Hi everyone
After getting diagnosed on the 28th June, I’m due a follow up with my consultant near the end of this month. I can feel my stresses building up even now. Do these feelings in time subside ? He said my WBC was 23 and I may need further scans/ tests etc... worried sick tbh !!
Apologies for asking these questions in advance 💙
Not to alarm you but it could take about a year.
A year of scans/ tests or a year of stress and worry ? Thanks for replying 💙
Everyone is different. I see people on here who still sound fairly anxious after a couple years. It is probably just moments of anxiety.
I sort of feel like I have hit emotional bedrock. After crashing through a couple floors I am at a point of thinking "whatever...." Just roll with the punches.
Howdy Lennc, Let me be the first to tell you there are many MANY of us out here who have "been there/done that". The anxiety will pass with time. How much time depends on the individual and how they approach this "bump in the road". This blog is full of information and support. Start with the topics list here and above all don't be afraid to ask questions. God Bless all CLLers.
Are emotional troughs and peaks normal ? I know I’m newly diagnosed and not afraid of treatment but more so getting told I have weeks to live 💙
When I was diagnosed in 2007 the website my GP told me to look at gave me 3 years ! They were very wrong.Talk to your Consultant and see what tests they want ! They are all fairly routine and find out the contact details of your CNS ( clinical nurse specialist ) hopefully you will have one. They are a good contact for questions and worries.
Colette
For many of us, even when we have no reason to be concerned, we get anxious before appointments. It seems to go with the territory. In the early stages after diagnosis it certainly feels more so. The 'weeks to live' scenario would be very unusual with CLL - chronic means long term remember.
Personally I would be pleased that my Consultant was taking an active interest and thinking about any tests I may need. Too many people on here are feeling neglected.
Colette
You’re in unchartered territory Lennc so you’re bound to be worried. I’m 9 yrs in and have my haematology consult (by ‘phone) tomorrow. I was 54 at diagnosis. Now I take it in my stride but in the early days I was pretty scared. Every little increase in numbers had me panicked and it’s only after time that you begin to settle a little and realise it has minor significance in the scheme of things. The WBC doesn’t tell us much, try to plot your absolute lymphocyte count (ALC) because that’s a greater indicator of how things are progressing (or not). The specialist is unlikely to be very concerned until your ALC reaches 30 (and you’re a long way off it seems) and starts to double every 6 months. The scans he’ll be doing are pretty routine at this point and will give an idea of a starting point. They’re nothing to worry about.
CLL is usually a marathon not a sprint though in the fullness of time you’ll learn that your chromosomal profile can influence the pace of your condition. If you’re under the NHS, they rarely offer this cytogenetic testing until treatment time.
Calm yourself, ask the questions that you need answers to and see this as one of very many consults you’ll have along the way. With any luck you’ll have a very boring form of CLL that’s not worth getting in a state about!
Best wishes,
Newdawn
NewdawnYour posts are always ALWAYS so helpful and amazing, be well~
Lenn, here is a post I did for newly diagnosed folks I hope is helpful for you.
You have just started on this roller coaster ride. It is kinda of up and down and all around. We all go through it. I'm going today for my yearly visit in less than an hour. And I still have a little White coat syndrome. Hoping that all your tests are clear so you may have some peace. 🙏🙏🙏
Thanks 👍
Hope all is well~
Please See a CLL Specialist and get another opinion. I was diagnosed with SLL/CLL in 2007 when I was 60. The oncologist I was seeing wanted to start treatment after 3 yrs with rituxin when my WBC was 28,000. I have poor markers —unmutated, trisomy 12+, CD38 etc. the doctor was sending me for yearly CT scans etc. I decided to get second opinion in 2011 and saw a top specialist Dr. Kanti RAI. I am so thankful. He said no treatment yet. He said I did have poor markers but to live and enjoy life. He said new and exciting drugs in pipeline and let’s wait as long as possible for treatment. One of the drugs was imbruvica. He said as long as platelets don’t go too far below 100 and hemoglobin doesn’t drop below 8 he was not worried about WBC count. He also said no more scans which can cause more problems. in September 2018 I started treatment with a WBC that was well over 300,000 going up to 697,000 platelets around 90, hemoglobin about 7.8 (then going down to 6.5with enlarged spleen. Started imbruvica. So far so good but wbc slowly coming down last month 38,000 rest of blood work normal. I think most of us starting a week before having to see doctor and have blood work we get anxious. It sounds like you may not need treatment for a number of years. Most of us need to try to calm our hearts especially before doc visits.
Thank you for this post, be well!
Lenny, stick with us, you will feel more positive soon. This group shares their experiences, which has shown me that I, at 73,000 WBC count, can be excited about the research happening. Many new treatments have been developed. I’m 3 years into W &W, 72 years young! Sandra 🙂
Easy to say but do try and stay calm. I think it is the fear of the unknown. You have done the best thing in joining this group. We are all in this together and all help each other in different ways. We have some very knowledgeable people able to offer advice. When you see your consultant ask if you can be allocated a clinical nurse specialist, I get such comfort from my Vicky, they will answer questions which may seem trivial but are important. Do join in the webinars with both CLL and Leukaemia care. I have just recorded a video for Leukaemia Care's Spot Leukaemia Early campaign which should be on the site soon.
I was diagnosed in 2018 and have been watching and waiting and in relatively good health. I am told that I may need to start treatment this Autumn and whilst being apprehensive, I am optimistic.
Here to chat if you need to.
Stay safe xx
Hi, I was about the same on numbers when diagnosed 3 yrs ago in UK, on watch and wait numbers now 47,apart from fatigue all good, next consult in 4 m ths.
Don't worry Lennc! As has been said, this is much more likely to be a marathon than a sprint for you. Learn as much as you can, join and catch up on webinars and you'll feel empowered. The new treatments for CLL are phenomenal and we're all on your side here. You're not alone. Join CLL Support, the Chippenham-based UK group.
Potplant
Hello and welcome.Please try not to worry too much. You’ll have lots of things going around in your head and there will be lots of questions to ask ( I knew nothing when my husband was diagnosed in 2013).
There are some incredibly knowledgeable and supportive people here.
I’ve learned a fair bit but there’s loads still to understand.
Try to be kind to yourself and patient. You will get there.
Stay safe,
Fran 😉
I was diagnosed in 2016 but have discovered an old lab report from an annual physical in 2011 that indicates I already had it. My doctor just flat ignored it as the numbers are clearly marked on the lab report. I am due for my annual follow-up with my specialist at MD Anderson this Monday the 19th and am starting to feel the nervousness kick in. When you feel good, it’s easy to skate along and forget about this nagging diagnosis but when pending your routine labs, it’s normal to start being anxious. I keep telling myself that I am in good hands and whatever happens, I will be taken care of. I am still in watch and wait and doing quite well so I make an effort to be grateful that I am still healthy and I have a great team of doctors if and when I need them. It boils down to understanding the anxiety and hitting it head-on. Wishing you the best as you set out on your CLL journey.
So well stated, take good care!!
Hello Lennc. The short answer is yes. It does indeed get better. Everyone's walk is different. Some of us have more aggressive/progressive forms, some not so much. Some people spend years in W&W, with no treatments. Others, like myself, spend a couple years in W&W then start treatment.
I was diagnosed in 2014 and given 2 years. I'm still here. Have good days and bad. I can't stress enough about getting second opinions and seeing a specialist for your subgroup. That is very important. Had I done what the local "general" oncologist wanted to do, I wouldn't have made it 2 years. Make sure you have all the information you need to make good decisions. And, the old saying of, "you are your best, and really only advocate", is true.
Also, remember, we are all different. So my walk with CLL will not be your walk.
Lennc,Yes many highs and lows. Shock and fear. Very normal and part of the process. Many solutions for this disease, but for now the # symptom will be anxiety. Avoid Dr. Google but learn the terms. Go to CLLsociety.org to get educated. Keep talking to us. Avoid telling everyone because later you might wish you were more quiet. If you need a therapist- see one. This phase WILL quiet down. We all promise.
Hello friend! I am happy that you found our community. It is an excellent way to find information from the people who are living with CLL, in various stages of Watch and Wait, to our friends who are in the midst of the many excellent treatments for our type of cancer. Please know this is a safe place to ask questions, occasionally rant, as needed, and to support one another.
As for me, I am still Watching and Waiting nearly 8 years from diagnoses at age 54. My complete blood count has stabilized and live carefully, especially with the pandemic.
Take careful notes at your appointments and ask any questions you want.
Sending you support from Michigan!
Carolyn
Lennc-
You are fortunate to have found this forum so early on this journey. I did not discover this forum until my third yr in w+w, now close to 7yrs. Only then did I begin to settle down. Here you will find such encouragement and support by reading others advice and experiences. You will learn a lot from the members on this list. I still get anxious prior to the next round of labs but less so as time goes on. We truly are all in this together.
Awe so scary.
Part of my work up when I was diagnosed was Scans head to pelvis which showed enlarged lymph nodes everywhere
My wbc was around 20. Over 6 1/2 years that number was like a roller coaster until it got to 225,000 and I had developed a game to only think about it on lab draw days.
And the other part of the game with my psyche was to see if I could break the record for highest wbc before treatment record
After treatment all the enlarged nodes on exam and scan were gone and treatment was hard but nothing as bad as I had imagined.
So prepare for a roller coaster ride and just know we all have your back.
God bless and good luck
Ski pro
Obinutuzumab and a bit of worry. 
Building antibodies post remission 
Worried!!
Worrying complacency...
