Having been diagnosed with CLL on Tuesday I have had a week of many emotions. I am 40 years old and fit and healthy, but for a infected facial spot in November which lead to a routine blood test. I have read a fair amount on the subject now and luckily found this forum. I am on the doctors 'watch list' which, as someone aptly described as a time bomb with no timer. It would be good to hear from anyone of similar age or any useful advice relating to coping with life post diagnosis. Richard
Diagnosed at 40: Having been diagnosed with CLL... - CLL Support
Diagnosed at 40
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rspencer75
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Hi Richard
Welcome to the CLL Support group ...
I was first told that I had CLL by my GP after a routine blood test due to another illness ... I was not ill due to having CLL.
I was diagnosed aged 47 in 2006, and have not as yet needed treatment although my blood counts have been gradually increasing ever since.
I hope that you make good use of the site which is kept up to date on any information developing in the world of CLL, plus the wealth of experience of the members who are only to pleased to help with any questions that you may have.
There are NO stupid questions on here, so if there is anything that you need to know, or anything that you don't understand, just ask.
My experience was of being checked every three months for a couple of years, then it became every six months, and now every year. Others on the site have reported the same pattern.
Have a look at the ' Pinned Posts ' and ' Topics ' section.
PaulaS compiled a three part topic called - Coping strategies for Living with CLL - Parts 1- 2 - 3.
We all remember how hard it is when we were first diagnosed ... on here, you are not alone ... so if it's information you need, someone will answer any questions you have ... if it's just to blow off steam,it's the right place for a rant.
... I remember all too well that my stupid brain went into overdrive and wouldn't give me any peace for a while.
Best not to troll the net, a lot of it is out of date ... any news, treatments or breakthroughs are covered on here.
ygtgo
in reply to ygtgo
How long did it take for you to start feeling somewhat back to normal? It's only been a month since diagnosis and I feel like I'm going crazy!
Hello Richard,
I understand the feeling of terror associated with with the diagnosis of CLL. I was informed of my CLL by a haematologist in Guy's hospital (London) almost two years' ago. At 56 at the time, I was older than you. I feel for you, but my blood levels' have stayed pretty much the same since being diagnosed.
I have met only one person with CLL and she had been diagnosed 30 years' ago, with no treatment. There is ALWAYS HOPE.
There are far wiser people on this site than I, they are better placed to advise you.
Good luck.
I responded to your other post. Here it is again:
Richard,
The sanity will return. We all went through it hopefully your family is standing with you.
Advice, see a CLL specialist. That is a MUST!
Stop having conversations with yourself. They won't help.
I am borrowing a re-quote from someone on the ACOR site: "Worry does not empty tomorrow of it's sorrow, it empties today of it's strength." This was authored by Corrie ten Boom, a holocaust survivor.
This site will give you some help. WE understand. Come here and vent, ask questions, whatever.
There is hope of a cure now. Ask some of the veterans on this site how remarkable that is. Everything they have been through and all they want is to listen and also be heard. Most of all, to help. Welcome to the club we all hate being a member of. The cancer sucks but the people in the club are wonderful.
Jeff
Glad to see you've done your own post Richard. As I said before, this is an excellent forum. Also wanted to say, don't fry your brain trying to understand everything at once (hard I know, I did it!) A lot of what you hear won't make sense to you and you may be years away from treatment by which time a lot of things going on now won't apply.
Believe me when I say that you will calm down from where you are now. Hang in there. Peggy
Hi there Richard I am just having a bad day today but will pick myself up again. When I first got diagnosed at 55 a bit older than you I also found this site while looking through the internet and I found it a god send because I usually just read the post and can find the answers to any questions I have in between hospital visits. I hope your journey is a long one take care it will get easier to understand love buzzybab
Hi Richard - sorry you had to join us.
I was diagnosed at 38, when I had 3 children under 7. It was devastating and the period you're going through is by far my worst time living with this disease. I know it sounds trite but it does get easier. It helps to know what you're dealing with so please see a CLL expert - I have found them to be reassuring. My story is quite unusual - many people never need any treatment but I'm now on my second treatment - I'm 42 and in a clinical trial at Barts hospital in London. So much hope in that and the other new therapies. I'll give you the advice someone gave me - be kind to yourself and don't mourn yourself too quickly - you will get through this.
Best wishes
Deborah
Deb,
I just read your blog. You are an absolutely courageous and incredible woman. God bless.
Jeff
Aw thanks Jeff. Haven't updated it since my return to Australia two weeks ago but you'll be pleased to hear I'm lying in the sunshine with my children playing around me as I type this. Back on the plane to London this weekend for my 6th and final cycle of the obinutuzimab and will be back home for Easter. I'm sure it will all be worth it!
It's been quite the journey but all about turning a massive negative into a positive for the children (and for me!). Had no idea this time last year that I'd be travelling to California, Niagara Falls and New York then moving to London and having the children travel with me to Paris and ski in the French Alps! Life is what happens when you're making other plans to quote the great John Lennon.
I was asked on camera the other day what I would say to myself if I was newly diagnosed today and I replied that I would say get on with your life, the scientists are on the cusp of a cure and it will happen in the timeframe you need it so make the most of today and try not to fear for tomorrow.
Thanks again for the lovely comment.
Deb
Hi deb. My name is louise. I am 42 and live in australia. Was diagnosed in dec 2015. X
Deb,
You are welcome. Enjoy the kids. They grow up way too quick and I'm glad you're doing well and enjoying the ride.
You're an inspiration to me and many others. I'm hoping for Venetoclax or Acalabrutinib next go around. Thanks for blazing one of those trails.
Jeff
Hi Richard, my family doc gave me the news at 43 (confirmed by specialist at 44). First weeks, it's all I thought about...but now 15 months later, it's on a slow boil, just like my blood counts. Believe it or not, it becomes something you just learn to live with, while we wait for the braniacs to find us a cure! Take care.
48 and W&W. Just remember this isn't a death sentence and nothing is about to steal you. Many can live decades and that's before the latest round of promising drugs.
Take the positives you can from this and learn to live life like you stole it and love like there is no Tomorrow. Many people have been killed in car accidents sadly since you found out this. They were perfectly healthy and your still here and have s great chance to be here for many more years.
Thank you for all your reassuring comments. A question, when should I be concerned about small bumps in my groin? not sure if they have always been present, but now I'm aware of them I am a little worried. I was checked over by a haematologist 6 days ago. Thanks again. Richard
Richard
Small expanded lymph nodes in the groin are common as the lymphocytes congregate and hide in the nodes from time to time.
You may find they go down and appear again .
During your examination did your doctor chech for nodes?
It is quite likely that these will have been there for some time but you haven't noticed them.
Unless they become troublesome let's say large and painful just keep your eye on them and report when you have your next check up.
I know it's difficult at this early stage but don't panick go with the flow and things will come together in your head.
After 16 years living with this condition I can assure you the psychological side gets better.
Geoff
Hi Geoff,
Yes, the doctor did check for nodes. They do ache slightly today, but that could be from all the prodding yesterday!
Richard
Yes probably the poking around Richard.
Don't worry about them you will possibly find several areas of enlarged lymph nodes over the years underarm, neck and groin quite common. Mine went to 3-5 cm on occasions so we're not too much of a problem although the neck node did press slightly on the artery so occasional giddy spell from which I was diagnosed.
Some patients do have extremely enlarged nodes and this can be the reason to start treatment when they start causing other problems.
In many cases they are up and down all the time.
As said before just be aware but don't worry.
Best wishes
Geoff
I was diagnosed at the age of 18 and needed treatment 2 years later.
My CLL started acting as aggressive lymphoma 4 months ago.
Being prepared for a bone marrow transplant . But first I need to be in remission
Hi Ausrine, I am so sorry to hear this. Hope all goes well for you. Richard
Welcome Richard,
I would say do not be fooled ;you have an illness ,a serious illness.Many of your friends may not see the seriousness of it ,even you will not because you will feel and look good.Even when you start or are feeling the symptoms you will not appear outwardly sick and they or you may express doubt about your condition.You know the truth and are the real expert as to how your body is functioning .Just keep aware and follow your on counsel .I wish you all the best.
Hi Richard, I was diagnosed with SLL/CLL last May at the age of 50 through a routine mammogram. Someone was sure paying attention and noticed that a couple of my nodes were a bit larger than the last year. I was in shock and it was this site and a good hematologist and SLL/CLL expert that made me feel a bit calmer. Another thing that keeps me positive (most days) is the fact that my Uncle has CLL and he has been on watch and wait for 20 years. One day at a time in my new mantra. Keep living and laughing as often as possible and do visit this site regularly. There are better treatments now than ever and even better ones in the pipeline Be well - Susan
Hi Richard,
So sorry to hear about your diagnosis, but you have come to the right place for excellent advice and support.
Like you I was diagnosed by chance in June at the age of 40! and like you and many others I was so afraid (still am, feeling better about things now), I was lost, couldn't look forward, wishing my life away in terms of that I wished I was 70 and was told then, wikl I make it 70+. I have my next appt in May and on W&W, my advice to you my friend is;
1) Careful who you share your diagnosis, people will not really understand and you don't want to be seen as the condemned man. Which you are not!
2) Being so young, I guess you are working, you don't want to be prevented in career progression.
3) Did you know 33% of people diagnosed don't ever need treatment!!! Although this condition is an individual thing in how it progressive in you, however the stats are impressive!
4) If and when you do need any treatment, there are lots available and not all chemo, my good friend Cammie who has already replied has lived with this for over 17yrs, after various treatments.
5) I found it helped searching for people near me on this forum to meet for a coffee and chat. I live in the Midlands and happy meet you if you are close and upto it.
6) There are meetings arranged by the committee of this forum, I found it very beneficial to attend and listen to various speakers inc specialist doctors. I will warm you that it was a shock to the system at first seeing a room full of people and me being the youngest, the feeling of doom and how will I get through this came rushing back initially.
I wish you well, no question is stupid!
Regards to
Thank you so much for this email, it means so much. I'm in Kent, but do have the need to occasionally go to Birmingham and Leicester. Richard
I'm glad it helped, I live in Birmingham, so if you are around let me know.
Hi Richard,
Sorry you were diagnosed. I was diagnosed in December, and I'm 47. Last week, I found they finally got my second test results back (screwed up the first ones) and I learned I dreaded 17p deletion. A day later, they call to tell me my WBC doubled in 6 weeks. So much for 2 years watch and wait, worst case scenario. Now we're looking at this month maybe.
You probably don't have my poor prognosis, but I would highly suggest getting all the genetic testing done just so you know what you are headed for. In either event, don't panic. If I can keep it together, so can you.
Welcome to our community Thompsonellen! You haven't stated what your starting white blood count was and you may be unnecessarily concerned. You should measure your Absolute Lymphocyte Count doubling time and only once it has climbed above 30. I was rather worried about 6 years ago when my count doubled in about 3 months, but my haematologist wasn't that concerned (because my ALC was under 30) and 6 years on I'm still in W & W.
17p is only to be dreaded if you need treatment and you are limited to chemotherapy treatment. 17p patients treated on the new non-chemo drugs respond well, so if you do need treatment, depending where you live, you may already have access to the new treatment drugs or may be able to gain access to them via clinical trials.
Check out the pinned posts to the right:
* Why we need to track the absolute lymphocyte count (ALC) not white blood cell count (WBC)
* When to Treat
* When do white count numbers trigger treatment?
Neil
Lymphocytes went from about ~20-40K in 6 weeks and when she say this, the hematologist called me and told me to expect 1-2 months to treatment (Ibrutinib) and referred me to Penn's Abramson Cancer Center because I'm ultra high risk and might as well see a dr who does stem cell transplants now. I'll know more Thursday when I get down to Penn. Lost faith in my Dr after several bigs mistakes, the smallest of which was losing the first set of labs.
But as I've read elsewhere, worrying today only robs my strength today.
I'm glad you are going for a second opinion, but given your situation, I'd write a specific post asking if any members can recommend a good CLL specialist near you. Meanwhile, please check out the link below for a list of CLL specialists recommended by Dr Jeff Sharman, a highly respected CLL specialist who practices in Oregon. In his post (link below), there's also a list of doctors recommended by CLL patients. These doctors may not be CLL experts, just doctors that CLL patients feel understand their CLL:
cll-nhl.com/p/cllnhl-doctor...
I suspect a CLL specialist would monitor your ALC for a few months to see if it settles down or continues to climb before starting treatment. We have some members with ALC numbers well over 200 and still in watch and wait.
CLL specialists are also using stem cell transplants much less than used to be the case. It is a high risk procedure - with risk increasing with age and success is not guaranteed. If it is successful, it is a cure for CLL - which with a 17p deletion is not currently recognised as possible with other treatments. Ibrutinib has been shown to work very well with 17p deletion patients and you may do well long term on Ibrutinib and not need a stem cell transplant.
Neil
Thanks. The doctor I am seeing tomorrow is on the list. Given there are only three in PA, that is a good sign. 
Great news! Meanwhile, to reassure you that people with your CLL prognostics do well on Ibrutinib, read this reply and my response:
healthunlocked.com/cllsuppo...
Neil
Let's hope I do well. Treatment starts April 8. I feel in my gut that I will have a rough go of it but will be cured someday.
And while most people do watch + wait a long time, a rare few of us go from visit to the primary care doc to treatment in months, which is the case for me. My expectations would have been managed better if my doc hadn't told me the "worst case scenario" was 2 months to treatment 6 weeks ago. Again, I get that I'm the exception, not the rule, but it's sort of a sick joke to me that my GP told me I got the "good" kind of cancer in December.
Let us know how you go with your Abramson Cancer Center appointment. Given the information you have shared, I wouldn't be at all surprised if your Abramson specialist suggests you defer treatment for a while to see if your CLL stabilises.
Also, most do well on Ibrutinib with manageable side effects that lessen over time. They rarely post to forums because there's nothing to write about!
Neil
I had the appt yesterday. His first reaction when he saw 3 cm lymph nodes was "it's time." But I like the doc - Dr. Mato. PS hope the person you posted who had pneumonia is doing ok.
I was treated with FCR by the age of 45. My best advice is to find the information that is relevant and then return to you normal life. Dont hunt for answers you dont need and dont blame every little niggle on the CLL. Carry on with life as best as you are able. Far too many people waste the W+W time worrying. Look at it like this, you will now be monitored more than any other person you know therefore its less likely that you will get any illness and when you do it will be jumped on. You may 1 day need treating but with the speed of change in treatments currently its not worth worrying about treatment because you have no idea what treatments will be used by the time you need it. Its a big shock to get your head round but you just have to live with it, My consultant always says diabetics can die in a day, Cll takes years to get you. Diabetics dont panic like we all do. Its harsh but true.
Dont get caught up in a world of worry, it will only make things worse.Trust me!
Journey well
The bear
Well, I've had 9 days since being diagnosed and I agree wholeheartedly.
A question, I have heard nothing from the hospital since being given the news, I have no idea what my blood count is or what the next step is. Should I be trying to contact a CLL specialist? Do I just wait until I get called for another blood test? Anyone know if Tunbridge Wells, Kent is a specialist hospital? Any info would really help.
Richard
Hemo will send an appointment. Then if another blood test confirms it you might be scanned. Just to see if you have any mass. Then they can work out how often to see you. Im leicester who are great but some hospitals take a while. Remember you have had this thing for years already, a few more weeks wont hurt. If your worried nag your GP for an urgent referal.
Had it for years??? I've had 8-10 blood tests in the last 3 years and only one picked it up!?
I do have business in Leicester occasionally at High Cross.
Richard
Oh and if your ever in leicester you can buy me a coffee while i bend your ear.
It crowds your bonemarrow until eventually it spills into your blood. Thats why we have BMB tests.
CLL doesn't need to crowd your bone marrow before it spills into your blood. Bone marrow infiltration can trigger treatment due to falling blood counts, but many with CLL are treated for other CLL caused conditions while their bone marrow is still working adequately. We are all different...
BMB tests do tell us directly what's happening with our CLL though, with blood tests being more of a surrogate measurement - easier and cheaper to do but an indirect measure.
Neil
Hi richard. I am 42 and was diagnosed december 2015
Hi Richard. I'm 42 diagnosed 4 months ago and on watch and wait. Sorry to hear that you have been diagnosed. You can get done great advice on hear. I recently attended CLLSA meeting which was very informative and beneficial, I would highly recommend attending one. Good luck. Melissa
Hi Melissa, where would I find out where my nearest meeting is?
Richard
Hi Richard. If you join the CLLSA website they will advertise. Dates have not been confirmed yet but I think London in November at some point. They are also planning an Oxford one.
Hi Richard, sorry to hear of your diagnosis. I was diagnosed with CLL this week, three months after giving birth to my baby boy. Cannot fully describe my emotions right now. MBL was picked up during pregnancy. I have no symptoms. Does anyone know whether you're more likely to need treatment sooner if you're diagnosed before the age of 55? I read this but don't know how reliable the article is. Thank you.
Oh bless you Suzejc. What a mixed range of emotions you must be going through right now.
Firstly, please please try not to panic. I know how things must seem to you right now but I promise you, you will feel better than this
You are young and strong. The future looks brighter than ever for us now and is ever changing for the better.
First and foremost DON'T rely on what you read on the internet. Many articles are wrong or out of date. DO find yourself a Dr you can trust, essential. Certainly a CLL specialist is a plus, (particularly depending on what stage you are at) but a day to day 'go to' person is a must.
Make use of this great forum. So many people here willing to help and support you through these early days and beyond. People who feel or have felt just like you.
Write your own post and introduce yourself, I promise you will get some great responses.
You are going to learn to LIVE with this-you'll see.
Peggy x
HI, Can I ask how your getting on Richard? Im 40 and got diagnosed yesterday and going a bit crazy with it all! I do hope your well. Claire x
Hi Claire, I am doing pretty well. My advice to you would be eat healthily, exercise often and don’t drink excessively. I also take good quality supplements daily (green tea extract, turmeric and spirulina. Oh and vitamin D. Can’t say you’ll never need treatment, but if you do make sure you’re in the best position possible to deal with it. In short, be sensible and try and put it to the back of your mind!
Hello! I am 45, live in NY ....eat healthy, take care of myself.... no family history of cancer, Always on top of my Dr appts. I came up anemic at a routine physical in October. Since have been diagnosed with AIHA and very early CLL. Cat Scan and chromosomes all normal , Bone Marrow had atypical aggregate due to para-trabecular location. & Peripheral blood had <1% mono b-cells present. co expressing CD5 & CD23....I am still learning all of these terms and have so much research to do.
I did have shingles when I was a child, and I had 2 outbreaks of hives which were never identified last couple of years which is why prior to this I had hit up every Dr aside from a hematologist!!! I also had an issue with a pregnancy in 2013 where at 20 weeks things went wrong and the baby acquired all sort of issues that came out of nowhere. I did not end up having the baby and after amnio and micro-array & any test i could do (viral panel etc) they never could figure out what happened, no Diagnosis - just autoimmune. So since then ive always thought there was something going on inside of me!! And ironically now I am faced with this. Whether any of it is related or not ill never know. But the term autoimmune has just become a norm for me in the past 5 or so years.
I just had my second opinion yesterday at Sloan and he said hed like to treat my hemolytic anemia with rituxan, and watch and wait on the CLL. If the anemia doesn't take or resolve with the rituxan he said we would then move to chemo. So i guess now i need to gather info , i am hearing and reading about alot of alternatives to chemo and look forward to learning alot from this site!!!
please keep me posted!!
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