Hi … I just found out about my CLL. Waiting to see hematologist. I was told by my pcp I’m young to have this (49) .. don’t know what my numbers means etc.
Feeling overwhelmed : Hi … I just found out... - CLL Support
Feeling overwhelmed
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Ljbg
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Welcome Ljbg, from someone diagnosed at age 51, a very, very long time ago. As Spark_Plug said don't hesitate to ask questions or simply post how you are feeling. The moderators are definitely a treasure trove of information, both about CLL as well as how to navigate this wonderful resource.
gardening-girl
Your comment about being diagnosed a very long time ago made me tear up. The shock of the diagnosis has caused me to feel afraid. Thank you and I look forward to connecting with this group more often.
I was 54 when my blood results went awry, but I didn’t follow it up for a couple of years - but only at 74 have I needed treatment! It’s a usually a long slow disease, and 30% of those with this disease never need treatment. Ask anything you want, someone on here will have been in the same posit as you.
There is a lot to learn, but it will begin to make sense over time. It’s not the doom laden prognosis it once was, so try not to worry (although that is easier said than done!)
Chrisx
Feeling afraid and anxious is perfectly normal. I was a total basket case. I was writing my obituary and knew I wouldn't see my grandkids grow up. This group helps educate and calm fears. I am still in watch and wait and living life as I always have except for the six month blood work. You will adjust to your "new norm" and learn to move forward with life.
Hi
Please try and relax. I realize it is easier said than done but trust me it isn’t as bad as it seems. I was diagnosed on the younger side too, 55, so I can relate to your situation. I recall getting my blood tests auto released from my GP on a Saturday and seeing my WBC counts exceedingly high. Google searches that weekend turned up all sorts of terrible possibilities. My GP called me about 5:30 the following Monday to tell me the hospital had an excellent cancer center. ( that turned out to be inaccurate but that is another long story) so it was a rough couple of days trying to figure out what might be wrong. Then testing for another several weeks. Followed by more waiting. And on it went. Finally an SLL/CLL diagnosis. But I’m still here living my life very normally five years later.
You have done well to get here early on your journey. Lots of folks on HU have been contributing for many years and they will gladly share knowledge. There is lots to learn that you can use in the years ahead. Yes. Years. So please don’t give away your prized possessions just yet😁. Many - 1/3rd of patients I believe - never need treatment! Just periodic blood tests to keep an eye on things. Another group don’t need treatment for at least several years after diagnosis. And did I mention the treatments? They are amazing. Even the old ones can be effective. I’m about 4- years out after having BR chemo, not a cutting edge treatment, and my new doctor thinks I’ll likely get at least another year before needing further treatment. I’ve been living my life very normally and you will, too.
I see you joined tomorrow 😁. It’s the 26th of March in Boston where I sit and you joined on the 27th so you’re likely in Europe or maybe Australia or New Zealand? My first recommendation is that you put in your country on your profile so folks can give you pointers about how CLL is handled where you live.
Be well. You are going to be just fine after moving beyond the initial shock of a cancer diagnosis.
Best
Mark
Yes! It is the shock that has caused anxiety, confusion, fear etc …. Your words truly helped me and warmed my heart. Thank you. I actually am in Boston. I look forward to being part of this group and learning from you all. The support from those who experience similar situations makes me grateful to have found this group.
Good morning;
Welcome fellow Bostonian! My next piece of advice is: Dana Farber. It’s an amazing cancer center. I will give you the same two names I was given: Dr Cynthia Brown and Dr Matthew Davids. They are top notch in their field both as clinicians and researchers. As you will hear time and time again, this disease is complex and treatments to combat it are evolving rapidly. As such, a specialist is required. Please give them a call tomorrow.
The join date must be reflective of the time zone where Health Unlocked headquarters reside? This makes sense now that I think about it.
Best
Mark
It i actually Jennifer ( not Cynthia) Brown at Dana Farber
Yes. I stand corrected.
Thank you
Mark
I actually have an appt scheduled at Dana Farber with Dr Jennifer Brown. Have you heard of her? The Dean of Harvard Medical School recommended her to me.
I’m rarely impressed by credentials but this lady is nothing short of brilliant. She completed her undergraduate and graduate degrees in molecular biophysics and biochemistry at Yale, simultaneously. I recall reading somewhere she did this in 3-years! You have an ace on your case 😁. Here is her bio:
Jennifer R. Brown, MD, PhD is the Director of the CLL Center of the Division of Hematologic Malignancies at Dana-Farber Cancer Institute and the Worthington and Margaret Collette Professor of Medicine in the Field of Hematologic Oncology at Harvard Medical School in Boston, Massachusetts. Dr. Brown completed a B.S. and M.S. simultaneously in molecular biophysics and biochemistry (MB&B) at Yale, graduating summa cum laude with distinction. She proceeded to Harvard Medical School where she received her MD and PhD in molecular genetics in 1998 and was awarded the James Tolbert Shipley Prize. She then served as an intern and resident in Internal Medicine at Massachusetts General Hospital followed by fellowship in Hematology and Medical Oncology at DFCI. Dr. Brown joined the faculty of DFCI and Harvard Medical School in 2004, where she has an active clinical-translational research program in CLL.
Her interests include the development of novel targeted therapeutics for CLL, as well as CLL genomics. She has been instrumental in the clinical development of idelalisib and ibrutinib, leading to their regulatory approvals in CLL. Her genomics work has characterized the somatic mutation profile of CLL, and she is now particularly interested in the implementation of genomic technology in the clinic. She also has a longstanding research interest in the inherited predisposition to CLL. To date she has published about 250 papers in the scientific literature, predominantly in CLL. In 2014 she was the recipient of two awards from DFCI, the Clinical Innovation Award, as well as the George Canellos Award. She is a member of the International Workshop on CLL (iwCLL) and enjoys a worldwide reputation as a CLL expert having made the Highly Cited Researchers list by Clarivate, with multiple papers ranking in the top 1% by citations for their field and year of publication.
AussieNeilPartnerAdministrator
Welcome to a community you didn't want to join, but will be very glad to have done so. There's a wealth of helpful posts in our Pinned Posts section healthunlocked.com/cllsuppo... commencing with this post
healthunlocked.com/cllsuppo...
I was diagnosed stage 4 at age 53, so no doubt had CLL/SLL at your age. I finished my first treatment just over a year ago, 12 years after my diagnosis. No trace of CLL could be found at the end of my treatment. Only tell those very close to you about your diagnosis, otherwise in a few years people will wonder if you really do have cancer!
Neil
You are correct I was very hesitant to join because again it’s another reality check but am already grateful. The shock of my diagnosis has caused so much anxiety. I am hopeful connecting and learning from you all will help me heal mentally.
Thank you for replying. I’m so glad I found this group. Once I process it all a bit more I will have questions. I know it will be so good to connect with those who truly understand.
It's always scary when doctors say the "c" word. I'm glad you found this forum now at the beginning! Learn what you can to prepare, and it is helpful to start a diary with questions you take to your appointments so you can keep on track. Best of luck to you!
This is very tough stuff!!! And those of us with CLL have and are going thru what you are feeling and experiencing. I am just so happy you found us…this is a super great community and we are here for you!!!
I was diagnosed at age 47 and was told that I had most likely had it for a few years. That was 33 years ago and I have been on three different lines of treatments and am doing great. Covid has put a crimp in things these pst 2 years but given a bit more time that too will settle out. You just hang in in there. One step at a time and ask all the questions you want. All the very very best to you!
Panz 🙂☘️💕🙏
My wife had the worse type of CLL diagnosis about 6 years ago. They told her she had about 2 years to live. Then a new medication (Venetoclax) put her blood work into a normal range in about 4 weeks and into clinical remission within a year. She hasn't been on any meds now for over 3 years. However, you may never need treatment and if you do there are several great options.
Think of CLL as something like diabetes. It is treatable and, in some cases, curable. Many doctors are now saying it is more likely a CLL patient will die with CLL rather than from CLL.
You have no idea how much I appreciate you sharing your wife’s story. I’m a single mom and worry so much about my children and what this could mean. God bless your family and looking forward to connecting.
A big PS, stay away from Google as their info is often not up to date. Also, CLL has brought my wife and I to this site where we have met great and knowledgeable people all over the world. You will love the info and have some new friends that you would have never known before CLL. This sight will also introduce you to CLL specialists and their videos that are very informative.
Good Evening Ljbg
I was diagnosed 4 years ago at age of 47.
I was devastated like we all were when we found out. My daughter was 12 at the time and I was terrified that I wouldn’t be around for her and my wife.
The great news is this is a chronic condition at IF you ever need to be treated the treatment is via a pill that’s very effective. Also note this, 1/3 of people with Cll need treatment at diagnosis 1/3 need treatment decade to decades , 1/3 never need treatment.
Most will tell you to see a Cll specialist and I strongly recommend it as well.
The specialist are the ones that will put your mind at ease.
This condition is like having high blood pressure or diabetes in the terms of a chronic condition that can be treated.
Best wishes
John
20 + years since being diagnosed (now 74) by my Doctor (newly qualified and inexperienced!) that I had CLL and told to come back the following month and have more blood tests done to see how fast it was progressing. Fortunately twin sister got onto Surgery and another experienced Doctor saw me and arranged for me to go to the Hospital within the week to see Haemotologist who was fantastic and examined me, talked to us and gave us a video. Unfortunately, sites like this one were not there for us in those days and 'google' was the only thing available and very frightening information given! Chemo in 2007 then 12 years in remission and I've enjoyed my life to the full although tiredness has always been with me. Just before Covid my counts started to double again but it was found too dangerous for me to start treatment so have been 'shielding' ever since. Eventually started on 'Acalabrutinib' early February and the first month wasn't good at all but now feeling good and very positive so onwards and upwards even though I've also been diagnosed as having Notch1 this month which has put me in the worse group now after being in the excellent group. Positive thinking goes a long way, don't just curl but up get out and enjoy your life to the full there are so many excellent drugs about now now a days that it shouldn't affect what you want to do in life. Even though I've not been able to mix or go out over the past few years I've enjoyed refurbising my garden making it so much easier for myself. I don't eat meat but love fish and vegetables so started growing my own and loving the results. Best wishes to you. Ann
Hi. Welcome to the family, It is indeed a shock upon diagnosis. Doubtless you have many questions the good people here have a wealth of knowledge and experience. We will guide and support you on your journey. I was diagnosed in 2015 and thought the worst, however there are many treatments available and you may not need any intervention for many years so i would say sit back, relax and take stock of things. Any questions or advice needed ask away. Best wishes.
I’m sorry you are having to go through this. Many have given you strong words of encouragement and wisdom here already. I was diagnosed in May 2017 at the age of 55 and just began treatment in January. I used to envision what it would be like when I got to the stage as a dark gloomy situation. But in reality it has been nothing like that. My numbers progressed pretty steadily and relatively rapidly compared to some people’s experience, and although I did and still do suffer from some B symptoms as they are called, I am now taking a pill twice a day and my numbers are on a rapid decline after only two months. I feel good and it’s a great feeling to know that even if this treatment wanes in its effectiveness with time, there are others available now and many more in the queue.
Covid has been an issue for all of us here in that we are certainly at a higher risk and if others haven’t mentioned that to you yet, you should be aware of the benefits of a bit more conservative protection measures than the average person without an immunity system disorder (so to speak.) But other than that, I don’t feel any different than anyone else in my circle of friends or family that doesn’t have this condition. I stay very active and fit and do my job and see my grandkids and live my life. Until Covid, I traveled extensively and stayed healthy all the way.
It is an adjustment to come to grips with being diagnosed with a chronic disease. One of my doctors told me at the very beginning to rest assured that - barring a cure that may very well be on the horizon in the near term - I will die with this disease, not from it.
But I would never minimize the strain that you are going through during this adjustment. I actually had a close friend of my Mom’s say to me recently that the cancer that I have is considered a good cancer. My wife was with me and quickly replied, it’s not a good cancer to the person that has it! it probably annoyed her more than it annoyed me because she has seen me struggle with the worries, fears and having to go to all the doctors appointments and watch the numbers and research the treatments… It’s not an easy world but it is one that you can successfully navigate and you are off to a great start by looking for resources and support in this group. You are your best advocate and you will learn a lot of medical science before you know it.
It’s actually pretty cool stuff to learn about. And blood cancer treatments are amongst the fastest growing and successful medical research topics out there. It amazes me that after two months of taking a pill in the morning and evening and having quite manageable side effects only for the first few weeks, my relevant white counts have come down from about 200 to 45. And the things that were getting low are back on the rise.
You will be there for your kids and eventually your grandkids and you will discover a lot of amazing things about medicine and yourself along the way.
Good advice. However, I think your friend’s comment about CLL being the “good cancer” is accurate. That being said, I’ve seen reactions such as your wife’s numerous times. But in my mind, it is a good cancer. This is not to minimize our disease or suggest it is easy but to acknowledge things can be a lot worse. Essentially, it is the glass is half full perspective.
Interestingly, you and I are the same age and we’re diagnosed at the same age. I will give you an example of why I think CLL is the good cancer that will underscore my point. A couple weeks back I was in my office. It was a Friday and no one was around. I was walking the floor and noticed a light on in the far end of the space. I went over to see who was in and I found a young guy I’ll call Josh. Josh is in his early thirties. He is extremely fit and intelligent. He was married in the last few years and recently bought a new house in a nice neighborhood. Everything in life to look forward to or so it seemed.
During Covid I learned that Josh had been diagnosed with cancer. I didn’t know what type or what it was all about but I knew he had an operation, chemo and radiation. I had sent a message through some of my younger colleagues that if Josh wanted to talk I was always available. Well that afternoon, he wanted to talk. He told me that 18 months ago he had a pain in his rib cage that he thought was a pulled muscle but after it didn’t go away, he had a series of medical appointments that eventually led to a cancer diagnosis. It was a type of cancer that was a precursor to AML. A “bad” blood cancer.
The doctors hit Josh’s disease hard and hoped it would stay in remission. Since he is young and otherwise healthy they were hopeful. Well he had learned that week that it hadn’t gone away. A blood test indicated that it was likely back and probably had transformed into AML. He had a scan scheduled that evening and a doctor’s appointment the following week to confirm things but he wasn’t optimistic. I tried to cheer him up and mentioned that there were many treatment options available. He looked at me steely eyed and said no, his next step was likely a stem cell transplant. He talked about how difficult treatment had been and how hard it was to focus on work. I felt devastated for him and we talked for a long while about things that only folks who have been diagnosed with blood cancer can relate to but it was obvious his situation was much more dire than mine. As I left I realized that I do have a “good cancer.” Undoubtedly, my cancer will become more difficult and impact me more in the years ahead but relative to Josh’s situation mine could be a whole lot worse. It’s all relative. I considered my glass half full that afternoon and still do today.
Best
Mark
What a sad sad story. I can't believe cancer comes into people's lives just to destroy them. They need cures not just medications to keep it at bay. Cancer is by far the worst thing in the world besides all these wars going on.
Agreed. Especially for a young guy like Josh. He said lots of doctors are paying attention to his case since he was diagnosed at 31. This type of cancer rarely strikes young people.
Best,
Mark
I’m sorry to hear about your friend’s horribly sad situation. I understand what you are saying with regards to the fact that some cancers are less crippling and deadly than others. Of course. But I will never say the words that CLL is a good anything. It’s still a chronic disease that requires a high level of expert care for many, and some still do not survive. So for us (me and my wife) the only good cancer is no cancer.
Thanks. I understand your perspective. I also meant to write in my initial response to you that it is often difficult for people to find the right words when trying to empathize with someone who has cancer. For example, even I had a tough time finding the right things to say to Josh in my conversation despite the fact I have Cancer. Blurting out well luckily you have a “good Cancer ” might have been your friend’s attempt at trying to say something positive.
Best
Mark
Think I agree to disagree with you Mark about Cll . This Wednesday I am starting my 5th treatment . I might have more knowledge and know what's going to happen but I'm still scared. I also have what is termed good markers being 13q unmutated (not so good). We are all different and I find it difficult when this Cll cancer is minimised against othercancers. We are the people that have to live with it and it's not easy on a daily basis.
Best wishes.
Sue
Hi Sue
I wish you well with starting your 5th treatment this week. I know how agonizing the time before treatment is and I hope once you begin the process is smooth.
I do understand CLL is a tough disease. I’ve only been through one round of treatment but it wasn’t particularly fun. I’ll probably be looking at round two next year and I dread not only the treatment but the process of selecting treatment sequencing.
The point I was trying to make is it could be worse. That is all. When I first found out I had cancer I assumed I was going to die in the near term. I tightened up my will and prepared for the worst. Luckily, my disease has been manageable and I consider myself fortunate to have enjoyed the past 4 1/2 years watching my kids grow up.
Let’s hope the researchers are able to find a cure in the near term and then CLL can truly be deemed a good cancer.
Best,
Mark
Thanks Mark. Do not usually say much. But with Cll we are all so very different.Good wishes accepted.
Stay safe.
Sue
Sue, I whole heatedly agree with you. I have only had treatment once, but that almost killed me. It was two years after being diagnosed. I had FCR and after four rounds of the chemo my doctor said I was allergic to one of the drugs. I spent a week in the hospital and then three months going in a few times a week for platelets and other treatments to try to get my blood counts up. The FCR had made my counts go dangerously low. Now four years after that I am still getting IVIG's and my counts are still somewhat low. On top of that I have some kind of lung infection that they are trying to figure out. To me no cancer is good cancer. They all treat different people differently.
Chris
Lovely to hear from you Chris. I hope you get sorted soon.Stay safe.
Sue
I agree with what you are saying up to a point. In your particular case, at this point in time, CLL is a good cancer. But as we all know, CLL does not treat everyone the same way. No cancer is good. While my CLL is being treated successfully at present, we don’t know what the future holds for any of us. I would prefer not to have any cancer. But at present I am thankful for the treatment that I am getting and hoping for the best.
I know the feeling all too well. The day after I was diagnosed with CLL my brother in law was diagnosed with Lymphoma. He went through chemo and that didn't help so they did a bone marrow transplant. He ended up with graft versus host disease and passed away a little more than a year after being diagnosed. I think of him almost every day and realize that I have it so good compared to how he had it. You never know what life has in store for you. Now I try to live every day for him. We were very close.
Chris
lankisterguyVolunteer
Hi Ljbg,
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You have received many helpful replies. The link posted by AussieNeil
healthunlocked.com/cllsuppo...
is an excellent place to learn many details about CLL- it took many of us weeks and months to learn all it contains.
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The CLL Society has a series called CLL101 that includes many topics: cllsociety.org/cll-101/
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Since you mentioned Boston, there is a support group you can attend April 30 by Zoom that can provide help also: cllsociety.org/venue/newton...
or if that time doesn't work, there are about 30 other groups like the Central Mass group that meet sooner cllsociety.org/events/2022-04/
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Len
CLL Society 101 basics.JPG
I am so sorry to hear this…hang in there. You live in the area where the best of the best Doctors are. Doctor Mathew Davids at Dana Farber is someone who I trust. He and his PA are great. Definitely go there…even if for a second opinion.🙏🙏🙏 that you are one of those people who will never need treatment.
You were just diagnosed with a disease no one wants the ever have and I was your age and in shock as well almost 8 years ago. Please focus on the positive and rapidly evolving treatment options if you indeed need treatment. You live in Boston which is great since you have Dana Faber with 2 outstanding CLL specialists Matthews and Jennifer Brown who I see.
I want to let you know that life does not end with this diagnosis and while the disease is highly variable and some of our members suffer through rough patches and complications many others live full and productive lives. I work full time in a at times stressful environment, work out multiple times a week and just came back walking my Golden for one and a half hours. I am in remission for now 2 years after my first treatment and feel great. So there is a lot of hope and I want to strongly encourage you to see someone at Dana Faber
I am 7 months into my diagnosis, and boy those first few months are tough. I made the mistake of googling and thought my time was up. Since I am typing this, that obviously isn’t true 😀. There is great support on this site, and excellent information. There is a lot of excellent research being done in this area worldwide , and an increasing number of very good and effective treatments. I have collected quotes from some of the top doctors in this field, and they are very positive. CLL is NOT the disease it was a decade ago. I suggest you slowly read through the stickies, but take it at your own pace.
Ljbg, there is so much information on this forum. For a short time I didn't think I would ever grasp it. Ask anything that comes to your mind, you will get important answers from those who have your same experiences. This is the greatest resource next to your doctor. I'm in W&W since 2020, it's thought based on my annual bloodwork, it could have started in 2018. I'm 73, feel great and have gotten my confidence built up with this group. Even covid was discussed in depth. These people are wonderful! 🙂 Sandra
I wish you well as you start this Cll journey.. take your time to absorb all that's going on around you and learn as much or little as you wish.Take care
Sue
My husband's 64 and he was 59 when he was diagnosed with low grade CLL, and he had to see the hematology onclologist, because after having blood tests something wasn't right with his white blood cells, and he had loads of tests, and was on watch and wait for 9 months before starting treatment ibruvinib, and been in remission for nearly 4 years. Now he's got advanced prostate cancer, and just started hormone treatment, and waiting to see the urology oncologist for further treatment, and he's been getting anxious,but he beat it before and he can do it again. Just got to stay positive, and we also joined the Lymphoma support group, and this group is helpful. Good luck on your journey.💜xxx
Hi I was diagnosed 17 years ago early 50’s try not to worry , there are a lot more options now for treatment when you need it. Meanwhile this group are so loving and helpful.
Hi lovely, welcome to our community, I don't post often but check in regularly with this fantastic group.I was 42 when diagnosed and understand all too well the shock and confusion, especially due to a lack of helpful information for the early stages and often the almost off-hand pronouncement of your diagnosis, needless to say, that first year after being diagnosed was hell, fought with unnecessary stress and worry until I found this community.
This group so supportive, understanding and knowledgeable, don't hesitate to ask questions or just to talk to us, the moderators are incredible indeed.
Warmest regards,
L
No-one wants this news - it's a shock - but you've already had loads of good advice and positive news. One thing to know about CLL is that it can go very differently in different people... but excellent treatments are now available, whatever path it takes.
My own case - diagnosed at 63 in 2011 (must have had it for a year at least before that) - progressed very rapidly, and thanks to Google thought I had only another 2-5 years, stopped buying new clothes as I wouldn't get the wear out of them! Treated 5 months after diagnosis with chemo (BR)... had some rough times, but never needed another CLL treatment yet, and am in good shape 10 years post-treatment.
So - breathe deeply and try not to worry. You should have very many years of good living ahead of you. All the best.
Add me to the list of people replying who were diagnosed young; in my case it was just before my 37th birthday - 16 years ago.
It's always important to stress that we're all different, and just because many of us have been on watch and wait for years after being diagnosed young doesn't mean that everyone who's been diagnosed young is going to be equally lucky (that said, being immunosuppressed in a pandemic admittedly isn't much fun for any of us). But at the same time, I'd recommend the importance of not assuming the worst, and giving yourself a little space to have those conversations with a haematologist to better understand your individual case.
I was 45 when I was diagnosed, probably had CLL for a year or two before that. It’s a shock, and I worried a lot in the early days, especially as I had young children. Watch and wait is incredibly stressful as doctors can’t say how long it will be before treatment starts. All you can do is worry about it. But if there was one thing someone could have told me then, it would have been I had a few years before treatment would start and put a rough number on it. That was important to me because I wasted years thinking about it. In the event it was 7 years. We’re all different, but hopefully you have some time yet too and can live as normally as you have been for the most part on W&W. In the last couple of years treatment has come on so much that I think you’re going to be ok for a long while yet.
HiI was diagnosed at 56 , 17 months ago. Straight to treatment and in remission within 240 days. Living life to full and enjoying every minute. The only reminder I have is my twice daily tablets.... which I do occasionally forget. Keep safe., keep positive
Good Morning Ljbg. I can absolutely relate to you. I was diagnosed on my 49th birthday and I just turned 50 this month. I’m still a bit anxious.
American Cancer Society has a great list of questions to ask your doctor ..I printed those and wrote down even more at my first appointment. It was a good place to start.
This group has a wealth of information and I am starting to garner lots of the wisdom that has been shared on here.
I’m in Connecticut. The one thing I can say to you is if definitely get a CLL expert to be your doctor. I had a horrible time with doctors, but have now found one that I really like. Make sure you feel comfortable because I had two male doctors that made me feel unheard and insignificant. I now have a local oncologist and a CLL expert, both I like.
The last thing in my ramble is: you are not alone! This group has certainly helped me in that way.
Welcome to the club and sorry you're here. There are a lot of great resources here and a lot of folks that have been diagnosed at a young age. Please don't hesitate to reach out. I too was diagnosed quite young.
Jeremy
I too was just diagnosed a little over a month ago. Your doctor will be able to answer a lot of questions. Thankfully I am not needing any treatment now- just on-going monitoring of my blood work. Many people live with this condition for years without needing treatment and new treatments are being developed all the time. As several medical people said to me, if you have to have a cancer this is the one to have! Blessings to you!
Hello and welcome Lu, I too found out at about 49, and was in wait and watch until just last December. So for a Christmas I got swollen abdominal lymph nodes and an instant ushering into starting treatment with Obinutuzumab and now Venclexta. I’m feel so much better getting first hand info from others here doing the same. Keep your head up and keep an eye on your numbers and Lear. As much as you can, I think it helps to keeps moving and not dwell on things too much. I was actually more shocked recently when I had to start treatment s. Just was not expecting it quite yet.
I was diagnosed at 53 and am 60 now. I had 1 course of treatment and I am doing well in partial remission. The Watch & Wait phase (only monitoring you) of CLL/SLL can be counterintuitive when you are told you have cancer. The Watch & Wait phase will allow you to educate yourself on this disease and it's treatments and align yourself with a CLL Specialist to answer all your questions. New, better tolerated treatments are rapidly being developed for this disease. The longer until time to treat (which may never happen for you or 25% of all diagnosed with CLL) the more treatments will be available. Best of luck on your CLL journey. You are in the right place for support and information.
Welcome~ Take some time to focus on your breathing & mindfulness. I know that sounds very difficult. But, you can rest assured once you get to know more about this amazing forum, you will feel better. I know that sounds strange. No one "wants" to be here. Given that none of us are guaranteed healthy vessels on this journey though, here you will find infinite knowledge, compassion & support & some laughs too!
I am here because my husband is diagnosed. I am close to your age & have some serious health conditions (not lifestyle choice related). You are not alone & you will be ok. Prayers & virtual hugs!!
Cookie
I was diagnosed at 48. I'm doing fine 12 years later!...unmutated 11q del. There are great treatments. Don't let the fear overwhelm you. Feel hopeful for many reasons.
I was just diagnosed this past November. The diagnosis blindsided me, it was just supposed to be a regular doctor appointment. I came across this forum, quite by accident, a few weeks later. The support and knowledge in this community is what has helped me immensely! Questions that seem like they may be silly or basic, are always answered truthfully and compassionately. I know that when I’m worried or just curious, I can always look here for the answers and support that I need! Best of luck to you on this journey that we are on! Glad you found this forum!!
Welcome I am also young, 37, and on watch and wait. There are a few younger patients on here as well. Wish you well.
Hi I was 47 when first diagnosed, then shortly after started treatment. One thing I have learnt about CLL is that everyone’s experience is different. It is now 16 years later and I am about to start another round of treatment. So you are never too young!
Welcome to this very helpful site. I too was diagnosed at 49. That was 21 years ago and still alive and kicking.
I wanted to reply to you give you another perspective of someone young and who also has a very slow growing CLL. As I have said before on here that I often feel guilty about my disease being so boring, but these wonderful people had told me to continue to post because it can provide hope for those newly diagnosed. Long story short...I was diagnosed at 46 in 2016. My specialist at MD Anderson determined that it probably started in 2012, I have yet to have any treatment. My ALC and WBC was exactly what it was at my December 2021 appointment that it was 3 years prior. ALC 26. All other counts normal. He said if I need treatment, I am more than likely 10-15 years away AND he feels there are treatments now that could be curative for MY type. 13Q and mutated. Combination therapies are going to become standard for younger patients down the road for those who live in countries who have access to them. Older patients can take singular drugs to control their disease for the long term.
Don't fret too much. Someone here told me several years ago that I was diagnosed with CLL at the right time if I was going to get it because of the ever-changing landscape of treatments out there. And YOU were diagnosed in even better times than I was.
Words of advice...
1. Vaccinate yourself...COVID, Shingles, Pneumonia, Flu
2. See a dermatologist and get screening for pre-skin cancer and treat if needed.
3. Check ups...colonoscopy, etc.
4. See a specialist...they only deal with CLL. I have a local hematologist and a specialist at MD Anderson. I am on 3 year visits with him and 1 year with my local doc.
5. Live today and don't worry so much about tomorrow. (Easier said than done, I know. But as you get a better idea of the pace of your disease, you will settle in and it won't seem as bad.)
I live a completely normal life...I work out, I eat healthy, I enjoy a glass of wine or three on weekends. :).
Last but not least, there are lots of individuals here who are a wealth of knowledge. Lean on them! Ask questions. Thats why we are all here.
Best wishes.
Hi Ljbg , I was diagnosed at 52 . Ten years later my counts have risen quite a lot but I’m still well , enjoying life and not really worrying about CLL. At the start of my journey I was given some good advice by a CLL specialist . He suggested I familiarise myself with my blood counts so I understood what was happening , but otherwise should go away and live my life to the full . My ALC is now 130 but I feel great ( a little tired sometimes but I can push through it ) and I lose no sleep over it . I know it’s a big shock when you get diagnosed but many of us are doing just fine . Hang in their , my friend - life can still be good 😊
Welcome Ljbq a great decision to check out this fantastic forum/family … n what a great family of supporters they are with awesome knowledge/advice of CLL questions … n please ask many ?s!!
Wow 60+ great replies n counting, bet you’ll get well over 100 and they will come literally from all corners of the world! Take it all in slowly, no rush to try and understand everything.
A year ago I joined this forum, after being dx 6 months prior which was when I retired at age 62… thought that was too young to get the “big C” bad news? Your younger case is a tougher pill to swallow but like the many replies noted there are good treatments for this particular cancer (if you”ll even need it?). So no need when you visit your hematologist to ask the “how long do I have to live?” question (like I stupidly did)… Cus CLL is typically not a dire cancer situation and my CLL doc told me that one will probably die with CLL n not because of it.
I strongly suggest reread baq724 previous reply, it’s awesome, especially his 5 advice points. Point 5 is THE key to focus on daily … “live today” aka, enjoy a long life Ljbq and watch those kids grow up along the way!
Hi there. Well I hope (with all of the above posts) you have found some comfort. This group is a fantastic source of information and a great sounding board. I was diagnosed at 44 and just recently started treatment at 46 (started a month ago). I'm also from the Boston area (Go Sox) and have 3 kids (11 and twin 9 year olds) . After the initial shock (which took me a few months to accept) I used my diagnosis as an opportunity to have a new perspective on life and appreciate the things we all take for granted. I also took comfort by researching and educating myself on all things CLL and how our immune system works. We truly are amazing creatures. Everyone has their own journey - stay strong, try to be positive and I wish you all the best. This is a long term thing.
Welcome to the club. I was 49 when diagnosed. You're going to be in a strange place right now. Emotions will be all over the place, and you need to lean on your family for support. I was a train wreck for the first few weeks, why me, what did I do, why now, I am too young, what about my family, work, money. We have all been there, and you should use those here to bounce off any questions, concerns or if you just want to vent.
Here is the good news! CLL treatments have moved on leaps and bounds in the last ten years. Most die WITH CLL than of it. CLL is still not defined as curable, but the treatments are amazing, and it's kind of managed like a chronic disease.
The primary thing is to stay strong and not fall into an emotional downward spiral that will suck the energy out of you. The stronger you are, the fitter you are, the better you will tolerate treatments. Eat healthily, give up smoking, stop or reduce Alcohol, whatever makes you feel positive and effect change. I gave up alcohol and I haven't missed a single hangover since 
The most important part is to wait for the plan from your haematologist. You will need a lot of tests, maybe bone marrow biopsy, PET, CT..... At the end of all these tests, numbers, genetic mutations, etc. You will get a plan. Once you have that plan, you can move forward and get on with your life.
You literally explained my thoughts and current feelings. Thank you
I know it’s so so hard, but try and remain strong. In a couple of months everything will be much clearer, I promise you. Stay in touch.
I suspect I had CLL for a few years before I was diagnosed ( diagnosed at 52). I say this because I was picking infections, any cuts were taking an age to heal etc etc.I was also told ‘not to worry because it was an old man’s disease’. Whilst this was reassuring at the time (& I had to retrieve my life after a serious hospital admission) - later, I discovered this was not exclusively ‘an old man’s disease’ and I needed to find a way forward. This site has been a lifeline for me & seeking out a specialist in CLL. CLL behaves differently in all of us, something a regular Haematologist may not pick up on.
I’m sorry to hear about your diagnoses but I hope you find a lot of support here. I know “damn…leukemia” but it’s not as bad as it sounds. I am 28 I got diagnosed last summer. I Im unmutated with an 11p deletion. I have it on the more aggressive side. But I’ve Been on acalbrutinib since January and I feel pretty great! They will probably just wait wand watch it for a while (some people may never need treatment) but just know that they are always coming out with new therapies. So the future is very positive! Also make sure you like your doctor! My last one left me more worried each appointment, I switched to a specialist and feel well taken care of, so a second opinion always helps. I hope the best for you on your follow up appointments! I know it’s so hard not to worry or panic, but just try and take it one day at a time. That’s what I feel helps me the most! Best wishes
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