acronyms!). my iron isn't quite back to 'normal' but is slowly getting there. i went back to work today for the first day of a slow phased return - as discussed with and agreed by my consultant and my occupational health therapist. i didn't realise what a big deal it was going back - i've just been 'getting on with things'. my sister said i should be pleased that i've got myself to the position where i'm going back to work and getting 'back to normal' and another friend just said she was proud of me. 

i'm a bit overwhelmed. i don't like to blow my own trumpet - but i suddenly feel that perhaps i should be proud of where i am now.  it's still very early days - i am never complacent and am very aware that i am lucky compared to a lot of people and this stops me from 'showing off' too much - but i'd really like to hear from others how they deal with their victories.

i am tempted to have some marmalade because i really miss it !

i look forward to hearing from you. thank you. x

Congratulations, you are doing really well!  About marmalade - nobody told me not to have it when I was diagnosed, so I carried on, and still do.  My reasoning is that the cooking process changes the chemistry.  Also, I take my imatinib in the evening, and have marmalade at breakfast, so there is a good length of time between the two.  If you really miss marmalade and don't want to risk it, how about lemon or lime marmalade?  I don't have grapefruit, though, and don't miss it.

Olivia

A brilliant result. Congratulations!

I agree with Olivia about marmalade but I only eat it at weekends. No grapefruit, though, and I really miss that and no pomegranate either.  

I managed to get to 0.06% in 6 months from diagnosis which I was delighted with ( 7 years ago since diagnosed) and I remember I felt like shouting from the rooftops. PCRs do tend to bob about a bit when you get down that low and mine have always done this. My consultant calls it "Dust in the farmyard" so don't be disappointed or alarmed if they seem to go up slightly again. 

Take care and don't overdo things at work!

Best

Chrissie

Oh Grells, go on blow your trumpet .... no one else will as no one else can really understand how good it is to get those low molecular numbers - and so early. Congratulations.

Sandy

ladies

thank you so much for your words. i have read them quite a few times over the last week and they have pushed me forward. heading into work on the train for my third and final day of work for this week. i am on a phased return - 4x3 days, 4x4 days then back to full time. i feel very tired this morning but knowing i have 4 days rest is spurring me on. it's been good catching up with work friends - i have honed my cml 'story' to a brief-ish and uplifting paragraph so i don't have to manage too many shocked reactions by those who don't know where i've been. by the end of today i'll have achieved another milestone in 'getting back to normal'. yippee!!

thank you again so much. your responses mean so much. how are you all coping day to day? i'd love to know more. x

Hi Grells

Congratulations and I completely get where you are coming from.  My response was similar - even a bit more dramatic perhaps as I was "zero" in 6 months.  It was totally surreal going from the shock of diagnosis to no sign of disease so quickly, yet not knowing what might come later.  I went back to work part time - though for various reasons I started going back soon after diagnosis on an ad hoc basis and "fully" four days a week after about 6 weeks.  I had little choice at the time and actually wish I had been able to take more time out.  It is good that you have done so.  Part of me felt a bit of a fraud because I was never physically ill as such (and others - especially those diagnosed well before me - have had very different experiences) and responded so quickly.  However, none of that changes the fact that CML is a serious diagnosis, very shocking and worrying when it happens, and there are no guarantees (just lots of very good indicators). The result is that psychologically it is hard to come to terms with at first.  That's where I was.

My diagnosis was 7 1/2 years ago and I think it's fair to say I became pretty comfortable with everything after about a year. I've now been full time at work since then and my PCR has been zero ever since (a few odd, very low positives which were not real results it seems as they always went away).  Been on the DESTINY stopping trial for 2 1/2 years - all fine. 

I too feel/felt very lucky and the whole saga gave me a new (and much improved) perspective on life - something I try very hard to maintain now things seem so back to normal.  I no longer worry about CML and have got myself considerably fitter and more healthy than I was before diagnosis.  For me at least, quite a lot of good came from it actually. 

I suppose what I am trying to say is that it seems you're doing really well and things look good.  That's great news.  From my own experience, while you will never cease to be a CML patient I think you will come to live with it comfortably. 

Congrats again and good luck going forward.

Richard