to ask, during blood cancer awareness month. if people know the symptoms?

[iVampire]

Without googling?

Because there are many forms of leukaemias, lymphomas and myelomas, so individually they are each rare cancers. But together, they are in the top 5 commonest, and leukaemia is one of the commonest cancers in children,

September is Blood Cancer Awareness Month, and yesterday was World Chronic Myeloid Leukaemia Day. Those events have been much on my mind,

And just led me to wonder - do you know the symptoms?

CurlyhairedAssassin sorry to hear you and your mum are going through this. My family member was in hospital for 7 months solid and is in their 50s. They're now back at work full time and life is pretty much normal albeit with daily medication.

Mono so sorry to hear about your DD.

Weight loss, fatigue, cough, back pain and night sweats combined are red flags. Not individually of course.

Sadly I do now now the symptoms of Non Hodgkin Lymphoma. It’s just a shame that the Doctors at the hospital didn’t as they completely missed it with my DF until it was too late.

*now know

I work with leukaemia. Common symptoms people would describe are: Extreme fatigue. Unexplained bruising or petechia (not I whacked my arm and have a bruise but "where the heck did this bruise come from??"). Suddenly prolonged nose/gum bleeding. Nightsweats. Recurrent infections.

Like @MyNameIsArthur my DH has been diagnosed with MDS. It was only found through a routine blood test. Even now he feels fine and has no symptoms but we have been told he will need a stem cell transplant.

@Kool4katz a couple of months?! He wants to wait and see after having had it already?! I'm stunned. I hope he gives in..

@AGHHHH I know! He hates going to hospital/doctors so always delays things. He also won’t let me attend appts. with him so during his last series of chemo, I dropped him outside the hospital and collected him when he rang. I only get filtered information so I’ve given up worrying because there’s no point. On the the positive side (!), he’s the opposite of man flu man, as he has extraordinary will power to keep going. A couple of years ago before the cancer was diagnosed, he had double pneumonia and was still staggering into work each day. Finally, he accepted he was quite ill (flu type symptoms plus night sweats) and let me drive him to the GP. A few minutes later the GP came out to the waiting room and said he’d rung the hospital and they’re expecting him and I had to drive him straight there, not go home first. That was quite shocking. He is a nightmare but he’s also an adult so I have to accept it’s his choice.

Great post to raise awareness. I do now - sadly because a good friend and former colleague of mine has been diagnosed with non-Hodgkins and she’s only 27. Life is fucking unfair. to everyone who’s been affected by blood cancer.

@WipsGlitter I am sorry to hear about your husband. What a huge worry for you. Keep me posted as to how he is doing. How old is he? When I had MDS, I was bleeding everywhere and struggled to even walk up the stairs. Now my symptoms are gone and I am doing 5 mile walks since I had my stem cell transplant. The transplant was tough going but has saved my life. If you are on Facebook, there are some groups on there worth joining:

Bone Marrow & Stem Cell Transplant Patient Support

UK Bone Marrow & Stem Cell Transplant Patient Support

Fight Myelodysplastic Syndrome

Am glad your husband is feeling fine. Has he had a bone marrow biopsy?

He @MyNameIsArthur has had three biopsies now! It's been a bit of saga getting a diagnosis - we are with Kings in London now. He is totally fine, still working, still doing everything as normal literally he is bit tired but that's it! He is 55. I'd love to keep in touch as we are a bit bewildered by everything.

@WipsGlitter How did he get on with the biopsies? I requested sedation after my first experience! I had a biopsy at Kings. It was very busy there! I was diagnosed with MDS pretty quickly but the cytogenetics took time. What type of MDS has he been diagnosed with? Does he have regular blood counts now? Of course you can keep in touch. I remember how bewildering it was! Just pm me if you want to ask me anything.

Lots of love to those with blood cancer, or with a loved one affected. I work for a blood cancer charity, and am so pleased to see this thread. Yes the symptoms are vague and raising anxieties is not good, but researchers estimate 1 in 19 of us will develop a blood cancer in our lifetime, so awareness needs to be raised.

bloodwise.org.uk/info-support/blood-cancer/symptoms

bloodwise.org.uk/info-support

[email protected]

xxxxxxx

Individually, each blood cancer is rare, but as pp pointed out, when you combine them all it’s really quite frequent. As all too many contributors to this thread have found out the hard way

The symptoms could also mean so many other things. But HCPs in particular need to know that blood cancer is something to consider, and order a full blood count alongside other initial investigations.

I wasn’t really symptomatic - hot flushes, yes but I was also menopausal, bruising a lot but mainly in the course of a fairly vigorous sport, breathlessness when running I put down to heat and hay fever.

I saw the doctor for something completely different. I went from blood test icw that to starting chemotherapy in 48 hours. Which all sounds rather dramatic but I’m one of the lucky ones - CML isn’t curable, but it can be functionally suppressed by a targeted drug that really isn’t too hostile for many people. As it was picked up pretty early on, my outlook is quite optimistic.

My mum has non-hodgkins follicular lymphoma. It's an indolent form but at this current time not curative.

She's touches wood in remission and has been for a while. We know it will be back, it's a case of when not if.
It was found incidentally.

And I've always been super paranoid it. Every cold and bruise my children get etc. Even before my mum's diagnosis.

I posted about my mum earlier. Diagnosed with acute leukaemia in August and in hospital ever since. Until yesterday!!! We had the totally unexpected and fantastic news that she is responding so well to the induction treatment that she doesn’t even have to stay in hospital as long as initially thought. She can complete her treatment as an outpatient if her next blood and bone marrow results are as good as they have been up to now. This is such a good sign for things to come. I don’t want to tempt fate but I just wanted to update with some good news.

for everyone who is ill or lost someone or worrying about someone with blood cancer.

#NoSleepTil2030 thanks for posting about the good outcome for your family member. That and my mum’s latest blood results certainly gives me hope that there might be the small chance of a happy ending for my mum!

Whoops I meant @ not #!

@NoSleepTil2030

My friend has just completed 6 months of chemo for non-Hodgkin lymphoma.

I knew little about the symptoms, but his were:

tiredness
night sweats
fever
breathlessness/increased heart rate on minor exertion

All of which were dismissed as a virus for several weeks.

My mum had leukaemia (AML).

Her first symptoms (on reflection) were achy hips and tiredness.

She ignored those, putting it down to getting older and working more hours as the kids got older. Then the unexplained bruising, bleeding gums and mouth ulcers got to a point where she could no longer ignore it.

She went to the walk in centre and within 3 hours she was receiving treatment at a blood cancer specialist hospital an hour away from home. Over the next 2 years she spent huge amounts of time in hospital, she received a stem cell transplant and was in remission. Then a couple of months later it came back hard and fast. Unfortunately she passed away.

It was a fucking nasty disease with horrible, gruelling treatment. She was the strongest and bravest person I'll ever know because I'm not sure I could have gone through all of that and remained so strong

No problem @CurlyhairedAssasin. I hope yoir mum has a good outlook too. It sounds like she's doing really well - induction chemo did nothing for my family member, hence them having a transplant (Not transfusion as I said above, oops.) The treatment itself can be really brutal so for you and your family.

@ems137 sorry to hear about your mum. I agree the treatment is absolutely brutal.

Can I ask you all to support this please.

And to everyone effected.

m.facebook.com/groups/2056035137969218

He is a 4 year old who is being refused treatment on the nhs. Basically they are saying wait till he relapses but they relapse will probably kill him.
Trying to raise £500k to get him to America for treatment.
Please please help

I’ll keep bumping this just in the last couple of days of the Awareness Month.

It’s been quite something to read the posts on this thread

Not a blood cancer but my neutropenia was missed for 8 YEARS. I spent so much time unwell that I nearly lost my job though sickness
Normal neutrophil count is 2-8 or so, mine was 0.3. A locum GP spotted it after I went in about night sweats, noticed I had over 50 blood tests done and went through every one and sent me to haematology as an emergency
I was diagnosed with autoimmune neutropenia where I kill off my own neutrophils and I visit haematology every 12 weeks and inject myself with G-CSF once a week. I’m treated under the Macmillan unit and they’re fantastic