Wait & Worry

Hi. I have been recently diagnosed with chronic Lymphatic Leukemia. I have some lumps around my neck lymph nodes and have had 3 blood tests. I am on watch and wait. I am worried about my red blood cells as they are slowly going down. The results do not make much sense to me and I just wish I could know which way things are going in general from the test results. Sorry for the moan.. I know there are probably many of you who are in a much worse position than myself.

40 Replies

  • Welcome...

    If you could tells a bit more, many here can help... also what country are you in? Sometimes it matters in the way tests are presented...

    Have you had a Flow Cytometry blood test, or a FISH?


  • Wow have not heard of either of those tests? I have just had full blood count tests every 12 weeks. Sorry im in the UK, Banbury area.

    Many tjanks for replying

  • To get the CLL diagnosis the flow cytometry is used to determine if you have the 'CLL fingerprint' on your B cell... this separates CLL from other possible lymphomas... like Burkett's, follicular, marginal zone... etc.

    In the UK... the FISH test is often done later, prior to treatment... it broadly classes CLL , by genetic type...


  • Please don't apologise! I was you a short while ago and know EXACTLY how you are feeling. Being newly diagnosed myself, there is little help and advice that I can give you but to say You are in the right place! This site was a life saver to me in the early days (still is!) Please feel free to read my posts and some of the invaluable advice that I was given. This CLL is a complex disease and takes a lot of understanding. Some choose to know nothing and some choose to find out everything. I am the latter BUT please can I warn you not to 'overthink' things and if you are looking things up, make sure the information is in date-so much has changed in only a few years. Here, as I have discovered, there are no 'silly questions'. Just ask and there will be someone who can at best offer advice and at least offer empathy and support. There are some very useful 'pinned posts' at the side of the page. Here you will find a kind of understanding that it's hard to find in 'normal life'. Very best wishes. Peggy.

  • Manh thanks Peggy.. Are you on watch & wait?

  • Yes, blood tests every 3 months. It's hard isn't it? However, we have no choice but to learn to live with it, emphasis on 'live' 😄 there will, I'm sure be bad times and low days ahead (here we can rant and moan away without fear of upsetting friends and family) There have been great strides in treatment in the last couple of years and I an convinced there will be many more in the near future. Think positive :-)

  • Hi Trevor,

    You are doing the right thing watching trends, but three blood tests is barely enough to determine a trend in your degree of anaemia which may be due to your CLL. I've been watching my red blood cells trend down for over 6 years and over 60 blood tests. The amazing thing is that your body can compensate to some degree. In my first year with CLL, my RBC averaged 4.55 and in the past year it has have averaged 4.0 - a 14% drop. However, haemoglobin is a much more important measure of your blood's oxygen carrying capacity than RBCs and for me, that's only dropped 5%. I'm still in W&W.

    One of the things that CLL has taught me is that your body has a fair degree of margin in most of your blood counts; you can still function and feel reasonably healthy with blood test results outside of the normal ranges.

    Treatment guidelines for CLL recommend starting treatment when there is "Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia". The only reference I could quickly find regarding anaemia was haemoglobin (note no mention of RBC!) below 11 (or 110) depending on your testing laboratory) over a 3 month period.

    I hope you find that reassuring.


  • Many thanks for your reply. I can see now I am in the earlier stage than most who have CCL.. I did not realise it could go on for so long. I have my next blood test Friday so still worried a little bit.. Or a lot.. What makes things worse is our Daughter lives in Marangaroo, WA, Australia and is here on a months trip. She usually comes over once every 2 yrs. She knows everything but saying good bye this time is going to be really hard.

    Many thanks again.

  • Trevor

    Learn as much as you can without over doing it. Keep a record of all your results every time you have them done and you will see a trend emerge. This can be quite reassuring as you learn how your body is going.

    Stay tuned in to this site as its great. There is always help or akind word on its way.

    My best wishes.


  • Many thanks Sue..

  • Trevor

    Try not to worry too much at this stage. It's early days in your CLL. If it comes to having treatment, you are in a good place. There is a CLL specialist, Dr Anna Schuh, at the Churchill Hospital, Oxford, if you ever need a second opinion. She's an expert in our disease.

    All the best to you.


  • Yes im am just learning from this group how early my CLL seems to others on here. Sorry if i seem to be winging at an early stage but i am encouraged by how many people have been on watch & wait here for 10yrs+. On one hand it must seem a blessing but on the other its the torment on each blood test i expect. Thanks for you reply.

  • Hi yes i have just been diagnosed in last 2 months and i have good days and bad when i think about what if and will things change , its good to know others on this site understand us and how we feel at times . I too am nervous as i have another blood test next month which i am worried about and hope its ok . So stay as strong and positive as you can knowing that we are all here to support each other ☺

  • Hi.. Many thanks for your message. It is nice knowing that there are so many people like myself who also want to chat and offer help when it's needed. My next blood test is this Friday. I always kiss the test tube for good luck! Its worked so far.. 😊

  • Hi Trevorurin,

    How Banbury has changed since we lived there in the 70's!

    I hope that life is still good there though and that you can cope well with your diagnosis. Watch and wait is a pain, from early concerns to the treadmill of regular checkups. New treatments are already available and seem to be being refined.

    Having been diagnosed with CLL whilst living in inland Andalucia over 10 years ago I was put on watch and wait and it was just that - for 7 years. Then I became exhausted after any mountain walk beyond a few kilometres. I also began to get some urinary tract infections, enlarged spleen and lymph nodes. Soon after that the specialist in Granada recommended a course of chemo since my blood count had doubled within 3 months. The chemo was over 7 months and corrected the blood count problem although I felt just the same, no better no worse. Since returning to Bournemouth nearly 18 months ago the Bournemouth hematologist has recently put me on Ibritunib, blood count increased, and this has worked well reducing my oversize spleen so I actually feel hungry now! I find it interesting to see how the Paradigm step of these new drugs has worked to solve a previously unsolvable problem. Well done the medical profession and the scientists!

    It appears that CLL is now normally maneagable and I wish you luck on your journey.

  • After 2 marginally successful transfusions (rbc went from 8 to 8.6 then 8.6 to 8.8) My Cardiologist suggested that for rbc I take a daily dose of 500mg of vitamin C, 325 mg of iron and a product called Folbic. (it has folic acid and vitamins B6 &B12.

    I have not had a problem with rbc since then.fish 61

  • Hi Fish61. That makes sense i used to take vitamin c spray some time back. I will certainy now start on the vitc and iron supps. I was very encouraged to read you were diagnosed 10yrs ago. A lot of people who have replied to me seem to have had these long term diagnosis's. Makes my 6 month one sound pathetic. Im sorry if i seem a bit dim in this subject but I still panic to hell on each blood test. Thanks again for your reply.

  • Hi Trevor

    I know exactly how you feel. I was diagnosed almost two months ago and like you i am in watch and wait.

    I'm now fairly OK with the diagnosis but struggling to get my head around all the technical stuff...added to which i have a SEVERE needle phobia, so i daresay i have a struggle ahead heheh.

    I have to say though that i have picked up a lot of useful info on this forum already, so keep posting any questions in here.

    I am hoping that eventually some of it will start making sense to me.

    ; )

    All the best


  • Thanks Jamie..

    The people on here are so helpful. You are like myself, are an early diagnosis but i am so encouraged by how many people on here have been on watch & wait for 10yrs or more? A blessing on one hand but i expect hell on the other.

  • HI there, welcome to this site, I am newly diagnosed myself, just going on 2 months, so not sure I can offer too much advice, but have to agree with everyone else that this is the best place to get great help and support.

    All the best


  • Hi Elle

    Many thanks for your reply. Starting to realise that this site is going to be a great help to myself and everyone else on it.


  • Hi, Welcome to the club. I can't add anything to the good advice you've already been given & I feel lucky that I'm on W&W when I read what some are going through. I was diagnosed Oct last year & in truth I could have had CLL for many years before, because I feel no different to how I felt in those years. I have no discernable symptoms & my count is low as the Dr's keep telling me (I've had 2 sets of bloods taken), so I'm focussed on keeping it that way by trying as best as I can on staying reasonably fit & generally healthy. What I have noticed is that I'm a lot more wary of going into situations where I might get a illness like flu or another serious infection, because my Dr's have warned me that getting one could kick start my situation into something more aggressive/serious.

    Stay strong & positive & I'm sure your daughter will be coming to visit you for many more years to come.

  • Hi Alex. Many thanks for your reply. I also have noticed how easily I pick infections up lately. I was rushed to hospital with pneumonia a couple of months ago and then again with a water infection. (worst pain ever). Up to a few years ago i could go years and not have to ever see a doctor.

    I was half expecting to maybe get some sort of cancer as my mum died of breast cancer when I was eight. My dad had heart problems and died of heart attack some years ago and I now have coronary heart disease so I was sure it was just a matter of time.

    Here i go.. Not being very positive am I.. Sorry. I also get a dubious about sitting in a doctors waiting room. Sounds daft, I know but thats me.

    I have my next blood test Friday so i will post any infovasbi get it.

    Thanks again..


  • Trev, I hope the bloods are OK. I lost my younger brother to problems with his 2nd op on a Brain tumour nearly 2 years ago now & my mother died from cancer of the pancreas, although she was in her 80's when it happened, so I too thought I might get a cancer, but this was not the one I was expecting.

    I've always tried to keep myself reasonably fit & healthy & being on here has reinforced this view & you will see from many of the posts just doing a moderate amount of exercise on a regular basis can help, both to get/keep you fit & healthy & being this way also helps should you need treatment somewhere down the line.

    Stay positive & determined not to let the disease get the upper hand.


  • Alex.. From the little I have read on here so far it seems the general good advise is to stay positive and determind. Reading so many people with similar problems and feelings really helps. I am really glad I found this group!

    I try to keep active as i can but I also have two discs that are Pertruding in my spine so i am on a lot of morphine for that as well. I just have to do as much as i can.


  • It's not daft to be worried about sitting in a doctor's waiting room if you have low immunity. Just ask your doctor's receptionist where you can wait away from other patients because you have low immunity. I wear a facial mask while waiting for the doctor (they are commonly provided outside the waiting room in Australia as well as alcohol based hand washes). I've also been allowed to wait in the treatment room at one doctor's surgery. When I picked up my last lot of blood test results, my doctor commended me for wearing a mask, but also asked me to sit in a passage rather than the waiting room.


  • Hello Trevoruren,I was also recently told I have CLL after having a few infections although I have now been told its been around for years looking back I had quite a few infections over the years,its very scary but its all true it gets better once we get our heads around it although I think of it as a parrot sitting on my shoulder,this site has helped me so much we are among friends ,ask anything there is always somebody there and we are in it together.I really wish you all the best and remember the C stands for Chronic and it really is so take heart.best wishes Maggie [sunflower]

  • Hi Maggie

    Many thanks for your reply. I have learnt so much from just this message. Everyone on here seem so nice and helpful. I am really glad I found this group.

    I had a couple of scary hospital visits for infections but now I know whats happening, and why it doesn't feel so bad.

    Thanks again and all the best.


  • Thank you all so much for your replys and welcomes.

    I have learnt a lot just from this message and your replys alone. I just hope over time that I may feel confident and positive enough to be able to offer the same advice and reassurance I have been given so far. You really have all helped.

    Thank you.


  • Hi Trevor, I'd like to add my welcome to those you've already had. It's great to hear that you already feel better for having joined us.

    Until I found this site, I had felt very alone re my CLL. I had never joined an online group before and wasn’t sure what to expect. However, I was overwhelmed by the kindly support and encouragement of folk here. They answered my questions (usually very promptly), supplied all sorts of information, and are very understanding of the ups and downs that CLLers go through.

    I know you'll have loads of new information to absorb… However, a few months ago I wrote some posts specially for newly diagnosed folk, that you might find helpful. They are collections of points that I’ve picked up from other people here, and from my own experiences.

    I was prompted to write them, because I noticed when people are first diagnosed, they are usually NOT told about simple practical things that can do, to improve their prospects on the CLL journey.

    Yet there ARE things we can do – things to ease our CLL experience both medically, socially and emotionally. I’m not talking about the complex medical stuff, just simple, do-able stuff. After I wrote the first post, many people mentioned points of their own, which I have added to my lists. So, the lists became quite long.. But I hope you'll find something there that's relevant to your situation. :-)



    Do let us know how it goes on Friday.

    Wishing you well,

    Paula (in Sheffield)

    P.S. I used to have an aunt who lived in Banbury. Lovely part of the world!

  • Hi Paula. Thanks for your reply. I am quickly learning how helpful this site, and the people on it are. Its a minefield of helpful information that gives hope and comfort whenever needed. Many thanks.


  • Trev, you refer to this site being a "minefield of helpful information"...

    Hmm... Not quite sure what you mean by that... Minefields are full of deceptive dangerous things in unexpected places.... :-(

    But I guess with any site consisting of fallible human beings, we have to tread carefully. Not everything written here will be completely correct or relevant to every reader... We have to read what's written with open minds, and be ready to question things we're not sure about...

    Take care,


    P.S. I didn't want to sound too negative in what I wrote above. For me, the overriding thing about this site is its friendliness, mutual support, shared experiences, as well as LOTS of helpful information. It's been a lifeline to me. :-) It was just that your mention of a minefield got me thinking...

  • Hi Paula.. Sorry I proberly picked the wrong phrase to express my feelings about finding such a helpful and friendly site. Im on 28 tablets a day for various illness's and what i think and say may not be in sync. You described this site perfectly in your ps.


  • 28 tablets a day... That's a LOT, Trev. But I see from above that you have heart disease and spinal problems. I realise these things can be very complicated, and the medications can knock people back quite a bit...

    But don't worry about using wrong phrases sometimes. I actually found it quite helpful to think of the minefield analogy. All online sites have some element of a minefield. Most of the field is fine and good, but there may be a few dodgy patches we need to avoid.

    For you as a newly diagnosed CLLer, it's easy to feel overwhelmed by all the information coming your way. Just take a bit at a time. CLL generally moves slowly, so there's no need to rush and feel you have to learn everything at once.


  • I've been where you are - read my post I wrote some time ago for some consolation! Have had 4 years so far of remission after the 'gold standard' FCR chemo - but my white cell count is slowly going up again ... so will probably have treatment next year according to my Southampton Specialist but this time it will be new targeted therapy + rituximab (or similar).

    I have kept my white cell count down by taking a combination of Fucoidan and Modifilan capsules (Japanese brown seaweed extract) with Curcumin (form of turmeric) and Strong Green Tea extract capsules.

    Although it has not stopped the progression upwards - it has definitely slowed it down.

    I can send you more details if you wish on this .......... I was given this information by a Canadian therapist who has had success in treating Leukaemias.

    One more thing ... stop consuming sugar! Look at labels as sugar is in so many things! Even many fruits are not good if one has a cancer! Sugar feeds cancer cells, so either cut it out or cut right down!

    Best of luck. Tim (Guernsey)

  • There are very good reasons to reduce our sugar consumption, but starving our cancer cells is probably well down on the list:

    See Myth 4 'Cancer has a sweet tooth' here:


    "Another idea we see a lot is that sugar apparently ‘feeds cancer cells’, suggesting that it should be completely banished from a patient’s diet.

    This is an unhelpful oversimplification of a highly complex area that we’re only just starting to understand."

    Perhaps a mechanism other than feeding cancer?


    A previous post about the 'White Death':


    Here's the link to your previous post:



  • Hi Tim. Many thanks for your reply. I never realised that you could help control your blood cells with such simple methods. I am getting a lot of messages on this.

    Thanks again.

    Stay well


  • Hi Trevoruren,

    I was diagnosed with SLL/CLL back in May and I am also currently on W&W. I have blood tests coming up next week. Try not to worry about your test too far in advance, one day at a time is a mantra I repeat often in my head. I tell myself if I am constantly worrying, I'm not enjoying my life. Easier said then done sometimes, I know. I am glad you found this site, it has provided me with much support and information and I know it will do the same for you. Have a great rest of the day or night. :)

  • Hi Susan.. Good luck with your blood tests next week. I got a (no action needed) on my tests this week although I have not seen the readings yet. I have certainly found this site a great comfort so far.


  • Thanks Trev! A no action needed is reason to celebrate!!! :)

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