Glad to find a friendly looking forum of people facing a similar challenge. I was diagnosed last July having had pneumonia in Feb 2014 and follow up blood tests which raised concern about my white cell count. Last November my haematology consultant said he was discharging me back to GP care and recommended blood tests every 6 months. In all likelihood my (what I now know to be called) watch and wait period would be the status for some time to come.
So I've just had my first blood test since then and my cell count has gone up from 14 to 19. To me this doesn't sound massively alarming since the specialist said it would be a concern if it doubled in a twelve month period so I feel like it's OK. But having only had the test yesterday my GP has asked my to come in for another one on Monday and then come and see her (but she has not availability for a further 2 weeks!). That makes it sound serious. Am I too relaxed thinking a 14 to 19 increase is OK? Is my GP right to be concerned? I have nothing and no-one to compare my experience with.
Also I suspected the count would go up by some degree because my armpits have been aching a lot over recent weeks suggesting that something is going on with the lymph glands. Is aching armpits common?
I'm hoping that being able to communicate with people in the same boat as me is going to help me stop feeling so alone.
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Catherine67
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Welcome Catherine! And certainly don't feel alone...we're all out there nodding and understanding your fears.
Can you just clarify for us what you mean by your 'cell count going up from 14 to 19' in 6 months. Are you meaning your white blood count (WBC) or your absolute lymphocyte count (ALC)?
Neither sound alarming figures at all to me incidentally. How are you feeling generally?
Sorry Newdawn, yes I should have been clearer. 19 is the WBC. I was told over the phone that the lymphocyte count is 12.4, I assume that is the ALC? Feel OK apart from aching armpits.
It's a more useful indicator to plot the ALC in terms of CLL progression Catherine as the WBC can 'ebb and flow' in relation to infection, stress and other factors.
I'm wondering if there have been any changes to your other blood counts that your doctor may want to discuss or perhaps it's in response to the aches you are experiencing in your armpits. She may suspect an infection although aches in the armpits isn't so unusual in CLL. Lymph nodes can swell and recede in response to infection. Have you checked your temperature?
Don't panic...your lymphocyte levels are not desperately high in the scheme of things and how we feel can be a great indicator. There are people on here, as yet untreated, with lymphocyte levels in the hundreds. It's certainly not a numbers game and my WBC has jumped by that percentage at times.
It could be that your GP is simply being responsive because nothing you've said seems to indicate serious concern but if you continue to be worried, perhaps you could ask her for a quick phone consultation to put your mind at rest.
Let us know how things go and great to see you on the site.
Many thanks Newdawn. My GP doesn't even know about the aching armpits, she just asked the practice receptionist to call me to book another blood test based upon the results of the test yesterday. I don't know which numbers in particular are troubling her.
I must say I'm so glad to have found this group. I've learned so much more today than any doctor has told me up to now. They just gave me a diagnosis, explained the absolute basics, gave me a leaflet and that was that. And I really didn't know what questions to ask.
I have purposefully resisted trawling the internet for information on CLL because that can make things worse if it's not put into context. But this site is really good.
Fire away with any questions you might have Catherine. There's some very knowledgeable and supportive members on here who are always willing to help. I know from personal experience that we can be diagnosed and despatched with very little information initially.
I may be wrong but I think perhaps your GP has picked up on an infection that perhaps you're not even aware of...hence the aching armpits. There are many types of white blood cells each fighting infection in their own way and she'll be interpreting a wider picture. But it's not unusual in CLL and nothing to get too unduly concerned about. In terms of CLL 'numbers', you're still thankfully on the nursery slopes! And long may you stay there!
You didn't say what your ALC was 6 months ago so I don't know if there's been a significant increase there that she wants to discuss. They're important figures to watch.
Good idea not to rely too heavily on Dr. Google at the beginning until you can understand and balance the information. There's masses of info. on here. Just type in the search box for previous discussions and take a look at the previous topics. Regards,
I was diagnosed aged 47 in 2006, and have not as yet needed treatment.
I am on yearly visits to my Hospital Consultant, but it has become part of my ' normal ' health routine to be asked by my GP to have my blood checked if I am/have been feeling poorly.
I just treat this as my GP being thorough, so in reality, I have my blood checked usually three or four times each year ...
Welcome to our community. We're here to help each other through the challenges of living with CLL and to improve each other's quality of life with this generally slow growing blood cancer. You've done well keeping a cool head and restricting your initial internet research and now you've found us! You'll find that keeping calm will be an enormous advantage on your journey with what is still an incurable cancer (but hopefully not for much longer, going by the rapid introduction of new drugs lately). Newdawn has given you excellent advice to which I can add a couple of reassuring points:
1) CLL specialists don't worry about checking doubling time until your ALC gets over 30 (or a WBC of upwards of 40 when the other non - lymphocyte white cells are included), so you can relax about that.
2) Your doctor is most likely not familiar with CLL as it is a rare disease. Based on Australian Leukaemia Foundation research, in their career, the average GP sees about half a dozen cases of lymphoma of which CLL would be roughly about a third (i.e about 2 cases). So unless your doctor has seen another patient with CLL recently, you can soon learn more about CLL from this site than she knows!
3) In my experience, doctors look at the percentage of white blood cell make-up to quickly assess a patients health. That works well with non-leukaemia patients, but we have to look at the absolute numbers (because the increasing ALC distorts the percentages). Always ask for and keep a copy of your blood test results and monitor the trends. Don't get too concerned about individual changes in your white blood cell counts as they go up and down with infections, etc. (Even your ALC includes a mixture of the cancerous B-Lymphocytes and several different T-Lymphocytes. Normally T-Lymphocytes dominate, but once you get to an ALC of over 30, the cancerous B-Lymphocytes definitely dominate, so changes in the ALC above 30 are a good indication of what's happening in your blood.)
4) The ALC count is but a fraction of the total 'tumour burden'; it's just easy to check in a blood test. Depending on your particular expression of CLL, you may develop bulky lymph nodes and that can happen in different places. Perhaps for you it may be those under your arm pit. Their size can wax and wane with infections, etc. One of the checks your consultant should have done was a physical examination of the places lymph nodes typically enlarge, i.e. your groin, abdomen, armpits and neck. Mention your aching armpits to your GP at your next visit so that this symptom will be recorded and your GP can check with your specialist if concerned. Rapid growth of new bumps should always be checked out, but many of us live with our bumps and get familiar with their idiosyncrasies.
In summary, I suspect that your doctor is just being cautious and provided you feel well, I wouldn't worry about waiting a couple of weeks. However, if you become aware of sudden changes, call your GP's practice and see if you can be seen earlier, perhaps by another doctor. Other blood cell types can reduce over time as CLL progresses, but from what you've said, that's probably unlikely in your case.
As Newdawn says, search this site for more information and if you can't find an answer or want something clarified, don't hesitate to ask.
Thank you all so much for your answers and support, I am feeling soooo much calmer than earlier today. I live on my own with no friends or family nearby it's really hard sometimes not to get a bit upset but you gave all helped immensely
It's good to hear you're feeling much better now. I too felt very alone when I was first diagnosed, but it made SO MUCH difference to me, to join this site and get to know people here. I have learnt so much from them, and made some precious new friends.
So, I'd like to add my Welcome to you...
One thing you might feel, in these early days of "Watch and Wait", is that you wish there were things you can actually do, that will help in your journey with CLL. It was because of that felt need, that I put together a list of such things.
After I'd posted it, other people added extra points, and the list grew and grew, till now there are 3 parts to it! They are mostly simple, practical things, nothing too complicated. You might find them helpful. You also might like to add some points yourself. If there is "jargon" in them that you don't understand, please tell me and I'll edit it, because my idea is for it to be very user-friendly, especially for newcomers.
Wishing you all the best, as you start on your CLL journey...
Hi Paula, thanks so much for sharing the information you have put together, I really wish I had spotted that a while ago whilst on my own CLL journey - its fantastic!! (5 years this June - wbc around 55, next check up 5th May, fingers crossed....) - I haven't read all 3 parts yet, but I will!!!
I too had very poor support from the GP, as good as he is, I was left floundering with just a leaflet and then just my worries, but as I got used to watch and wait I decided to just get on with living too.....and goodness I have crammed lots in!! So, in a perfect world, your wonderful advice would be printed up and given to all those newly diagnosed so they too can get on with living well!! x
Lovely to hear from you. Your encouraging words about the "Coping strategies" post gave me a boost this morning. Yes, a lot of us wish we'd had that sort of information much earlier...
I've exchanged a few messages with Hairbear and Myrddin re ideas to get the post (after some editing), easily accessible on the parent CLLSA site. Then hopefully newcomers can find it quicker. I agree that in an ideal world, such advice would be printed and handed to the newly diagnosed... In reality, I'm afraid I can't see that happening...
However, there's hope that more doctors will quickly direct their newly diagnosed folk to the CLLSA,... Maybe we all need to suggest that to our medics....
I'm sorry you've had such poor support from your GP. I think many of us feel we're left floundering, when we first get our diagnosis. Good to hear that you're crammed a lot into your "getting on with living" since then. Go for it, girl...
Wishing you all the best for your May 5th checkup...
Lovely helpful people, great site. The site is always open so never feel alone, everyone is just an air wave away. Cannot add to the advice given, so I'm sending my best wishes.
Your blood counts are nowt to worry about and as Neil has said your GP is probably just being cautious as not many understand cll fully.
My white count varied greatly and slowly rose to 183 so your titchy white count shouldn't concern you at this stage. In fact after a nasty infection I was measured at 253 at one stage.
As far as nodes are concerned these do vary considerably from person to person and it may be if you have an infection that they will swell. Mine stablelised at around 3.5 cm under the arms and were occasionally painful. Other patients will report much greater problems so just keep your eye on them.
Having joined the cll club in 2000 and been in remission for 9 years I have recently started (January) treatment and have concluded 3 sessions of FCR my 4th session was due yesterday but has been delayed as my bloods have not recovered enough to continue.
I was on watch and wait for the first 5 years then after first treatment back to w&w for 9 years.
Try and live as normal a life as possible whilst on this stage but do bear in mind you may be susceptible to getting infections that others could shake off more easily.
Main thing is don't worry you are not alone whilst you have access to the many expert and experienced patients on here. Don't be concerned about asking questions no matter how silly you think they are we have all been through the same concerns!
I wish you well on your journey long may you be on w&w
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