Hi
My daughter was diagnosed with Chronic myeloid leukaemia last Friday. She is 22. She goes back ti the hematologist next week to begin medication.
I’m still taking it all in. So far she has taken it in her stride but I’m worried about how she will react to medication, if the first line medication will work and the effect on her mental health from any side effects.
Grateful for any advice.
Thanks x
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Oh @Scaredmum I am so glad that you have found us.
It must be so difficult as a mother to have your daughter diagnosed with Chronic myeloid leukaemia
Personally I reckon it will take you long time to take it all in and then comes the fears about the future. Perhaps your feelings will be exacerbated by your maternal instincts as well.
Everything you say makes so much sense.
Just give yourselves time, perhaps you will both deal with things in different ways, there is no right or wrong.
I find this forum is a place where I can say what it really like being me.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
I hope others will be able to share their experiences.
Perhaps just try and take it a day at a time, be ever so kind to yourselves and we are there for you.
Please do keep posting, I look forward to hearing more about you.
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Thank you. It’s journey we are forced to embark on but Im glad that support is out there x
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So true @Scaredmum one patient nearly always brings others on the journey with them, I found that none of us knew what to do, say or how to be, but the advantage of the support on our forum is we really can support you from our experiences, there is no manual.
I found communication and listening really helped xx
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Hi,
I’m 35 and 8 weeks into treatment for Chronic myeloid leukaemia. I’ve responded very well to so far, no side effects at this stage. My white blood cell count has come down dramatically from 410, now to 6.8 with fluctuations some weeks up to 10/13 - but I’m told this is to be expected as the bone marrow shakes out the cancer cells. My HB on diagnosis was very low at 48, now it’s back up to 130 - plenty of iron rich foods with orange juice chasers*. As well as I have 2 very young children that inevitably bring bugs home so white blood cell count relative to that
It’s terrifying, more so initially, I know my parents and family feel/ felt it too. So I really feel for you all. As people told me in my initial days, the shock/ haze begins to lift as you start to engage in treatment and develop confidence in it.
Sending much love x
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To add I’m on Imatinib which I take every morning, with my breakfast. I just drink so much water in the day to flush everything through.
I noticed I also went through the grief cycle, so expect anger/disbelief and shock- acceptance is now more tolerable for me.
We were open with the info we had about my diagnosis - this helped as I took control of the narrative as I found it exhausting responding to same questions.
See if she can be put on a local waiting list through cancer services for counseling - I’ve been on the waiting list for a couple of months and due to start in January. As a therapist myself I know this will be invaluable to help me piece the trauma/ active feelings of a life changing diagnosis.
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Thank you. It helps knowing that others are also on this journey. I am hopeful that she will be offered counseling fron the tennage and young adults service.
Im really happy that you are responding so well to treatment and no side effects.
Wishing you all the best and I will keep you updated x
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Hi i was diagnosed with Chronic myeloid leukaemia early August was on Imatimib for a couple of weeks then taken off because counts got to low. Put back on middle of September since then blood tests up and down but 2 weeks ago consultant said results were BRILLIANT she doesn’t want to see me now until February .
Only have had a few aches but these have greatly improved. First few weeks are probably the worst just coming to terms with everything but time is a great healer. Im 56 a lot older than your daughter so all the best to her hope she feels better soon.
Tomorrow will be a better day!!
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Thank you. Im glad youre seeing great results x
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