New diagnosis of CLL stage 0

[LadyfromFlorida]

I was recently diagnosed with Stage 0 CLL. I had elevated WBC and Lymph counts for the last year and was sent to a Hematologist. He diagnosed me with CLL. After my initial shock and fear, I have been trying to learn more about this disease.

[Pacificview]

Good Morning to you, your up late. Let me be the first here to give you a very warm welcome to our group. This is a really good place to search for answers to many of the questions you will have. There is quite an information archive along with your ability to ask questions of the group.As you get test info on your particular disease course. You can enter it into your profile. That will give members here better ability to answer any questions you might have about your particular disease course. As to whether your disease is progressing or stable is determined by your CBC with Differential and whether you have symptoms. Any obvious swollen lymph nodes etc. Your disease will fall into 3 groups typically. Never needing treatment. Years and years of being observed and then treatment. Or maybe a very small chance of a rarer case of needing treatment more quickly. For me, I had no symptoms at diagnosis and it took 5 years before I needed treatment.

My first thought is that your most likely very early in your disease, if you do not have any symptoms?

Again a warm welcome to you!

John

[LadyfromFlorida in reply to Pacificview]

Thank you so much for the information and warm welcome.

[lankisterguy Volunteer]

Hello LadyfromFlorida,

Welcome to the club that no one wants to join. But we’re here for you!

There is a wealth of information to help you up the learning curve for this strange disease- there are many links in a box on this page labeled "Pinned Posts" please look for it in the right column on a computer screen, or way below on a mobile device. There you should find this:

healthunlocked.com/cllsuppo...

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Below is a greeting from another support system, the CLL Society

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, but we’re confident that we can help ease the fear and confusion by giving you a few steps to follow that we’re confident will make your journey with CLL/SLL easier. Check out this welcome video here cllsociety.org/newsletter-s... .

Unlike many other cancers, you will likely have time to digest the news and learn about your disease before needing to start treatment – that is, if you ever need treatment at all. Roughly one-quarter to one-third of people diagnosed with CLL/SLL remain treatment and symptom-free.

First, you should start to gradually put together your CLL/SLL “team.” This team is a whole gang of people to support you through this “new normal” that you are facing. Who are the players on this team? This worksheet will help guide you to assemble 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 consistent exercise are among the habits that can improve your quality of life, survival, and help ward off other comorbidities. Keep current with recommended health screenings: physicals, mammograms, colonoscopies, etc. Make sure 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. You should also get a 3rd dose of one of the COVID-19 mRNA vaccines as well. And 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 who get a diagnosis of 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 extremely effective at controlling, if not reversing, disease. Clinical trials are constantly opening with new drugs, drug combinations, and cellular therapies. People with CLL are enjoying longer and better lives with CLL/SLL than ever before.

CLL Society offers reliable, physician-curated, patient-friendly information, and resources. It includes fundamental information, deep dives into specific topics, video interviews with top CLL researchers, real-world advice, clinical trial information, and much more.

To make sure that you get the most up-to-date information, sign up here to receive the CLL Society’s weekly emails. 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 a broad range of CLL/SLL-

specific educational materials for both doctors and patients. cllsociety.org/cll-sll-pati...

• The CLL Society’s Expert Access™ Program pairs qualifying CLL/SLL

patients to connect with a CLL/SLL expert via video consultation in this free, HIPPA compliant, second opinion program. cllsociety.org/cll-society-...

• 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, but with the right care and support, many patients now enjoy a normal, healthy lifespan. CLL Society is here to help educate you and connect you to experts and other 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™

Stay strong. We are all in this together.

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Len

[GMa27]

I am from Florida too....southeast area. What area do u live & who is ur doctor? It is shocking at first. I was on W&W 12 years before treatment.

Try to relax for now ...it can be overwhelming and for most it is a chronic slow disease.

[LadyfromFlorida in reply to GMa27]

I am from Parkland in South Florida. My Hematologist is Dr Sumit Sawhney. I want to find a CLL specialist. Hopefully I will be on W&W. I do have an enlarged lymph node on my neck and increased fatigue. I only saw my Hematologist once and was told to come back in three months. My Fish test was positive for 13q deletion and my flow cymetry confirmed CLL. Thanks for the encouragement! I need it right now!

[GMa27 in reply to LadyfromFlorida]

You have the best deletion. I was 13q mutated. Are u mutated? You are near Miami. There is a specialist there. I can't remember the name. I used a local one till I needed treatment. Used a few specialist for opinions but got treated by my local hematologist. Others were too far. We have a CLL lunch group that meets few times a year. If you are free Friday, we are meeting in Boynton Beach. I will pm you. 🙏💕

[LadyfromFlorida in reply to GMa27]

I would love to join the group the next time you meet. I have an appt Friday so I can’t make it this time.