First post

[Mokoia]

I joined the community over a year ago when i got a routine blood test back that was a bit high but below the threshold for further tests. Continued that way for 18 months until last week CLL was confirmed while doing a biopsy for a suspect mole and having a melanoma removed. So a double whammy. More surgery and tests to see if the melanoma has spread to my lymph nodes plus it looks like i have had CLL for a couple of years. I am 59 and feeling very well and healthy. As expected i am trying to process it all. I have told my wife and children but in two minds whether i want yo be open with everyone or keep it secret. I would be interested in the experiences of others. Is there a down side and being honest and open about the diagnosis? My immediate desire is to make my next ten years my best ten years.

[lankisterguy Volunteer]

Hi Mokoia,

I was 61 years old when diagnosed in 2008, (you can see my detailed treatment history here:

healthunlocked.com/user/lan... (look for the bio and click "read more" )

Unlike most CLL patients I have an aggressive form of CLL and need almost continuous treatment, but the drugs are available since 2013 to control this disease, similar to diabetes or high blood pressure.

I did not share the knowledge of my CLL while I was working, since I feared that uninformed people would consider me an invalid or likely to die suddenly. But once I retired I was open about my condition.

In addition to being a Volunteer Moderator here, I also am a Facilitator for the CLL Society and we greet newly diagnosed with the message below.

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, 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/cll-society-...

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:

Our Patient Education Toolkit contains a broad range of CLL/SLL-specific educational materials for both 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, 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.

-

Len

[FiArt12X]

it is tough in the beginning who to tell and what to tell them. This is a chronic cancer (No cure)! However, so many new treatments and therapies have been developed once you need that your life can proceed fairly smoothly.

You do need to be extremely aware of secondary cancers like you acquired. Use lots of sun screen! And if you’re not already involved with a specialist in CLL try to locate one.

Again, it is a personal choice on who to tell and what to tell them. The CLL society based in the USA has a good site with a lot of information that could guide you on these issues.

[Spark_Plug]

Would you like to increase the feeling of being misunderstood? You're going up against a cultural visceral reaction to the word cancer.

Even family members, and friends won't really follow the explanation, it's tough self-educating about this disorder, nigh impossible getting the simplified concepts to take hold in even really sharp friends.

This disorder, is also very different for each patient, so one carries it differently. I'd leave it on a need to know level. Those that are not in a professional medical relationship need not even know what CLL stands for. I now say, "I have a blood disorder that leaves me with a decreasing immune system".

Professionally, they don't need to know unless you are trying to get some accommodation [please remember, I'm in the U.S. so our laws and health systems are different, so these are from my opinion, and I'm no expert].

Others will share, their views. However, I wish I had a do-over button from my experience.😖

[BigfootT]

Mokoia, I did share my diagnosis with my immediate family and a few close co-workers. I actually found the co-workers to be quite therapeutic.After I shared my little blood issue I found out one was a 15 year breast cancer survivor who had some nasty prognostic markers at diagnosis. The other was on active surveillance for prostate cancer. A third was a recently diagnosed diabetic and a 4th shared her 42 yr old husband's CML journey. They all helped me immensely with the initial diagnosis processing and were actually more helpful than my family members who I believe were also going through some stages of grief.....primarily denial. The other thing that happened early on was my urologist shared his young wife was also a breast cancer patient and actively going through treatment. We talked general oncologist vs. Specialists.

Not sure if it was the 'old misery loves company', but I found out none of us are alone with these medical challenges and talking about them certainly helped me.

All the best, Bigfoot

[Pinecrest]

I only told my immediate family, but my Mom told everyone she talked to.

People mean well but they treat me differently. Instead of an upbeat and happy “How are you doing”? Now they greet me with a sad concern “how are you doing”?

P.S.

I saw a webinar with a CLL specialist recently and he ended with “ no one should die with CLL today with the treatments we have”.

Good luck

[Islandvibes]

I didn't find any problem with telling people about Dx . I had been having extreme fatigue , so for me it helped explain why I had been such a homebody for couple of years. I have not encountered any negative reactions from family or friends. I keep a sense of humor about the whole thing ( after the initial shock of finding out I had CLL ) with my friends . I use it when I don't want to do something, they don't buy it. I've been lucky with a slow growing type and am in early stages. Live your life and have fun. If you're feeling good then lucky you. You have time to work on health both mental and physical .

[Ptown]

Hello Mokoia, When I was diagnosed at age 54, I was teaching elementary school full-time. I shared my diagnosis with my family, friends, co-workers and students. It was very edifying as to my 10-year-old students questions and concerns. One of my little guys seemed nervous and asked if cancer was contagious. It developed into an age appropriate science lesson.

My friends and family reacted with concern and became very vigilant about not being around me when they were experiencing respiratory illness. And this was before the pandemic. Knowing about my health situation helped them help me to stay safe.

I am sending support as you manage this new part of your life. Take care, Carolyn

[Sepsur]

not telling people has problems for those close to you because they have the burden of you being ill and also who or who they can’t tell. I chose to be an open book - which has its own issues - I didn’t always look ill enough for some people, or more importantly, my illness was none of their speculative business.

[mrsjsmith in reply to Sepsur]

Agreed ! When I was diagnosed I sat in a friend’s shop and cried and drank copious amounts of wine, so pretty soon every one I knew had heard, and I quickly found a great support network. The interesting challenge was as Sepsur mentioned we often don’t look ill, so after first line treatment most of my friends assumed I was cured.

Colette