Hi Everyone, I am new to the group it has took me a while to get up the courage to join as I am really anxious since my diagnosis. Currently on a watch and wait with CLL and I am unsure what the future holds. The last week I have noticed the Lymph nodes in my neck seem swollen is this normal ? It seems like every time I feel off or unwell I panic and think is this it now ? Will I have to start treatment. Obviously thinking the worst all the time, dopes anyone else feel like this ? I don't want to live my life in anxiety.
Newly Diagnosed CLL, Anxious and scared - CLL Support
Newly Diagnosed CLL, Anxious and scared
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dsaee123
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58 Replies
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Hello . I'm so sorry that you are going through this. All of us on this site can identify with what you are going through . When I was first diagnosed a little over 5 years ago, I was devastated . Like you, it took me over a month before I had the courage to come on to the site. I had made the mistake of consulting Dr. Google after my diagnosis, and read some old and outdated info that led me to believe I could expect a short life expectancy. Thankfully , I did get the courage , because I found hope and true support on this site 😊 I am happy to tell you that today, CLL is a chronic disease , much like diabetes that you will live with . The current treatments are excellent and there are many options that were not even there 5 years ago. About a third of people with CLL never need any treatment. Some can have many years before they need treatment. The great news is that when you do need treatment , there will be many options and that the medications now can keep our bad cells under control. Many doctors believe a cure is on the horizon as the many clinical trials looking at med sequencing and specific meds that should be given together are giving us more information than ever before . Even though CLL is rare , there is a boom in the pharmaceutical industry on immune type therapies that have become the backbone of our treatment . Rarely is Chemo given anymore, except for a few whose markers indicate it can be a curative treatment . I have had a very good watch and wait and am just now considering treatment because my spleen is enlarging and causing discomfort . I will tell you that over the years I have had some other health issues that have come up. I always would think 🤔.. is this the CLL? It never was . All of your feelings are normal. You are in the right place to get support , and great information about CLL. Remember, it is called Chronic for a reason. Even though you will read that there is no cure , which is technically true, it is controllable and something you will live with . Specialists say that CLL ers will live a normal life span now due to the newer treatments. There are many posts on the site that give advice on what to do when first diagnosed . You can search these and gleen so much from them and the member responses . My advice is to get an appointment with a CLL specialist . CLL is a very specific type of blood issue and the treatments are coming out so quickly that most find they are served better with someone who specializes in CLL vs a standard Hematologist or Oncologist . These can be found on the Leukemia and Lymphoma web site. This site is also a great resource .
I know first hand how this diagnosis can steal your breath and freeze you with fear . Take a deep breath , educate yourself on current CLL sources no older than 2021, work on a prioritizing your health and wellness, including stress management and spiritual care . Only share your diagnosis with ppl who you feel will be a support to you . Surround yourself with supportive ppl, who are positive and encouraging, and keep doing the things that you love with the ppl you love.
You are going to be OK 👍
We are all here to help you get through this initial shock and beyond .
Blessings ,
Lisa
Thank you so much I wasn't expecting as many replies or as much advice and encouragement. Your all so amazing 🥰
What a wonderful, and accurate answer!
JigFettlerVolunteer
Welcome to our Forum.
I would say you have come to the right place! All of us here know how you are feeling!
As to when one starts treatment - thats not a simple answer. For most - its not immediately. Welcome to watch and wait.
Take a look at the pinned posts - there is pretty much all the information you will need. But take your time - there is much to process, digest and learn.
Please remember NO question is too simple to ask! Most issues that have ever occurred will have been met by someone on the Forum. Our collective wisdom is vast!
Take your time, breath, focus on what you value in life, and live it!
I would never have believed, back in 2015, when I was diagnosed - that there would be a time when I would wake in the morning and CLL would not be the first thing on my mind. But so it is 7+ years on. For the moment.
Meanwhile take time to "meet" the many good folk here who are always generous with their support!
Jig - also in the UK!
Thank you so much x
Well good morning to you from the USA.A warm welcome to you from our group. When you have some free time. Write in some information about your disease in your Bio.
CBC info and any other test results. When you were diagnosed and what you were diagnosed with? It helps those in this group to help understand your course of disease. Thereby we are able to give better advice.
Yes, swollen lymph nodes are normal with CLL/SLL.
Will you have to start treatment? Well, how are you feeling? Any other symptoms? If you are feeling well, probobly not. Yes, this disease does make us question is this symptom of something this disease.
Thank you x
lankisterguyVolunteer
Hi dsaee123,
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Welcome to the club none of us wanted to join.
If you want to read about other members that went through the same experience please look for the box on this page labeled: Related Posts
*Newly diagnosed with CLL healthunlocked.com/cllsuppo...
*Newly diagnosed with CLL healthunlocked.com/cllsuppo...
*Newly diagnosed with CLL healthunlocked.com/cllsuppo...
*Newly diagnosed with CLL healthunlocked.com/cllsuppo...osed-with-cll
*Very newly diagnosed and scared healthunlocked.com/cllsuppo...
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There are 5 Pinned Posts that are very valuable and worth reading over several days and weeks. Please see: Pinned Posts
*HU CLL Support Community Guidelines along with further recom... healthunlocked.com/cllsuppo...
*Newly diagnosed with Chronic Lymphocytic Leukemia or Small L... healthunlocked.com/cllsuppo...
*30 tips for living well with CLL (an update of "Coping Strat... healthunlocked.com/cllsuppo...
*12 TIPS to get more out of this CLL Support forum - and help... healthunlocked.com/cllsuppo...
*VACCINATIONS FOR PEOPLE WITH CHRONIC LYMPHOCYTIC LEUKEMIA (C... healthunlocked.com/cllsuppo...
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Len
Great stuff Len. Is there anyway new members / first posts could get this automatically!
Jig
Yes, the links could be included in the welcome message but I think it's limited regarding the number of words. We can look at it.
It wouldn't have the personal touch though...hmmm...J
Jigfettler, Jackie/Jm954 and Len/ lankisterguy ,
Our welcome message already includes a link to our pinned post for newly diagnosed members. healthunlocked.com/cllsuppo...
So I've just edited that post to include the links Len has suggested, as not all were included.
Thanks Jigfettler for the suggestion and thanks Len for recommending that selection,
Neil
Thanks Neil.
Thank you so much, I will read them all x
Welcome to our very special and caring group from all over the world! I am so happy you found us. We are here for each other!!!
I feel those who have already replied to you have pretty much covered everything. However, I would like to share with you what my doctor said to me nearly 34 years ago when he diagnosed me. At this time there is no cure but he felt there would be down the road and yes we are getting very close. For now the best thing you can’t do is to get all vaccines up dated and he gave one that very day. He said there was very little I could but it would serve me well to eat healthy and always work on a positive e attitude! His advice has served me well.
Soon after he left his practice and went into research! I have o feel he has contributed to some of the new drugs that we now have.
All the very best to you as you begin this new journey!
Panz🙂🙏👍💕☘️🌴
Hi there, and welcome! Lots of good folks have already given you heaps of good advice, and I can't improve on it. Just wanted to say I've been there, and it does get better. I've been on watch and wait for five years. No symptoms, apart from a little swelling in the neck and some fatigue. I'm still here! I don't know when I'll need treatment, and I've learned to live with the uncertainty. The trick is to keep living and enjoying your life. If life hands you lemons, etc. It's a scary and bewildering time. We'll all here for you, ask anything you want, no matter how silly you might think it is. You'll do this, because you have strength and wisdom you never knew you had. Peace and love!
Welcome to the best place you could have found! I have been on watch and wait for about 11 years now. My WBC is around 100K but I have no secondary symptoms. The only "treatment" I have had is 3 infusions of IgG when it dropped below 400. I remember how scared and confused I was, and I think the best advice I read on here was "stop feeling your neck!!" Eventually I did stop, and most of the time now I don't even think about CLL - except for being careful about infections of course. I have a wonderful hem/onc who I see every 6 months and who I trust completely. I realize that I am one of the lucky ones to have a slow progessing disease and I hope to never need treatment. But if I do, between my doctor and the wonderful advice on here, I'll be well informed and I'll be OK. You will eventually get to a place where it doesn't take over your thoughts and life will go on. Hang in there, and I wish you the best.
Kathy
Hi dsaee 123
I was given my CLL diagnosis in 2013. That gave me a scare too. However I quickly discovered that nothing much happened. Yes mildly enlarged lymph nodes in my neck. And thats all. I was placed on wait and watch.
Life continued for me without much happening on my CLL front other than quarterly checkups with my haematologist.
In 2017, four years later, new symptoms developed. Extreme exhaustion, night sweats and unwell.
In 2020 my haematologist decided the time had come for intervention. I gained entry to an Acalabrutinib Clinical Trial.
I am delighted to report to you that my CLL blood readings in January 2023 now approach normal and other than mild tiredness, some days, I never felt better.
These days you will be in good hands so keep happy.
Cheers
Spanish 36
Hello Dsaee
Everything you are feeling is quite normal. A diagnosis of CLL comes as a huge shock. I was only expecting a cholesterol check result and was told that I might have blood cancer on the phone! All of us on this site have felt pretty much the same as you. Give yourself time and keep reminding yourself of all the good advice given here. Be very kind to yourself - personally I have found a monthly massage to be very helpful.
Thank you and I pretty much found out as brutally as you did !!! A massage sounds like just the trick x
HiOverall the chances are out die with CLL and not of CLL. I was diagnosed stage 4 in Nov 2020 aged 56, straight to treatment. I have now been in remission for 18 months and live a full and normal lifestyle as a full time dad to my 5 and 3 Yr olds. I full expected to see them both graduate Uni in 2040's
Amazing Thank you x
My husband was the same age as you when he was diagnosed,he is now 78. We were in shock , as the diagnosis came from a routine blood test. He led a normal Life, and had no problems with his health.He did require treatment in 2016,he has been in remission since then.Thankfully there was no Dr Google.I know it's scary, just take it one step at a time.Jenny uk
Well first of all welcome! This is a club which non of us would choose to join but the support is a valuable tool in dealing with our CLL. You will find people here who have had CLL for many years and not yet needed treatment, some are diagnosed and need treatment straight away others never need treatment. Were you allocated a Clinical Nurse Specialist (CNS), personally mine is wonderful. They work as part of your medical team and will be able to advise you on day to day concerns. When I was diagnosed in 2018 I was told that I would be unlikely to die from CLL but with it. Just then I was terrified, having been told that I had cancer, I thought my life was over. I dd need to start treatment in 2021, right in the middle of the Covid19 Pandemic. I was given Acalabrutinib and have tolerated it well, my blood numbers are considered in normal ranges now and I feel very well. I would recommend that you join CLLSA, link up with Leukaemia Care and Blood Cancer UK all of which have experienced people who are keen to help. Any real worries or infections you MUST contact your medical team immediately. May I wish you good health for many years.
Good advice, direction to our wonderful CLL support charities. UK and US.
Absolutely worthy of exploring their websites, check out advice sheets, webinars aplenty.
All in good time, I knew it took me a while before I had an appetite for detail.
Jig
Thank you so much x
Welcome to the club. Many of us find that exercise is important, not rest. Try to do what you can to move the blood around. After an injection, my underarm nodes jiggle about and feel uncomfortable when I exercise. However, they always shrink and give me no further trouble until the next injection. The movement of muscles shifts the lymphatic fluid and, for me at least, keeps me well after 5 years w & w.
Hello, as you are in the UK you may want to consider contacting CLL Support (cllsupport.org.uk). They are a patient led Charity devoted to supporting the CLL community. They run an Under60 support group for those who face the challenges of CLL and raising a family or maintaining a career plus they are running programmes to help in dealing with anxiety and the stress of living with CLL. If you want to talk to someone who understands - call their help-line. All services are free to those who register. Registration is free to the CLL community and their supporters.
Hi I am a year older than you and was upset/worried etc when I was diagnosed back in July 2019. But actually you are fortunate. The rate of progress is tremendous now in this disease. Go back 15 years or so and for many it was a disaster with just chemotherapy readily available. Then along came ibrutinib, then all sorts of other treatments, getting better all the time. Every few months I see some improvement in treatment - how the drugs are used, slight improvements in them so they work better. Some people have been potentially cured by them, ie all the bad cells knocked out (we simply dont know as the medicines are so new in many cases, 5 or 10 years are not up to see if it'll come back). In other cases people have long remissions, it comes back, a newer treatment knocks it out again. Sooner or later it'll be cured. Medicine got a big boost with covid in that development sped up. Now there's a lot of research going into CAR T cell treatment where the body's system attacks the disease and this has worked totally for some people. Its a hopeful time, so the best thing you can do is eat very healthily, exercise (any exercise is good - a walk around the block is better than no exercise), relax and destress and enjoy life as much as you can. Also be careful not to get an infection - it's easy for people with CLL to get them. All this will help you buy time and every few months you buy, the better the treatment that is available.
Sound advice Thank you x
Hello,
I totally agree with Wonderwoman23 it is very hard when you are first diagnosed and watch and wait can cause anxiety as you think something should be done straight away, but take heart you are not alone.
I was diagnosed 5 years ago and have been well , but am now looking at treatment and this site has been my saviour with really kind, helpful people who do not judge.
be as positive as you can don't google too much and as Wonderwoman23 said think of it as a chronic illness that you learn to live with .
Be strong and take care
puppy43
Dsaee, first of all, please accept the warmest hug. Take a deep breath and reread Wonderwoman23's comments slowly. It is so well written. I've been in watch & wait since 2021 and reading this thread calms and encourages me still. Accepting this diagnosis takes time. That's OK because we are fortunate enough to have the luxury of time 😊 . I hope you are calmer after reading your responses and following the links others have supplied on this site. You're in good caring hands on Healthunlocked. God bless.
Perfect Thank you x
Thank you after reading all the replies, advice and comments I feel so much better and calmer x
hi dsaee123, I’ll just say that the term “Watch and Wait” is HELL, especially for us anxious people! My hematologist says not to worry and to let her worry, but it’s my body, and I’m “waiting”!? So, I get your feelings. I did “w and w” for 9 yrs and just started treatment. I dealt with lymph nodes up and down for years, and lymphocytes and WBCs slowly increasing every appt. Lots of anxiety for any illness or pain. More recently in the last year I’ve had bad night sweats, increased and painful nodes and spleen pain. My fatigue had gotten really bad. I avoided treatment for over a year as the doc thought I would be treating my symptoms, which is fine, but treatment wasn’t mandatory yet since my counts weren’t too bad. Then at my last visit I was severely anemic and the doc started Calquence right away. I am well educated on CLL and think that has helped. The CLL Society is great and the post below by Wonderwoman23 has a lot of great info. Definitely try to see a CLL expert. The CLL Society also has a great resource page for that. My hem/onc is well versed in CLL but she supported me going to the expert, if only to support her treatment recommendations. Most insurances do too. And I can go back to the expert at any time if I need to. My advice: keep on top of new info and be your own advocate. Avoid Dr Google! Educate yourself from reputable sources. Search out a support group from the CLL Society or Leukemia-Lymphoma site. And this site is great. My biggest challenge during those 9 years of waiting: acceptance. And dealing with fear. That’s hard. Therapy has helped. Wherever you can get emotional support, do it. Take good care of yourself! Get good sleep and some exercise and eat well. You need to stay healthy and strong to live long for the new treatments that are coming down the line to be available for you! And they are coming. (And there are good ones now.) Live your life! Best of luck to you!
Thank you x
I’ve been living with CLL for almost 10 years. No treatments so far BUT advances in new drugs are AMAZING and I fully expect that if and when I ever need treatment, I’ll either go into full remission or be maintained very well.
You’d have to know my doctor’s sense of humor but he once told me that I’d “very likely die of something other than CLL.”
I was 6 years in W&W. Started on Calquence 8 mos ago. WBC and Platelet counts continue to improve at each monthly visit. No side effects to speak of. Some fatigue and occasional nausea. But like you each time I feel something wrong I wonder if it’s the result of the CLL. Best of luck to you.
I see you have already had many replies - people here are great at giving help and advice - some are more 'expert' than others, so bear that in mind, but everyone means well!
I'm no expert, but in some ways my experience was similar to yours to begin with - I had swollen glands in my neck, had a blood test - and it was CLL.
From there on, who knows if your illness will develop in a similar or very different way? The docs usually tell you that, with luck, you'll never need treatment - or not for a long time - and often that is exactly what happens. But progession varies a lot.
In my case, the disease progressed so quickly that I started chemo less than 6 months after diagnosis; that was the 'bad' news, if you like. But - it worked brilliantly (there were some unpleasant side effects) - treatment was in 2012, and I got a remission which has lasted ever since. By now, many other more modern treatments are available, which are less aggressive than chemo and also very effective. It 'used to be' that if the treatment didn't work, you had cause to worry - but no longer. Nowadays, the docs can try many different approaches to either control or maybe even cure the illness. The outlook ("prognosis") is so much better now than a few short years ago. With any luck at all, you'll come through this fine.
Just one word of warning - CLL is strongly linked to enhanced possibility of other cancers (bowel, for example) and skin - I got a very nasty skin cancer after treatment for CLL - so be on the lookout!
I wish you the very best of luck. Try not to worry too much (some worry is inevitable) and enjoy your days.
This is so good to read Thank you x
Welcome. I was diagnosed in 2012 and told I have had Cll for many years. I felt as you do, joined a group similar to this one and coming in contact with people experiencing the same diagnosis was very comforting and like I joined a club like when you have a baby and instantly join the mothers club.
They gave me a lot of information the doctor doesn't. It took about a year to let go of some of my fears however they do always linger at the back of my mind. I was in watch and wait for 7 years and then it was time for treatment. The first medication didn't work out however I am taking Calquance now since 2020. So far I am living a normal life. I feel there is a cure just around the corner.
Diet and exercise will help the treatment to function as intented.
Hello & Welcome. I was diagnosed in November '22, and I'm also on W & W. The anxiety you describe is identical to what I'm experiencing. I feel now as if I'm settling into the diagnosis. Other than the fatigue, which is becoming normal feeling, I'm feeling fine and grateful to be on W & W. I am utilizing mindfulness techniques to not focus on the disease. Best Wishes!
Hello, I joined the CLL club 17 days ago. I am 44 years old. It was devastating. I have a 10 year old daughter and my first instinct was that I will not see her grow up. The anxiety was unbearable, and looking on Google was utterly terrifying. In a short time I have found great comfort in forums like this. The kindness of people is overwhelming. I always thought cancer = killer. I have been re-educated in that regard. Cancer = condition. I'm no expert but I've learnt that with CLL a good quality of life can be had for many years. I am also learning that treatments are really good and improving all the time. I've changed my diet and started to exercise. I want to give myself a fighting chance. It's still a relatively new diagnosis for me but I try to remain positive (believe me I have down moments). I hope you are doing ok. Remember we're never alone in this. All the very best to you. Marie. X
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