Just wanting to ask others to share their symptoms pre/post diagnosis is absolutely fine - I feel it may help those who come looking and wanting to hear personal stories - like myself.
I am new to all of this and google really doesn’t give personal symptom stories any credit and thus they can be hard to find.
My current symptoms are (as I am on the journey to getting a diagnosis):
Fast heart rate
Swollen gland (just the one)
Hi @fireofthephoenix I was diagnosed through routine gynaecology blood tests, but I had fatigue and just felt rotten.
I was admitted to A&E with a gall bladder infection 2 weeks on the trot. Found to be very anaemic and after a colonoscopy and an endoscopy which were both clear my bloods were sent to haematology where myeloma was picked up.
When I look back I was always tired had pains in my legs but mainly tummy pain (gall bladder)
I also thought I might be menopausal
I also had a bit of lower back pain
Hello @fireofthephoenix. It is an interesting topic you have raised. Thank you. My symptoms were weight loss, fatigue, severe headaches, bone pain, night sweats and frequent infections. I also had strange tingling sensations in my fingers. My platelets were extremely high at diagnosis and this was thought to be the explanation for the tingling. It improved once my platelets were lowered. Very warm wishes to you. Willow
Great post @fireofthephoenix
I’ve been anaemic for as long as I can remember. I then found blood in my urine so had an endoscopy and colonoscopy all came out clear and very similar to @2DB was refered to haematology and was then diagnosed to have Polycythemia Vera which I had never heard of but then looking up the symptoms I must have had this for years but it was my anaemia that was keeping it undetected so I never once blame any medical professionals for not spotting it sooner. I’d clearly been self managing it without knowing. Someone upstairs was definitely looking out for me… and still is I hope
I hope you find out what’s causing your symptoms soon, and that it is something easily treatable. You must be really worried.
It’s a great idea to list the symptoms people have experienced - that’ll be so useful to others.
I was diagnosed with acute myeloid leukaemia, and my symptoms were (in the order of how noticeable they were to me:)
A racing heart
A pounding noise/sensation in my ears
Breakthrough menstrual bleeding
Purple spots on my skin
A slow to heal cut
I thought some symptoms were related to the menopause, and others to covid (that I hadn’t actually had.) The symptoms appeared individually and came and went over quite a long period of time - 6 months? - so it was hard to put them all together to see they were related. The first 5 symptoms got more severe in the time before disgnosis.
I had actually been pretty tired for a few years, but I had put this down to being a busy, middle aged working mum. But it turned out that I had Myelodysplastic syndrome (MDS) for quite some time, before it worsened and became acute myeloid leukaemia, so I imagine that’s why I was exhausted.
I hope that helps someone.
Please let us know how you get on. Thinking of you.
Good Moring @fireofthephoenix,
Thank you so much for raising this topic- it is such an important & valuable one. You rightly mentioned Google and how unreliable and frightening the information can be when people are looking for answers to their own symptoms.
Finding shared experiences can be such a valuable tool when you are dealing with your own worries.
May i ask, are you feeling supported by your GP in regards to the investigations of your symptoms?
In case it is useful in any way we have a webpage which talks through both signs & symptoms and what tests should be carried out to help understand what is causing these- Blood cancer tests | Blood Cancer UK
Please do know that if you wish to talk anything through, our helpline is very much here for you at any point- Blood cancer information and support by phone and email | Blood Cancer UK
Best Wishes, Lauran
Hi @fireofthephoenix and all.
My symptoms came after diagnosis.
Sorry to mislead with my earlier response
Lymph gland swollen
Infections - UTI’s and dental
Slow to heal
Itchyness was my first sign of worry
Especially my legs
Anaemia was that bad i collapsed at home just as i was getting diagnosed
All our bodies are different…we will all get different reaction due to our immune systems etc.
Tiredness is the one everyone can sign up to.
I wish you all the best and hope you start feeling a bit better soon
Thank you for your reply and those are some great resources!
I do and don’t feel supported really, I feel like I had to really push to get my symptoms listened to at first which wasn’t easy but I’m hoping now they take me more seriously.
I like many with blood cancer had no idea and certainly never suspected I had cancer.
I had had indigestion on and off for around two years.
My diagnosis was classed as an incidental diagnosis! I had an 12/8 cm abdominal mass. I was diagnosed with follicular lymphoma.
Looking back I had lost some weight about 1stone and a half and I was very tired but I had some gynae issues and a thyroid issue and I put everything down to them.
I had experienced some terrible itching and rashes and had asked my gp about lymphoma but was dismissed! My main complaint was the indigestion.
Five years later after treatment I’m pleased to say my lymphoma is stable and long will it remain as such . Thank you to our wonderful NHS.
Hi @fireofthephoenix ,
I hope you are doing okay today?
Do let us know how you get on with further GP talks and if you need any support in accessing the next steps with being investigated, please don’t hesitate to contact us - Blood cancer information and support by phone and email | Blood Cancer UK.
Take Care, Lauran
Too many kinds of blood cancers to say for sure but the one I have is very rare and manifested originally like eczema and was treated as such but it didn’t respond to topical steroids even the strongest like Dermovate so they then decided it was psoriasis (which is how I know that doctors can’t tell the difference between eczema and psoriasis just by looking despite reports otherwise!). However at the onset of tumours it was finally discovered that it was Mycosis Fungoides a rare T Cell Lymphoma.I don’t get sweats,well not yet at least!, but the lymph nodes are always swollen from either infection in the damaged skin or reactions to the Mycosis Fungoides cells in the body…most likely both I expect?
Hi there, good question! I didn’t really have many of the “classic” symptoms except tiredness. I was exhausted, struggled to climb steps on my route to work, felt increasingly sick and had no energy. I had a bad mouth ulcer that wouldn’t heal and developed a small spontaneous bruise just before I was diagnosed. Had no idea it was blood cancer but luckily my GP did a routine blood test which revealed all my blood counts were very low. A bone marrow test revealed I had Acute Myeloid Leukaemia. Hope you get your answers soon.
There are so many different blood cancers and people often have co-morbidities. Some of the symptoms may be of their particular blood cancer, some of more than one blood cancer while some will be indicative of their co-morbidities Things like night sweats can be a symptom of many health problems.
unexplained night sweats since 2006. towel
next to pillow. low ferritin in blood but little else to remark upon. gp said it was ‘anxiety’ (which really annoyed as i knew it wasn’t). haematologist gave up and shrugged. said it might be mgus as paraprotein elevated. night sweats eventually became constant. sleep one hour, wake up in a swimming pool, grab towel, turn pillows, find dry bit of bed, back to sleep, rewind repeat. finally got to go for bone marrow biopsy which showed abnormal lymphocytes. Chronic lymphocytic leukaemia (CLL) diagnosis followed. being monitored every six months. still playing lots of sport and tons of energy. but still low ferritin. iron infusions did nothing. iron supplements did nothing.
latest bloods fine….apart from ferritin.
science will consign this disease to history ere long. keep living everyone
Much too easy for me. Had noticed backs of hands had gone a slightly different bluey colour, but thought nothing of it. Then had violent attack of vertigo, falling over and vomiting. GP was pretty sure it was an inner ear infection, but took blood test to be on the safe side. Platelets were in the millions, had appointment with haematology within a fortnight and the new CALR blood test said Essential Thrombocythemia. Discussed treatment with consultant, agreed on hydroxycarbamide and would still be living happily on it after a decade if my prostate hadn’t decided to go rogue.