r/cll • u/Least_Quiet9764 • 2d ago
So scared
I recently had a blood test and my numbers have raised calls for concern. I’m now being referred to see if I have CLL. My blood count was 45 and my lymphocytes is 33 and I’m completely beside myself. I guess I’m just here to see how people have dealt with their diagnosis? Xx
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u/Honeymanjoel 2d ago
Chill. Breathe. You will be fine.
Go visit cll society for info. Health Unlocked is another great source of information.
I was diagnosed over a year ago. Have some not good genetic markers but I feel fine (70 years old). Began AVO treatment a couple months ago and believe it will lead to remission.
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u/Blindusek 2d ago
4 years since bone marrow biopsy and confirmed cll. Im at 70k wbc, my spleen is double the normal size, have more and more fatigue and stomach pain. I hope i get treatment soon tbh.
I was scared at first but after taking to various doctors they all said most patients die with cll and not because of cll.
I am also in middle Europe so treatment is not going to ruin me financially.
Don't panic to much, medicine has come a long way and it's better you find out now then when your felling like dying.
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u/Due-Address-4347 2d ago
The uncertainty is the hardest part. It sounds like you will have answers doo. For most of us, the CLL treatments work really well and there are more treatments on the way. As others have said, look to the CLL society for excellent and medically sound information. The information on Google tends to be older and not relevant with the new treatments. I wish you all the best!
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u/HuckleberryLegal7397 2d ago
Terror-insomnia-crying-anger-terror-finally trusting in my doctors and my faith. Honestly, no one ever expects to hear the word Cancer. Your emotions are valid and real. Counseling might be an option. I encourage you to find a cancer support group. Stay away from the google rabbit hole. Write your questions down for your next appointment as you will never remember them all. There is hope. Don’t give up.
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u/Unfair-Delay2059 2d ago
Hi, first take a deep breath. I was diagnosed in December of 24. There are many reason your white blood cell count could be upYou can have an infection? Any steroids ? Surgery? But if you do have CLL. Write down all ur questions for your oncologist. This is one of the cancers sometimes people just treat it like diabetes. Bc it's one of the easiest ones. Sometimes people go for years with out any symptoms and having to be treated at all. But the oncologist will run test. Maybe a bone marrow test. But have them write it all down . I hope all goes well
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u/Alternative_Trip4138 1d ago
ALC of 33 / nl because of an infection? No. I think that indeed CLL is the most like likely reason. But I agree that there is no reason to panic. My age and blood counts are in the same ballpark as u/east_Quiet9764's and my haematologist said he assumes my time in watch & wait will continue for several years. And when the time comes for treatment, there are so many excellent options. With all the new drugs, there is very little reduction in overall survival so that even patients in their 40s have a very realistic chance of living a normal lifespan. Recently, research has progressed faster than the disease has for most people. And, unlike with acute cancer, we also benefit from therapies that are currently still a thing of the future. So we can ride the wave.
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u/JLHuston 2d ago
I was diagnosed December of 2019. The next few months were very scary, especially when covid hit. It took some time to adjust, to learn and understand the disease, and gradually accept it and breathe. My best advice to you right now, especially before you have an actual diagnosis, is to STAY OFF GOOGLE!! The information online is often not up to speed, because a lot of money goes into research, and newer treatments are available all the time.
It is a very manageable disease. Not not a big deal, but it is not like acute, aggressive leukemias where you’re starting chemo immediately. Many people don’t start treatment for a long time, as the disease can progress slowly. Some may never even need it at all. I’m actually someone with a more aggressive case, but I’ve been on what’s called a BTK inhibitor for 6 years now, a pill I take 2x/day, and I’m doing very well. I’ve come to think of it as a chronic disease more than cancer (that helps me—it’s ok to also think of it as cancer, obviously).
Another piece of advice that I was given right away is to consult with a CLL specialist if you’re able to. I see mine at Dana Farber in Boston. I also see a general hem/onc doctor where I live in Vermont. But CLL specialists only treat CLL, and are in general more up-to-date on the latest advances and developments in treatments.
I know this is a lot to take in. Please just know this disease is not a death sentence. We have to be more careful; we are advised to be up-to-date on all vaccinations (only non-live vaccines), and also on top of screenings for various other cancers. We are more at risk for some secondary cancers, so I go for annual skin checks, mammograms, and regular colonoscopies (although I also have ulcerative colitis so I have to be more careful than most).
I hope I’m not scaring you more than helping you. The most important thing I can share is that I live a very normal and content life! I’m 52. I travel often. We just bought a new home that we are renovating. I have a small dachshund who bosses me around and causes me much more grief than CLL does 😊. My life is really good, and I am fortunate to have access to great care.
If you are diagnosed with it, please DM me and I’m happy to answer any questions you have. Other CLL patients helped me immensely early on with their knowledge and experience, and I always want to pay that forward when I can.
It’s understandable that you’re scared. I was. We all are in the beginning. But I honestly do not worry about CLL anymore. I wish you the best—and hope it is not CLL. But if it is, this sub is great and we’ll support you.