New here? Feel free to introduce yourself here 👋

Iawn Bryn AKA @kayspangles! That’s about the extent of my Welsh, unfortunately, but it’s nice to know we’re not the only Welshies here!

Really sorry to read of your diagnosis. A big warm welcome to the forum, I hope it feels as supportive and helpful for you as it has been for me since diagnosis with Polycythaemia vera (PV) last year.

Have a look around the website and check out the information relating to your specific diagnosis if you haven’t already. Looking forward to reading about how you get on. Enjoy that walking and garden of yours!

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Hi @kayspangles or Bryn a great big welcome to our forum.
I was also named after my father he was Eric Arthur.
Sorry to hear that cancer is a family trait on your fathers side.
Give yourself time to come to terms with your diagnosis and I found it took me a long time.
@Duncan has given you a great response.
The Blood Cancer UK support line is also there for you on 08082080 888 if you would like to speak to someone.
Walking is also my exercise and I love it as I am rather nosey and I am lucky enough to have some lovely walks around here.
Enjoy your garden, we have downsized to a flat so no more gardening for me!!!
Please do keep posting and be very kind to yourself.

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I am Carmen. I am 17. My 1 year old cousin has just been diagnosed with Acute myeloid leukaemia (AML) and is having chemotherapy in Great Ormand Street Hospital. I am very worried about her.

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Hi @YouAreAMiracle I am so glad that you have posted, your cousin is so lucky to have you caring about her and your name on here says it all.
You say that you are worried about your little cousin, I expect your thoughts and feelings might be all over the place and all consuming you, if you are anything like me.
Your cousin is being looked after, but who is looking after you?
Perhaps everyone deals with a diagnosis in very different ways, there is no right or wrong.
You are now part of our forum family, I have have found that this is the one place that I can really say how it is for me and I really hope you will feel the same.
The Blood Cancer Support Services are also there for you on 0808 2080 888
Please do keep posting as I really look forward to hearing more about you and your cousin.

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Thank you thanks @Erica . Diagnosis came just before Easter, everyone thought she had a cold. Not meant to tell people about it.

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Hi. If anyone could please guide me to any articles, websites, or any information on Acute myeloid leukaemia (AML) in infants. Or Chemotherapy in infants. Or if anyone has first hand experiencing in Great Ormand Street Hospital (kids hospital in London that my cousin is in) That would be really helpful because Acute myeloid leukaemia (AML) is quite rare in children and I am trying to gather all available knowledge on what my cousin has because I haven’t received much information from my parents ect.
Thanks all and best wishes,
Carmen

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Hi @YouAreAMiracle and welcome to the forum.
I’m really glad you joined our forum and are able to ask questions and get support from our members. Here is some information that may be useful: Childhood acute myeloid leukaemia (AML) - what is it, symptoms and treatment | Blood Cancer UK
Remember the support line is there for you to X

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Hi @Youareamiracle you can tell people on here in confidence and the Blood Cancer UK support line.
As I said all family deal with things in their own way and in their own time.
Really be ever so kind to yourself, it is a lot to have to comprehend on your own, we are here to support you, please do keep posting

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Hey there @YouAreAMiracle, I can’t offer any helpful advice regarding your cousin’s Acute myeloid leukaemia (AML) diagnosis or Great Ormand Street, but I just wanted to say how lovely it is that you care so much for your cousin. Just wanted to second what dear @Erica said by hoping that you have folks making sure you are also okay during this? I imagine it’s pretty stressful for all involved.

Have a search around the forum using keywords relating to your queries and you’ll likely find others who have first-hand experiences similar to you and your cousin.

Do keep posting and remember to seek support for yourself too as this can’t be any fun for you and your family.

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Thank you to @Nichola75 @Duncan @Erica !!!

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Hello, I’m new here. I got diagnosed with Acute promyelocytic leukaemia (APL) in middle of February this year. I’m currently finishing my first consolidation cycle on arsenic trioxide and atra, three more to go. I’m happy to share my experiences and looking to talk to others with Acute promyelocytic leukaemia (APL). Feel free to send me a message or whatever (I don’t know how this forum works yet). Thanks! Kuba

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Hi @kubastarzynski and a big welcome to the forum.
It’s such a great place to share experiences so I’m sure your contributions will be really valued by other forum members.
It sounds like diagnosis and treatment all happened really quickly for you. How are you doing? :blush:

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Thank you. I was an inpatient in St Barts hospital in London. Was there for 40 days, on idarubicin which was brutal. I’m an outpatient now and feeling completely normal which is great, feeling lucky in a weird way. Having a second bone marrow in two weeks time so we’ll see (first one after the induction cycle came back clear) :v:t2:

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Wow - that was a long stay and sounds like it was a tough ride. I’m glad you are feeling more like yourself now. Looking forward to learning more about you :blush:

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Hi everyone,

My name is Heather, I´m in my mid fifties and live in rural South Norfolk. I was diagnosed with Chronic myeloid leukaemia just before Christmas last year, following a routine blood test for something entirely different. Fortunately for me I was at treatable chronic stage and I started Imatinib immediately following a bone marrow biopsy. Although Christmas was hijacked by side effects, mainly bone pain, cramps, fatigue and nausea. By New Year, I´d begun to feel an improvement and to see a way through. Managed to get back to full time work (I´m self employed so that had been a big worry over Christmas) in January and I´ve been adapting steadily since then with the support of both the local hospital and local surgery. I´ve been checking into the Blood Cancer forum regularly since diagnosis and have to say that this has been such a support to me in addition to the advice of the Chronic myeloid leukaemia nurses. I felt isolated initially so the forum has been a life line. So thank you for all the work in providing the site for blood cancer patients and their families and thank you to all those who share their stories. I felt very shaky at the start of this journey, it came as a shock but I realise now that I am very fortunate compared to many others, that said I also feel heard as a new patient with real concerns trying to adapt to the situation as best I can.

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Hi, My name is John, I am 66 Y.O. I was diagnosed with low Platelets in March 2023. Following Gastroscopy and then Bone Marrow Biopsy in September 2023 I was diagnosed with Myelodysplastic syndrome (MDS). I am now having regular blood tests and appointments with Haematologist at Sheffield Hallamshire Hospital. My bloods, although low, are stable at the moment and the consultant advised there is no need to embark on an immediate allogenic stem cell transplant at the moment. I am fairly fit for my age, consider myself to be very active and walk 6 to 8 miles every day.

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Hi @Marinam a great big welcome to you feeling that you could now post on our forum.
I read your story and I was also diagnoses just before Christmas, I felt in a bubble with the world celebrating around me.
I was also diagnosed out of the blue whilst being treated for something else.
I have Chronic lymphocytic leukaemia (CLL) and that was 20 yrs ago.
I was in shock for a long time and felt very isolated.
It took me time but perhaps at medical checks realise it is a 2 way process and I find a pleasantly assertive manner helps and make sure that you ask all your questions and receive responses.
Thanks for raising the financial impact as it is often not spoken about.
I really look forward to hearing more about you.
Really look after and be very kind to yourself

Hi @Jonny welcome to our forum and I am so glad that you have posted.
Fitness and being very active sometimes seems irrelevant, blood cancers seem to know no boundaries.
I am not a medical person, but I think it helps.
It sounds as if you and on ‘watch and wait’ or ‘active monitoring’ and I believe lots of aspects are taken into account in deciding on the way forward.
I would say keep active and fit, although I am not a medical person.
I look forward to hearing more about you and please do keep posting

Many thanks Erica, your words mean a lot and I really appreciated your reply!
All the best to you and I am sure I´ll be using the forum a lot in the years to come.

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