Just been diagnosed with CLL

I apologise but I’m having extreme difficulty in navigating the site (mea culpa), so I hope this reaches you in an appropriate context / forum.
I contacted you recently (I’m the bloke living in Spain).Anyway, following a UTI & blood in the urine, I visited the A&E over here. The White Blood Cell count was not good (72.% Lymphocytes). Hence referral to Haemotology.
I am currently being treated for the UTI (which is proving stubborn to cure) & on antibiotics.
I was referred to the Haematologist who I saw on Thursday.
To cut a long story short I have been diagnosed as having what I now know to be CLL
(Chronic Lymphocytic Leukaemia).
He was a very chipper bloke who said ‘don’t worry be happy’ when I asked about life expectancy. He then said he regarded me as ‘Stage Zero’ with a follow-up in six months (symptoms: slightly enlarged lymph nodes to the neck, moderate & occasional night sweats, slight, occasional fatigue). He said for all he knew I could be at stage zero for thirty years so consequently no treatment is currently required.
Am I being paranoid in thinking I’ve been written-off?
Where are the main centres for this disease in the UK? Or is there no point in pursuing treatment if there is no ‘cure’?
I’m sorry to burden you.
Please put this into a general forum if you think my experience / contribution may be of use to others or that much more knowledgeable folk than I may be able to ‘put me straight’ on my concerns and anxieties.
Sorry for the length & detail and in anticipation many thanks for any words of wisdom / insights / advice.
G.

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Hi @geoff674, I have moved your post here. I also have CLL, I was diagnosed 17 yrs ago and I have been on ‘watch and wait’ or ‘active monitoring’ ever since. This means regular tests I was on 3 mthly for years and now I am 6 mthly. I felt rather abandoned when I was referred back to my GP to monitor me a couple of years back, but if anything is amiss I will be fast tracked back to the haematologist. You are certainly not being written off, although I also felt like that at the time.
I certainly do not want treatment unless I need it, many patients do. Every day new less invasive, more targeted treatments are coming along. I feel CLL is one of the better blood cancers to have.
This does mean that I have had to learn to live with similar symptoms to you.
I just watch for changes or increasing enlarged lymph nodes.
I accept that my internal thermostat is rubbish.
I make sure I get infections sorted before they take hold.
My main symptom is fatigue and that can come on after I overdo it emotionally, physically, mentally or practically. I don’t deal with what personally stresses me well, it is suddenly all too much and I am prone to tears. Sometimes I need a nap, sometimes to duvet dive or sometimes some appropriate exercise, usually in the fresh air. My fatigue can come on immediately or up to 48hrs after I have overdone it. I choose not to do evenings and it works with our lifestyle, I choose what I put my energies into.
You must feel fearful, anxious and in shock and perhaps a ‘very chipper bloke’ was not what you needed. I, my family, friends and work could not get our heads round that I had been diagnosed with leukaemia but was not going to have treatment yet, we all thought I would be treated, cured and we would all return to normal. I could not explain to work what I did not understand myself.
I came home and wrote my will and funeral music, I was in shock and felt very alone for a long while.
This disease has given me the opportunity to look at myself and decide what I want to do and with whom. Also where I want to use my energy.
My life is now better now than it has ever been and I am actually fitter now than I have ever been. However I do believe in the odd treat.
There is a lot of information on the Blood Cancer UK website on CLL and watch and wait and if you would like to speak to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk.
Be kind to yourself you have had life changing news and if you have any questions please ask, I hope I don’t sound too chipper but 17 yrs down the line I feel a very lucky girl

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I knew @Erica would be able to offer so much in her reply to you. I’m also on watch and wait, but for lymphoma and I understand just how difficult watch and wait is. It’s a hard thing to get your head around, but from reading about it I know it’s the best option for me at the moment. I just need to tell my brain that! You have to trust your team that this is the best thing for you at the moment. Take small steps. It’s so much to get your head around and it will take as much time as you need. Please take care and keep posting

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My husband was diagnosed with CLL in early 2014, following a routine blood test. He was put on “watch and wait” and seen (if I recall correctly) every 3 months. Late 2018 his consultant felt it was almost time to start treatment. As we had a big holiday planned to Oz and NZ in early 2019 she advised us to go and enjoy and start treatment upon his return. Hubby was very lucky, he was invited to join a trial hosted by a proffessor at Leeds Uni hosp (I think) . The drugs, a mix of ventoclax & Ibrutanib had to initially be administered in hospital but after a few short stays, he was all set. That was just over 2 years ago. He was officially pronounced as “in remission” earlier this year, and stopped the treatment at the end of Febuary. He now has blood tests and telephone apts every 3 months - so far so good. We do expect it to return but are hopeful that wont be for some while. If and when it does, he has been told that he can return to the trial drug. At least we know it works well for him. That’s our story so far, do ask anything you are worried about, happy to help.
Ps The only worry for him is that the covid vaccine gave him no immunity, we have been advised that T & B cells also play a part in immunity and might give him some cover.

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Hi @Hibiscos55 and I am so glad that you have found us.
Thanks for telling us you and your husbands story since diagnosis in 2014.
I think it is just as hard for the partner in such cases as they are powerless to make decisions or make it right and probably share all the fears, thoughts, emotions and practicalities and are trying to keep life running smoothly behind the scenes.
How have you and how are you dealing with it emotionally, physically and practically?

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Hi there @geoff674 - firstly, don’t panic, you’re certainly not being written off! The strange reality about CLL is that you are much more likely to die WITH it than FROM it! I have been on active monitoring for 5 years and will avoid any treatment for as long as possible (obviously in conjunction with my consultant’s advice) as the evidence shows that you will fare better long-term having treatment later, rather than earlier.
I have nodes (tumours) on my spleen and lymph nodes, fatigue and night sweats, plus nasty infections which require anti-biotics frequently, but I can honestly say that, apart from Covid putting a spanner in the works, my diagnosis hasn’t negatively affected my life at all. I have appointments at the hospital every 3 months to keep track of everything and, although my bloods always show some deterioration, it is slow and steady.
So, please try to relax and put it to the back of your mind and enjoy life!

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Well thanks for asking. Hubby has been amazing - he appears not to fret and although regularly quite tired, he has continued to take on work ( luckilly he works from home) . All was ticking over nicely - until covid, that’s when the fear kicked in. Having had both vaccines he was sooo happy - until he started reading about the probable lack of immunity. Having KICKED the CLL into remission, and since he came off the drugs, his type 2 diabetes count has rocketed to the point where the consultant thinks his pancreas has ‘given up’ - he is now awaiting a scan. We live life with caution but are not paranoid - otherwise you aren’t living any way.

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Hi @Hibiscos55 a good life philosophy there.
Let us know how the scan goes.
Please keep posting how both of you are.

@Hibiscos55 so sorry to hear you and your husband have all this going on it sounds so worrying for you. Does he have a date in for the pancreas scan so you can find out more?
You mention that you both have worries about possible lack of immunity. I hope it’s at least some reassurance that there’s a lot of research going on, to help give people with blood cancer some answers around this. There’s some info about research here (CLL specific studies under the title ‘Leukaemia and Covid Vaccine’).
Just in case it’s useful for you both, we have this page on coping with risk and uncertainty, during these uncertain and anxious times - Coping with risk and uncertainty as restrictions are lifted | Blood Cancer UK
We’re only a phone call or an email away if you ever want to talk things through with us.

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Hi @Hibiscos55. How is everything with you?

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