Hi everyone, my dad (almost 65) was just recently diagnosed with CLL. He was told it was suspected 3 years ago but was just diagnosed now. I made the mistake by googling this diagnosis and am sick to my stomach reading the life expectancy. I still can't come to terms of his situation and am in total disbelief. My dad is being positive but I can't stop thinking about it. I was hoping someone could shed some light on this diagnosis.
Thank you in advance.
I'm glad you've realised your mistake, which you've quickly corrected by coming here 
. Because CLL is a chronic illness, it takes a long time for improvements in survival times to show up in the statistics. There have been huge treatment breakthroughs in the last 5 years or so and CLL is becoming yet another chronic illness which, with the knowledge you'll learn here, increasingly shouldn't make much difference to life expectancy.
Have a look through our pinned post section for helpful information
healthunlocked.com/cllsuppo...
You have plenty of carers here to accompany you in supporting your Dad and we have quite a few Canadian members to guide you through the differing levels of health support provided in each province. Check out your Canadian advocacy/support charity too: cllcanada.org/about-us/
Neil
Good morning,
When l was first diagnosed in 2014 (I'm still in good health), I met a lady in hospital that had been diagnosed 25 years earlier..... She was still in good health..... She was having her yearly CLL blood tests done.......
Your dad may be that lucky..... He may be on W&W for years....
Welcome to this forum - you are in the right place, so forget Dr Google! He is very old fashioned and out of date. Please don’t worry,. Your father may never need treatment, or it might be years away, when new and better treatments will be available. I am being treated now having been diagnosed back in the early 2000s, and am feeling pretty good all things considered. There have been many new and better treatments over the last few years, with more in the pipeline.He is lucky to have a concerned daughter to rely on, so ask your questions on this forum and you will get sensible, up to date information.
And try not to worry!
I live in the Niagara area and was diagnosed 7 years ago, also in my mid-60’s at the time. I was given a limited life expectancy. Seven years later, still with no symptoms, the outlook is much rosier.
A number of meds have been developed in that time, more are coming and for most of us, chemo has been made virtually obsolete. When the time comes and it may be 5-10 years away, your dad might have to take a couple of pills and go for blood tests every few months.
Cancer care is wonderful in Canada, especially if you leave in or near any medium to large sized city. Most of the treatments you read about on this site are available, usually for free, in most of our provinces.
As my cll specialist recently told me, it’s unlikely that cll will get me in the end. It’s more likely that I will pass away (hopefully a long time from now) with cll rather than from cll. It truly has become a chronic condition for most of us.
So, try to not worry, asks lots of questions, be supportive of your dad, ignore most things you Google (generally out of date, incomplete, misleading or outright wrong) and try to enjoy living one day at a time. Best of luck to your dad!!
Your dad will probably outlive his friends & relatives. My Dad had it 30 years with no treatment. I have had it 15 & in remission 3 years. Doing great. I hope your Dad will be on W&W a long time. 🙏
Thank you so much everyone for your kind words and sharing your own personal stories. The diagnosis is a lot to take in but hearing your stories definitely gives me a more positive outlook. The only good google did in my case was bring me to this forum.
Good morning!! You have learned a very valuable lesson. Here is where you want to be.
I goggle a lot of things but CLL is just not one of them.
I have been diagnosis for 32+ years and I am her to tell you I am not planning on going anywhere any time soon.
My thought at this time is you might want to seek out a Leukemia specialist or even get a second opinion from a hematologist/oncologist as I was given 3-5 years and and I am still here healthy…CLL now days can managed.
Keep a copy of all testing and all office notes. This will be a full time job as he advances but get a system and keep it simple.
Remember we have some very intelligent people in this community that will answer and and all questions you have or direct you to where to find the answers.
Welcome to you and your Dad and we are in your corner all the way!
Panz 🙂🙏☘️💕
Hi Rubymom,I'm 73. When I was diagnosed at age 59, my GP said I had probably had CLL for years - even decades! I was a bit shocked when I read on some web site that the median survival time was 6 years. In fact my first post on this group was "The median isn't the message" which is definitely worth a read (you can google it). It's not about CLL in particular, but more about the unhelpfulness of those 'median survival' statistics. It is vital to realize that not only is your Dad likely to have a normal lifespan, but that in addition, there are very rapid medical developments in this area. This means that life-extending discoveries are being made all the time. A cure, or something very like it, is quite possibly just around the corner. Your Dad is right to be positive - quite apart from anything else, being optimistic is likely to improve his general health.
Take care,
John in the UK.
Google is really about 7 to 10 years behind what has transpired in the last couple of years with CLL treatments. Google gave my wife two years to live. That was 6 years ago and my wife has been in remission almost three years now due to the new treatments with a pill. CLL is now treatable for most like diabetes. You may not cure it, but you will live well with it.
Welcome, and thank goodness you found this forum…the people here are amazing!They will answer your every question and are extremely knowledgeable.
Everyone has felt like you do now and you’ll soon discover that you don’t need to feel as worried as you do now. The main thing, at the moment, in my humble opinion, is for your dad to keep away from coronavirus.
Take care, stay safe,
Fran 😷
Replies are awesome from this HU (HealthUnlocked) website Rubymom! A very smart move you did to visit this site and …. welcome! Stop by often, you’ll learn a lot that may help your dad out and do post questions anytime. Those questions might help others too.
Many of us CLLers fell into the Google trap ourselves, me included, Googling the “life expectancy” bigtime question was my first post. I’ll never forget the support n wisdom from so many great HU folks on that question it was amazing, just like your seeing.
Now that you know that was a mistake search, you can move on knowing your dads situation is not that bad and that science has made great strides to help CLLers live a long life.
There is so much to learn about this quirky cancer but this website has tons of information. I recommend you and your dad start by reading CajunJeffs “CLL for Dummies” pinned posts on this website. Plus there are many-many other fine pinned posts from very smart HU “Admin” folks (and others) on a host of great topics.
Take it all in slowly there’s no rush. For most folks it’ll be a cancer that it takes many years (or never, about 1/3 cases), before treatment is needed.
Hang in there! Appears you are supportive Rubymom n that in itself is a huge plus for your dad in his CLL journey.
Welcome to the family. The learned people here will answer your questions or advise where to get answers. I guess that you have learned a valuable lesson by realising Dr Google is not the way to go. Best wishes.
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