Hello folks...My GP feels my bloods indicate CLL...PANIC. Referring me to a Haematology Doctor
58 with dependent kids and mortgage
Any information re the below would be great.
Immunophenotyping PB has been done with Tcell Tcell helper cells and cytoxiccell all low..
L22
L14
L7
B cells
High 64 66
Lymphocytes High 6400
Absolute numbers 4096
Hi Stew64. Please don't panic. First, you haven't seen a hematologist yet, so CLL hasn't been confirmed. However, even if it is, you will quickly find that CLL is chronic, and there is usually no rush to treat. My first piece of advice is to stay off Dr. Google as all that will do is give you misinformation and fear. Most people with CLL begin with a Watch and Wait approach, and this can last for several years. CLL is not a death sentence. There are many people who have never had to have treatment, and there are just as many others who have had treatment and are in remission and living long lives. There are so many wonderful new therapies now, and my CLL specialist has told me that I will most likely die with CLL, not from it. I am 55 years old and also have dependent children and a mortgage. I plan on getting those kids off on their own and paying off that mortgage. You will do the same if you have CLL. I know it's a shock when you hear the word "cancer" or "leukemia." However, even if you do have CLL, things will be fine. You have found a wonderful community of people here as well who can help and listen.
Hi Stew,
I see that you aren't sleeping, which while understandable is unnecessarily lost sleep. There's enough in what you have provided to see that you have an over-abu. ndance of B cells, but for you to have CLL, you must have both a monoclonal population of B cells (cancer), plus they need specific CD number markers in immunohenotype flow cytometry test. IF you have CLL, then you are early stage from your lymphocyte count. I was diagnosed at stage 4 and didn't need treatment for 11 years . We have members with lymphocyte counts in the hundreds. The information you find on line can be dangerously out of date. Anything older than 5 years ago discussing survival times is out of date. The latest news is reporting near normal life expectancy with a recent treatment advance.
healthunlocked.com/cllsuppo...
If you do end up with a CLL diagnosis, you have found a great place for support and learning about the latest exciting developments.
Time for us now to get a good night's sleep.
Neil
Cheers NeilI'm in Perth. Thank you for your words..obviously a bit panicked at the moment.
Stew
Hello Stew64, as human beings we panic and think the worse when we hear a diagnosis like this. You are going to have these feelings in the beginning. Within time it will get better. For me it was a little harder because I suffer from health anxiety. I just started treatment. Im on an oral pill acalabrutinib and am doing fine so far. DON'T do what i did for a long time and that's Google everything. You know why? And I learnt this the hard way, Google is not your doctor and most of the time is outdated. U will defeat and concur. Believe me this is coming from someone that thought "my life is over". Far from the truth. 🙂
Hi, welcome to the group no one wants to join, if it turns out you do indeed have Chronic Lymphocytic Leukemia. I know the word "leukemia" causes a panic, but in our case the more important part of this diagnosis is the "chronic" part. The panic is understandable, and hopefully you can wrap your head around your disease not being urgently life threatening, sooner rather than later. As others have said, don't Google things randomly, the stuff at the top of the search engines tend to be older info, or folk paying for sensationalistic posts. As a former oncology pharmacist, I can say with some knowledge that the Pinned Posts stuff here, is excellent, not melodramatic and it's balanced. There are non profits like CLLSociety.org and LLS.org and leukaemia.org.au as well as others, who will have non-sensational, up to date information. A number of university websites do also. So when you do your readings, please check that 1) it's a reputable medical site, and 2) the article is not 10 or even 5 years old. This particular cancer has had an explosion of new treatments with fabulous results in the past decade alone, so reading older statistics or articles will be a bit misleading as far as "current statistics and results" are concerned.
P.S. Lymphocytes at 6400 is not a huge deal right now, mine were over 50,000 at diagnosis. I had symptoms sending me to the doc. If this is a result of routine yearly exam, you are very early into this disease process. Know also, that about 1/3 of people getting this diagnosis nowadays never need treatment. The big takeaway #1 is that *if* you have it, you have a somewhat (can't really say to what extent, there's no way to test currently) compromised immune system. Whether this means you will take 10 days to get over a cold versus 4 days, or your skin bruises easier than previously, or what, is hard to say. Big takeaway #2 is that we all experience this rare cancer very differently, so no doc can say for sure 100% what will, or will not, happen. Except that due to the slower nature of any changes, this leukemia is classified as "chronic" since the changes generally don't occur so fast that they are quickly life-threatening. Thus "Chronic Lymphocytic Leukemia" is a different creature compared to "Acute Lymphocytic Leukemia". And even ALL has a higher treatment success rate nowadays. Back in the mid 70's, the acute form had 5 year survival under 40%, while in 2018 the acute form was closer to 70% survival. And these numbers just keep getting better, for our Chronic type as well. Many many doctors tell their patients, that they will die "with" as opposed to "from" CLL. So, take a deep breath, try to be calm, and go see the hematologist.
P.P.S. even if you get this diagnosis and are told you have "bad" indicators, remember that calling various disease parameters "bad" or "good" is based on older data. The newer treatments are making some of this "bad" versus "good" classification more indicative of what type of treatment to use, to get the best results, not an indicator of whether or not one will die soon.
SofiaDeo, as a librarian/teacher who has preached information literacy to my students for years, I just wanted to tell you I LOVE your advice about researching information!!! My students were always shocked that they couldn’t just pick a site and go with the information!! ❤️
LOL this reminds me of a woman I was mentoring, who questioned me about one of her professors' recommendations to read a Wikipedia entry for her class, and use it as a reference, and what I thought about that. She knew that Wikipedia may not be a reliable source. Since *the professor* was the one writing it, I couldn't fault it hahaha!
Stay focus and don’t panic!!!you have come to the right place and you will have support!!! I fully understand your concern having dependent children. I know here you are coming from…CHRONIC is very important to remember….I have had CLL for 33+ years. Also, be aware there is loads of help out there should it prove to be CLL. The CLL Society and the LLS is super great….that is Leukemia Lymphoma Society
Now practice your deep breathing and be calm that is the best for you and sleep is rather important….you might try Benadryl or an allergy relief (Diphennydramie Hydrochloride 25mg…this an Antihistamine) I take two capsules an hour ahead of going to bed and I have the green light from both doctors,
Please stay in touch…we are here for you!
Panz💕🌈🙂👍☘️🙏
I just realized you are in Australia….I hope the have something similar to CLL and LLS!!!!
Yes, in Australia, we have our Leukaemia Foundation and Lymphoma Australia charities.
Hi Stew
I hope you managed to get a few hours of decent sleep after reading the very supportive replies you've already received.
As AussieNeil said, there's still a bit of information you need to know if you have CLL. If you do, you've found a great place to learn more and share your experience. Do let us know how you get on once you've seen a haematologist.
If you do have CLL, we've some very helpful resources for you in our Pinned Posts section of the site but I'll draw your attention to just a couple of them at this stage in case you might need them after you've learned more from the haematologist. There's no need to worry about them in advance as you first need to confirm your diagnosis but they are the Australian section of our recently updated 'resources' post which will give you a link to the Optimal Care Pathway for CLL in Australia, as well as some information about finding a CLL specialist if you should need one.
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
All the best and please do let us know how you get on.
Thanks for this I am panicked ... obviously...however I need to relax and breath.
Hi Stew, I hope you’re alright, I totally understand where you’re at. I’m less than a month in after being diagnosed with CLL after a random finding on a FBC test. I decided to keep it quiet until I knew for sure after an appointment with a haematologist. You have come to the right place with this group, the advice and posts have been informative and helped me understand much more than Google searches and scrolling though old articles. I echo the encouragement posted and please relax and breathe..
Hi,I was diagnosis stage 4 high risk in Nov 2020. I was 56 with a 3 and 1 Yr old. Personally I was relieved that the diagnosis was CLL as having reviewed my initial blood film I thought it was something else far more serious. Anyway I went straight to treatment and was in uMRD in 243 days. I am on daily acalabrutinib and live a full pre Covid and pre CLL lifestyle, enjoying life to the full. Keep positive
that’s how I thought 13 years ago when I was diagnosed, since then I have held down my job that requires an annual medical and have led a normal life. Covid put a spanner in the works because of the high risk of infection and lower immunity but have been living a near normal life. Recent medication has changed the face of CLL treatment with 2 tablets a day and personally no side effects. I know it’s a shock when someone mentions cancer but this condition is entirely manageable.
It is a panic when you first hear that you have blood cancer. My husband was diagnosed with CLL 6 years ago he was on watch and wait for 9 months before starting ibruvinib, and in remission. He's 65.
stew64, don’t panic. You will have a normal lifespan with advancement in CLL medicines. All of us panicked when our diagnosis was made but after lots of information, life is normal for us. Stay relaxed and trust us.
Hi Stew,like you we panicked when my husband was diagnosed,he was 54. After the initial shock,life carried on as normal.He was 70 which was 2016, when he needed treatment,he is now in remission and feeling very well.Jenny uk
Hello Stew64
Three months ago I felt just like you. A phone call at breakfast, when I was just expecting results from a cholesterol check. Everything you are feeling is normal. I couldn’t sleep and kept crying. So pleased that I found this group. Here in UK, I have to wait a year before I see the haematologist again. I phoned a support nurse number one day when I was feeling really low and got an answerphone message saying they were busy and would get back to me in two days. I’ve had to find my own way. Luckily, I asked for a copy of the consultant’s letter to my GP. The practice received the letter but didn’t act on it. I had to initiate everything advised.
The wonderful people in this group are a huge support and reading the questions and replies has helped me enormously. I’m functioning again and coping much better, sleeping OK now, too.
Take the time you need and be kind to yourself, whatever the outcome of your diagnosis.
Thank you for your kindness ..sort of numb at present..
I know it's hard not to worry but try and stay calm. The worst bit is the diagnosis but once/if it is confirmed then you will have support from your medical team and by coming onto this group, the best ever patient led support and advice. The thing is, many people live perfectly normal lives for many years without treatment (known as watch and wait), some never need treatment but if you do, treatment and research is improving all the time. Personally I was diagnosed with CLL when I was 66, had three years of watch and wait before starting treatment with Acalabrutinib in 2021. I live as normally as possible but watch for infections. Covid19 slowed us down but with good masks we are attempting to travel again. My first thought was that I was going to die, my consultant told me that I would most likely die of something else and NOT CLL.
Please keep us updated on progress and stay safe and positive.
Good luck
Wait for a flow cytometry confirmation. Don't panic yet.
Cheers. I see the Haematologist next Tuesday
I was diagnosed by my doctor 9 years ago and a hematologist/oncologist confirmed the findings. Went to Mayo Clinic for a second opinion and more information. I was told that I should not fear this RX but be very careful of infections and stay on top of all my preventative cancer screenings. They told me that there are so many great strides in treatments although I’ve been on watch and wait since my RX.
Mayo told me that they initially used to treat CLL right away but found that the treatment further weakened the immune system and the patients did not fare well if they got an infection. W&W was found to be the way to go. They also told me (not a well talked about fact) that patients with a higher Vit D level at time of RX, did much better in the long run. This finding is from Mayos CLL studies (which I am a part of now) So get your Vitamin D levels checked too and see a hematologist/oncologist that specializes in CLL…very important.
My numbers have remained steady. They go a tad higher then the next year they go lower.
I hope your panic will subside. When your fear takes over and you worry; just think to yourself “does worrying change anything?”
Do whatever will make you feel better. Exercise and reading a good book can help with distraction and calm your mind. Your anxiety is high and getting the best of you.
Maybe drink some soothing hot tea and take a good B complex or nutritional yeast along with an extra dose of Vitamin B1. It makes a big difference in stress levels.
Mayo also told me that they are so close to a CLL cure and it may happen in my lifetime. I’m 66 and feeling good. I’m so grateful for everything; even my CLL diagnosis. That may sound odd to you but there are so many other worse diagnoses we could have been dealt. We have a lot of hope.
The glass is half full. Take care of yourself.
FWIW, one of the parameters for this diagnosis is *3 months of elevated blood lymphocytes above a certain number* (in the US, IDK about other countries). In addition to specialized testing that takes several weeks for results to come back (if you are in the US). So you may not get a 100% definite answer first visit when you see the hematologist, unless you have older blood results with elevated lymphocytes above 5000.
Stew, DON'T believe what Google says and CLL isn't a death-sentence. It may not be curable but it is treatable so that you can live a completely normal life
am told if you are going to get leukaemia CLL is the best one to have. Normally slow developing over the years and very treatable. Don’t worry you can get much worse things. I am 82
Hi Stew, I was diagnosed 5 years ago @ age 57 and I’m still on W&W. At time of diagnosis I was petrified and confused, couldn’t sleep, eat and I was a basket case at work. This support group has been a life saver. You will be just fine! 🙏
I find doing some sort of exercise definitely makes me feel better.
All the best,
Angie
Stew, I was in your shoes five years ago when I was diagnosed with CLL and the doctor got me a great specialist who ran tests and put me on Watch & Wait. He got me on this site which had been a godsend. The folks here are knowledgeable and caring. Learning is key to help stabilize the emotions you feel. Welcome to our group. I wish you all the best.
Hi, Stew, sorry you have to be here. 41 y/o here with wife, kid, house, etc. Have had this disease for the past 15+ years and just now required treatment. I am almost two months into treatment, and although I can't say it's been fun, it really has not been all that bad either. Some side effect but in general, I feel better than I have in 10+ years. As with all new things, it's a little hard to manage at first. But I think you will find that you have great treatment options. With a little luck, you will not need treatment for many years. Feel free to reach out.
Jeremy
I echo everyone's comments and suggestions.
If you are positive for CLL you'll have plenty time to learn about it and digest the subtleties.
Unlike so many other cancers, a CLL diagnosis is not like crossing the Rubicon.
The common "cancer" perception: "Yikes I have it, the doctor said we need to start radiation/surgery/chemo immediately and in two days I'll look like I barely survived a horrible industrial accident"
A CLL diagnosis, especially an early one is not that at all.
You will have (most likely) many years before you make decisions concerning treatment .... aka: watch and wait -- -- -- which hopefully doesn't' become wait and worry for you.
You can meanwhile live your life, continue your CLL education, find a CLL specialist, which may not be the first Dr you see, and embrace a healthy lifestyle. And yes, a good CLL specialist is who you want on your team.
You can also consider whether or not to make a positive CLL diagnosis public or not.
It sounds weird, I know, but even with a positive CLL diagnosis , you will most likely find that, except for more frequent doctor and lab visits, perhaps twice, three or four times a year, your life won't change that much.
I truly believe CLL patients are in a golden age when it comes to treatment options; so many to pick from.
Wrapping your head around W&W as opposed to leading an immediate attack can be difficult to comprehend.
However, as you travel this road you will notice that fine treatments that weren't available, or just being tested, in 2022 will have become mainstream five years from now.
Get a drink, take a hike with the family, go out and hear some live music.
Hello Stew64! I was diagnosed 1 year ago during my annual physical. I had no symptoms then and still don't. I, like you, feared my life was over. We were 1 month from retirement at the time. You have come to the best place here! This community is priceless. I just recently reached out to them myself. They have helped me tremendously. It's a wonderful caring group of people that are here to help you understand IF you find you do have CLL and will guide you along the way. Give yourself time to calm down from the shock. If you have CLL, remember, it is CHRONIC AND TREATABLE. The breakthroughs recently made give us all such hope. One day at a time. Take a deep breath and get some sleep.🙂
The anxiety is crippling at the moment.I see the Haematology medic on Tuesday
I hope you find that knowing more about your CLL helps reduce your anxiety. Please share your anxiety with your haematology medic. IF you have CLL, they may run a blood test that they don't usually do until just before treatment in Australia (FISH testing), which can assist with estimating the likely tempo of your CLL. You should also ask for a copy of your immunophenotyping flow cytometry test used to diagnose whether you have CLL, as that contains some information that can provide you with an indication of your likely rate of progression. Do take someone with you to take notes and help you recall the main points of your discussion; most likely you'll be too distracted to remember much.
Hopefully, you've found our Pinned Posts section:-
healthunlocked.com/cllsuppo...
If you find anxiety an issue with regard to your health, there are methods that can usually successfully help with this. Because CLL is a chronic condition, it's not unusual to find worry about your future having more of an impact on you than the condition itself!
Neil
Stew64, AussieNeil has given you terrific advice. I hope you're feeling a bit more calm. You are not alone in this.
Hi Stew, hopefully you will be fine. I was diagnosed in January 2010, I am 84 years old and still going strong. The keyword as it’s been stated below is chronic it is a disease that hopefully will be managed and you can live decades ahead with it. However, I do recommend as you embark on this journey that you find yourself a CLL specialist. Critical to do this. Blessings to you, Alvin
Again welcome.
I was diagnosed with CLL back in 2008 and am now in my fifth season of Chemo with four different chemo regimens (I only go 2 years before needing treatment). I have been hospitalized four times, had kidney cancer, but I have been and continue to work full time through all of it. I continue to enjoy life.
So I hope my experience can be an encouragement to you that you can survive this.
God bless!
Feeling very depressed.
Very nervous and anxious.
Miracles of science and hope for us
CLL and now very elevated Monocytes
Life with cll. Another new concern.
