Welcome back!

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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Hi

Our father went into hospital just over 2 weeks ago with Covid. Very poorly on oxygen machines. Just as we seen light at the end of the tunnel an they mentioned oxygen was being reduced for his body to adapt, also for him to come home soon. He had a visit from the doctor stating he had CLL that they found in blood test. Baring in mind they have only done blood test from arms and hands an now diagnosed this.
So many questions going thru our heads as to how they have actually diagnosed this? They say it’s the very low stage an that they will prescribe medication for this but until they run more tests can’t be accurate.
We have a horrible feeling they have Mia diagnosed this due to covid and oxygen levels in blood. Can anyone gives information or experiences they have had please

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Hi @Amy and welcome to the forum! That must have been such a huge shock for you all and I understand you must have so many questions and thoughts running through your head.
Unfortunately it’s really difficult to comment on your questions regarding how it may have been diagnosed in your dads case - that’s definitely one for your medical team but this explains tests that may have been completed Chronic lymphocytic leukaemia (CLL) tests for diagnosis | Blood Cancer UK
There is also lots more information on the website https://bloodcancer.org.uk/ regarding CLL. I didn’t want to overload you but when you are ready you can visit the website and type CLL in the search bar and the information will come up.
The blood cancer support service is great and I think would be a good starting point for you. They are open tomorrow and accessible by phone or email (Blood cancer information and support by phone and email | Blood Cancer UK). It might be useful to talk to them to get some questions prepared to ask your dads medical team.
I found that the waiting was the hardest part and there is often a lot of that at the beginning of the journey, and throughout, which is so difficult for the patient, family and friends, especially when you just want answers so that you know what is going on.
I’m really glad you found the forum. There may be others with CLL who can share their experiences with you. However, even though I have a different diagnosis, and as others, do, we are all here to support you and listen when you need us.
How is your dad at the moment?
Please take care of yourself and keep us posted X

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Hi @Amy, a great big welcome and it is great that you have found us so quickly.
I bet you are all anxious and in shock with all that has gone on for you all over just 2 weeks and you also have so many questions, that is all so natural.
I cannot compete with @Nichola75’s brilliant response to you apart from saying I am now 71yrs old, I have CLL, I was diagnosed 17 yrs ago after a gynae op and subsequent blood tests. Again a complete bolt out of the blue.
I am on active monitoring (commonly called watch and wait) and have regular blood tests to monitor it’s progress.
Everyone is individual and your father has also had Covid into the mix so treatments are different.
My thoughts would be to keep honest communication between you and if your father wants perhaps write down both your fears, questions and practicalities to ask the consultant.
Do you have support of family and friends?
You now have us to support you and this forum might be the one place where you can say what it is like to be you and we will really understand.
Be kind to yourselves, you are all in shock and have the odd treat and keep posting.

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Great that you can share your experience @Erica X

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I too have just found out I have CLL although it was apparently diagnosed about a year ago although no one officially broke the news to me! If it wasn’t for me writing a long email to an oncology nurse I still would not be certain without confirmation. The nurse phoned me on my dad’s 90th birthday Friday 6th of August. Now I know I’m expected to talk to friends & family but I don’t know how to as I don’t want to be bombarded with sympathy. Feeling angry & frustrated at NHS for not informing me officially sooner & at a bit of loss in general really! I was told that early stage CLL is nothing to worry about as I could live a normal life for the next 30 years or more but then I have clearly been lied to by medical staff already before! I am doing my own research & home work on the subject, I am just glad that I have a pension scheme coming to fruition that I started back when I was 21. I don’t relish the idea of dying at 55 but if it comes early, at least I know that arrangements can be taken care of financially. Good luck with finding your honest answers & learning to live with CLL

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Hi @Steven and a big welcome to the forum. You have certainly not had the greatest of experiences which is such a shame, especially as you have lost trust in the NHS. It must have been a really difficult year for you.
Telling family and friends can be really difficult. The information on Blood Cancer Uk is really useful in supporting both yourself and in explaining the CLL to the people around you.
I completely get that you don’t want those sympathy stares and responses. I think it’s hard to know how people will react as it new ground for everybody. It may be worth talking it through with the support line? They may be able to give you some pointers?
There are lots of people on here who will be able to share their experiences with you. Feeling angry and frustrated is so normal and I think most of us would’ve experienced that at some point, if not at lots of points on our journey. Have you shared the diagnosis with anybody yet?
Please keep posting and let us know how you are getting on :blush:

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Hi Steven a great big welcome to our forum, I am so glad you have found us, I would say, very personally, stop googling.
I was told I had CLL by a gynae consultant, who referred me back to my GP, after an unrelated op. probably just as much of a shock. I don’t know how long I had had it.
I was healthy 53 yrs old and that was 17 yrs ago. The internet told me I had a life expectancy of 5-10 yrs, so I came home and wrote my will and funeral music.
I did not know how to explain to family, friends and work what I did not understand myself.
I think they thought, as I did, why wasn’t I being treated and cured. Now I realise that is not how it works and we are only treated when it is necessary from our tests and unique medical histories.
As @Nichola75 everyone is floundering and does not know what to say, how to say it or how to be, we cannot change that.
My GP said I was more likely to be run over by a bus than die from CLL.
It sounds as if currently you have also been put on active monitoring (commonly called watch and wait).
I can understand your feelings about the way you have been treated by the NHS and it was so unfortunate that the nurse rang on your dad’s 90th birthday, I was diagnosed just before Christmas and my card crossed in the post with a friend in Los Angeles and she had also been diagnosed with CLL, she is now 90yrs old.
I realised that I did have symptoms, the main one is fatigue and I have learnt to manage it and my 70th birthday was the best one ever.
Any questions just ask and you are probably in shock so be kind to yourself, we are all here to support you and as @Nichola75 says the support line and website have lots of useful information.

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What do you mean by ‘‘Stop googling’’? Erica ?

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Thank you Nichola75 !

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Hi Steven what I meant by stop googling is that there is some unreliable and worrying worldwide info out there. Personally I would just stick to the reputable NHS and key charity websites in this country.
I hope I didn’t confuse you.

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