Hi everybody,
I am a 59 years old and recently been diagnosed with CLL picked up on a random blood test for an ear infection. I have had the report from my consultant that my white cell count is 22.6 and have no B symptoms ? He believes I’ve had it for 12-18 months without me knowing. Is there any positive outlook going forward as I’m shocked and worried as would anyone.
Thanks in anticipation for any experience or advice you could give
Hello Lennc
Like us all we were in a state of fear , panic , worrying about the what if’s.
That being said in most cases CLL is a very Indolent cancer. In a nutshell here are the statistics 1/3 of people need treatment at diagnosis, 1/3 may need treatment in a decade or more 1/3 never need treatment. If you did need treatment there are a wide range of oral pills you would take to put you in a very long remission. Try and relax , see a Cll specialist and I’m sure that specialist will put your mind at ease. Your going to be ok this is a chronic condition like high blood pressure or diabetes.
Best wishes
John
Thank you for your kind advice, the strange this I feel perfectly fine, hardly drink, never smoked, regularly exercise but I suppose it’s indiscriminate but thanks for replying so soon
I’ve had it for 31/2 years and don’t have any symptoms. I hope it stays this way for decades. With the new non chemo treatments available today that put you in remission if needed for a very long time is great news. Just imagine what medication in trials now or in a few years that may just be a cure. Although we don’t want this chronic condition the future for us is very promising. Hold you head high and know you’ll be ok
John
Yeah, I've been where you are. It is commonly picked up through blood tests for other things. I'm on w+w about 18 months. You'll get periodic tests and reviews, its likely to increase slowly. Try and forget about it, but be mindful of infections. Thats a whammy which wasnt explained to me at diagnosis. Still early in youyr journey with years to go possibily but just beat in mind you have an abnormal immune system.
Good morning and warm welcome to you. Typically CLL/SLL is a slow progressing indolent disease. Its a bit shocking when you get the innitial diagnosis, I know. As I got mine just about 2.5 years ago. Lots of treatments out there now for when and if they are needed. This is not typically a disease that has to be treated right away. Its a perfect disease for procrastinators....
Relax, breath and read a lot on this forum. You will gain valuable knowledge and support from others here.
READ CURRENT INFO as the landscape changes quickly. Current drugs have really changed everything.
All the best to you and I will let others here chime in.
Thank you for your speedy reply, feeling less anxious already with the two replies I’ve received so far
Also a very important note … stay off Dr Google. Google is filled with miss information and outdated information. Look at patient power, LLS Society you’ll get great information. And in my case this site is the best real word bata base from actual people that have what you have and can only relate to how you feel emotionally.
John
I have as I was a really worried so will look at where you suggest, thank you 👍
Just noticed that the sites John mentioned are US ones. In UK the CLL Support, Leukemia Care and Blood Cancer are the main sources of information. There are regular zoom webinars that will be posted here. But after you have gathered some information and have stopped feeling like a rabbit in the headlights go away and try to forget about the diagnosis.
Colette
My mother got diagnosed almost three years back. We all were worried sick. But by grace of god. No treatment has been needed for her. Just routine multivitamins and stuff. Don’t worry, things are going to be good. Stay positive and eat healthy. Nothing else is needed
Thanks very much, so much positivity I’m feeling on here even though I’m new on here
I am 63 and have had cll for 20 years. After 9 years I had chemo and 8 years later I began another drug. 1 tablet a day. Medication has changed so much. Who would have thought that you could take a tablet.I take meds for other issues and get tired. Thats why the advice is to let the consultants decide when to treat in a few years and enjoy feeling well.
Lead a normal healthy lifestyle and importantly make sure you have vaccinations. Your doctor will tell you which ones you need. Have the covid jab.
Take care, Anne uk
I was dx at 52 and didn't need treatment until 63. Felt perfectly fine all those years. After the shock wears off, you will be ok & just go for ur every 3-4 months check ups. After awhile they become routine. My hematologist was great all those years. My WBC was 225k when I was ready for treatment. My Dad never needed treatment. 🙏💕
That’s fantastic, just want to see my daughter get married, all sad thoughts like that and others play with your mind, thanks for replying
We have all been thru those thoughts. It gets better. My hematologist said....just live ur life & enjoy....see ya in 4 months. And that was my start. That was 15 years ago. 💕
OH I know that feeling my daughter was 13 when I was diagnosed. Before I was well informed the only thing that ran through my head was , I wanna see her graduate from Hight school get married and so on. I now know I’ll be around to see her kids kids , I’ll be about 90. I’m 50 now so another 40 years is good for me 😎.
John
My daughter is 26 and here’s me worried sick. For you John with a daughter of 13 at the time of diagnosis must have been horrific. The good thing is you stayed strong and hopefully I will get there after getting over the shock the last 2 weeks 👍
It was tough to think of even though I learned this is a chronic condition that may never need treatment, and I know if treatment was needed I’d be fine. But you’ll have your ups and downs worrying for some time but you will learn your coping skills. It took me a long time to grasp the reality that I’ll be around just fine, And so will you.
It’s fairly common to be diagnosed with a blood test for something else. New treatments are amazing, but you may never need them.
Just a word of caution as you had an ear infection. Some of us suffer with ear and sinus problems so if you think anything is becoming a problem ask your GP for antibiotics and don’t let them fob you off ‘it will go away ‘ as I had until I stood up for myself.
You have found an excellent site for information and support.
Colette
Hi Lenn, Yes, plenty of positivity! Not just here on this forum either! My husband was diagnosed last november. We have been through the fear and panic stage and and because of God, this forum & our Doctor, we are moving forward with plenty of optimism. I am going to deferto the pros here so you don't have to hear me ramble lol. Just know plenty of prayers sent your way. Hubby is in watch and wait. Diagnosed as you were, during bloodwork for another issue. Some swollen nodes in neck, chin area. No symptoms. Be well~
Thank you 🙏
Lennc - Welcome but also sorry to hear of your diagnosis. You made a wise choice to hook-up on this website as you already have seen by the great replies and support. Your bound to get many dozens of more great replies and suggested information to read and other awesome tips.
When I was dx last Sept with CLL I too was shocked by the big C thing but my CLL doc helped by saying “you’ll probably not die of it but with it”, n relax it’s typically a long journey, sometimes treatment-less or a long wait n watch period before great new treatments. That’s all good to know.
As for the CLL readings, I suggest Cajunjeffs “CLLfor dummies” pinned on this website is where you’ll find em and very informative/easy to understand writings about this weird cancer and more plus it’s entertaining reading as well. Jeff has a unique gift of writing. There are plenty of other good reads pinned on this website too.
I’ll checkout by too saying that CLL is a journey, n try not to think about it as much as you can, get a great CLL doc to check on you/guide you, and by all means move on with your life and look forward to future weddings to be a part of! You’ll be fine.
Don’t ever hesitate to ask questions on this site, a lot of very smart people can answer them and very well. Good luck forward!
Lennc,
Here is the "CLL for Dummies" post series introduction by Cajunjeff, healthunlocked.com/cllsuppo...
which is in our Pinned Post section, where you'll find plenty more helpful posts: healthunlocked.com/cllsuppo...
Neil
When I was diagnosed 3 1/2 years ago I hit rock bottom like I've never thought I would experience I never thought I would be diagnosed with any cancer but there I was 1st one in my family. My anxiety and depression was so bad I couldn't get out of the dark hole I was in for about 2 months. No eating, drinking, sleeping. Today I have my good days and my not so good days mentally. But I'm happy to say that I have more good days then bad. My family and this forum among others have helped me tremendously. You will get there too (I didn't believe I would but I did) I hold on to the fact that there are alt of better treatments out there and we have so much hope for the future🙂.
Thank you 🙏
Hi LenncI can totally understand your fear and shock on diagnosis of CLL, I was told on feb 2020 that I had this disease and was on W&W until I began treatment on July 7th this year x I was lucky to get on a clinical trial which has a fantastic remission rate. My advice is take deep breaths, talk to close friends and family about it, do nice things and stay fit, it’s a tricky one as it’s invisible so inform yourself but not with Google I frightened myself with that 😀I have full faith that these new treatment options can push CLL into remission and I will never have to deal with it again 🙏🏻
Best of luck with everything
Lu05
Hi. Welcome to the family. Diagnosis can be devastating and questions abound. You are in the best place for support and advice so ask questions and share your thoughts we are all here for you. I was diagnosed in November 2015 when admitted to hospital with pneumonia. As stated by others there are several treatments available when that time comes. Best wishes.
Lennc. I was on W+W for 12 years and started with the same counts as you. Each of us is different regarding the progression of the disease, but just wanted to share my experience to give an idea about what can happen. I started Ibrutinib treatment a couple of months ago and fortunately for me it hasn’t been a big deal (no major side effects). Hope this helps.
Thank you 💙
Hi Lennc,Like you my CLL was diagnosed after a routine blood test and my GP sent me off to see a haematologist where I was told I had CLL in not the best manner. I was also 59. I’m 8 years down the road and still on watch and wait plus a lot more knowledgeable about my condition. This website is so useful for information too. I soon realised that being under a general haematologist wasn’t the ideal place to be, especially after realising that I was being given misinformation and in a letter to my GP of which I received a copy stated ‘that I asked rather lot of questions’ plus the ‘consultant’ I had been seeing wasn’t in fact who I was lead to be who they actually were…
I went to my GP who make a referral for a ‘second’ opinion to a consultant CLL specialist and there I’ve been for the past 6 years. The difference is amazing and I also have a specialist nurse who I can call if I have any problems. This has happened a couple of times and I’ve been seen quickly and on one occasion immediately so it has really benefitted me.
I live life to the full and make the best of each day plus enjoying the family and grandchildren. Until Covid came I was travelling all around the world apart from countries that require a yellow fever vaccination-that’s a live vaccine and one we cannot have. I’m still enjoying life and can’t wait to travel again and in the meantime it’s back to staying in the motorhome in the uk. I’m hoping we can manage the Netherlands next year to see our Dutch friends as we normally visit them every year.
Enjoy life and as long as you’re on watch and wait and not receiving treatment, life is for living!
Best wishes to you and stay well, take care, don’t worry yourself and be positive!
Keep wearing the mask though! I am!!
Tingy
Like you, I was diagnosed aged 59. I'm 73 now, and apart from fairly frequent blood tests, and expensive travel insurance, I have lived life more or less as I would have done without the diagnosis. I did have chemotherapy (FCR) over six months, four years ago, but that was my only treatment so far. I have read recently that life expectancy with CLL is about the same as it would have been without. Of course, we are all aware of our vulnerability - especially during the current pandemic. There is a lot of hope (and useful information) to be found here in this forum.
Best wishes,
John (in Yorkshire)
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