Hello. My husband has just been diagnosed with CLL. He's only 47. We are waiting for his hospital appointment - so far we've just seen the GP. All a bit of a shock - just thought he had slightly high blood pressure and came away with cancer 
I know Dr Google is bad, but I am going out of my mind worrying about prognosis.
I know I need to be patient, but has anyone been diagnosed under 50 and can give me some reassurance?
I am in your husband’s shoes. Diagnosed in February and started treatment in May. There are several excellent treatments and many more will be available in the next few years. Toughest part of my journey so far is the mental part. I got a therapist. Joined a gym. Got a puppy. It made me feel better. The first few months after diagnosis were very hard for me. I feel much better now.
Life expectancy with CLL is almost the same as life expectancy without CLL.
ash.confex.com/ash/2024/web...
Thank you. I think the waiting is the worst bit at the moment. We already live with chronic illness (myself and our eldest son have T1D), but hearing "cancer" is a bit different. He crashed our car the day after finding out (parking it so he's fine, but the car is not) which isn't helping the stress levels as we only have the 1!
UK NHS treatments for CLL are now essentially Chemotherapy free.
Welcome to the community, sorry you had to join. I was diagnosed at 47 and January 2025 I'll be 2 years in to this journey. You will get more reply posts if you lock your post. You can find info about how to do that in the Pinned Posts, which should be located on the right side of your screen.
If you haven't read though all the Pinned Posts I'd strongly suggest that as a great place to start. Then as you digest some of the info go back and slowly reread all that again, there is just so much info and getting all the language and info down takes some time. Most folks say they heard from a dr, as did I, that this is the best cancer you can have. Yeah, maybe, but I'd rather not have it at all. Oh well, there goes wishing. This is a life , physical, mental, spiritual, and social journey. When I was first diagnosed I made plans for things I thought I'd miss. Walking my daughter down the aisle, being there for my son's graduation, the vacations I've always wanted to do with my wife. I'm a big investment planner as I look towards all my future plans. For a while I gave all of that up, why bother, I wasn't going to be around for any of that fun stuff anymore. After reading all the Pinned Posts and grasping what this journey will probably look like and getting to a dr that knew more about CLL, I'm back to planning for retirement and living a mostly full, if somewhat modified life. This is a great place with some fantastically knowledgable folks who are willing to help explain the answers to all your questions. Inform yourself, listen to others, and make your own plans. And most importantly be patient with your husband and his thoughts and feelings. My wife is my angel and strength when I need it most.
I had very similar emotions but my only regret now is retiring abroad to somewhere in the sun is off the table because the costs of potential treatment means reliance on NHS. So now planning for 3 mth winter ‘soujorns’ instead and stay in UK.
I'm sorry to hear your news. You've come to the right place, and you will find a lot of balanced and sensible advice on this forum.
I was diagnosed aged 43 in 2012 (I'm in the UK) so, like your husband, quite young for CLL.
I've been on 'watch and wait', i.e. regular blood tests but no treatment, for all of this time. I have haematology appointments every 3-6 months. These comprise a very quick physical exam and blood tests, and that's it.
The key thing to remember when reading about CLL online is that everyone with CLL is a bit different. Some us don't or haven't needed treatment yet, whereas other folks need treatment sooner. I've been lucky so far, and I have an active life.
His initial tests might take some time. These will include blood tests to pinpoint the characteristics of your husband's CLL. Your consultant may also ask for a CT scan (body scan) to be done - they will have already felt his lymph nodes, a CT scan just gives a bit more detail.
It's only after these tests will they be able to tell you whether you will be 'watch and wait', or whether you need to step into treatment more quickly. Other folks on this forum are 'expert patients' when it comes to treatment, and will be able to give you a virtual hand-hold.
If he is 'watch and wait', that's also tough, but for a different range of reasons - the uncertainty, odd unexplained symptoms (are these CLL or not?) and of course practical things such as who to tell, dealing with work, and things like travel insurance.
Take each day as it comes, and please make use of the guidance on this forum.
I was diagnosed in mid-50s with an active career and two preteens at home.
It will all be OK. In many cases progression is quite slow and treatments may not be needed for many years. If they are needed, they have a good track record, there are several options, and odds are they will knock the cancer back for some time.
Because of the typical slow disease progression, I'd be hesitant to inform kids or work until you have thought it through. You have time to figure this out.
I've posted a fair bit on this specific topic area; you can check my profile and posts for more info. ***However*** also recognize that my case is unlikely to resemble yours - my progression was extremely rapid for CLL and is not the norm. Even with that, I'm in combination treatment now and it's going well with every expectation I will reach remission next spring.
Good luck. It's a lot to take in.
cllsociety.org is a good resource for newcomers.
You both are starting a journey, believe it or not, it begins with waiting. Weird huh?
Your husband will be referred to a hematologist/oncologist and they will do a series of tests. When you get those tests back, your journey begins with understanding what this all means.
Our first inclination is to say ok how do we get rid of this and try to do something immediately. Try to slow down, with CLL/SLL it's a matter of restructuring your perspective. This isn't Cancer it's cAnswer. The first word in CLL is chronic, (long lasting) not Acute (immediate attention).
CLL is varied by many factors that present differently it is not a cookie cutter disease. My oncologist suggested that I go to CLL Society.Org. It is not a blog of scrapings and opinions from the internet, rather it is very science based reputable information.
Also look to the left on this page to the Pinned Posts they can lead you to easier starting to understand and take practical steps to start with. Especially Cajunjeff's CLL for dummies.
Your goal is to stay healthy and buy time before treatment. But don't worry if you are encouraged to start for medically verifiable reasons. If an approach isn't working out for your husband there are other medicines that can work.
So breath deep, only take in a little information at a time don't get overwhelmed it just causes anxiety and isn't enjoyable.
Keep in touch, welcome 🙂💐
I was 53 at diagnosis 5 years ago. Still W&W, early stages.
I was diagnosed at 39 and 7 months pregnant with our third child. It's such a shock...sending hugs to you and your husband. Almost 6 years later now and I'm doing well. I had treatment in 2022 and have been in remission since. Praying it lasts 🙏🏻all the best to your husband. Take it easy.
Hello and sorry for your news. I am in a very similar situation as I got my news this past March. I am 53 years and in good health, work in an office and no family history of blood cancers so, as you expect I was completely shocked at hearing this. What was just as hard for me was hearing was next doctors telling me there is really not much you can do as the disease will progress until the day you need treatment. I've spent the last 6 months doing research and putting my plan together as I feel there must be things I can do to slow the progress or at least try. From what I hear the course of action while in wait and watch is to keep your body and organs as healthy as possible. There are several diets out there people prefer ranging from plant based to Keto. What seems to be working for me is a high protein, healthy and vegetable diet. reduced/eliminate carbs/sugars/alcohol and added vitamins to support RBCs and platelets.
Choosing both a CLL specialist and cancer center that can provide the care you need is very important. The first doctor I was referred to was in a cancer center that was overwhelmed with patients and was hard to get appointments or questioned answered. I did some research and found a good fit for my care team and cancer center. I have my follow up in December so hoping for the best.. Good luck and LMK if you would like to share some information that can help in the start of this journey and Ill forward to you. Save yourself some time.
Diagnosed at same age 2 years ago. If it wasn't for my new job giving me a health screening I would still be sitting here unaware I had CLL. I'm in the UK too, and got some of the genetic tests but it's not that common if you are in Watch and Wait.
What I will say is that the available treatments today on the NHS compared to what was explained to me when I was diagnosed is unbelievable considering it was only 2 years ago. And it's getting better and better.
I got some of the vaccines, am more aware of people with colds etc and wash my hand a lot. Other than that, life is the same. Compared to my friend with breast cancer, I almost feel like a fraud when we have a chat about our health.
Diagnosed at 36, watch and wait about a year, been in treatment for past year with no side effects. I have all the bad markers, just turned 39. My stats are good, not in remission yet, my life is great. Keep living your best life.
What treatments are you on and when did you start ?
Started last October, three months of Zanubrutinib. Last 12 has been both that with Venetoclax. If I’m not MRD in my marrow by end of month, then we’ll do six more months with the addition of Obinutuzimab. Last check of my peripheral bloods 2 months ago had me at like 0.3 %, so while it’s low, I’m guessing I’ll need the O to get to MRD.
How many mg of venetoclax ? I was told taking voriconazole would pharmacologically lower the dose of venetoclax to 100 from 400. So I was taking that which in turn hurt my liver!!! So now off of everything including Vidaza infusions (for AML and TPLL and I guess CLL too) venetoclax and voriconazole. So basically everything I was on 😳Are you taking 400mg? Was changed to Onureg pills 200 mg which is the pill form of Vidaza infusions- hopefully they will arrive by this Thursday. 😳
I am on 400, they ramped me up in the beginning, but I’ve been at this level for basically a year now. Fortunately haven’t had many side effects. Honestly I’m not familiar with all the stuff you’ve been on. I bet you’ll be glad to switch to a pill form.
❤️ Welcome to you (and your husband). I’m 49 and just diagnosed this Summer. I’m on anxiety medication and making a lot of changes to diet and exercise while settling into this diagnosis. It’s huge that you’ve found this group already - reading the posts and responses have given me more info, knowledge, support and calm than any doc so far.
I was diagnosed at age 50 over 12 years ago. I had enlarged lymph nodes and symptoms like frequent infections for several years before that. I have done well even though I have a more aggressive flavor of CLL, and have responded well to treatment.
Hi there blacktortoise, I was diagnosed at 47 years old back in 2010. Like you I panicked went on Dr Google and panicked some more, no need I'm still here..I was on W&W till Jan 2015 then I started treatment on Ibrutinib and Rituximab which did the job it was su to do. I went into remission until June 2022 when my numbers started climbing and lymph nodes started getting very large. In September 2023 I started 2nd line treatment on Venetoclax and rituximab and so far seems to doing its job, I no longer have visable lymph nodes and my bloods are all within normal range, I have another 10 months left on this treatment course then I hope to get a few more years off treatment. Hope you and your husband find comfort in reading people's reply and good luck for the future. You have joined a really good community here. Regards Sue x
Hi my journey so far, im 2 years in or will be in Jan.it was my GP that sent me for tests as my white blood cells kept rising and he waasnt happy, came back CLL, I have had three phone calls from my specialist but have never seen anyone face to face, as far as im aware not had any tests or scans done, my blood tests are done every six months.
My bloods are good at the minute, my wbc is under 30 as of may this year my next ones are due this monrh think they were 28 of top of my head, i heard they are not really interested in number till they get over 30.
Sorry im 56 well for next few weeks anyway, 🙂🙂
Hi I was dx at 47 with CLL and 17p although I think I had CLL for many years before that due to high wbc and constant infections. I had two years in W/W and then started Ibrutinb which I have been on 7.5 years with great success, although I'm now failing that drug and next week move on to my second treatment veneticlax and rituxmnab. In this time I have worked and lived as normal gone out partied lived life etc. Tell your husband and yourself to look forward and enjoy life all the best.
Hi,
I was 48 when I found out, early this year.
I was fortunate to get a very good consultant.
My consultant told me just to look at CLL Support Group website only. Don’t look at other websites.
Videos such as this one are great:
youtu.be/uMfkm4lrlO8?si=BMZ...
I had blood tests, CT scans, and I’m on W&W to monitor the rapidity of the CLL.
Consultant also suggested that I just tell close family/freinds only.
Recommend he joins the CLL Support organisation. There is a WhatsApp group for younger CLL sufferers in the UK too, which is great.
After the initial shock, I researched about CLL and I am just getting on with my life.
Good luck.
I was diagnosed at 45. Had around 7 years on watch and wait and been on Acalabrutinib treatment 3 years. All is going well. It’s worrying and he is young for CLL but try to encourage him and yourself to live your lives. There are hiccups - insurance becomes hard, infections may be harder to shift - but he is likely to have many many years ahead even if he starts treatment. Trying to stay in good health otherwise - weight etc - helps.
such a blow to be diagnosed with this when you are still so young. I was diagnosed in 2018 at 63. My haematologist kept saying ‘ I am going to treat you in two years’ as my WBC was increasing quite fast. However then I came across the CLL/Exercise research study led by Dr David Bartlett at University of Surrey. I think they are still looking for candidates. They put me through it from an exercise perspective which was great but best of all it slowed down my WBC growth so that the haematologist now says that he does not know when he will treat me. The great thing about this is that the exercise which I have kept up since coming off the programme - three runs a week and two sessions weight lifting does wonders for morale because it feels as if you are helping fight the disease not passively sitting in an armchair waiting for it to come and get you. So another name for this might be instead of watch and wait ‘watch and lift weights’!
I was told by a haematologist friend that if you are going to get leukaemia CLL is the best one to get. It is usually slow developing and with the latest oral medication he could see 100 (if he doesn’t get anything else)
Thank you all so much for your replies. It really does help. Husband isn't ready to read too much yet, which is absolutely fine. But I need to and this place is so helpful.
Hi Blacktortoise
We all remember how it felt when we heard the word Leukaemia.
What usually happens in the begining, is that the Consultant will want to see if there is any pattern to the blood counts.
My experience was of being checked every three months for a couple of years, then it became every six months, and now every year.
My blood counts have been rising ever since my first visit ... I was diagnosed with CLL aged 47 in 2006, and have not as yet needed treatment. I too found out that I had CLL through a routine blood test.
I hope that you will keep making good use of the good people on here who are only too willing to help in any way they can ... as you can see you've already met some new friends.
Some can help with technical details, some with advice on coping, others who'll pop in for a chat or listen when we feel the need for a rant ... and that does include the carers who are a vital part of this community.
ygtgo
I well remember the shock of getting my diagnosis following a routine blood test when I was 47 years old. The sense of doom and gloom was overwhelming. Soon after I met a wonderful specialist who has been on this journey with me ever since and I’ll be turning 70 next month. I have lived my life with joy and hope and your husband will too.
It’s hard to fathom right now but it’s going to be ok.
I was diagnosed aged 39 in December 1994 so am just coming up to my 30th anniversary so a long life with this disease is possible.
Jacques
It's a shocker, I wish your husband the success I've had, diagnosed at 40, heading for birthday #73 and feeling great. Jerry
This is my first entry here, but my husband was diagnosed in 2011, he was 44, we were quite shocked especially since this was supposed to be an 'old' person's disease. He was on watch and wait, the weirdest thing for a cancer patient to hear, until this year, so 13 years of no treatment. He's on acala now and is doing fantastically. He has always been taking vitamin D, they say there is a correlation, just our own anecdotal evidence. It was much scarier the first few appts but after awhile it just becomes old hat. I hope all goes well with your diagnosis.
I am pretty sure that many of us on this board had undiagnosed CLL for years and years before becoming aware of the problem usually by accident. My dentist picked up on my swollen nodes, for example. A good thing for your husband is that we now have targeted therapies that can manage this disease for years.
Hi, blacktortoise! I was diagnosed at age 37 during a physical for a new job. I most likely had it for a bit before that as my WBC was around 11 at the time. I was in the watch and wait group until this year at age69, and went for O/V in February (with many complications, but I’m fine now). I’m very thankful to the Lord that I had 32 years with no treatment! I had many seasons in my life where I didn’t think about the disease at all, just lived my life. I pray that this will be the case for your husband too!
I too was diagnosed at 47, in March 2020 as the rest of the world caught Covid, I had to one up everyone and catch cancer. The first few weeks waiting for the hematologist were terrible with Dr Google and mortality searches etc. I started treatment 21 months after diagnosis and when it started I looked back and realised how much anxiety I had lived with from diagnosis. So first advice is confront the anxiety- see a cancer psychologist if you need to. The treatments have been great and easy to take with minor weird side affects. I have maintained my life in farming and construction with very little alteration and am now on my 2nd line of treatment. Next is to turn the diagnosis into a positive, we fill our lives (and our homes) with clutter- use this as a reason to clear the clutter in life and see what is important, focus on those things and ditch some other things that are less important. Life should largely go on as normal, just with a fair few more little visits to the Dr and maybe short stints in hospital, just adapt and look forward to making the most of the good time. Finally the hardest part for me- the fatigue, it strikes from nowhere and makes me a miserable old bastard feeling like crap. I have no good means of managing it as I have to work through but boy do I make mistakes. It may be better to go and lie down. Fortunately it is only now and then that it hits, but it hits us all. Everyones cancer journey is different (so many genetic variations in CLL) I wish you all the best and hope you can turn this negative into a positive!
yes my husband was diagnosed in 2021 at age 42…we were on watch and wait for about a year. Then he started on treatment which is the targeted cell therapy for cll. The medication is imbruvica. It’s been 2 years since he’s started. We were terrified of the side effects. The worst side effect he’s had has been muscle cramps. We went to the urgent treatment because of foliculitis and a bump on the back of his ear initially. He also had swollen lymph nodes behind the ear and the woman immediately took blood and called the next day with his super elevated white blood count. It was so scary but he’s actually doing well. If you ever have anymore questions please feel free. He’s much better at answering than I.
I had just turned 49. I am 65 now. Still watch and wait but I did a lot of things, like change my diet. Initially I was given a poor prognosis. It is such a shock, right? But don't despair. Work hard to adjust, figure out what you can do for yourselves, and find a very good doctor. Wishing you all well!
I am so sorry for your husband’s diagnosis. The fact that you are here is a great start. You will find compassionate, knowledgable “friends” that can and will help you do life with CLL. The ups and downs of blood work, every, ache, pain, bump and bruise will no long be just minor issues in your head. The mental roller coaster is touch. But lean into and on each other and grow your love and faith. That is my 2 cents worth of advice right now. Also please peak at this. I was diagnosed in Feb. of 2024 and this post brought me some peace! Blessings to you and your family.
i was diagnosed in my mid-50s and just started treatment at 67. No symptoms/no treatment for over a decade. My WBC got to 150 before starting - and the count has bounced all around the last five months. The treatment has morphed from immediate stem cell transplant to a twice daily pill. Have faith in your oncologist, live healthy lifestyle and try not to stress.
I was diagnosed at the age of 47 in 2005 but believe I had it quite a few years before. I very quickly started treatment soon after. I have just finished a second]course of treatment inJuly and remain very well. I was given 15 years to live and am pleased to say that I have outlived my haematologists expectation. I have always striven to lead a normal life and my faith in God has never ceased nor have I doubted that He will hold me fast. Despite having thyroid cancer and basal cell carcinoma, I think that I have remained well and yes, the road has been bumpy but I have always received good care from my hospital and doctors.
Yes. I was diagnosed on my 46th birthday. I am now 59. I received obinatuzimab in 2019 and am in MRD (minimal residual disease) status since 2/2020. I was on W&W for 8 years before noticing any outward symptoms (fevers, night sweats, weight loss).
Dr Google is fine. As long as you only look at recent articles that are dated in the last couple of years, look at more than one site for multiple perspectives, and use reputable health sites. Check cllsociety.org. It is an amazing resource.
I know this is so scary in the beginning. I was diagnosed 11 years ago at age 51. Looking back on bloodwork, I suspect it started brewing at age 48 or so. I didn't start treatment for the first 5 years and then white count and lymph node size kept increasing. Still on the same treatment since 2018. I take my pill each day and go about my life. Everyone is different but this is truly chronic and slooooow growing. It will be ok. He will be ok. So many treatments when and if that time comes! My oncologist told me early on that due to this, I will die of something else. I believe her! Hang in there and try not to stress too much. To this day I still have not googled. A large % of the info online is outdated. Dr. Google is not reliable! ☺️
I understand how concerned you must be. You did well to reach out to others. You will find this community very supportive and helpful. Please be reassured that your husband CAN manage this as a chronic illness. He can reach the point where he doesn't even think about CLL every day.
I was diagnosed at age 41, with a 3-yr old child. Over the years, I needed CLL treatment four times. Every time I relapsed, there was a new and improved treatment regimen available. I'm now 71 and expecting my first grandchild next month. I need to be extra careful to avoid infections and sick people, but otherwise have a good quality of life.
Best of luck!
Hi blacktortoise,
It’s very tough being a partner of someone with CLL and you too need support through this. I was diagnosed at 54 and my husband has been brilliant over the 12 and a half years I’ve had CLL.
I don’t know if you’ve joined the CLL Support Charity but they have an online webinair for partners and care givers that you may find really helpful.
‘Partners and Supporters'
18th November 2024 16:30 - 17:30 GMT
‘This webinar is especially for the partners and supporters of those with CLL or SLL. There is a lot of advice out there for patients about diagnosis, treatment and general health issues but partners and supporters can sometimes feel very anxious about how they can help their loved one throughout all of the challenges they will meet. In this webinar partners and supporters will share their experiences followed by an opportunity for you to share your thoughts.’
Please join the organisation (U.K. based) and you’ll receive details and invites to the very useful events they organise for patients and loved ones.
0800 977 4396
Newdawn
Thank you, I will check that out.
Understanding CLL better just been diagnosed
fairly young (50) and just diagnosed
diagnosed march 55yr old
My mom 78 years old diagnosed with CLL.
Just diagnosed 
