Hi, I am a newly diagnosed male aged 61 living in Lincolnshire UK. I was given the devastating news in April by my GP following a routine blood test. I display no symptoms but my condition was confirmed by my consultant last week, CLL.
Currently I feel extremely anxious about how this condition will affect me as I enter into my golden years and my plans following retirement from work. Hoping I can communicate with all of you in the same position, find some answers and hopefully some positive advice as to how to deal with this. Thank you.
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Typhoon770
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First, welcome to this forum Typhoon! Great folks here, smart, supportive and you’ll learn much.
I can relate to your situation. Dx with CLL at retirement age 62 (a couple years ago), early Stage 0, Wait n Watch (W&W) case with this unique cancer. It won’t kill you, so said my CLL doc at first visit, but instead you are more likely to die with it. That’s good news!
It’s also very treatable “if and when” you’ll need it . Great new treatments are available n don’t Google CLL prognosis estimates cus they are inaccurate. You’ll hear great real life stories here of people that have lived with CLL for decades!
So enjoy life cus we know the dx news can be a jolt, but that news will fade away eventually. Hopefully, you have a great CLL specialist (that’s key) and let him/her do the worrying and the monitoring … you concentrate on enjoying those golden years ahead!
Hello Typhoon, welcome to the forum. I did a post about information newly diagnosed people with Cll might want to know. Here it is, I hope you find it helpful:
Welcome Typhoon--(I imagine, your name comes from the whirlwind you feel you are in with the diagnosis.
I hope you will be able to see from replies to you, that the diagnosis can be less scary with knowledge shared. Most do not have need for treatment very early in the diagnosis. There are some, yes, but even that prospect has been made to be more positive by the treatments that are available.
In the U.S. most of us have more testing done and revealed to us which gives us some bit of knowledge about our CLL. U.K. does not do those tests up front, but will when there are signs of needing treatment. I was told up when diagnosed at 60 that I most likely had a most indolent case. And, I went until my 21st year (last year) before I began treatment.
I worked for 5 years after my diagnosis and retired when my direct supervisor retired because she was the head of the company and there were naturally going to be a lot of changes by her replacement. I was also suffering from fatigue most likely because of anemia.
I changed some of my eating habits and began to exercise more--walking has been helpful and the two changes helped me to drop 40 lbs. in about 2 years time.
The main thing I felt after retirement and have continued to feel all these years is a lack of stress. There are times I put stress on myself, but I can, if I put my mind to it stop that before it affects my health (and I have learned it is the way to go.)
Please ask any questions you have as they may arise. and Best wishes if you are going to continue working for a time--it may be the best for you--we are all different in what can be best for us, as we are different in our diagnoses of CLL---there is room for us all and we welcome you, though it isn't something we wish on anyone.
The 13q14.3 deletion with IGHV mutation is said to be the one that is "predictably" long-term indolent. However, there are exceptions/variations (several subsets?) within the 13q area of deletion that make it fuzzy at least for those of us with less medical understanding.
Aging takes its toll, however, even at the cellular level so the only thing that so far has been said to not change in your diagnosis profile is the mutation of IGHV.
Vinnet, I noticed in your previous responses that your Dr. has said you seem to have a very indolent CLL---is it possible for you to get a copy of your diagnosis report that shows your CLL profile--deletions, mutation status?
That could help you to know more about your own situation. And of course there are other factors that can help you in being as healthy as you can in all areas--keeping your blood sugar as at a good level, eating a balanced diet, and getting exercise at least 3 times a week.
Thanks a lot for your response. I belong to a religion called Jain. Jains are strict vegetarians and do not eat after sunset.
My mom is 90plus, disease free.
My doctor dx is based upon wbc. There is no report describing more details.
I am sticking to jain diet and walk almost daily for 30 minutes. Hope I get a very long wnw. ( hopefully, simpler and affordable treatment may become available in near future.)
Welcome to the forum Typhoon. I know where you’re coming from as I was diagnosed at age 54. However, I’ll be 75 next week and have been in remission since November 2018. I decided to retire at age 55 as I was uncertain what the future would bring. Until Covid raised its ugly head I’d managed 60+ overseas trips (I live in NZ so overseas travel is a big deal compared with living in the UK). I’ve certainly had many treatments along the way but they’ve all been manageable and the main thing to note is that the treatment options get both better and more tolerable. I’ve been on a Venetoclax regime since April 2018.
So please try and stay positive and don’t be afraid to ask questions here. There are some very knowledgeable people on this forum.
Hi. I am just a bit younger than you and still early stage. One thing you need to do to protect yourself to enjoy your retirement is get vaccinated!
Think of it as an investment in your immune system so it has remembered immunity to disease later. Go to the guidance provided by the CLL Support Association who run this Health Unlocked group.
In the first five years after early diagnosis I have had an alphabet soup of different meningitis Hib and pneumonia vaccinations as well as shingrix for shingles. Plus the obvious flu and Covid vaccinations. I am coming up for Covid vaccination number 5.
It really is worth it. As the treatments for this cancer improve, the main complication is infection. It was years of Upper Respiratory Tract infections which did not properly clear which led me to be so exhausted that I had to leave work.
Just re-read your post. I think I am up to date although I have only had one hepatitis vaccine. Going to ask my GP when I had my DTP booster.
Just an add to your advice. My consultant recommended that I have the shingrix vaccination on the NHS, and they did it, with some grumbles from the practice nurse. Some of us have managed to get it on the NHS, some of us not. I am 58, so outside the standard age for shingles vaccination. It's not insignificant - I was quoted £500 to have the two injections privately at one of the big London clinics that does it. But I hear so many stories among my neighbours and on this forum about the misery of a bad shingles attack that I was very keen!
I’ve just had the first of 2 Shingrix shots here in NZ, where it is not subsidised. Total cost here is $860 (roughly 440 pounds). Like you I think it’s worth it. I’ve also had pneumonia shots in 2016 and 2021, free here. I’ve had pneumonia twice - 2020 and 2021 - but on neither occasion did I need to be admitted to hospital.
I asked my haematologist about pneumonia vaccine, as I had mine about 15 years ago, and he said it probably wouldn’t work for me and that was end of conversation. Dave
Dave, if you had your pneumonia vaccination 15 years ago, I expect it was the pneumovax23 vaccine. The prevnar20 or more available prevnar13 vaccines work far better in CLL. Perhaps try through your GP.
Hi I was diagnosed around 12 months ago following a routine blood test for a ear infection. I was 59 and like you was about to retire. To try to reassure you, I have had no treatment following scans and further bloods and in a far better place mentally now with the help of my consultant and the excellent knowledge of members on this site. I got told by my consultant at the time I probably had the CLL for two years previous of diagnosis and explained to me it is a indolent cancer. The members on here are amazing with their knowledge about CLL so your at the right place.
Getting this diagnosis is very frightening and overwhelming at first. I was also 61 but 12 years on I’m still on watch and wait. This wonderful forum is full of very knowledgeable people who will guide and give you the support you need. Eventually you come to terms with the condition which I hope will not be too problematic . Good luck. HazelUK
We all got the shock of our lives originally. However bear in mind that headline estimates of life expectancy ate based on old treatments. In other words, if you want to know if someone will survive 10 years, you can only look at pple who were treated 10 years ago. But there has been a revolution in treatment since then. CLL is currently incurable because you need a good few years to see if it comes back. The new meds haven't been out that long. In other words, many pple treated today may actually be cured (many have no traces of the diseases findable) but we won't know for that until until another 10 years have passed. If you'd caught covid 10 years ago, what would be the chances of dying? Are they less now with the vaccine and new treatments? Obviously in a huge way. Stats just take a while to catch up with long term diseases.
Yes it is a shock when receiving your diagnosis of CLL. I recall I thought my world had come apart. Of course it didnt. In fact life progressed as normal for several years.
I was diagnosed in 2013 and under wait and watch until July 2020. Seven years! Other than extreme fatigue and night sweats in the later years it did not cause me to change my life style much at all.
When matters did deteriorate in 2020 I was fortunate enough to be accepted into a clinical trial using Acalabrutinib.
After close to 2 years in the trial my various blood factors are not far beyond normal ranges and I feel great...as compared to one year ago.
My clinical trial team have proved a wonderful caring group who have managed me back to good health. I have two more years before my clinical trial concludes and all is working out fantastic
So even if your CLL worsens please feel assured there are now excellent treatments for you. I trust your CLL remains under wait and watch for a long long time.
Welcome to the club that none of us actually WANT to be members of! But it’s better to be a member today than in the not-too-distant past before all sorts of amazing advances in modern medicine occurred. Perhaps the news won’t be devastating at all.
Wow, Thank you so much to each of you that took the time to reply to me. It is tremendously reassuring to read your upbeat and positive comments relating to this condition. Having been given the news I have like so many of us do, reached out to Dr Google and that frightened the life out of me… no more of that for me. The only thing that has changed for me so far is a bit of weight loss down from 112kg to 108kg. I need to maintain my weight as I am rather tall at 6’4”, if I lose to much I will end up like a stick insect lol.
I have some questions if you don’t mindDoes diet play any part in the condition?
Are there Things to eat more of or less of?
I am a cigarette smoker and my consultant was quite adamant that I need to stop, once I calm myself down it will be my main focus.
With a lower immune system I understand we are more prone to infection. What measures do you all take to protect yourselves? Like most we have grandchildren who always seem to have coughs, colds and lord knows what else that they pick up from school, am I best avoiding contact with them during those periods?
I am booked in next Thursday to have 2 vaccines, not sure what they are but he said they will help boost my low immunity. Then more blood tests in 2 weeks followed by my second visit to the consultant. I am feeling somewhat better in myself already now that I have found this group. Thank you all so much for your kind words and advice. I will continue reading to feed my hunger for knowledge and information but this group is my number one. God bless you all. Mike
Mike, you are asking all the right questions. Since you have CLL, you need to give your body the best possible chance of staying strong and healthy. So having a healthy and balanced diet is a good way to start. There are no particular diets that would slow or speed up the progression of your disease - just use common sense. Processed foods are not good for anyone, drinking lots of alcohol is not good for anyone. Having a take away every now and then or a glass of wine is OK...you know what I mean. The healthier you eat, the healthier your body will be. Should you need treatment in the future, your body will be in a stronger position.
Smoking is not good for you either - but I am sure you know that - see if you can start cutting down at first and perhaps stop eventually? I know it can be hard but you have a good reason to start making some changes now.
As for infections - mask wearing, hand washing, staying away from others if they are sick. I have three young kids so it is hard but if I could avoid them when they are not well, I would 🙂
Great that you are getting some vaccines done already. Find out what they are, there is also a list of vaccines somewhere on here that we should have. Stay away from LIVE vaccines.
Good to have your iron and vitamin D and B levels checked. We can be low on these sometimes and it's good to substitute them if we know that.
I'm sure there will be more responses to your questions.
Sorry that you are going through this, it's not fair and it is a massive shock. You found the right place to get you through your lows.
Great idea to quit smoking. Pneumonia is a serious risk for us, so improving your lung health is an excellent goal. Fatigue and anaemia can also be a problem - so again, good lung function helps.
Hi . Typhoon770. I was diagnosed in Feb 21. I also felt that this is a devastating disease. However after getting over the initial diagnose and finding this website and the CLL support website I have slowly come to terms with it. I have great support from my consultant and specialist nurse who has allayed many of the fears I got about CLL. I am sure that like me it will take time for it to sink in. For me the worse thing after the diagnosis was getting COVID on top of CLL. I had COVID and it was very mild that was one fear over. I did have a very anxious moment a few months ago which you know in your self that it is unrealistic but you cant stop it. I logged onto the CLL support act which really helped to bring me down to a much calmer state. There are some very cleaver people on this website who will help you. There will be days when you get worried but I have felt that the longer you get used to your condition the easier it becomes. Its good to talk and listen it lowers any anxiety. All the very best to you on your journey .
Good to see that you have already had lots of positive support here. I was diagnosed just before my 60th Birthday, so not too dissimilar to you in that, and that is now nine years ago. (coincidentally I am expecting to be moving to lincolnshire in a few weeks time)
One thing you will learn quickly - and may already have picked up on in the replies here - is that everyone is different in their response to having the disease; their reaction to various treatments; the side effects that come along; and just about everything else 😀 - so it is good to learn about whole gamut of possibilities - but then realise that your own experience may well be different.
For me, the only time CLL has directly impacted my ability to get on with my life was when I was having chemo (did make me feel awful for a while) and now when the risks associated with Covid are relatively higher (keeps me from 'mixing' quite as much as I would otherwise).
From what I have learned I don't think it is possible for anyone to accurately predict the effect on any particular individual, however (especially with the rate that treatments are evolving) in general the outlook is not too bad.
As others have already said, live healthily, protect yourself from infections (and be prepared for it to take longer to get over anything), be positive - but while accepting that your health is imperfect and that there will be some things where it isn't wise to just continue as you were.
Welcome to this forum. I’m sorry for the circumstances that brought you here. I am here to encourage you. I am stage 4 cll and have been in remission since right before Christmas. I did Imbruvica and Ritaxmaub infusions with occasional blood transfusions. I am in alot of pain still and am on palliative care. I would suggest getting into a support for the pain and consider palliative care if need be. If you need any input just ask. I love this group they’re very supportive! God bless and will be praying for you.
Hi Typhoon770Take a look at cllsupport.org.uk the website of CLL Support, the patient led Charity that represents and supports those with CLL and SLL in the UK, they are the Charity arm of the UK CLL Forum of consultants, scientists and researchers with a special interest in the treatment of CLL and SLL.
Hi. I was diagnosed age 48 in 2006. I part retired in 2018 age 60 but still work part time. I generally live life no differently to a non CLL'er. I had the 'old' treatment of FCR in 2013 and am now on Venetoclax. With the new treatments now available to us all the future is looking bright. One of the most important things for me is having a specialist CLL consultant rather than a general haematologist. I also have a CLL Specialist Nurse. Both are invaluable. If you don't already have this then it's really worth looking into. I asked my GP to refer me to the nearest specialised haemotology unit rather than the local hospital where I was diagnosed. It's the best move I ever made! I go to Nottingham which is a bit of a journey but so worth it. They have the latest knowledge of CLL, trials and treatments should you ever need them (which you may well not) and are much better placed to inform you of your personal needs etc. I know it takes a while to get your head round everything - after 16 years I still remember the shock and fear at diagnosis. But understanding of CLL is so improved and new treatments are being trialled constantly. I do hope we're managing to ease your mind a little. Take care. Gillian
It is a big shock on diagnosis. Whilst all our CLL roads are different, people here will have relevant experience to whatever CLL throws at you (which might well be nothing). I am nearly 10 years after diagnosis (at 53, from a test as part of a blood donation - I had no idea!) and, despite a couple of treated consequences, no treatment for the CLL in site yet.
One thought - do get out of the 'Victim' thinking. Life is to enjoy, we only have one, and CLL will not get in the way of that! I accept worse odds cycling to work every day! I am sure you will have lots of life to come (and being positive will also help on the stop-smoking road - good luck with that, it is undoubtedly the best thing you can do to help yourself)
I was diagnosed in 2014 in the same way as yourself. It is ok to feel a victim for as long as you need. I handled the diagnosis fine initially but a few months down the line I became quite low. My GP said "you are grieving for the life you used to have." That comment helped me and slowly I have found the new me.
I am well and enjoying life. I look after myself with exercise, diet and listen to my needs and do as my body and emotions ask. The initial shock is huge so be kind to yourself.
COVID has been a challenge, but it has for everyone and the vaccines work for many with CLL.
Good luck. You will see that many people are on "watch and wait" for years. Getting your head around having cancer and not receiving that early treatment maybe a struggle but I understand medically this is the recommendation. I feel one of the most important things is a good Consultant and a Clinical Nurse Specialist who is there as a link and someone to share concerns with. I hope CLL was explained to you and information offered, plus an introduction to the Clinical Nurse Specialist. There is a campaign around this being carried out by Leukaemia Care.
Lots of people have referred to the many treatments if and when needed and which are improving all the time.
Typhoon770, it is great you have joined us to gather information and support. I am 73, diagnosed 2 years ago with a WBC of 54, now it is 106.3. My other blood numbers are not bad and I feel good. I do have an enlarged spleen and lymph nodes, but not a bother to me. This CLL journey is a slow one and for me has strengthened me to "move on", and enlightened me to what strengths I had hidden in me. I'm more aware of and practice healthier habits and due to Covid, carry a mask in case I am uncomfortable(like in an elevator or a crowded store). Ask any question you have and share any concern that you might feel. You have friends here! 🙂 Sandra
Hello Typhoon770
You've joined an amazing group of folks, which means...ta-daa, YOU'RE amazing too!
Hang in there~ My husband was diagnosed in 2020, suspected since 2018. He turns 64 next week~
It was a shock, but I can 1000% say, this site is a reason for my sanity & peace of mind.
Great follow-up questions Typhoon and you got a boatload of excellent replies from this awesome group. No surprise, many wise ones here!
Diet? Just had both a checkup with my CLL doc n GP (annual physical) and diet topic answer was continue to “eat healthy”… We (both wife n I, she too unfortunately a cancer patient) have been eating all organic foods since her first cancer dx 13 years ago and we also grow all our veggies. She is a master gardener… I’m just the donkey helper! She’s on a weekly chemo treatment regime so no longer drinks alcohol, n I cut back on it but still hoist a lucky one now n then. That seems to help our pro hockey team (Colorado Avalanche) get one game away from being a Stanley Cup winner!
Exercise? You didn’t ask about it but a few others noted it’s importance and it’s the number one topic to focus on per my docs. Basically, they say get as much as you can n find any exercise you enjoy (that you won’t quit on) … for example, a brisk walking the dog(s). The pups need it just like we do! Studies have shown lots of ancillary positive outcomes from regular exercise including reducing stress… like the dx stress your coping with now.
Smoking? You know what to do on that n the why. I talk with my close cousin often n he had throat cancer 20 years ago, was a smoker … they gave him a 50-50 chance to live if he quit smoking n a 0% chance to live if he didn’t! He quit, got a great treatment n living cancer free ever since! So obviously, ditch the cigs.
Grandkids/infections? We have em, love em, and heck yeah we see em! Of course they are sick with something n often… if it’s bad we wait n see em at a better time.
As for general public, we mask in crowded places to this day n eat outside when we can if it’s a restaurant visit. We have all the vaccine shots one can get, that helps bigtime. Glad to hear you are getting them! 😃
I think I covered most or all your follow-up questions … some of my replies are repeats from others, but it doesn’t hurt to read advice a few times over as it drives home what we think might help in your “CLL journey”.
Lastly, can’t say enough about your mental well being to focus on …. Docs are great to provide treatment when we are sick or as needed, but … perhaps as important is to keep a positive mental attitude and enjoy life! Get out there and do the things you like to do, n don’t let the dx beat you down. Stay strong … and don’t forget to have a daily laugh! CLL is not gloom-n-doom, you’ll beat it Typhoon! Take care.
Ladies and Gentlemen my fellow CLL'ers. I am completely overwhelmed by your responses to my original comment. I truly appreciate your sharing your own experiences with myself and others. I’d like to reply to you all individually but that may take a while. Please accept this as my thanks to you all. Knowing that the information on Dr Google is outdated and that the development of new treatments and medications has progressed to allow most to have a fairly normal life is extremely comforting. Compared to yesterday I already have a much more positive outlook. I could ramble on and on, but I will leave it here for now. God bless you all, you are true warriors.
Typhoon770- Please know with certainty that everything the folks on here is telling you in these posts is 100% true and is not just positive thinking. Every doctor I've spoken with has confirmed that it is highly treatable when and if you ever need treatment. Unlike with many other cancers, in CLL optimism is realism.
Hi. Welcome to the family. I too am 61 and live in Lincoln. It is indeed a very difficult time upon diagnosis, worry anxiety etc. I was diagnosed on my 55th birthday and have posted my journey on this forum. The good people here will support you and advise where they can. Best advice I can give Is to accept your condition, but do not dwell on it.Do not consult Dr Google, ask the forum. Live your normal life and deal with consultations and treatment when they happen. I have always been open with people regarding my condition and ask not for sympathy but understanding. I keep my CLL in a box and only open the box when it is necessary. Best wishes.
I'm glad I found this group when I did - after treatment. Which meant I spent 14 years in blissful ignorance of what could have gone worse, having bought my diagnosing doc's glib remark that I would more likely die under the wheels of a bus than of CLL. To that extent I agree with Jack, it's best to accept your condition as something that's now part of you, but doesn't have to interfere with normal life and definitely is not worth obsessing over. Victim is not a badge I choose to wear.
Just do the right things to maintain general health, get all the vaccines available and do screening for skin/ colon cancers (increased risk). Otherwise don't change your plans, and enjoy life!
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