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?

Ollivander - thank goodness for that locum! And I hope you continue stable.

It’s stores like that which show why the charities involved in the awareness month believe the symptoms need to be better known, including amongst HCPs

Yes unfortunately I do as my gorgeous ds was diagnosed with AML at 16 months old. For the 6 months prior to that we were in and out of hospital with unexplained viral infections, strange rashes and bruising. He had myelodysplasia for all that time which was undiagnosed and had progressed to aggressive AML by the time we got a diagnosis. By the end he was having nightsweats and severe joint pain and couldn’t sleep. Our GP, Local hospital and major children’s hospital didn’t diagnose it for some time. It was a bone marrow aspirate test that picked it up.
Thank god he responded well to chemo and is 2 years in remission. We are also so so fortunate in that if he relapses (approx 30% chance) we have a 100% match donor in our daughter.

Today is the last day of Blood Cancer Awareness Month, and I spent some of the morning, by fluke, with one of your former colleagues @JellyBaby666 at a (spectacularly hilly) running event. He’s just left your sports admin team, and is training for an Ironman where he will be fundraising - I am training for a half marathon which I am running for that charity in a fortnight.

If there had not been the medical research which led to the roll-out of TKI inhibitors, giving me back a ‘normal’ life (90% long term survival) my prognosis would have been bleak (2-5 years, very few making it past that point). I expect I would certainly not have been running! He was in the new Tshirt and I was in the old one, which I wear because it has the slogan “Running to Beat Blood Cancer” which people probable see as —irritating— fundraising. But for me it’s literally true, getting stronger every pace

OK - some things about blood cancer are just appallingly bad luck (getting it in the first place, which type you have). But getting an early diagnosis - before the condition accelerates - can sometimes make an enormous difference.

to all those affected

Thanks for starting this thread @iVampire it's been comforting to hear from people in the same boat.

I just saw this pic on a tweet about #makebloodcancervisible

I saw this installation, but during daylight

We're just awaiting diagnosis for my DD, ( in her twenties) they think she has a crossover between MDS and AML, we'll find out on Thursday. I'm very nervous.

Fingers crossed for you @WeevilKnievel

@iVampire I am quite angry that I did not know this was last month, I've got a family member with leukemia at the moment and I'm concerned about them and doing what I can for them, so if I didn't know then who does? I know about sober October, MOvember etc but this has flown under my radar until now despite living it at the moment. I read newspapers and I use facebook, not seen a mention of it until I stumbled upon your post

Thankyou for informing me, I will do a post later (with family members permission) with the symptoms and explain that it was last month but so little publicised that I want to get the information our there even if it is a little late

For all who are battling this at the moment, for all who are supporting a loved one through it at the moment, and for all who have already battled themselves or on behalf of loved ones - these are for you

Both my mother and FIL have had myeloma. The most intense symptom was excruciating pain in the back and hip respectively.

My FIL died, diagnosed a few days before he did so. My mother is enduring chemo, at 80. She was lucky because an astute GP ordered tests and saw the raised protein. But the bone lesions took X-rays, CT scan and MRI to pin down.

Best of luck. OP. 💐

Yes unfortunately. My Dad died of non-Hodgkinson’s lymphoma - complications after a stem cell transplant. That was a low grade lymphoma where they just treat it as it affects different parts of the body started with a small lump in his shoulder and he had various treatments over 10 years and periods of nothing before the stem cell transplant. And then DH is in remission from another form of non-Hodgkinson’s lymphoma. That was caught very quickly as it was a fast growing tumour in his neck. The consultant always said that we’d know if that came back before as it was an aggressive type of cancer (which in this case made it easier to treat.)

Last year my mum was feeling very tired and having afternoon naps, which was very unlike her as she was always full of beans. Then she got a nasty chest infection and was struggling to breathe. She was admitted to hospital and diagnosed with AML a couple of days later. She started chemo within days but died 5 days later when a blood vessel ruptured internally and she bled out. The whole thing was shocking, fast and brutal. I wouldn't wish it on my worst enemy.
for all those who are fighting or have lost loved ones.

Yes I do, but only because I worked as a technician in a hospital haematology department for many years. The symptoms can be subtle and easily confused for other health issues. I didn’t know there was an awareness campaign at the moment ....

People think that myeloma is melanoma so I talk about bone marrow cancer instead to save the ‘did they get badly sun burnt?’ question. 😏

My partner had lymphoma. The symptoms that he had were extreme tiredness, anaemia, rapid weight loss, lack of appitite. Swollen lympnodes, which grew gradually. and the final symptom was swelling of the joints which we thought was a blood clot, tested faintly positive for a blood clot hence what got him to referral to hospital where we found out it was Hodgkins Lymphoma xx

The Awareness Month was September, but it’s really good that people are still talking, even though the main events are winding down.

It didn’t have a big jazzy slogan - last time they had an eye-catching one was Waistcoat Wednesday (for Bloodwise) during the World Cup. But I think most people, even SKY viewers, completely overlooked that it was a charity campaign

And one more thing to add to this thread, as the Nobel
prize results are newly announced, and the winners got medicine are cancer immunologists James P Allison and Tasuku Honjo.

They were inspired by personal experience - James Allison lost his mum to blood cancer when he was just 10.

Bumping the thread. I saw this news also. Fantastic!

Hi everyone goggling brought me here my 2 year old has not been well in months she has no energy lies on the couch most of the day pale lifeless not eating much getting infections night sweats vomited last night im getting worried its leukemia first time to say my gut feelings but i really need to get bloods done for answers now.... anyone experienced this with toddlers. Shes not in creche never leaves my side

Have you taken her to the doctors? If not, make an appointment today!

Not yet heading soon to emergency room when other kids get in from school shes walking on tiptoes too

Yes, I know I’m bumping an old thread,

It’s a year old, and that’s why I’m posting again. It’s blood cancer awareness month again.

It seems to have come round again quickly. I’m OK - I’ve had the complete response they hoped for from the targeted cancer drugs (which I take for life, and which have suppressed the disease to almost undetectable)

I’ve been wondering how all the other people mentioned on the thread are doing, and hoping for the best for them all.

And also hoping that awareness of the (admittedly very non-specific) symptoms is rising - among HCPs as well as the general population

I know this is an old thread - I posted on it back in 2018

And this morning - in this years's Blood Cancer Awareness month - I saw a tweet from Leukaemia UK saying that since 2018, the numbers of British adults who cannot name any symptoms has increased (56% from 52%)