Spot Leukaemia Early campaign

[kitchengardener2]

Have been updating my story for Leukaemia Care's Spot Leukaemia Early campaign, they want to feature it again this year. Hopefully they will get local and some national newspapers to take it and possibly local television news programmes.

[wellbeingwarrior]

Hi kitchengarener2,

I’ve thought a bit about this and am actually glad that when it comes to CLL I didn’t know about it any earlier than I did.

In the early stages there is nothing to do but wait, and sometimes worry. Elongating that phase out doesn’t strike me as beneficial. 🤷

What are your thoughts on catching it early?

[kitchengardener2 in reply to wellbeingwarrior]

I think knowing that it's there even though you don't need treatment answers a lot of questions. It prevents wrong medication being given as it was with me. Wrong antibiotics and live vaccines among other things. I think I probably had CLL for years before diagnosis but had three years 'official ' watch and wait. My aim with the story is to encourage people to get checked out.

[wellbeingwarrior in reply to kitchengardener2]

The year I started to feel things were more of a struggle than they should be was the year I got diagnosed at end of that year, as I’d sought medical advice for problems. Felt about the right timing to find out (to me) in hindsight. But good point regarding misdiagnosed interventions and vaccinations if you don’t know 👍

[LeoPa in reply to wellbeingwarrior]

I quite disagree. Before I got my very early stage diagnosis I thought that my immune system was invincible thanks to my dietary and training regimen. I had not even had a bout of common cold for like 7 years. When everybody was falling sick around me I stayed untouchable. Coincidentally I got diagnosed just a couple of months before the covid pandemic started. Thanks to this I remained extra cautious and have not contracted covid till this day. Had I not known what I know I would have been quite easy going about covid and surely would have already contracted it. Who knows how I would have faired but it surely would not have helped me a lot. So I consider it to be one of those small miracles in life. Call it divine intervention.

[Yalokin]

I always support the idea of ​​people getting screened/examined when they are at their healthiest.

At other times it may be too late.

Also, because doctors follow a set path, sometimes they don't put any thought into it. I support doing more extensive research than the CLL protocol requires.

On several occasions, I have refrained from publishing publications that state that between 1-4% of newly diagnosed CLL patients already have another malignant disease. In most cases, they are not detected by doctors!!! And young patients go away like that .

2-3 days ago I went to a preventive skin doctor for the first time - I was left with the impression that he heard from me about the connection between CLL and skin cancer!!!

As Winnie the Pooh said, "the more, the more".

[Aerobobcat in reply to Yalokin]

I concur with your thoughts. As someone who has another immune system condition I am frustrated with the lack of awareness and or communication between the various clinicians, this often leads to replication of investigations with the same outcomes.

[Milla15]

For me being diagnosed early and progressing through MBL to CLL has been a very useful way to get myself and my family/friends used to the situation while I'm still leading a full life and there's no need to do anything medically at the moment. Until then I can take extra care to protect myself from infection, and when treatment comes it will not be such a shock.

[CycleWonder]

I was not diagnosed when my lymph glands had swollen. The doctor at the time suggested that swollen nodes rarely meant anything serious. A few years later, I had changed doctors and my new one was suspicious of my swollen nodes and elevated white blood cell count. She ordered the smear test which confirmed her suspicion.

It would have been helpful to know earlier. I came close to dying of an oral infection prior to diagnosis. I first noticed the infection late Friday night and started on antibiotics on my own. By Monday, I was quite ill. By Tuesday, I had been admitted and doctors were drawing markers on me to track the progress towards my heart.

After that experience, my medical team reacts quickly to any infection.

I also second the idea that knowing about the CLL when Covid sauntered into town, I quickly retreated, along with our household. Getting it now would still be awful but I am much more likely to survive.

[Ptown]

Hello Kitchengardener, Thank you for sharing your story with the awareness campaign. I am sure it will help many people. I was diagnosed through a complete blood profile I had done after menopause, and there it was revealed that my white cells and lymphocytes were elevated. Once I was diagnosed just a few things needed changing. For example, my family and friends knew not to be around me when they had colds, resulting in cancelled dinner plans or weekend visits. At my elementary school, I would be very careful where I sat at after school meetings and would ask if anyone had a cold. In my classroom I disinfected all the desks everyday and washed my hands a lot. These small changes helped me avoid some colds. Knowledge is power and it is great you are helping others by gaining both knowledge and power! Take care, Carolyn