Good morning. I was just wondering if anyone that has CLL on this forum is my age that would be willing to discuss their fears and concerns about there family jobs and how they feel. I’m 46. Thank you
Anyone in their 40 on this form. : Good morning... - CLL Support
Anyone in their 40 on this form.
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Jenny2020
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I am a few years older than you (49), but was diagnosed at 47 and started treatment (Ibrutinib) a year later at 48. The hardest part of my diagnoses was telling my kids and my mother.
I generally do not tell the people I work with about my condition unless it's necessary. My boss knows, a few other people, but that's it. As my lymph nodes grew (they were pretty big before I started treatment), people could see something was wrong, but generally didn't bring it up.
Unlike a lot of people who appear to want to delay treatment as long as possible, I wanted to get to it. Although I generally felt fine, the enlarged lymph nodes were becoming an issue and I wanted it resolved, so I was more happy than scared when treatment started.
How did you find out you had CLL
I notices a few small bumps on my neck that turned out to be enlarged lymph nodes. I was then sent for blood tests and WBC was around 19. Within a year, the lymph node clusters were the size of golf balls and my WBC was in the 90's. Started treatment last May and feel fine.
Hi. I was 48 when Dx. I’m 50 and on W/W. No treatments. I feel fine. WBC is 34. Still low I have heard. Still worry but trying to relax.
I am 49 (male). Diagnosed in 2016 at 46. I found out I had CLL from a routine blood test. Abnormal blood tests indicate that I began the early stages of CLL around 2012-13. I ignored the requests to see a hematologist in 2015, so I should have been diagnoded earlier. Diagnosis was difficult on me emotionally, but this forum was my saving grace (plus some anti-anxiety meds). People here are so knowledgeable and kind. They talked me down from the ledge. CLL is such a varying disease. I am extremely lucky. I am 13q and mutated and have yet to need any treatment. My last appt two weeks ago, my ALC was at 32. It was 19 in 2016. I know because I am so young, treatment might be in my future way down the road. I still feel good and remain active. Best advice I can give you is get a CLL specialist who will work with your local hematologist. Don't consult google. Dr. Google has a bad bedside manner. I have only told a select few. Treatments are improving so much. I truly believe that even those of us who are young and newly diagnosed can live a normal lifespan with CLL being a manageable disease. Just stay on top of other appts. Dermatologist, mamograms, colonoscopy, etc. Ask us anything you like! You're welcome here!
Hi Jenny
I was 52 when my sister my brother had passed away with leukemia I promised my sister I would check it and then I was diagnosed when I was 53 almost 54 years old it has been a roller coaster of a ride. I will be 59 in April but I was stable for all those years until now!!
I’ve been on Imbruvica For about a month now and it seems to be working, it’s very scary to find out that you have blood cancer i have anxiety. Went through so many tests!
I’m here for you
talk to you soon
Little dab
Jenny,
I was 39 years old when I was diagnosed. My husband had just passed away from a long 10 year battle of illnesses and we had 3 children under 12. It was a definite blow to learn about my condition. I worried for my kids because they just lost a parent. I was one of the lucky ones who were on W&W for over 15 years. My kids grew up and I am now 56 years old. I did have treatment with BR but I could only tolerate 2 cycles. Everything was good for 2 years but it is back up again and I am once again facing the probability of treatment starting in the next few months and evaluating my choices.
I believe that you must make the most out of life whether you have any disease or not. I count my blessings and not my tragedies in life and that has helped me deal with everything I have been through.🙂
I’m so very sorry about your husband and all you’ve endured. I think that’s the phase I’m at is all the bad rhat I have dealt with and now this. So I do feel sorry for myself a little. But I think that’s to be expected. I hope the anxiety of it all calms down. I just can’t get it off of my mind and all the fear I have
Totally understandable and we have all been there. Don’t beat yourself up too much. This is a stage of expected emotions. But please remember that This does not define who you are!
I agree it's the hardest part of dealing with this the psychological aspects are not easy i was diagnosed in 2017 and still struggle emotionally with all this.
Jenny,
I was 47 when diagnosed and was told I had most likely had it five plus years or so before diagnosed. I just turned 78 and I am doing great. I am afraid that anxiety is the name of the game and it will just follow you all around. But it can’t rule your life. I work until age 72 more for peace of mind the money. F I kept my mind and hands busy it gave me less time to think all the what if’s!!! I have had treatment of Leukeran for off and on for 17 years and had Imbruvica for 6 months when they pulled me off due to two types of pneumonia at the same time in both lungs. I am currently back on Watch, Wait-and Worry and that is a super great place to be.
I do receive IVIG infusions every 4 weeks as my immune system is almost none existent. But life is great! Panz 🙏☘️💕😍
Thanks for sharing Panz. Wow, well done and I'm fascinated to understand a little more about how you have managed to work until 72. I have to be so careful about catching viruses from other people and especially our grand children. In spite of being quite careful I had 4 bad ones over 2019, and am flat on back for 2 or 3 weeks each time (chest infections often, etc.) In between I'm okay and then I start thinking about going back to work but can't see how that would work when the next illness hits and I can't show up for several weeks? How did you manage this?
PacificBlue...We seem to be in the same place...., as far as, getting sick a lot.... respiratory and sinus infections. I get fevers for about 2,, sometimes 3days..about every 2mos..unless I get a fever from whatever it is that I catch.
I live in the U.S. and am on Permanent Disability. I have a horrible back from a motorcycle accident in 1986. I worked for quite awhile after 3mos of operations and hospitalization.
That..along with the CLL/SLL
(started in my bone marrow and spread to my Lymphnodes), and the extreme anxiety and depression associated with the Cancer diagnosis made me eligible for State Disability plus long-term disability through my work.
It's enough to help with the household bills but not enough to cover the Multiple Specialists I see.
Fortunately, Roswell Cancer Institute, here in New York, works on a sliding fee scale, as does my local hospital/E.R. They don't advertise this but I'm glad that I asked the billing department.
I wish I could atleast work p/t but I'd get fired from having to call in sick a lot. Yes, anxiety and depression are an issue for me on those days that I am stuck in bed. I do better emotionally when I'm able to keep busy.
Had CLL since 2011/2012 and still on wait and watch aka wait and worry. White blood cells go up and down but average 36,000-38,000. Good luck. You're in good company.
thanks for sharing. it is a weird thing isn't it this wait and watch. In most cancers the response is to treat as soon as diagnosed. remove that growth, cut out that melanoma, etc. But with CLL we know we have bad things flowing around our bodies with our blood but unless they cause a problem we don't do much. I'm still not completely at peace with this concept but I do trust the advice of my oncologist. And yes this forum is great as so many others have similar experiences.
That’s a long time. I hope I’m that lucky. I just don’t know how to cope with all of this
Jenny, have you tried CLL Support Under 60s Club. They have a WhatsApp group.
No. Where do I find that out
CLL Support is a patient led UK Charity supporting people with CLL and SLL.
A search under CLL Support will take you to their website where you can find out more about the Under60s club of CLL Support members.
Here's the website link to the under 60 club
cllsupport.org.uk/informati...
Just above that you will read "We have a very active on-line forum, HealthUnlocked, where you will find support and knowledgeable advice on all things to do with CLL. The site also has a very comprehensive resource of CLL information, which is updated regularly."
That's this forum!
healthunlocked.com/cllsuppo...
Thank you
I'm 40 now, diagnosed at 39 but likely have had CLL since I was 36.
My initial reaction was panic. I knew nothing about this disease, but you hear "leukemia " and instantly think death sentence. Thankfully I found this group though and have learned so much.
I have 4 young kids and I have made it my intention to always live my best life for them, no matter how crappy I feel.
Carol 🇨🇦
Hi Jenny2020... i'm from the 1973 promotion too... 46 yo here, was diagnosed 1 1/2 year ago. i'm from Montreal Canada. Do not hesitate to contact me for a chat! 
Jenny2020,
I am 43. I was officially diagnosed around last January at the age of 42. I had been battling severe depression and then finally saw a doctor. Before giving me meds, they ran routine tests which came back abnormal. My ALC was around 26 and the test showed smudge cells. I lived with a self diagnosis for a few months until I could see an Oncologist and get a proper diagnosis. According to my doctors, I am in the intermediate risk group. del11, del13, unmutated. My ALC went down to 22 for a while, but has been trending upward recently to the low 30s. I am on Watch and Wait and my most serious symptoms so far are bruising and extreme fatigue. I went from working out 6 days a week and hiking regularly to having to push myself just to occasionally get on the treadmill. The hardest part for me is not feeling like myself and worrying how much worse it might get. I have kids and work full time, so I always want to be at my best. I often spend evenings and weekends sleeping, but the severity of the fatigue seems to come in cycles, which have only worsened with time. There are times when I wonder how much longer I will be able to continue working full time without treatment, but I don't have much choice. Honestly, I am pretty down about all of it. I know that there are good treatments out there and that the prognosis for most is rapidly improving, but I just keep feeling myself getting worse with little to help. Try to stay strong and find a good support network. I am truly sorry that you and your family have to go through this. Feel free to message me if you ever need someone to listen.
I totally relate to feeling down and almost detached from who you were. There isn’t on 1 min of any part of my day that I feel like myself due to the fear and anxiety of this and the unknown and trying to get it all understood. We have a very similar situation as it took me 45 days to get an exact diagnosis Injust
Found out this Monday and it’s atypical CLL. Which I worried about that. But he explained to me why it was atypical so I’m not so sure that it has much to do with my prognosis. But obviously we are all different. I want to believe on my heart and gut being younger with all of this and all the new possibilities of the drugs now which they can’t predict certain os due to them being so new but I hope when it’s time for our treatment we may have even better alternatives and or a cure. Who knows. But we have to keep the faith. I know I have annoyed everyone on her and repeated questions and ask silly wines to some but at the end of the day anything to have a shimmer of hope and comfort is what I do.
No younger 31.
Do you know if the 11q people talk about is the same thing as 11:14 on a fish study. I’m trying to figure out my fish reaults
i believe it is the same yes.
Actually I just found out it is different just so you know that as well. I’m new to all of this. 11:14 is mantel cell and the ATM on my fish study is the 11q. Someone on her just told me that. So I’m just trying to learn all of the terminology to figure it out. Thank you for responding
Hi Jenny,
I was 48 when first diagnosed during a routine blood test. I have been in watch and wait for 6 years now. My hematologist during the first year was already talking about treating me. So, The best thing I did after that was find a CLL doctor. They are able to help you with so much information. I also found health unlocked and learned a lot. The people on this site are all very nice and helpful! I continued to work and raise my children. But now since I’m an empty nester and not working I think about my CLL a little more often. I would definitely keep busy and learn more about CLL and what to look for and I think that will help with the worrying. They say Knowledge is Power! I am 13 q and 17p and IGHV mutated. Good luck, we are all in this together.
Sheryl
I don’t know what 17 mutated is. All I know is my TP 53 was normal so I don’t have 17 deletion or any other markers. Not even the 13q. It was normal. Which I know is a better prognostic factor. I have a CLL specialist now just saw him Monday he’s the only one in Indiana where I’m at. So he is my second opinion. He specializes all of this and spent 2 hours with me to explain everything. So I’m so blessed I have him. Of course that was a lot of info to take In and I had more question after the fact so I come here. To try to find comfort and hope with my diagnosis to get me through a little bit easier
Hi,
I think I wrote that down wrong. I have 17p deletion. I definitely think that will help with having a good doctor who spends time with you. I have a CLL doctor where I live now but he only spends about 10 mins with me now. Sometimes I wish it were longer.
Take care!
Sheryl
Same here, unfortunately. Dr.Hernandez is supposed to be THE EXPERT regarding CLL and SLL but his bed side manner sucks. The nurse asks a lot of questions and types Everything in the computer but she isn't allowed to answer many of my questions....and apparently my Haemotologist is too busy and too egotistical to spare more than 10min. Indeed, very frustrating.
Eat healthy food more green vegetables and citron fruits , peace of mind,and exercise daily.
No longer in my 40s (turned 51 last week), but I was diagnosed around my 37th birthday, so spent my entire 40s on watch and wait.
I found out I had CLL almost exactly the same way as trackrat, above. I noticed some small bumps in my neck, went to a doctor, was sent off for bloodtests, and then received the diagnosis. Unlike trackrat, my bumps have remained the same size ever since, and I've never needed treatment.
I've noted this next point in the forum before, but early on I was fairly open about my diagnosis. However, I discovered fairly early - and the hard way - that gossip can lead to misunderstandings (I attended a conference where colleagues expressed shock that I was still alive), so now I'm much more cautious. In my current job, not even my boss knows beyond my noting that my immune system is a bit wobbly.
Each of us is different, and my experiences should not be taken as typical or indicative, but CLL has had almost no impact on my job. I'm an archaeologist and heritage manager, and since my diagnosis have lived in Australia, the UK, the UAE, and Egypt, and have also worked in Oman, Bahrein, Venezuela, Argentina, and Chile. I'm currently looking closely at a project in rural Paraguay. I'm fortunate that my employers in my current job offer comprehensive insurance that covers pre-existing conditions without any questions asked (except in North America; but can't fault them on that), but even without that generous insurance my CLL has not limited my career.
Now, that might be about to change. In two of the last three winters I've had a fairly rough time with common colds and bronchitis, and my CLL specialist has also referred me to an immunologist who's packed me off to Egypt with back-up supplies of antibiotics to take at my discretion. I have had to use one of my courses. I don't think my CLL specialist or my immunologist would want me to go to Wuhan province right now, and they might baulk if I cheerfully mention the monsoonal climate of rural central Paraguay to them later this year.
But the moral of that ramble is... by all means be concerned; and don't take your condition for granted; but don't think it's necessarily going to limit you either. A diagnosis in your late 30s or 40s needn't stop you from doing the things you love.
I was diagnosed at 32 years old just after a preop for an ankle surgery. I was p53 mutated so progressed very quickly and went into the Ibrutinib phase I/II trial as my first line treatment. I stayed on that for almost 8 years with great success and have been on Venetoclax for almost a year and so far, it is working very well. Definitely some ups and downs along the way, but with the exception of more doctor's visits and tests than most people, I have lived a very normal life. I'd also like to add that at no time in the beginning after my diagnosis was any physician saying things like "there's a reasonable chance most CLL patients can live normal life spans now". Sure, there was optimism then, but now, there are years of inhibitor drug data behind us which indicate that sequencing and mixing the various novel drugs could in fact produce the longest response durations that we've ever seen.
That’s greAt news to hear.
I was 52 at dx., now 62, for the most part kept it to myself other than fam and a few close friends.
I don't really count, as was 51 when diagnosed (after blood donation place refused to take my blood as HB was too low - go and see a Dr they said!). My kids were 10 and 8. Only a few people knew and I did not tell my kids. The diagnosis (and an opportunity) did prompt me to change jobs: I now cycle to work instead of spending 3 hours/day in a car - lovely!
Following year I had my spleen removed due to AIHA (caused by CLL), though I just told my kids that my spleen had gone wrong. I mentally set myself a goal to see them off to Uni.
9 years later, all good. One kid at Uni, another should be this coming Oct. So I am re-setting my goal to ensure I am around after my consultant retires (though I am only guessing her age!). My kids did find out last year (accidentally a friend let slip): much to my surprise, they showed concern! But by then I had 8 years of blood results to show them CLL had not progressed, so nothing to worry about. I am now glad they know ( friend forgiven) but super glad I have evidence to stop worries.
Our paths are all different, but I hope you too will look back in 10 years time and think 'why was I worried'!
I am 53 now. But was diagnosed at 40 so i understand where you are coming from.
I have seen how far we have come with new treatments over last 13 years. I do remember feeling scared, overwhelmed and being fearful about everthing that day. I know there is no good time to get cancer but you have some great treatment options out there and they are only getting better. I know first hand how cancer can effect you financially, socially and the fears you have. Remember, although money is definitely a stressor , you have one job take care of yourself , fight like hell and talk to someone .
Good luck
49 diagnosed a year ago
Watch and wait
Kind of annoying that my shirt collars are rubbing on my large lymph nodes.
Other than that just waiting for the day I need treatment.
This message board is really help me. Although I never replied before I usually just read everyone else.
It’s comforting that we all share the same symptoms and feelings
Hi Jenny,
I am 27. Unfortunately, I am trapped in a 60 year old body with the mind of a 22 year old.
Good luck with your conquest. I wish you did not have to deal with this disease.
JM
Hi Jenny, I am 49, 50 later this year, but still technically in my 40’s and hanging on to it 😂
I was diagnosed at 38. Was on W&W til 2017, then had FCR (6months)and now back on W&Wait.
Initially on diagnosis I was so worried for my kids.. one that I wouldn't see them grow up/ be there for them , and 2.. that I would pass the CLL to them.( I still worry about that but try not to think of it).
I guess the only advice I can give you is to take inspiration from others that have shared and see how well they have coped. This forum is great for advice and support. I have learned so much from this , much more than I ever learned from my doctor/ consultant.
My thoughts are that I could worry about CLL causing my demise but hey, I could get run over by a bus tomorrow 😝
Live your life, take as much care of yourself as you can... avoid illness and germs as much as practically possible, and spend time doing what makes you happy and with people who make you happy!
Everyone has bad times, but you will receive great support on here when you do!
Be kind to yourself , it takes time to wrap your head around the diagnosis.
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