Hi, thank you for your reply yesterday and just wondering how you and your daughter are doing.
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Thank you @SarahMum for taking the time to message and share your experience.
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No worries. I am being honest, it is not easy but I am sure you know that already 
. If u need anything just shout.
Take good care xx
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Just wanted to add a link here for @Angelic13, @Tee70 and others with vested interests in Acute myeloid leukaemia ('AML') to the incredible thread dear @SarahMum mentioned above as it is really heartening to know how Danae managed: Acute myeloid leukaemia
I hope you are both still doing well @SarahMum, lovely to still have your support here! Always a balm. Just a slight aside but have you considered becoming a forum support volunteer?
Thank you Nurse @Heidi_BloodCancerUK for all these great links and resources, itās always a treat to see your comments supporting us around the forum!
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Hi @Angelic13 we are getting there. Itās been an extremely hard few months and I donāt think I have even touched the surface of dealing with it all. My daughter was diagnosed back in April this year. Since then we have been here at The Marsden. She is 24 so has been lucky to get a bed on the teenager and young adults ward.
Itās a lovely unit with homely touches and fabulous nurses.The care she has received has been outstanding.
Unfortunately for us her leukaemia is refractory, so after one round of standard chemo then a round of Flag Ida, both of which didnāt get her into remission, she is now on a trial.
I just try and stay as positive as possible and take each day as it comes.
How are you feeling today? How is your son?
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Hi, itās been a whirlwind. Ben is 23 and complained of jaw pain so sent him to dentist, found nothing and within a day had such bad back ache took him to A &E and he was admitted the same day. For 3 weeks kept saying it was Lymphoma but then after the bone marrow biopsy diagnosed Acute myeloid leukaemia ('AML') and moved him from Lincoln to Nottingham City. I stay with him 24/7 as his dad and I are self employed so closed out business. He has just finished the first round of Flag Ida chemo with Ventaclax chemo tablet and it was rough but he is feeling slightly better now but the cancer is pushing on nerves in his spine and he cannot walk or stand up and has double vision. We are expecting another round of chemo when his bloods recover enough and then we will see what happens. Itās scary and seems unreal at times how quickly you get used to tablets, drips and blood and platelet transfusions. I really want him moved back to Lincoln as, I feel the day to day care was better. He had a PETScan today so those results will help us understand the direction the Cancer is going.
Helen Green
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My daughter was diagnosed in A&E also. Itās so traumatic isnāt it. I too havenāt left her side, sleeping in hospital, waiting each day for her bloods to come back, studying the results for any small signs of recovery. Countless infusions and antibiotics (sheās had quite a few infections) itās a world I never thought about, let alone live.
I just want you to know I get exactly how you are feeling and you are not alone. I wasnāt sure about joining this forum but Iām so glad I did, as in just a short while people have gone out of their way to offer helpful advice and support.
Hopefully you donāt have to wait long for the scan results and they show the treatment is working. 
I will be thinking of you.
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Hi @Angelic13
It sounds like your daughter is having a tough time and it must be incredibly difficult for you all.
Obviously everyone is different. That said, Iām sharing this to give some hope.
I was diagnosed with Myelofibrosis almost 3 years ago. Within 3 months it progressed to Acute myeloid leukaemia ('AML').
Admitted for Flag-ida which you will know is brutal. It didnāt move the dial.
Then put on maintenance chemotherapy Azacitidine and Venetoclax. It took several cycles but eventually it got my blasts to a point (not remission) where they were willing to give a Stem Cell Transplant a try. Itās now or never was what the Consultant at the Transplant Centre said.
Transplant April 2025. 18 months on doing well. Told cancer in remission a couple of weeks ago and hoping for a long term cure in 2 to 5 years post transplant.
I know that every blood cancer patient is different. The challenges arenāt just physical but mental too.
Take one day at a time is very much how Iāve dealt with it.
Do take care of yourself and best wishes to your daughter.
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Thank you @Duncan for sharing your story. Itās always good to hear positive outcomes.
Do you mind saying what your blasts were at transplant that your consultant was happy with?
@Angelic13 how are you and your son doing?
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Hi @Tee70
I think you were asking me rather than @Duncan about blasts that made the Consultant decide to go ahead with Transplant.
As my primary diagnosis was Myelofibrosis itās difficult to get accurate readings due to scarring.
The liquid sample (aspirate) was showing blasts at 3% while the trephine (bone and marrow) sample was 8% blasts so they decided that average of both was close enough to the 5% or below they wanted.
Hope that helps 
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Oh sorry, yes I did mean you.
Thank you for that information, we are hoping that my daughter can get to below 5% on her current treatment to bridge to transplant.
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Hi, itās been a good few days. Ben had the results of the PETScan and the cancer is reduced and the Flag Ida is working well. We also found out that his brother is a full match for the Bone Marrow transplant. Ben not too good in himself as keeps getting temperatures and they need to find out what is causing it. We are staying in Nottingham City as was originally transferring back to Lincoln but want to keep him here due to his unusual presentation of Acute myeloid leukaemia ('AML') and complications. Thank you for asking.
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Glad to hear things are working and you have some good news.
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It was great to read your good news. I hope Ben starts to feel a little better soon. Take good care of yourself as well x
Hi RubyRose here.
Diagnosed with Essential Thrombocythaemia ('ET') ten years ago - doing very well on hydroxycarbamide. Just wanted to say hello to everyone and be a part of this forum
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Hello 
I am Nicola, iām 44 from Glasgow and have just been diagnosed a few days ago with Polycythaemia Vera (Polycythaemia vera ('PV')). I live with my partner, 2 grown up children and our 2 cocker spaniels.
The investigation into what was wrong with me started November 2025 when I was out shopping and my full left hand-side went weak then lost all feeling and collapsed. My speech was slurred and my face drooped, all left hand-side. I was rushed to hospital with a suspected stroke. The scans didnāt show evidence that a stroke had taken place, however the stroke consultant thought that as a chronic migraine sufferer, my symptoms might have changed due to age related hormonal changes. As well as the collapse, I had been suffering dizzy spells, terrible itching on hands and feet, red spots,fatigue, night sweats, all of which i put down to my age and perimenopause.
He continued to see me at the stroke clinic to try and get a treatment plan in place for the migraines (as i also suffer neurological migraine symptoms). It was about 3-4 weeks ago he referred me to Haematology as he had noticed that my platelets and haemoglobin had been raised and increasing as the months went on. Had an appointment shortly after with the haematologist who took blood samples and asked me about symptoms. I was called to go in last Wednesday and was told that I have JAK2 + Polycythaemia vera ('PV'). 2 days later I had to go in for my first venesection, and need to go in weekly at the moment for them. I am also on Aspirin now. He also mentioned medication may be a possibility.
Its all been a bit overwhelming as it was so unexpected, plus I hadnāt even heard of Polycythaemia vera ('PV') until very recently, however that being said, after almost a year of these symptoms it is a bit of a relief to know the cause and start treatment.
Look forward to reading everyoneās posts and getting to chat with others on here.
Nix xx
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Hi @RubyRose68 welcome, so glad to hear youāre doing well, we love a good news story here xx
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Hi @Nixter the early days are a whirlwind, it will settle. Wishing you all the best with treatment. Keeping everything crossed for you xx
Hi @Nixter Nicola from another forum member in Scotland.
I grew up in Lanarkshire and have lived in the Scottish Highlands for last 4 years after living most of my adult working life in Brighton and Hove.
Iām sorry to read about your JAK2 and Polycythaemia vera ('PV') diagnosis. Itās always a shock and a lot to deal with.
I went along for a routine GP appointment almost 3 years ago to the day and learned shortly afterwards that I had another Myeloproliferative neoplasms ('MPN') called Myelofibrosis.
After several rounds of chemotherapy some successful and others not I got to a point where a Stem Cell Transplant was offered.
Transplant was at the Queen Elizabeth University Hospital in Glasgow April 2025. 9 week inpatient stay and the whole team were fantastic. 18 months on Iām doing well and considered to be in remission.
I learned very quickly after diagnosis to focus on what I could influence and let go of what I couldnāt control.
The local Haematology Team at Raigmore Hospital have been brilliant from Day 1.
Iām hoping your care will be good too.
Take care