My mother has had (Myelodysplastic syndrome (Myelodysplastic syndrome (MDS)) for over 4 years and has been on chemo tablets amd injections past few months. This week she became very ill with very low haemoglobin (49), low platelets and her heart rate dropped to 34. My mum was taken to A&E admitted and had a transfusion. Her blood results today confirm ALS and she needs another transfusion in a couple of days. We been told to expect a few months and palliative nurses involved for when she goes home next week. For those who have experienced this with family at my mums age, are we to expect the worse a lot quicker. My hear is breaking and I don’t know what to do as I live almost 100 miles away. Should I go home now!
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Hello @Kay27,
Thank you for your post and welcome to our forum.
We are so sorry to hear about your mother’s diagnosis.
We can imagine this is a difficult time for all of your family.
If you would like to talk things through with a member of our support service team, please get in touch on 0808 2080 888.
Could we please check if you perhaps mean Acute myeloid leukaemia (AML)? There are lots of abbreviations in haematology, so just want to check so we can help with advice.
It might be helpful to discuss your concerns with the palliative team as well as her clinical nurse specialist/s as prognosis can depend on a variety of factors, which the team may be able to help advise on.
I have pinned your post so that others will be able to share their experiences too.
Our Looking after yourself when someone you love has blood cancer | Blood Cancer UK page may be helpful to read over.
Take care,
Emma (Support Services Nurse)
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Emma thank you so much. It is acute myloid lukemia yes. My mam sounds more exhausted day by day. She has bursts on her skin. I will ring the number as really struggling knowing we,are losing her
Kind regards
Kay
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Oh, @Kay27 yes, that sounds a really good idea to ring the Blood Cancer UK support line on 0808 2080 888.
Also I hope you will feel that our forum is a safe space for you to be able to share how it really is for you.
Be ever so kind to yourself and look after yourself
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Hello @Kay27
Thank you for your reply.
We are so sorry to hear this. Please do keep your mum’s treatment team updated with how you and she are both feeling as they will aim to help as best they can.
As Erica has kindly mentioned, if you would like to talk through this with a member of our support services nurses, do not hesitate to get in touch on 0808 2080 888. We are open until 4pm today.
Take care & warm wishes,
Emma (support services nurse)
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Hi
My mam is still with us despite being given 2 months last August. My mam has until recently been given blood transfusion fortnighly, however she became generally unwell and mised a few weeks deciding not to attend any further appointments. Now being nursed in bed in her living room, taking oxycodone daily and also prescribed pain patches. Mam is basically living on 1 piece of jam on toast, Aymes protein drinks and very little else. We are all amazed at how her spirits remain high andworry about what actually going on inside. If anyone has been in a similar situation, I would like to hear from you. Regards Kqy