I'm lorna and I'm 46. I've been told I am very young to have CLL. I wondered if anybody is around my age or was diagnosed at a similar age. I find it comforting to hear people who say they have been on watch and wait for years and still haven't started treatment.
CLL and age: I'm lorna and I'm 46. I've been... - CLL Support
CLL and age
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Lornakatherine1977
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Hi! I was 49 when I was diagnosed and was on wTch and wit fir 18 years. Just started treatment in June of this year.
Thank you for sharing this with me. I hope the treatment has gone well. Take care
Hi Lorna, I was diagnosed in 2019, I was 39 then. I'm 43, finished my first treatment in June...had 3 years of w&w. Hope you get much longer than me. There are so many of us who do go years and years without treatment or never needing one. You might be one of them, why not?!
Hello, thank you. I hope the treatment has gone really well. I am trying to be positive and especially as my youngest child is 3 yrs old. Take care of yourself.
Lorna
The treatment was a roller coaster, definitely not as easy as it looked on paper 🙂but I got through it, I am officially in remission, got my UMRD result and I'm feeling good - it is truly great considering that I honestly felt like I was dieing before I started...I was diagnosed when 7 months pregnant with our third child...he is 4 now 🙂life is good, enjoy every minute, focus on the good things, when/if hard times come, you will deal with them then, one day at a time. Don't allow CLL to take over your life. ❤️
Hello, I’m 38 and 17 weeks pregnant and diagnosed with CLL 2 weeks ago. I just wondered if there was anything that impacted your pregnancy/delivery etc. I had whooping cough combined vaccine last week and told I should get a pneumonia one due to this. Otherwise everyone is saying carry on as normal. Thanks
Hi there! So sorry to hear you are going through this nightmare of being diagnosed when pregnant...it really is unfair on you and your family...it was so difficult to get my head around it all...I hope you will find it a bit easier. I was 39 and 27 weeks pregnant. My pregnancy was very uneventful. I was put on blood thinners - the obstetrician explained due to my age - my CLL consultant didn't understand why but didn't object. Apart from that, nothing else. I was anaemic so had to take iron tablets but it was the same in my previous pregnancies.
I was induced at 38 weeks - again I was told it had more to do with my age - had a natural birth, very straightforward. Baby and myself were both fine. My bloods improved after I gave birth - my lymphocytes went from in their high 40's to something like 16. My Hb improved. It stayed like that for about 6 months. This was 4.5 years ago.
The pregnancy and birth were not different to my two previous ones pre diagnosis.
All the best to you. Feel free to read my other posts. There is also a Facebook group
CLL support group (ages 50&under) with lots of other women who went through a pregnancy with a CLL diagnosis. I felt like a freak as couldn't find any other women at the time I was diagnosed. It makes it easier when you know others have gone through this before.
Hi, Lorna. I am 48 and was just diagnosed in August. I also like hearing about long W&W and (of course) hope to be one of those who never really progress or need treatment. If needed, I hear the treatments are much, much better than they were even 5-6 years ago.
I will admit that I am still pretty scared by all of this. I think it's okay to feel that way. I think it's perfectly reasonable to be scared.
My oncologist has told me repeatedly that this is not a big deal, and that it's not going to kill me. Those of us Dx'ed recently and youngish have a very good chance at living as long as we would have w/o CLL.
All the best.
-Guy
Guy, it’s a natural feeling to be scared. I was diagnosed at 52 and I had a very difficult time getting my head around having CLL for several years then. That was 19 years ago, now I think of CLL as another “chronic” condition. Mine didn’t progress to need treatment yet, but now there much less toxic treatment options if the need arrives. So, try to enjoy the gift of life as much as possible and live well… Peace 🙏
Hi there! I was also 46 when I was diagnosed. Started having higher than normal WBC when I was 42. Now I’m 53 and still treatment free. My ALC has jumped around a little but is still just above where it was when I was diagnosed at around 24k. I live a normal lifestyle, stay active and other than visiting the doctor for vaccines and screenings, I live life normally. I’m very lucky to have a very slow version. I have a CLL specialist at MD Anderson in Houston who consults with my hematologist here in KC. I truly believe that if I ever need treatment, the new treatments out there now will get me to a normal life expectancy. You’ve come to the right place. People here are a wealth of knowledge and wonderful!
hey there,
I’m 38, got three kids, diagnosed 1.5 years ago, probably had it for a while before that, just didn’t go to the doctor. I started treatment three months ago, it’s going well. Your youth can be a benefit in tolerating treatment, and there’s a lot of good options, even for challenging markers like my own. I plan on being around for a normalish life expectancy, and my doctor has told me he does as well. You got this.
Hello, I was diagnosed at 52 over 19 years ago in 2004. Still in W&W. At the time we didn't have all the treatments options available now. Chemo therapy was the most common alternative. My numbers started climbing very slowly for the first 5-6 years, then they were stable for the next 10 years. In the last 3-4 years the numbers in blood started to come down. I haven’t done a CT scan to check nodes, my oncologist doesn’t think it’s necessary as long as my general health is in good shape. I try to eat as healthy as possible, mostly a mediterranean diet, drink only at social events, and exercise regularly… 🙏
Hi Lorna,
I was diagnosed at 43 but probably had it 3-4 years prior. I have been in w&w for 9 years. I am starting treatment in January and looking forward to it.
Hope you have very long w&w!
Hello Lorna, you are definitely in the right place on this site. I was stage 1 in 2009 @43yrs old. Although I had lab changes possibly 5yrs earlier.
I was diagnosed with ADHD in elementary school & I just was a perpetual multitasker 🤷🏽♀️. So I remember working on Wall Street while attending Pace University & the thought of pushing myself through the revolving door exhausted me & that was in my late 20’s. I was always anemic so I blamed that for my feeling. This feeling would come & go but in 2008 on a business trip to New Orleans it was undeniable.
I was working at the VA full time & at RWJBH part time & that pure exhaustion feeling would not leave me this time. I had all kinds of test but was told ‘you’re strong as an ox’. It wasn’t until July 2009 when the Lymph Node popped out my neck & waved. Had the biopsy & by Aug 2009 I had this new secret. I never told anyone because I was learning about it myself. When I heard that ‘its the best cancer to have & 30% don’t even need treatment’, I claimed that I would not need treatment. I went to my Wait & Watch appointments every 3-4 months but those office appointments started to scare me. Just seeing some of those sick people, so I opted for every 6 month appointments. I was a single Mom, working 2 jobs & stable so that is what I did. The mental part of not knowing bothered me so denial worked best for my 13yrs 8mos of W&W.
I found out what triggered my immune responses & stayed away from them like sick people or being in unventilated areas. I worked as a critical care nurse & would wear my personal protective equipment as needed. I would even chastise sick coworkers contaminating common areas.
I found out the hard way that I could not tolerate extreme heat or cold. I stayed in the YMCA Sauna for hours after Aqua Aerobics even though the sign clearly said no more than 10 minutes for anyone with a chronic condition. I left there & could not breathe. I pushed for a CT Scan even though Oncology & Pulmonary felt it was nothing since he could not hear it or see it on an xray. Well it caused a linear fibrotic area to my Right Middle Lobe, lymph nodes clumped up in that area. I pushed again for a Broncoscopy because I said how do we know its the same CLL & not Lung Cancer. It was TB that I had been exposed to as a new RN & treated for in 1990/91. I would get that same respiratory distress if out in the cold with my neck exposed. So I would need a scarve to cover my neck & my mouth because just breathing in very cold weather would trigger that collapse lung feeling.
I also noticed that after my multiple job related injuries that I had a permanent lump near my neck. Right at the area of cervical injury. The lymph would clump up where ever I had an injury. It would point out the exact spot lol. I was heavy after being an athlete & then living a sedentary lifestyle. And after the job ending injuries I was 340lbs. I ran a exercise program at my church & then became an instructor & dropped 85lbs. I later became a Nutrition Coach & went plantbased whole food, raw & juicing. I started treatment in April & am now just adjusting.
Everyone’s journey is different, I opted for long term BTK Inhibitor Therapy. I was in the ER 3X in 3 months with chestpain. It started because I was determined to keep up with my workouts & my 2hr a week classes I taught. Anywho I did 60 min of a moderately intense Cycling exercise & that started the chest pain. I went to 1/4 the dose of Zanubritinib for the next 3 months for my heart & lungs to heal & now I am in 1/2 dose. I put on 20lbs & easing back to a low intensity workout schedule. I dropped everything I was doing & looking forward to picking it all up slowly but surely.
My twin son’s were 14 when I was diagnosed & now they are 28yrs old. I was making sure they would get into the HS of their choice & into careers even if I wasn’t around. I am so grateful for these 14yrs. You will do well & welcome again #GODSPEED🙏🏾
What an amazing 28th Birthday for us all🥳
Hi. Age 47 when first diagnosed. I just started treatment recently at age 61. I felt great all that time despite rising ALC and numerous enlarged lymph nodes. The best news is that I am told I have a great chance of full remission after 1 year of treatment. Hang in there, most months I forgot I had CLL.
HiI was 56 when diagnosed, with a 3 Yr old and 18 month old at the time, 3 years ago. I went straight to treatment 2 weeks after diagnosis at I was ready at stage 4 and virtually asymptomatic. The treatment was brilliant O and I, was in uMRD within 250 days. I take alcalibrutinib twice a day, I have monthly routine bloods and 6 monthly uMRD checks. I have the odd cycles of IVIG and GCSF to keep me topped up. I live a full life as a full time dad to my now 6 and 4 Yr olds, we're all off to Rome in Jan to celebrate my 60th, I plan to see my youngest graduate university 2044...
Hi Lorna....I hope you're ok ...I was diagnosed at 56....I'm 57 today actually and been on W and W from then until now. There is plenty of support on here. I read more than I reply but I can safely say the patients on here know more than my actual GP about CLL. Never fear there is always support , facts and friendship on here 🙏 Gary ( N.Wales)
So very true! I was armed with so much knowledge from this site to enable me to ask all the right questions with the consultant and felt so much more in control of what decisions I had to make when treatment time came.
I was 49. CLL is very different to a decade back. Lots of treatments to manage it long term. Some of the combinations are producing deep remissions, and maybe these will eventually become curative. Stay strong, wait for your treatment plan, and yes you may be on watch and wait. Listen to your consultant, and take 2nd opinions.
My first intro to CLL was from a blood test at the age of 47. Scribbled across the page was “smudge cells, possible early CLL. That was 17 years ago and I’ve been on watch and wait ever since.
WOW🙌🏾
I was diagnosed with CLL in 1999 at the age of 52 but I had the symptoms for some time before that. I am now nearly 77 years old and I am still on W & W. Fingers crossed!
WOW WOW🙌🏾
I was 45 when I was diagnosed. I am almost 56 now and was around 7 years on W&W, and am 11q unmutated. Not great markers at one time. Now on Acalabrutinib (& had Obinutuzumab infusions alongside) and so far doing well. My doctor now and again floats the words ‘normal life span’ but I try not to think about it either way. With the new treatments, I will echo others and say you will most likely be fine for many years to come. Try not to let it be your own mental ’death’ sentence.
Hi Lorna, I was 42 when diagnosed- had just had a baby! I hope you have a long watch and wait 🤞it is tricky having treatment with very young children. All the best to you x
Hi Lorna. My son was diagnosed with CLL this year and is only 32 although he has probably had it for 3 years. He is on Watch and Wait and I am on Watch and Worry but he feels super well and is fortunately very fit. His symptoms are mainly enlarged lymph nodes.
It must be worrying for you too. I'm glad he's fit. Take care.
My husband was diagnosed at 39, although it is now clear he had it for a number of years before that (tiredness and enlarged lymph nodes). On W&W still today at 45 and numbers stable so far.
Hi Lorna, you're in good company here! I was diagnosed nearly a year ago at 49 and started treatment (O&V) soon after - within a few months all my results were back to normal and I was feeling great.
There is a brilliant UK-based CLL support group for the under-60s - the Whatsapp group is fantastically supportive and very reassuring for us newbies. See here: cllsupport.org.uk/informati...
Hi, I've joined that group today. Really supportive Thank you, take care
I was 53. You're definitely too young 😔
Hope you're doing ok
Thank you, so far so good 😊.If you check my posts you will see how I progress because I post my results every 6 months. I can only hope that I keep progressing at this rate 🙏.
I was diagnosed literally two days before my 49th birthday. I had several symptoms for at least 9 years before diagnosis and treatment began in August 2022. I will be 52 in March. But it was determined based on my medical records/history and symptoms over the years that I likely had this since my late twenties. I was sick back then, but no one checked me for cancer or could figure out what was wrong. (Much of the symptoms I have had now I had back then.)So I changed my life, left my career, opened my alternative business live a really healthy life until I had a car accident compounded by mold in my apartment, so it brought on more lymph nodes and illness, leading to diagnosis and then treatment. For me, lifestyle changes made all the difference.
L
Thank you for sharing, hope you're ok
Hi - I was diagnosed (between Christmas and New Year..) 11 years ago at 52. Tricky first year due to AIHA complications - all resolved (to date) with a splenectomy. Bloods been good since then touch wood, so no CLL treatment.
CLL is very heterogeneous (ie was all have our own path) - in the UK we don't test cell abnormality until a treatment is needed (there is logic, as things change over time, so knowing at any particular time does not really help). So we don't even know which branch of CLL we are on, let alone our individual twig.
Quite possibly you won't ever need treatment!
Thank you for sharing. Look after yourself
I was diagnosed at 42. I was terrified. I'll be 48 in two weeks and I'm still W&W with better numbers than I had at time of diagnosis. No symptoms really either. I get blood drawn 2x a year and my doctor asks me questions for 5 minutes and I go home and forget about it for 6 months.
The first year, I was kind of a mess with anxiety. Then I had a baby naturally at the age of 44. I realized my body can still do hard things. I'm not totally broken and I have a lot living left to do. I still have moments of fear but for the most part, my life feels normal. Having CLL always in the back of my brain has taught me to appreciate each day as a gift, make the most of it, take time to smell the roses, make memories, and live in the present.
Oh how supportive. I too had a baby at 42. I really value your positivity about living in the present.
I love having a little one around. They keep us young and give us a lot of reasons to fight if that day ever comes. God bless you on your CLL journey!
That's true! Thank you
I was 44 when mine was discovered.
Hope you're ok
I am, and you will be too. It's a very manageable disease. There are lots of treatments.
Hi Lorna,
Sorry to hear about you having CLL. I am sure it's something you could do without.
I was diagnosed at 42 with stage C and treated the following week in 2005. I'm still alive 18 years later if that is any solace.
I failed to give blood due to low hemoglobin back in 1986 (19 years before) and got a letter telling me to go to the doctor. I didn't bother as I just thought it was my poor lifestyle as a student. Probably saved my life as the treatments back then were hideous.
Good Luck.
I'm glad you're doing well! What an inspiring story.
Hi, I’m also 46, I was diagnosed march 2019, started treatment 4 years later march 2023, and am currently on V&O. I wish you a longer w&w.
I hope your treatment is going well
Yes, I was 43 when my CLL diagnosis I will be 46 in January 2024.
Be strong don't worry and don't stress your self about this CLL.
I hope you're ok and enjoy your birthday in January!
Hello, I was diagnosed when I was 46 years old and I have just started treatment now with 57.
I can tell you that the first year I was in shock and I was very scared until I decided to live without thinking about it and so 10 years went by, I took it very calmly.
I started 3 months ago with Acalabrutinib, two pills a day and without any side effects.
And I am continuing without thinking too much about it.
Dont worry. Good luck to you
Good luck yo you too. Thank you
I was diagnosed at 43 and it looks like i might have had it for4 years previous to that based on old blood tests. I just turned 54 and have had no treatment and am still on watch and wait. I was diagnosed with a WBC of 40. My latest bloodwork last week it was 24. All other readings are in the normal area other than my IgG which is slightly low. New treatments are coming out all the time so I have a lot of hope for the future. You should too.
Hi Lorna, I was diagnosed at 40, have had treatments 3 times, just finished the last in August, feel great all my numbers are normal as of blood work today. Next birthday I'll be 72. All the best to you.
Jerry
Oh wow Jerry. That's amazing. Take care
I was 42 when I was diagnosed. I’m 53 now and still doing fine have had few issues a long the way but nothing that wasn’t easily taken care of. Good Luck!
Thank you, take care too
All of our journeys are different. I was on wait and watch for 12 years. I was only told about CLL because I went to the doctor thinking that I caught mono from my colleague. Pay attention to the posts that are positive. Please don’t focus on the negatives. You are on the young side and you will probably do well on your journey. For most of us it’s just a chronic issue we have to manage. Sending you a hug!💜 Stay well!
Diagnosed this year (Jan 16th) at 47 years old. I can't speak to the years of W&W, but can say it has been an interesting year of learning and accepting this new 'normal' life has decided I needed. This is a super group of people with knowledge, advice, and moral support. I'd be in a corner rocking if not for the people on this website and I'm generally a pretty low stress kinda guy.
Some advice to myself (and willing to share) that I try to hold daily is to be authentically as much of who you are for as long as you can, but don't beholden to those aspects of life that you don't need to keep in your life. I've changed habits and I'm being more careful, but I'm not missing life to save my life. My 2¢.
Thank you, that's really inspiring. Very positive. I'm pretty much the same at the moment and trying hard to not let it dominate my every thought. Take care.
Diagnosed aged 39 in 2014. Had issues with infections for one year prior. 13q, unmutated. Six years on watch and wait. Started treatment in 2020 (BR). Relapsed in 2023. Just started on Acalabrutinib. Told my CLL expert I was hoping for another 20 years. He said he hoped I get a lot longer than that. Since diagnosis, I’ve been promoted a couple of times, got a mortgage, and a new girlfriend. I live a pretty normal life.
I was diagnosed at 47 and am now 67 and have been on watch and wait all this time, having yearly check ups with consultant - my bloods have remained pretty much the same all this time. I hope this helps with your diagnosis as at first it is very frightening. Best wishes
Hi - I was diagnosed at 47 and am still on watch and wait 20 years later - my results have stayed pretty much the same all this time. Best wishes.
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