I’m newly diagnosed CLL. Very new! It’s been 3 days! 😀. My emotions are crazy, I go from depression, to being ok. I just need a support group. Also at the same time I’m not even believing that I have CLL. My wbc have been up for the last 3 years.. not even very high at 13,000. My red blood cells are low, I went to doc feeling foggy brained and tired and got sent to oncology and it has turned into this. It’s weird because people around me kind of act like I am overreacting so I just don’t really talk to them. I went to work after being diagnosed although I was in shock. Is it normal to just not know what to do??
newly diagnosed: I’m newly diagnosed CLL. Very... - CLL Support
newly diagnosed
47 Replies
•
Hi there! Absolutely. When I was first diagnosed 5 years ago, I was in shock. So many questions, and one of them was 'what questions should I ask?' You've come to the right place. We'll all be glad to share our experiences, knowledge and love. First thing - don't panic! CLL is not the killer it used to be. Lots of patients never need treatment, and if they do, medical science has advanced so rapidly that they can expect to die with CLL, not because of it. When the initial shock begins to wear off, think of what you want to know and ask your questions here. You might also want to peruse the 'Pinned Posts' on the right-hand column here. I also find it helpful to have someone with me in the oncologist's rooms, just in case I miss something or zone out. When you say your wbc is 13000, do you mean the alc (absolute lymphocyte count), because that's the crucial number. As you say, it's quite low. All the best, and let us know how you get on.
• in reply toGuffy
Honestly I am so confused about all the lab stuff. I also had blast and band % and don’t know what any of that stuff means.
Further to Guffy 's helpful tips, if you need some further explanations after perusing the pinned posts, just ask in a new post!
You'll find it very helpful to have someone else present at your appointments, when so much is gone through so very quickly. Because of the personal impact, it's so very easy to become overwhelmed. Learning what you can about CLL makes those appointments so much more productive; you know which questions are more important and should be asked first and you'll be faster at understanding your specialist's answers, giving you more time to ask more questions in the limited time available.
Without seeing your test results (which you are welcome to share, after redacting any identifying information), I'd say you can probably forget about blasts, as they are more relevant to other blood cancers than CLL. Band % sounds like a reference to neutrophils. Again, it's probably not particularly relevant to CLL. With CLL, the important blood tests trends to watch, are absolute counts for haemoglobin, platelets, neutrophils and how quickly your lymphocyte count doubles after it exceeds 30. Doubling in under 6 months is a sign to look for confirming evidence that treatment should soon begin.
Be patient with yourself making an adjustment to living with CLL. While a cure is considered close, you'll probably live out a normal life expectancy, given the fast pace of new treatment approvals and what you'll learn here about living well with CLL. It took me a couple of years to adjust and that was after being diagnosed with stage 4 CLL/SLL at a similar age to you (53) over 15 years ago.
Neil
• in reply toGuffy
I do plan to take my grown kiddos with me to the next appointment because I literally zoned completely out and all these terms are so foreign to me.
Guffy• in reply to
Good idea. This post healthunlocked.com/cllsuppo... might be a good place to start for you.
• in reply toGuffy
Thank you!
RedWyvern• in reply to
I think most of us zoned out while we were speaking to our haematologists especially during the initial visits. It’s a lot to take in, especially when all you hear when they’re talking to you is it’s a type of blood cancer, your head is saying ‘they've obviously got it wrong.’ 🫤
I used to ask them if I could record the appointment on my phone, so I could listen back to the bits my head hadn’t heard when I was there.
Also write down any questions you want to ask them and take the list with you. I found that my mind went blank as soon as I got there.
Take your time to process your diagnosis and remember that you have a safe supportive place here where you can ask/say practically anything without being judged in any way. Even if it’s only to vent off a bit.😤
I won’t say welcome to the site, because nobody really wants to be here, ☹️ but you views and thoughts are always welcome
Andy 🏴
• in reply toRedWyvern
Recording it is a grand idea!!! Thank you for the helpful tip!!
You're responding exactly like a human, 100% normal! It will take a while, as your oncologist starts giving you more info you can share the picture will become more clear.
CLL is not Cancer as much as it is cANSWER. You have the time to learn and research a lot of pathways that many aspects of this condition that can be dealt with, you are going to begin learning to live with a genetic condition. Depending on your specifics, you could go years not needing intervention just regular blood draws periodically.
The key point is this illness, does affect your immune system, we become more susceptible to diseases over time. So staying healthy is the main goal. During year one I had my doctor give me a list of all the vaccinations I should get and the appropriate order and times between them and building a routine of hygiene and germ avoidance behaviors that would fit my life style and adjust as needed.
I would be careful on disclosing health information, that would be my one big re-do. The social navigation is probably the most difficult part with family and friends included. But that's a lot to chew on right now.
As a question comes to mind we'll be your sounding board, we're not experts, but we have some very experienced members and many viewpoints. We won't live your life for you, but were here for you. Just scroll to the top and read the large purple writing. And Welcome 🙂💐
Yes. Vaccinations are the big thing at this stage. And getting family on side.
Am in the same boat. Diagnosed 10 days ago. Amongst all the unknowns, uncertainties, sweĺling emotions and fears, the one thing i know for sure is that we are not alone and this online community is going to be an important part of my journey. Everyone here understands and will listen without judgement. I am already feeling comforted by this.
• in reply toMokoia
Yes!! It does help to be around others that get it!!! No one in my world gets it right now and this is fabulous!
Spark_Plug• in reply to
Try to manage your expectations, they won't get it.
Imagine a camera on the point of your index finger, now place that hand's wrist on the back of your head so that your imaginary camera is now pointing 180 degrees away from the direction your looking at with your real eyes, now close your eyes, that's what the camera sees.
It's not their fault, and treasure anyone who tries to respond with empathy. Even after your first few visits, your doctors are going to fall into a pretty predictable pattern. They're treating this disease you have. Any education will be at the time needed or time for only your most pressing questions. I make out an agenda before I go and tops 3 questions I write down, I usually get one answered, on a good day two.
Your feelings are completely understandable - we have all been there. I found educating myself about our disease was most helpful in helping to keep anxieties in check, This forum as well as CLLSociety.org based in the US is most helpful in providing current, accurate information on this disease and treatments. Any questions - just ask us - we are very good at paying it forward to our newly diagnosed brothers and sisters. Onward!
• in reply toDoriZett
Very good to know! Thanks for all the support!
It's certainly not easy for anyone to receive an adverse diagnosis for any condition or disease, my hubby also diagnosed about 7 years ago found it hard to take. With his CLL there is no symptoms, yes tiredness and a runny nose for him but in general not a lot plus the Haematologist assured him that he would not die from this but had to take appropriate precautions, starting of with all the vaccinations for protection, wearing gardening gloves to avoid infection from any cuts etc., that he might sustain, taking care of yourself in general because your immune system is compromised. After regular appointments over the first year and with Covid too, his consultations became telephone calls after blood tests etc., and he is still on W/W and may never need treatment. So, my advice would be, live your life to the full, this condition should not prevent you doing anything you want to do and don't waste your time worrying about what the future might bring because it may never happen. You want a support group, you've found it huggggs
like some of the other comments, I’ve been there too! The good news is that (a) there are many more reliable sources of information now, and (b) the drug options for treatment just get better all the time. I was diagnosed in 2001 aged 54 and, because I thought I could be dead by 60, I retired. Still here going strong taking Venetoclax at 77. Off to Western Australia next week (from NZ) for 3 weeks.
Take a deep breath and read as much as you can.
All the best.
• in reply tothb4747
Oh this is so good!!! Great reassurance! Thanks so much
Just one thing to add to all the excellent advice already given - think about who you tell. Obviously there will be people who need to know, but once you've told someone you can't untell them later!
• in reply toclaree_ford
Yes well that is kind of already done with my boss. But ok.. moving on. My boss is pretty nuts so she will probably forget. lol. I work in a crazy environment, with crazy people which is totally why I stay there! 😂
Hello Catmom
As you will see from all the replies, everything you are feeling is a normal reaction. I felt the same. Luckily, you have found this group and many of your questions can be answered here. It does take a while for all the emotions to steady.
Just be very kind to yourself. Other people will not understand because it isn’t happening to them and many of us here will know how that feels. Take some time out, if you can, just to rest and give yourself some space.
Sending you kind thoughts
best leukaemia to get- won’t kill you. Make sure you have a good haematologist. Had it 5 years and I am nearly 84. Won’t need nasty chemo. One tablet a day and I have been in remission over a year. Do not sunbathe and use factor 50 accept more than normal fatigue and get on with rest of your long life
Welcome! Well, I am 57 and was recently diagnosed myself (around 4 months ago). I completely understand all the feelings you are having. I was anxious, scared, confused and just felt like my world had been turned upside down. When I was diagnosed, I didn't know whether to tell anyone, everyone or keep it to myself. But it was probably the information overload that comes with a cancer diagnosis and all the related tests that kept me up the most, trying to understand it all.
I can honestly say, I'm just now coming to grips with my diagnosis and the changes I need to make. I still find myself down in the dumps occasionally, but talking about it with the right people and following this group has helped. You have gotten some great advice here already. I would just suggest that you be mindful of where you get your information about your diagnosis from. Google is not your friend... I almost ended up curled up in the corner after my first hour or two of googling my diagnosis and prognostic markers. Stick with this group and the pinned articles. CLL Society (cllsociety.org) and the Leukemia and Lymphoma Society (lls.org) are also two sites I found to have relevant, up to date information. When you are better informed about your diagnosis and CLL, Google away. Just my experience.
For now, listen to the feedback you've gotten here and ask your questions. There seems to be a whole lot of people/knowledge in this group that understand what you (we) are going through and don't mind helping. Stay strong.
Catmom I was diagnosed a couple of weeks ago. As others have said, have gone through phases of denial to some sadness and now more active engagement in working out how to say healthy. This site is very helpful. Best wishes.
You are very fortunate to have found this community so soon after diagnosis. I had been diagnosed for a couple of years and only found this community when starting treatment, just ask away their is always someone to give you sound advice, and try not to worry the treatments now are so good and you may never need them anyway.
Dave.
I was diagnose 3 years 3 months ago and was frightened and shocked. I had all the vaccinations I was told and I try to avoid illnesses. However I’m lucky to say I’m still on watch and weight and my lymphocyte number varies between 9 and 12. . It’s hardly changed. I am well and fairly healthy. I don’t worry about CLL anymore and just live my life as much as I can bringing myself joy. I am lucky not to have needed treatment yet. Please try not to worry as it may never affect you. I was told I won’t die from it but will die with it. A big statement. I spoke to my specialist and said am I burying my head in the sand and she said she wished others would stop worrying. Please try to relax about it although I reacted in exactly the same way. Love and best wishes to you
Always try to take someone with you to appointments, especially when meeting your CLL specialist. My wife has kept a diary from day one, which has proved invaluable. It lists all meetings, treatments, drugs etc. It has proved useful to write down the questions you need to ask. We also keep a A4 file, in which all the Doctors letters, blood results, any reference material, telephone numbers of hospital depts, nurses etc. Take a deep breath, go for a walk. Your life has changed, but you will meet lots of lovely people as you journey on who are only to happy to help.
• in reply toRog69
Such great ideas! Thank you!
As others have said, be cautious who you tell. While you know not to look at Google, they don't and will get the wrong end of the stick about CLL. They may well write you off because Google says you'll die within 2 years. You won't. Others may push you out of working or deny you promotions because of your illness. If they don't NEED to know, don't tell them anything.
• in reply toSERVrider
I found out real quick not to Google this stuff!!! Thank you for your reply, you are so correct! People truly just don’t need to know!
SERVrider• in reply to
My daughter was being considered for adoption but was turned down because the social worker considered her mentally nstable because she was in denial about the imminent demise of her father (me) because I have CLL and only had 2 years to live according to her research (Google). It was more than 2 years ago and I'm still bloody well here and plan to be for a long time to come!
Hi Catmom, I was diagnosed with CLL 2 weeks ago, My emotions are crazy too, crying a lot and feeling like I am on a different planet to those around me. I'm the same as you, one minute ok next minute crying and wanting to scream 'Why Me?' My Doctor put me on Depression tablets Citalopram to try to help me calm down and sleep better. I think we all suffer from denial, I know I keep thinking they've got it all wrong, or I'll wake up in a minute from a nightmare. But please remember you're not on your own.
I feel tired and can't think straight, still in shock of the diagnosis.
Most of us diagnosed feel like we don't know what to do. And you're so right about people around us having no idea what it's like to be diagnosed, also please remember most people are unsure of what to say to us and I feel some even avoid us. There are a lot of people who are living with the diagnosis of cancer so you are not on your own.
Love and a BIG hug with you
Cathy
• in reply toCurry777
Thank you. My boss told me her mom had it and I would be just fine, I think she was being reassuring but it kind of made me feel like she was discounting me and like I had no reason to feel like I do. Thank you for the reassurance that it is normal. I cry, then I’m fine, then I tell myself I don’t have it! Thank you!
Staci
Curry777• in reply to
Your Boss didn't have it Catmom, please don't waste your energy on people who think they know best, we have personal experience and understand the shock that is in our lives from the diagnoses. Use your energy to look after yourself and care for yourself.
There is nothing wrong with crying, we have to let it out.
I ring Samaritans when I am really low, they have been brilliant and I cry while I'm talking to them. I understand how you feel and know how hard it is. We have to get through this, and make the best of life. Get out there, stamp in puddles if it rains, cuddle a tree, have a glass of wine in the daytime, eat cream cakes, do things you always put off...Like going Swimming (even though I think I'm fat I don't care anymore.) Go for a day excursion on a coach somewhere (on your own or with someone.)
I know its hard, one day can be horrible, next day not so bad.
Love and another BIG hug to you Catmom x
Diagnosed just this February. I felt those same feelings, but as others have said....it gets better. It took me a couple of months, but now I'm just living my life. When treatment time comes I'll deal with it. Fight hard to get to a CLL specialist. It really helps to know you're in good hands and the general oncologist can be living in the past regarding treatment. If you feel good...enjoy every day.
• in reply toBigfootT
I go again on the 29th. I’ll talk to my doc about a CLL specialist. Thank you!
• in reply toBigfootT
Thank you for the reassurance! That means everything!!
i am a year in to my official diagnosis but pretty sure based on my WBC i had it for at least 2 or 3 years. seems like everyone has the same reaction at first. i think for me when i told my primary i wanted to get my high WBC checked out and he referred me to the cancer center that's when i first started to panic and then when the oncologist said i have CLL which is a cancer then i just went foggy like you said not hearing everything but after i got over that part the reality is just not as bad as some cancers. a guy i work with is going to retire end of this year, he just turned 65 and was diagnosed with leukemia. he was out for 30 days and now has to get chemo treatments every 3 to 4 weeks and is out for a week each time so i guess we just have to be thankful that it's not as bad as it could be. fortunately i do not need any treatment at this point so i really haven't told anyone, my wife, my boss and like 1 or 2 close friends. i don't feel the need to burden people with this right now because it's not really a problem at this point and don't need them feeling bad or treating me different. i haven't told my kids or grand kids, they don't need to be worrying about that. just do what you can to live a healthy life style and go about your life. try to eat right, get some exercise and just live.
lots of helpful info and people on this site. we are here to help each other through as best we can. good luck
Hi Catmom, welcome to this amazing group , for me I do t know what I would have done without all the knowledge I’ve learned from this community. Finding out you have CLL is so scary I had never heard of it before I felt so alone and sad. It’s coming up to 5 years since I was diagnosed. And the only folk that understand what you are feeling. Hugsss 🥰
Quit smoking now, yay! It's hard but it can be done. The first month is the worst month.
Do anything you can to heal your body and change its terrain away from something to which your CLL has adapted. You can do this!
Also, at age 49 when I was diagnosed (16 years ago--given a "poor prognosis" ) I was bleeding heavily and my red blood cell count was very low. This was due to fibroids, not due to advancing CLL. Wherever you are in your life cycle, keep this in mind. I am still fine without treatment other than lifestyle and dietary changes; this may end up being a good thing in your life. But it is a very big upsetting shock, for sure!
Strength and courage!
Awe I remember the roller coaster of emotions on Thanksgiving Day 2011 when I was first diagnosed after suspicious labs in August.
First I was given 2-4 year survival prognosis.
Here I am 13 years later with a descent response to my second go on treatment and looking forward to several years off treatment with all sorts of wonderful research and hope for even better treatments to come.
Hang on for the ride and I'll share the CLL Society moto, Hope is on the Horizon and Be strong we are all in this together.
Good luck and God bless!!!
HiJust be positive, I was diagnosed nearly 4 yrs ago at the age of 56. I was at advanced stage 4 and needed a transfusion, totally asymptomatic. Went straight to O+I, now 60 and living a perfectly normal life as a stay at home dad to my 7 and 5 yr olds. Currently spending 4 weeks in my caravan touring france...so loads of wine and cheese. Monthly bloods stable and Acalabeutinib twice daily doing its job.
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