CLL diagnosis

[Tonightweride]

Hello all, I have just been diagnosed with CLL, because of a blood test in preparation for knee replacement surgery! I have a no symptoms other than mild fatigue. The encologist said this disease doesn’t mean that it’s the end. Some people go for years without symptoms. I am in good health and stay fit and feel healthy. This diagnosis is still very scary even though he reassures me it’s treatable! I am hopeful, that I can stay healthy.

[ANewMe2024]

Hi,Welcome to the club that none of us wanted to join. I'm glad you found us though! I too was diagnosed recently, 1 month ago. Mine was discovered because of some higher than normal blood counts. I never expected the doctor to say I had CLL. I still have'nt fully wrapped my head around the diagnosis but I am told by so many wonderful people on this site that acceptance will come. I have never been so frightened in my life. The word cancer is uttered by the doctor and then you tell me we are just going to watch it until it becomes problematic?!! It goes against everything we know about cancer. You hear the word cancer and you immediately want it out of your body. However, this kind of cancer is slow growing so we normally have time on our side. At diagnosis a lot of folks are put on watch and wait. Some call it watch and worry because it can be stressful. While on watch and wait you will have blood draws every so often while doctors monitor your blood and/or symptoms until it becomes time to treat. Many people on this site have been on watch and wait for years. This may be your path as well! One thing to warn you of, I went in search of information from Dr Google and frightened myself even more. I would suggest you don't do that! The information is outdated and doesn't take into account the new targeted therapies and their effectiveness. That being said, this is a serious medical condition that will need managed throughout your life but it is by no means a death sentence. With proper medical care and diligence with your health it can be managed a long time with the treatments that are available now and there are many more in the pipeline. The treatments available now can keep control of the condition for many years. One of the biggest threats to us with CLL are infections as CLL does compromise the immune system to an extent. So get vaccinated, get boosters, keep away from illness as much as possible, have routine screenings such as colonoscopy, prostate etc..You will come to hear from many more people on this site with much more knowledge and experience since I am such a newbie. No question is off limits, we are here to support you through this long journey!

[Tonightweride in reply to ANewMe2024]

Thank you so much for your words! You are exactly describing how I feel now! You make me already feel better! Thank you so much!

[ANewMe2024 in reply to Tonightweride]

This forum has been lifesaving for me. There are so many people in different phases of the disease. So much experience to share. I'm sure others will be along soon as well to welcome you.

[scryer99]

Hang in there... and check out cllsociety.org, there are a lot of good resources there for new CLLers to learn about this disease.

Your oncologist is right -- also, many people go years before even needing treatment. It's counterintuitive but well supported by data: CLL is best left alone until it causes problems that force treatment start. That Watch and Wait period can be 10 years or more.

And even if it's not, there are many good treatments available now; the treatment options have progressed a great deal in the last few years. Odds are good that you will come through this in good shape.

[Tonightweride in reply to scryer99]

Thank you for the encouragement! So glad that I found you all! You are really helpful in making me relax and and lose anxiety over this disease!

[G1llHa1n in reply to scryer99]

Around a third of CLL patients never need treatment - the consultant that diagnosed me around 10 years ago pointed this out and was of the view that I might be one of them - and he could read the markers. He also said that CLL is something you die with not of - and there have been many treatment developments in those 10 years with more still coming down the track. (and he is now one of the UK top CLL experts - I would have stuck with him if it wasn't for the fact I now live about 500 miles away🙄).

[Tonightweride in reply to G1llHa1n]

Thank you! I love hearing these stories! It’s a process to come to terms with this diagnosis and move forward, but you all are helping me feel so much better!

[Kiwidi]

Good luck on your journey. I have been on watch and wait for nearly 6 years now and I live a full and active life. I try to eat a balanced diet and exercise every day.

Since you are a farmer and probably work outside most of the time it’s really important to make sure you are diligent about protection from the sun. We CLLers are very prone to developing skin problems. I had a large SCC removed from my shin a couple of years ago. Make sure you get checked regularly- it wasn’t pleasant! Mind you I live in Aotearoa New Zealand where the ozone layer is very thin so that may have had something to do with it.

Kia kaha (stay strong)

D

[Tonightweride in reply to Kiwidi]

Thank you! Good advice! I am so grateful for everyone’s support!

[Kiwidi in reply to Tonightweride]

It is an amazingly supportive site. There are so many knowledgeable people on here!

[Thursday45]

So very sorry to hear about your diagnosis. There is plenty of information and support on this site for you. I was very shocked and upset when I received my CLL diagnosis after a routine blood test and it did take me a few months to assimilate the news. You can ask any questions here and someone will be able to help and reassure. Take your time and be very kind to yourself. Good luck with the knee operation.

[Tonightweride in reply to Thursday45]

Thank you! It is scheduled for the 19th, so coming right up!

[prbs2707]

Hi,

I was you back in 2021!! Went in for a minor heart procedure and they found CLL from the routine blood test. At the time I too felt fine although beginning to loose energy as I am a keen cyclist and my performance was dropping off. To my horror I was diagnosed with stage 4 CLL and I was in for treatment within 12 weeks. It was also in deepest darkest Covid at that time so things were a bit chaotic.

Fast forward to today and I am feeling great, in fact better than I have for years. There were a few hiccups along the way (you can read all about it on my profile if you want) but the treatment has been remarkable and I am now in remission and at a consultant's meeting last week they said they dont need to see me now for 6 months as my blood numbers are so stable.

So dont panic! You may not need treatment for years and some lucky folk never need any at all. My consultant told me to think of CLL like diabetes. In other words you can live a pretty normal life with it by dealing with it via the wonderful new drug therapies as and when it rears its head. My biggest takeaway from the first meeting is when he said you will likely live a normal life span and will probably die with CLL not from it. I liked that.

One thing I can tell you is that you have absolutely done the best thing in finding this forum. It has been my saviour over the last 3 years. Its full of clever people who can give you the answers and facts (rather than some of the nonsense you find on the internet) to anything you need to know about this disease and its impact both physically and mentally. Just as important are all the people like you and me who offer wonderful support and advice and share their personal stories. All of a sudden you are not aone with this but part of a wonderful supportive community.

So I send you lots of luck and very best wishes for the time ahead. And if you ever have a question, or need help or just the need to 'unload' your feelings, jump on this forum its a geat place! Patrick

[Tonightweride in reply to prbs2707]

Wow Patrick, you are an inspiration to me! Thank you so much for sharing!

[Nucleusman]

you will die with but not from CLL . Treatment works side effects not too bad. Live the rest of your life!

[Tonightweride in reply to Nucleusman]

Thank you!

[Mojave]

Hello, I was diagnosed with CLL in 2010. I have had no treatments and I’m doing fine. I attend for quarterly blood tests and many times I’m tired. I sleep when I’m tired sometimes for hours and sometimes just a snooze. I’ve found that keeping a positive attitude has helped me. I always tell myself that I could get hit by a bus and be gone. My hematologist is fantastic and keeps my spirits up when I see her. All the best in your journey. New hope every day. I also await two knee surgeries.Hope springs eternal. Jae

[Tonightweride in reply to Mojave]

Thank you! I’m finding that acceptance and a positive attitude is probably going to be very important! I’m working towards that goal and all of your kind comments are helping me greatly!

[Kiwidi in reply to Tonightweride]

Yes I reckon positivity goes a long way. Just keep thinking about the fact that 30% of us never need treatment and that you may be one of those!

[Big_Dee]

Hello Tonightweride

You came to the right place to help you deal with this out of nowhere diagnose of CLL. You will discover that CLL is a blood cancer and most importantly a cancer of the immune system. This web site will give you hope and a wealth of CLL information on treatments which will take you years down your road. Blessings.

[Tonightweride in reply to Big_Dee]

Thank you! Peace and blessings are exactly what I need and I hope for these for all the kind people on this site!

[Fran57]

Welcome!

Don’t despair… there’s lots to learn, and you’ll soon feel more confident with understanding it all.

It’s my husband who was, surprisingly, diagnosed with CLL about 11 years ago ( I can hardly believe it 🤦‍♀️) and he is doing very well, having had two lots of treatments over the years.

This site is so supportive and full of extremely kind and knowledgeable people; I could not have coped without them… they are like great friends!

If you have any questions, and you will have, just ask, because you are never made to feel silly, and will be hugely supported.

Good luck,

Fran 😉

[Hidden in reply to Fran57]

Hi,

I went to physical two weeks ago, had high WBC and lymphocytes, and found myself in oncologist’s office last week discussing Fish results. The language around this cancer is weird. It is a leukemia that is actually a lymphoma. I have an absurd amount of lymphocytes in my blood and I am Stage 0. I have been told I have “good cancer” and should be glad that I have Trisomy 12 instead of 53. Here are four things I learned in first week.

1) It is healthy to get into the fetal position and scream and cry.

2) Oncologists should refer every CLL patient to a mental health specialist.

3) Watch this and then staff off the internet. This amazing man calmed me down.

m.youtube.com/watch?feature...

4) Start a new, fun hobby. At my new gym, I get to hit things with a sledge hammer. Good fun.

Best,

East Bay Dad

[Tonightweride in reply to Hidden]

You are correct! Some counseling would really help, but we are lucky that this isn’t the bad kind! The kind people on this site have really helped me wrap my brain around this diagnosis!

[mkmo]

My husband was diagnosed in 2011 during a routine checkup! Went several years on “watch and wait”! When WBC went way up, he started on Inbrutinib chemo pills! Several years later, he is in remission! Rx dosage lowered 2 times! Educate yourself …. This is not a death sentence! Likely something else will take you! Stay positive and healthy! God bless!!!

[Tonightweride in reply to mkmo]

Thank you! I still walk four miles every day, and I plan on keeping up my normal work! I’m starting to accept and I am much calmer thanks to all you great people!

[mkmo]

that’s great! My husband works out and it makes a difference! Just be sure to rest when you feel fatigued!!!