I am a 46 y.o. male. I just recently had my annual physical and blood work came back with elevated WBC of 22k and Absolute Lymphocytes of 18k. The doctor said that in 2011, my counts were normal, but were at 15k/9k in Feb. 2015. On my report he put that he suspects it could be CCL, but further tests are needed. These are the tests I am waiting on. All of my other levels are perfect. I have had ZERO symptoms and have been in great health other than one chest cold in the past 2 years. Theoretically, I have probably been living with this for a few years.
I have 3 small kids and I am terrified right now. I want to be around to see them grow up and be a grandfather, and so on. The posts that I have read on here give me hope. I appreciate any reassurance anyone can give directly.
Thank you again and blessings and good health to all.
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baq724
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Sorry that you have been diagnosed with CLL, but happy that you have found our community.
Take your time and browse through the site, and I hope that you make good use of the goodwill of the members on here if anything is bothering you ... there are NO stupid questions, only good people who are more than willing to help.
I was diagnosed with CLL stage 0 aged 47 in 2006, and have not as yet needed treatment. ... 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.
Of course this is a worrying time for you, we all can relate to the ' shock ' of being told that we have CLL.
There is a lot of experience and goodwill on this site, I hope that you make good use of it, if you are unsure about anything just ask, you will not be ignored, you are not alone with your CLL.
Hi - husband just turned 42 (today!) diagnosed 2 months ago while feeling great as a daily runner with no symptoms and we have 2 young kids and know just how you feel. 2 months out I can assure you while it's still pretty awful to be a part of the CLL crew, we're no longer scared. If you do in fact have CLL, just know that once you get through the scary part of test results and finding out about the disease itself, there is light at the end of the tunnel of knowing it's a very manageable chronic condition with a ton of advances being made every day. If you have questions that we can help with, just let us know. And hang in there!
Thank you so much for your response! I am wondering if it is wise to burden my kids with worry by telling them if I am diagnosed with it. Any advice of how to handle that is greatly appreciated.
We have decided for now not to tell our kids until we would start treatment. I actually think our kids would do fine with it, but we have not told many people total and our kids are fountains of information :). In many cases with CLL if you do have it, you are in watch and wait in the beginning anyway which once you get past the stress of it all means nothing really changes other than 3 month checkups.
That's kind of what I am thinking. I will have to do my best to "put on a happy face" so they don't suspect something. They already are asking why I have been so quiet the past few days. I would be interested to hear what your husband's doctor has told him specifically. The internet is a scary place and I have probably overdone my reading and research with statistics and median life expectancies, etc.
Sent you a PM. General theme is do not believe what you read. Hard to gauge prognosis when avg age of diagnosis is 72 and you are in your 40s. Also so many treatment options now vs only FCR just a couple years ago which is less than optimal for older less fit diagnosed patients (don't stress on the numbers!).
I was diagnosed 12/2015 and my son was 16 years old. I ended up diving and in treatment quickly so I had to tell him, but it caused him huge anxiety and he grades were the worst they ever were the second half of his junior year (not a good time to have this kind of drop obviously). His reaction was worst at first when I looked completely fine (was was mine to my own condition) and then we all just settled in and are rolling with things. It didn't tell him that his father told him I had 5-20 years to live which in my case may be true (I'm 17p deleted) but so much was changing and we really don't know, so what is the point of speculating? If I had a less aggressive form of this, I would have waited to tell him, but no one can make that decision for you. You have to do what is best for your family. Just sharing my own experience.
My personal advice would be to live with the diagnosis for a little while yourself (with your spouse, of course) before involving others. Get a better idea of exactly what your CLL involves and come to terms with it yourself. Start educating yourself - CLLsociety.org has a good list of links to reliable CLL specific resources, as well as good information, in addition to the support you will find here. one you understand things better yourself you will be in a better position to discuss things with your children, should you feel that it is appropriate.
As a former elementary school teacher, I can tell you that children pick up on things that you think they are totally unaware of. Age appropriate discussions, if the CLL is affecting your health or even your way of dealing with the stresses of daily life, can be really helpful. Knowing that the doctors have found a reason for ....... whatever is going on with you, and are on top of it can be very comforting for a child, much better than what they will imagine. At that point, for school age children, be sure to include their teachers. They can become a very important part of your children's support team.
In addition to that, back in my early 20's I had chronic mono / EBV viral infection that lasted for almost a year. My doctor said that it would eventually go away and possibly flare up again down the road. Grasping at all of the possibilities here.
I have thought for 18 years that EBV and perhaps CMV the other mono, triggers genetic changes that turn out as CLL in later life.
However, there is no direct association found, but EBV is involved clearly in Burkett's and in Richter's transformations in CLL so something is happening, just haven't found it yet...
There is no causation in CLL , but EBV might increase the risk, if other factors like genetics and the environment trigger it...
I'm sure in the next 10 years or so this question will be answered definitively...
Hi, baq - As a retired elementary educator (and an old mom), if your kids are still young, I'd hold off a bit on telling them. I would agree with Mideterm's comment.
FYI - I, too, had a bad case of mono in my early 20's; had to drop out of my sophomore year of college. It resurfaced about a year later, which leads me to believe it never really went away (this was in the very early '70's). When I asked my oncologist if that would have any bearing on my CLL treatment, I was told no, but that it could have helped trigger it. Guess I continue to pay for that summer of too much partying.
I also do wonder about mono and not just as it relates to CLL. I had it in my mid-twenties and, not to sound like a hypochondriac, have never felt the same since.
Welcome to the club. Being afraid not to see your kids grow up is very normal but CLL is not like pancreatic cancer or some other cancers so once you get an official diagnosis of CLL you will work into acceptance. I talk about having cancer to those who see me because I am susceptible to germs and my oncologist, otolaryngologist and my niece who is a physician have all said be very careful of infection. With CLL one does not want to catch things unnecessarily so I told people that if they have germs I need to know. You will need to discuss infections with your oncologist. I am at stage zero and have tons of energy to date. For now I treat my cancer as another part of me but at first it felt like the enemy within. You will get to feeling at ease with time.
Hi Just reading through this thread, have only just joined and agree that once the shock of diagnosis has sunk in, as long as people that need to know are aware you are susceptible to infection and also may need to have time off for hospital appointments, they don't need to know anything else until treatment may be arranged. I am currently watch and wait - next blood test in four months. Myself, I had to tell a nurse in our office (I work in Occupational Health) as I had just received the flu vaccine (my consultant said it was okay) and the routine accompanying form to add to my file asked about any change in my medical history .... in fact it was the very first time I had uttered the words "CLL" - which was a very strange feeling. She was very understanding / supportive - as I knew she would be - and I now feel so much better. Some of my work colleagues know I have been for hospital appointments and are aware it's a blood disorder but that is all, so I will just now settle down into a routine of work, play and regular blood tests until there's any change. It may sound strange but just saying the condition out loud has really helped me - having only mentioned I have a blood disorderto close family, it now seems more real and I feel better able to cope with things. I have to say this forum is brilliant. You all are very supportive of one another and I will read your posts with interest. I am an avid fan of joining forums online to follow my interests, but would never have guessed I'd be here typing this ten days ago! Many thanks for being there
Sorry I forgot to add I am 61 and suspect this has been developing in the last six months, to my knowledge - or maybe more - my last blood tests before this year were in 2012, four years ago ....
Baq, I'm a 46 year old dad too and got pretty reflective for a while after CLL diagnosis. I'm two years into this and my numbers have ping ponged a bit, edging up but not quickly. Surprisingly it's been less overwhelming as time goes on, as you learn more and find your groove. BTW, for some encouragement, Andrew Schorr, who runs the Patient Power organization, was diagnosed early 40s, when they had just started their family -- now the kids are college-aged! Andrew has some great videos on the site that talk about coping with diagnosis, esp with families...lots of testimonials and great insight.
Welcome to the community of friends. Great replies from folk in the same situation agewise. Small piece of advice, much of the information on Google is out of date, recently there have been many new treatments and steps forward. The life expectancy figures are out of date with the advances that have been made.
Ditch google for your research so you don't scare yourself or start making plans for an early demise, it's not going to happen.
Live and enjoy your life, though we do understand early days from diagnosis are scary, in no time at all you will be reassuring other newly diagnosed Cllers. Some of our best contributors are people who were really panicked when they were told they had cll.
Sorry to hear you have joined us, but as others say above, get out and enjoy life and the kids: you will have a very long time to learn about CLL. It also feels like you are early stage...it would stay that way for decades.
I think of CLL as a set of stairs (with the top of the flight not being a nice place). Gradually, slowly you creep up (though you could remain on the same step for many, many years). As you get towards the top, you get treatment that pushes you all the way back to the bottom of the flight: then the whole process starts again.
I was diagnosed 4 years ago at 52, when kids were 10 and 12: I too was terrified. I then complicated matters by the CLL causing severe AIHA (my CLL is still early stage), which was an order of magnitude more terrifying (this community was a pillar to lean on). However spleen out 3 years ago and all has been great since then. First target is to see kids though Uni, second target is to see my great haematologist into retirement (though I am guessing her age!). Not thought about third target yet....but it will be something around my easing off work!
It does get easier the more you learn, but there is no need to rush the learning. Enjoy life!
Hi there, thanks for sharing your story. I think it is a great idea to have some goals set - as you say, uni for your children and then retirement ... I think it is is best to take each day as it comes. I know there will be bad days ahead, but just gathering the people around you that really matter and getting out and enjoying life seems to be the way forward. Positive attitude is key, I am learning from your posts here.
Diagnosed at 49 when kids were 1 and 5. Now 5 years later may need treatment. 11q del unmutated. see no beneft to telling them. Will cause them unneeded anxiety and ruin their childhood. Let them be children. In my humble opinion you beat this thing by living life full and putting this in on the back burner. They are children. Even on out of town hospital visits i tell them going for business. Preserve their innocence. I have told my 25 year old. Why? In case he faces a similer problem in his life down the road and to be an example to him. But i can have an adult conversation with him. Just my point of view.
I just turned 50 and was diagnosed in Jan this year at 49.....it was very scary for me. I of course got on line and read all the scary stuff out there, but for me I need to know everything I can. I have 3 kids as well, 9, 12, 14.....and 22. I have told my 12 year old because he heard my wife and I talking and asked her " does dad have cancer " so had no choice. He took it well and I tried to assure him it was just a medical issue I 'll be dealing with but had no plans on going anywhere, it has not come up with since. I think he's fine with it all, but I know it scares him a bit...cancer is a scary word. I did also tell my older child since she's an adult and I felt needed to know since she was staying with us just after my dx and I was a mess. I have not told the other two since there is no need to for now. I am also 11q and unmutated but still on W&W for now....hopefully for a while. Newyork8 since you and I are both 11q del and unmutated what treatment do you plan on going with...? also if you don't mind sharing, what is the reason for treatment soon...? you can PM if you prefer. Thanks a lot!
Husband diagnosed age 41 now 47ish. Blood count creeping up only symptoms are increased tiredness and infections take a little longer to get over. We too were afraid and bewildered for a while having two young kids. Only recently told them. We did it in an informal, age appropriate way, something like...dad has a condition that makes him a bit tired and he needs to keep an eye on it having blood tests. If it gets worse he might need special medicine to make him feel better. He's ok and probably will be for years. Mums not scared and daddy's isn't either.
Avoiding the word cancer and reassuring them you feel confident helps them feel at ease. When my son asked if dad was going to die I told him no because if he gets sick he'll take medicine and feel better just like we do. Also I wasn't afraid of dad dying and neither is his doctor.
Talking about it like it's not a big deal helped our kids understand something is wrong with dad without scaring them.
This is our experience and it worked for us.. My husband didn't want to tell them so for years we kept it secret.
My husband used to work 24/7 and wanted to protect our kids financially. After diagnosis he has since cut down from 7 days to 2 and is very involved in our children lives, we simplified our life moving to a smaller house reduced debts and focused on family first. As scary as cll felt in the beginning if it wasn't for that diagnosis he probably wouldn't of made those changes. Taking it day at a time and focusing on family helped our bond grow stronger and cll was that wake up call.
Like I said this worked for my family, it's our experience and journey.
Welcome baq. I'm so sorry you had to find this community, but I think you'll find comfort and knowledge here.
My husband was diagnosed in Feb at 59, two minths after retiring, through routine blood work. He was and is still symptom free.
I feel for you hearing this diagnosis and having 3 small children. We told our 2 adult daughters and it was the hardest thing we've ever done. I wish I'd found this community before we told them. "Cancer" and "leukemial are the only words we tend to hear first, now we stress the "chronic" part! Now that we understand CLL a wee bit more, we are so glad we decided to only tell those near and dear to us. My husband feels just fine, why worry anyone else.
I so very well remember the dark days after receiving the news, those days went on for quite awhile. We are usually a happy, positive couple, but we thought we'd never smile or laugh, or be ourselves again. This community of compassionate and caring people is amazing. Real live people living with CLL and sharing their experiences. They are more informative than any cancer society sight I've checked.
I wish you well in the coming days and years! When the time is right, when they're older and you're ready to share, the right time will present itself to tell your children. Until then,'please visit his site often, ask any questions, just know you're not alone.
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