New member - Maggie

Hi I was diagnosed with CLL 2 months ago and have been feeling devastated ever since finding it difficult to sleep,I went to see my GP with an inner ear infection,then a cold and cough which went on for a month.Three blood tests later I was reffered to a haematolagist,I have been told I am at stage A with a WBC of 11,all other bloods are normal and she couldent find any swellings after examination so Ihave a next appointment in 3 months,she is hopefull that I will be on wait and watch for quite some time but that sounds so scary,Iam pleased I have found this site to share.

Last edited by

27 Replies

oldestnewest
  • Hi nelliemay,

    Welcome to this community that you didn't really want to join. We've all been through what you are going through and know how scary the early days can be. My initial specialist appointments were a month apart when I was diagnosed at stage IV and that was nearly 6 years ago. I'm still on watch and wait and only see my specialist several times a year now. Your WBC is barely out of the normal range (you should be tracking your ALC, which is lower, not your WBC) and given you are stage A, all other bloods are normal and no swellings have been found, you may never need treatment. Don't get alarmed at what may appear to be significant changes in your ALC. Haematologists experienced in CLL don't even start to look at the doubling time until it climbs over 30 and it is the overall trend that is important. Your haematologist will monitor you closely initially to see how stable your CLL is and lengthen the time between appointments if there is little change.

    The good news is that your CLL has been identified very early. This gives you the time to make whatever changes are necessary to improve your quality of life living with CLL, improve your health and fitness, get your non-live vaccinations up to date, etc. Check out the pinned posts for information on commonly asked questions and ask away on any topic where you can't find an answer.

    Pinned posts are on the right hand side of this page:

    healthunlocked.com/cllsuppo...

    Neil

  • silly question but what is ALC ?

  • Maggie,

    ALC = Absolute Lymphocyte Count or that part of your White Blood Cell count that contains B and T lymphocytes. With CLL it is the B lymphocytes that are cancerous and so we want to track their number. In a healthy blood cell count, most of the white blood cells are neutrophils, so it is more accurate to ignore these (or track them separately as the ANC = Absolute Neutrophil Count. It is hard to tell B and T lymphocytes apart without special testing, so we tend to ignore the T lymphocytes included in the ALC. They (the T cells) can jump around too in quantity and change the ALC reading, which is why we don't get too concerned about changes up or down from blood test to blood test but look at overall trends. Read:

    healthunlocked.com/cllsuppo...

    By the way, you'll notice I've been changing your question titles so people know what you want to know.

    Neil

  • Thankyou Neil

  • Hi Maggie, I was diagnosed two years ago and am on w and wait. It is very difficult to take in at first but in a macabre way you appreciate a lot more in life! The way I got my head around it was to say to myself you are not receiving treatment so enjoy life while you can. It could be 10 years or more before treatment starts and look how much advancement( if that is such a word!) has been made in over the last couple of years! Try and put it to the back of your mind, it's not easy but that's what I try to do. I wish you all the best.

    Cheers Barry

  • Chris posted this site for newly diagnosed which I really liked:

    livingwithcll.info/

  • On the More Info page at livingwithcll.info is a link to a web site that many of us have read before coming here - clltopics.org. The web site author explains things very well in lay terms.

    updates.clltopics.org/newly...

    Like you, I was diagnosed at stage A after several similar infections. That was 4 years ago, and I'm still stage A. I'll turn 60 next month. My main complaint is fatigue ... and continued annoying infections.

    The doctor who diagnosed me didn't even give me a pamphlet explaining it further. He asked if I had any questions, and all I could ask was for a prognosis, which he bluntly gave, not qualifying it in the least. I immediately sought, and found a different doctor.

    I think it's tragic that when given such a diagnosis, the whole patient is not considered. A referral to a counselor should happen that very day, in my opinion.

    I hope your CLL experience doesn't ever rise above the medical annoyance level, and that you can find some counseling to help cope with the understandable grief and shock.

    I think you'll find this group is an eclectic combination of people from all walks of life who are very welcoming and informative.

    =seymour=

  • Maggie, do you mind me asking how old you are? I was 38 when diagnosed. Wbc was already 33 in 2007. I was treated very soon after. Happy to share more but only what is relevant and helpful for you! Corin....male! I do have 8 years experience of living with cll. Go and do the things you enjoy doing! However things go, treatment for CLL is so good now I truly believe you will die with it not of it.

  • Thanks for your reply,Iam the ripe old age of 66yrs,Iam very pleased to hear you are doing well,I realise I am lucky to only be in stage A with a WBC of 11.and my doctor reasures me all other bloods are normal but still its that C word and I just cannot sleep for thinking about it , best wishes to you,

  • Hi Maggie ,I ws also diagnosed end of sept and have found it really difficult , I was crying every night as well and also posted on here where it was recommended to try and get some councilling, my daughter found a organisation called nightingale trust near us that offers free councilling and I went for the first time before Xmas, it was very emotional and I came out so drained and tired but also felt calmer, I will now have more sessions in the new year, they also arranged for a clinical nurse to phone me so we could discuss my blood results and what different words meant and what does what in the blood which was helpful, maybe try and find out if there is something in your area where you can have some councilling, I also have found this site a great help in learning and understanding this new scary world we are now in, you are not alone, I am female 55 living in London, which country are you? It does seem to get easier , I am no longer crying every night and it isn't in my thoughts 24/7 and I am sure with time I might even go days without thinking of it, sending vertuallhugs your way lv Julie

  • Hi, I'm 62, I was diagnosed over a year ago and I am at stage 0. I live in the USA so they go by numbers. I'm sure I had it at least 6 months before, so I figure I'm at two years and still at 0. I try to eat healthy and stay active. I know its hard to hear at first ,but this is a great site, so don't be afraid to vent. We're all here to help you.

  • Thannkyou for your reply,sending you lots of best wishes I am so happy to have found this site .

  • Thankyou so much for your reply its nice to know we are not alone,I still find myself constantly thinking about it especially at night so cannot sleep.I live in Suffolk and am attending Ipswich hospital,Ifeel lucky because I realise lots are worse then me.i am female aged 66yrs,I am pleased you are coping better and best wishes for the future.

  • Nelliemay, I too attend Ipswich hospital which I find fantastic. Quite a bit further down the road than you but always ready to help if you wish. Please contact me privately.

    This disease never leaves our minds but you will find that more and more you can lock it away for periods of time and enjoy life.

    My best wishes

    Sue

  • Hi Sue,thanks for your comments they made me feel better I have only attended the hospital once and have to go again in April when I am sure Ii will panic again ,best wishes to you and its nice to know you are there.

  • Hi Maggie, It's easy for those of us who have had cll for some years to say "try not to worry" - but we all do when first diagnosed. It can be very scary when you hear the word 'leukaemia' not just scary for oneself but for family members too..

    Fortunately, you have been diagnosed at the earliest possible stage of cll so it is quite possible that you will die from old age rather than cll.

    I was diagnosed much, much further down the line than you and still waited over 4 years before treatment was required - and have now been told to expect a good, long remission. When my cll returns I will have a wide selection of non-chemo treatments to choose from.

    I hope you have been reassured by these posts and can now look forward to Spring. The daffodil bulbs are already bursting through the ground. Keep in touch if you feel able.

  • Thankyou so much for the positive reply,yes I know I am lucky and just this morning I have noticed I have snowdrops peeping through and daffodills in bud so trying to look forwards to spring days,I am so pleased you are doing well.Would love to keep in touch.

  • Hi Nelliemay, I don't know if this will give you confidence, but I was diagnosed in 2002, (I'm just turned 67) and have never had or needed treatment. I get the odd tired spell, but it seems to pass and I'm back to normal. All sorts of other little things I put down to my age (physical - mentally I'm still 21!).

    I hope that we never need treatment, but it is reassuring to hear from the guys on here who have dealt with it and come up smiling, and there are so many new treatments popping up all the time that even if we do eventually need it, it may well be a different kind of treatment altogether.

    I was very lucky (or gullible) that my Haematologist was so positive about my condition that I didn't think about it much. I honestly didn't realise how bad it could be till I came on this website, and I feel for those who have progressed to further stages.

    All I've changed is a) not getting too close to my grandchildren when they have colds and b) washing my hands more often (something everyone should do anyway).

    You will get used to the idea, and then you can get on with your life.

    keep smiling

    Chris UK

  • Hi Nelliemay

    I was diagnosed with CLL over 10 years ago and was on W&W until last August when my haematologist found my spleen was beginning to enlarge. Then in September I started chemo and have responded amazingly well.

    It's easy to say "don't worry about it" but try to remember that so many of us go on for many, many years on W&W. If it ever comes that you need treatment there are so many new therapies becoming available your treatment may be trouble free and successful.

    Hopefully your consultant is sympathetic and you could do no better than talk to him/her and ask as many questions as come to mind. If you are frightened about your diagnosis and need some support this site is really helpful. When I became emotionally low, I contacted Tenovus and now have monthly chats with my 'mentor' as I call her. It has been a great benefit to me because their volunteers are expert in talking through our problems and they are not as 'involved' as family and friends. It may be worth you trying it.

    I wish you a long and happy W&W!!!

  • Good Morning Maggie from Canada. I was diagnosed 3 years ago. Hang in there girl. I've found (reluctantly) that the best treatment for CLL apparently is patience. So I pray to God to give it to me ASAP...lol You're not alone here as you've no doubt noticed.

  • Thankyou,take care

  • Hi Maggie, Like yourself I was diagnose with CLL Stage A at 66 after going to the GP with what many thought was Gout back in Oct last year. The bloods told a different story, with a similar low count to yourself I believe, although I've still got to understand this with my Doc when I see them next in April. It is a bit scary, especially when you read what some on here are going through & have been through (they all have my sympathy & best wishes in their fight to deal with this disease), but equally there are some good articles on here that show how there are various medications being trialled & give hope that in the not too distant future there will be medicines available that will deal with this condition.

    For myself, I'm planning to stay as fit & healthy for as long as I can, including exercising regularly, so that I can try and delay the progress of this disease & any potential treatment for as long as possible. I'd also draw your attention to the threads on green tea (I'm sure the Admin's can hook you in on these), because there seems to be some evidence that taken in sufficient quantities this can have a positive affect on CLL & help delay the progress of this disease.

    Stay positive & determined to delay an potential treatment for as long as possible.

  • Hi Nelliemay

    I am 68 and was diagnosed coming up to one year ago, I too am in watch and wait.

    Initially I took things in my stride but it is a roller coaster ride. I have talked and thought about this and there is a grieving process of the perceived loss of that 'normal' life.

    I have found that on that roller coaster ride sometimes I feel like myself and enjoy that feeling. Sometimes I feel in a low mood or tired and do what I can to care for myself, perhaps even be kind to myself for feeling in a not so good place. I think it does get easier but triggers bring back that scared feeling.

    I was given a Macmillan booklet on CLL. This was informative for myself and my family. Some parts were very reassuring, some scary, but information for me is really important.

    I am seeing my haematologist at the end of this month, think that feels a trigger for anxiety. I sometimes need emotional support, so am going to enquire what is available out there, perhaps linking in with a Macmillan nurse or specialist nurse for CLL.

    Take care and look after you and yours on this journey.

    Seven6

  • Hi Maggie,

    Welcome to this new world. I was diagnosed in November and like you am still having trouble coming to terms with it. There are now some days that I don't cry!, and I do feel I have progressed a bit emotionally since the shock of diagnosis but it's definitely not easy is it. I am waiting for a referral to a counsellor (which I had to ask for) and in the meantime, I've joined a restorative yoga class which is doing wonders for me, physically but mostly mentally. I'm a 37 year old female living in Dublin. From what I hear, restorative yoga is available in the UK, it might not be for you but might be worth checking out? The bit I find hardest is that I have 2 small boys and I don't want this to impact their lives.. am trying not to think of the future too much and to enjoy each day that I'm well (am v early stages like you).. But as you know that can be easier said than done. I think time will help us to come to terms with it - as well as our new friends here!

    Wishing you all the very best and we will journey together.

    Firefly x

  • Welcome Maggie and morning to all,

    There's little I can add to the welcome and advice you've already received but I want to wish you well and a slow, unexciting and very indolent CLL journey! It's very early stages for you and your blood results sound reassuringly low.

    Trouble with CLL is that the mind can take us to worse places than the actual disease can actually reach. Even when the condition is stable and non symptomatic, the emotions are whipping up a storm that can rob us of our inner security. When I was dx in May 2012, I felt like I had a tight, suffocating fist in my stomach threatening to squeeze the life out of me! But with the help of fellow sufferers, a growing understanding of the condition and time itself, the fear has steadied a lot. Yes I have dark times but I no longer see my CLL as an alien invader. I see it as a part of me, a wonky physiology with an even wonkier thermostat and it's given me more perspective. And they're going to crack this thing!!

    I'd urge anyone struggling emotionally to find the person/s that can help you through or the activity that strengthens your coping capacities. And sharing on here strengthens us all through collective suffering and knowledge building.

    Please keep us updated on your progress Maggie and welcome.

    Newdawn

  • Yes thankyou I ,have had a better day today trying to put it in perspective and I hope too at least not worry about it all the time as time passes but as you know its not easy but so pleased to have found this site of fellow cll members.

  • Hi Maggie and welcome.

    All that you are going through is normal and I think most of us have been there. I have been on w&w for two years and I will start some treatment this year, so I am told. I still feel well and active but I do suffer from night sweats and fatigue. I have learnt to accept the afternoon fatigue and it is a standing joke about my afternoon power naps. Please be positive and confident going forward. The worry will pass and above all look after yourself and those who care for you.

    Regards

    Dave

You may also like...