Just received the 2nd set of blood tests from an un-connected complaint, for the cell markers conclusion to reveal I have CLL.
Currently I feel as well as a 59 year old could feel, I am trying to come to terms with what I have been told, my GP has since reffered me to the the local Hematology department.
Any supporting help or advice would be much appreciated.
Many thanks
Welcome and sorry to hear of your diagnosis of CLL. However, you have come to the best site for sharing and learning about CLL. It would be helpful to know your country.
Let me say one thing that you may already know, CLL is in most of us a slow-growing and manageable cancer and there is a lot of research ongoing as well as more than one or two treatments already approved with some being tested in ongoing trials. So, there is not a sense of urgency in the diagnosis because, there is time to watch and wait before any treatment has to be suggested.
The following posts are important and helpful esp. to new members:
When you are first told it is absolute horror, your sky falls in.
Once you have your haematology appointment all will be explained.
CLL is a CHRONIC blood disease. You live with it rather than die from it. Science and research are making us with CLL live long healthy lives.
You can start googling now for extra info or wait till your appointment. Any queries, write them down there will be a lot to take in over the next two weeks.
You will accept your diagnosis but others will think of Cancer when you go bald and thin and vomit everywhere. Not this cancer. You will make friends and dismiss others. If one in two people are to get cancer(they tell us) I choose CLL.
Lots on this website with lots of personal experiences most good with a couple of horrors.
Best wishes
the most important thing in my opinion is don't google and read stuff more than 1 year old. also although finding dates is important. i've found things that look current are actually copies of older material.
Agreed.
Many thanks for taking the time to reply, every positive comment helps
Hi 1-12-32, I was diagnosed 6 months ago and everyone here knows the shock of the diagnosis, especially when you are well. Everything I have learned has come from this forum and the amazing people who post and share their knowledge. Waiting for the appointments is hard but hopefully you will have a long and uneventful watch and wait 🤞🤞
I was on W&W 11 years (52 to 63) before needing treatment this past year. I felt great all thru W&W and chemo.
Hopefully you will be on W&W a long time. After initial shock, I just went on with my life and got my 3 times a year check ups with my oncologist. 💕🙏
Dear 1-12-32,
Welcome. Being told you have CLL is a life changing event, we have all been where you are right now; confused, afraid and angry. It takes some time to get past these initial feelings. But you do come to accept and recognize the need to respond to your new circumstances. CLL is a manageable illness, and to take back control of your life you have to be an active manager.
There are many of knowledgeable & compassionate people on this web-site who are willing to help.
Owen
Thanks Owen it all helps
Welcome to our community of CLLympho-manics
I just had my quarterly blood draw a few hours ago... after 21 years and 5 lines of CLL treatment... its become a ritual now...
Good place to start your journey is this publication...
In the U.K. things are done differently than the U.S. and we lack broad treatment options and many clinical trials, but the basic science in this guide is accurate and current.
nccn.org/patients/guideline...
There are no quick fixes and many quacks.. so choose your knowledge wisely.
~chris 🇨🇦
Just wanted to welcome you to the community....it is the best. I just stumbled on to to last December. I am a very long timer with CLL having had it for 30+ years. I learn something everyday as I read most of the posts. I have on Imbruvica 420 mgs closing in on 3 months...I am feeling great! I do receive IVIG every 4 week and that keeps me in a very safe place. Over the years CLL wears down the immune system. There is a lot to learn so go at it slow and easy so as not to be overwelhemed. We are all here for you! 🙏💕☘️😍
Welcome to the Group! We've all been where you are. It is terrifying to hear we have cancer and become numb and can't hear what the doctor is telling us. This is a Great group and full of Great advise and we are all here for each other. From all over the world. I am 57 and diagnosed with CLL and have probably had it for over 5 years. I am W&W. Defiantly get 2nd opinion after you have done some research about CLL. I went to MD Anderson in Houston Texas for my 2nd opinion. Man, those people are Awesome! I now have my doctor/hematologist/oncologist here in Oklahoma and my doctor at MD Anderson. I feel much better now. One of the best things is your Chronic and not Acute. This is a slow growing cancer. After I got my second opinion I decided to just go about normal and LIVE my life.
Hang in there and breathe . . .
Hi Michelle
Many thanks for your wise words I still await my 1st heamatology appointment at the local hospital.
It is such a shock to be told you have leukemia when you feel fine and are expecting years of good health. The shock will subside and hopefully you get the best news that your is the “smoldering” variety. We are here to help.
Sorry to hear you have CLL, I found out as well 1 year ago. I am 62 and took a less stressful job without insurance BEFORE I found out I had CLL. My White Blood count 1 year ago was 18. and now 50 but I am asymptomatic, I feel good. My Dr. at Cleveland Clinic says as long as I feel good and do not have symptoms, no treatment. He believes that at some point I will need treatment but not now. He does not go only by the numbers. This has been a great relief to know. Wake up and live life until you have to have treatment and then face it. It has been a great relief to me to know this is mostly slow advancing cancer. We will face it bravely, insurance or not! This forum has been a real blessing to me.
You WILL get through this! take it one day at a time, this forum with all these wonderful people who are going through it together will support you and share many hopeful thoughts!
Hi there,
Join the club🙂
I found out through blood tests to and had the sky falling episode to - it didnt last long though and is normal 🙂 my advice is don’t google as its out of date and can be negative - and listen to your consultant and this site is brilliant. Research is amazing as is treatment available.
I learnt with my family along the way to enjoy every day enjoy people everyday and dont sweat the small stuff - we go through life with eyes closed which is not good, this makes us appreciate things so much more and in my family our saying is - if its not life threatening dont worry about it 🙂 I wish you to continue to feel well.
Hi Retired46
Thanks for your kind words of support, its now approx 5 weeks from diagnosis, I must confess to feeling a little more relaxed after the initial bomb shell, I continue to learn a little more each day reading the various topics on this site, which to me has been invaluable, I hope you are doing ok.
Many thanks
1/12/33
Feeling very depressed.
Feeling worse after FCR treatment.
CLL and Numb Chin Syndrome
feeling down and sick
