I was diagnosed earlier this year (45 M). The doctor tells me I will need treatment at some point in my life... I'm in watch & wait (check back every three months) I feel normal. I believe I have a relatively low volume of the disease at this point: WBC under 20k.
Question: I've read that a significant portion of patients never need any treatment. This would obviously be a best case scenario... Is this possible for a young CLL patient assuming I live for another 30+ years?? Could I avoid treatment?
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joneill77
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The short answer is YES- it is possible, especially if your ALC / Lymph# level is very low and / or remains at a stable level.
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Now the long answer:
Welcome to the club that no one wants to join! But we’re here for you!
If you are reading this letter, you or a loved one have just been told that you have CLL/SLL or chronic lymphocytic leukemia/small lymphocytic lymphoma, an incurable but mostly highly treatable cancer of the B cell lymphocytes. B-lymphocytes are a type of white blood cell that works to protect you against infections.
We know that it's a scary and confusing time. Still, we're confident we can help ease the fear and confusion by giving you a few steps to follow to make your journey with CLL/SLL easier. So check out this welcome video here. cllsociety.org/cll-society-...
Unlike many other cancers, you will likely have time to digest the news and learn about your disease before starting treatment – that is, if you ever need treatment. Roughly one-quarter to one-third of people diagnosed with CLL/SLL remain treatment and symptom-free.
First, you should gradually assemble your CLL/SLL "team." This team is a whole gang of people to support you through this "new normal" you face. Who are the players on this team? This worksheet will help guide you in assembling your CLL team. cllsociety.org/wp-content/u...
An important player on your team is a dermatologist. Because of our weakened immune systems, people with CLL/SLL are at greater risk of developing skin cancer. Vigilance matters. A full-body skin checkup, annually if not semi-annually, is essential to discover any suspicious skin lesions that may arise, such as a mole that doesn’t look quite right before it has a chance to become malignant. Between medical skin checkups, have someone check your back for you, as that area is difficult to see yourself. Oh, and remember your sunscreen!
Pursue a healthy lifestyle. While there is no absolute consensus on what constitutes a healthy lifestyle, eating fresh, unprocessed food and regular exercise are among the habits that can improve your quality of life and survival and help ward off other comorbidities. Keep current with recommended health screenings: physicals, mammograms, colonoscopies, etc. Ensure you are up-to-date with your immunizations (ex., Prevnar; Pneumovax, Shingrix, annual influenza, COVID-19). Important: CLL/SLL patients should never receive live vaccines. To help you prepare should you become infected with COVID-19, please see our COVID-19 Action plan here. cllsociety.org/2021/07/covi...
Most people diagnosed with CLL/SLL can't resist going onto the internet to learn more about their disease. This can be hazardous and feed anxiety as many websites contain unvetted or out-of-date (“looking backward”) information. Breakthroughs in the treatment of CLL continue to evolve at an impressive pace. Novel, non-chemo drugs have been developed with increasingly fewer side effects and are highly effective at controlling, if not reversing, disease. Clinical trials are constantly opening with new drugs, drug combinations, and cellular therapies. As a result, people with CLL enjoy longer and better lives with CLL/SLL than ever.
CLL Society offers reliable, physician-curated, patient-friendly information and resources. It includes basic information, deep dives into specific topics, video interviews with top CLL researchers, real-world advice, clinical trial information, and more.
Sign up here to receive the CLL Society’s weekly emails to ensure you get the most up-to-date information. cllsociety.org/newsletter-s...
Here is a small sample of what CLL Society offers:
• Don’t underestimate the importance of a CLL/SLL support group and network.
Our patient-led support groups provide a supportive and educational peer-to-peer environment. We have almost 40 CLL/SLL-specific support groups across the United States and Canada. You can find the link to a support meeting near you here. cllsociety.org/cll-specific...
• Our Patient Education Toolkit contains various CLL/SLL-specific educational materials for doctors and patients. cllsociety.org/cll-sll-pati...
• CLL Webinars invite CLL/SLL experts from around the world to discuss new therapies, trials, and the disease itself. These webinars are live or can be watched after they have aired.
You are not alone. CLL/SLL may be incurable for most. Still, many patients enjoy a normal, healthy lifespan with the proper care and support. CLL Society is here to help educate and connect you to experts and patients like yourself. The more you learn about your disease, the more you will be able to work with your doctors to help make the best decision in the treatment for you. CLL Society believes in our motto: Smart Patients Get Smart Care™
Is it possible you never need treatment? Yes, anything's possible.
Is it likely you'll be in that group knowing how young you were diagnosed? Probably not.
But treatment is improving every day, so the longer you put it off, the better off you'll probably be. So, as another person currently in their mid 40s whose had a few years of W&W under my belt, I'd encourage you to follow some/most/all of Len's advice and also to set yourself some goals. Rather than "never treatment", maybe set a timeframe you'll aim for to stay in W&W. For me, it was my last kid getting to college, so that was 10 years W&W. I'm currently 3 years and 3 months in (so in year 4), and my spleen's gotten a little bigger and my WBC has gotten a little higher, but I'm still mostly on track for my goal b/c I'm not yet close to treatment. Which has been a welcome surprise for my genetic markers, age, and spleen condition at diagnosis.
If I miss my original goal and start treatment in year 8, at least I had something keeping me on a day in-day out healthy lifestyle path. Sometimes, you need the goal as much to keep you motivated as to achieve it.
My short term yearly goals have been to take a vacation to somewhere new every summer - and that's also been achieved every year so far - I figured I'm not gonna get a retirement of leisure travel, so I might as well do it now in a "no time like the present" mindset (which also helps me in the day in day out lifestyle path b/c I have to be healthy enough and energetic enough for the trips).
I was diagnosed at 46, I am on w&w 4 years later but going to need treatment soon. Don't worry your self with it. There is great medication out now for it. If you are 17p, 11q or unmutated you will need treatment sooner. If you are none of these you may never need treatment. I am 11q and unmutated and it's been 4 years on w&w.
Hi there, and welcome! I'm 59, diagnosed 5 years ago, and still healthy. The uncertainty can be troublesome, but I think the trick is just keep living your life as happily and fully as if you knew you'd live to 100!
Hi, Joneill77. I am in the same boat as you. I am 48, and I was just diagnosed 6 weeks ago. I haven't had a follow up, yet, but I've been trying to find out about this "10-25%" or "1/4 to 1/3" or even "30-50%" (on CLL society post) that never need treatment. I cannot seem to find actual data about this group. I have a handful of hypotheses as to why that is.
1. It is because doctors treat people who need treatment, and there's just not a lot of reason to keep track of all of those people who don't.
2. People who are not ill do not go to doctors to provide data, and likely just want to live their lives.
3. As this is a disease often diagnosed in people over 60 (at least historically) perhaps those with a more indolent version of CLL run out the clock before the disease catches up.
I am certainly hoping that it's more that this disease can be truly indolent and just never really progress.
Hoping to be one of these people, as I am certain everyone is at diagnosis, I have looked for ways to remain in denial... I mean... ways to support the theory that I may never need treatment.
Also, I keep reading in different papers that the line between HC-MBL and Rai 0 CLL is completely arbitrary. So, if your markers are good, and your counts are low, you have as good a shot as anyone at never needing treatment. I'm going to hold onto that idea at least until my next hema/onc appointment.
Whether it's MBL, CLL, or like Overlander likes to say "a chronic blood disorder", it really doesn't make any difference for steps to take. We still have to watch it to make sure it doesn't progress, and take appropriate action if it does. Plus, we need to take all of the other precautions (sun exposure, cancer screenings, etc.). There's no harm in hoping that we are part of the group that doesn't need to. And maybe, just maybe, even if it does progress, it will be far enough in the future that these amazing treatments they keep coming out with will reach the point of being curative.
Best of luck, my friend. I am rooting for us all.
Edit:
Thank you for your post on Reddit (under another username) from 5 months ago. That post is one of them that helped me to start calming down the night of my Dx. It's also the post that pointed me to this group. I had to look it back up, because I thought I recognized this username of yours.
Hi, whenever we fall ill the advice is to eat well and exercise. However, with CLL it may be that this advice is the only way we can hold off treatment for as long as possible. Exercise is essential to keep the body in good form but it does not look as if too many people take this point seriously. Exercise is a little more than taking the dog for a walk. Best wishes for a long watch and wait.
Hi, I was diagnosed in 2018 and was told at diagnosis I would need treatment in the very near future. I was overwhelmed with the amount of information provided and let the anxiety take over, thinking I possibly had every symptom they mentioned. I went for a second opinion and was assured I did NOT need treatment right away. It's been 5 years now on W&W and doing great. Listen to your body and take care of it (eat well and exercise, listen to your doctors of course but if it doesn't "feel" right, get the second opinion) and be sure to not let the anxiety of the diagnosis take over. Best wishes!
It will probably be determined by your individual markers which you may not find out until you need treatment. Depends on your medical system in Canada. I was diagnosed at 44 and was in W & W for 8 years. I am 11q unmutated (not great but could be worse) and started treatment almost 3 years ago. I’m doing well. You may go much much longer than that. Once you’re through the shock of the diagnosis, live your life is my best advice, and keep regular appointments with your doctor.
Hi I was diagnosed 30 years ago had treatment for two years just at yr 28 with ibrutnib and infusion of plasma but stopped due to getting irisitis causing my pupils to stick to my irises had to have operations to fix now back in wait and watch luckily. Don't sit around waiting to live or die you may never get ill but people these days have better options as when I was diagnosed it took almost a year to find out what type I had and they used to treat all leukaemias aggressively but with cll the outcome was very poor, my aunt had the same and passed away at 47 but that was in the seventies. My granddaughter had ALL found it at 12 she has been through hell with radiation and chemo she is now 19 she's had to learn to walk twice she has glasses now on heart meds has hearing aids and may never walk normally may never have children and she's been baby mad ever since she was able to talk she had a server reaction to one of the so called meds and it literally killed her they gather back it put her in icu for two months but didn't realise that it was burning her from the inside out she ended up black and crackly allover she had to be taken to theatre and three hour to remove it just last month august 2023 she had her blood sent to US to be washed and stem cells sent back and was told she was cancer free, I just wish they would try stem cells first before all the damage was done , and also that there is more push for natural medicine they try so hard to keep hidden. I pray she has a long happy life and to you if there's anything I've learnt it's live a full happy life and don't even think about it you will know if you get ill as with anything. PS if you don't travel or work in a place that demands it don't have the vaccines.
Diagnosed 12 years ago, no problems until ALC and other numbers began trending the wrong way in 2020. ALC is now at 200, no symptoms other than swollen lymph nodes, but my hem-onc started me on zanabrutinib a week ago to avoid problems.
No side effects or problems yet.
With current treatment options and future ones on the horizon, I'm confident I will live a normal life.
I’m on seven years with no treatment and on ww. Still feeling well. I prefer to call it no treatment needed instead of watch and wait. It’s a lot less ominous sounding. Be well!
At diagnosis (age 43) my WBC was about 40. Ten+ years later of W&W, my WBC is now at 25 so very stable in that regard. I asked my doc the same question and he said it is possible I will never need treatment but given how young I was when diagnosed, treatment may be needed at some point. Treatments have advanced so much in the last 5 years that I am very hopeful a cure is on the horizon. Or at least new treatments that can permanently keep CLL at bay.
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