Being diagnosed tomorrow

[AdrianUK]

It looks highly likely I have CLL. I'm getting the results of immunotyping of my lymphocytosis tomorrow. The helpline isn't working. Anyone up for giving me any advice or support?

[UK-Sparky]

Hi Adrian, advice;

1. Don't Panic

2. If confirmed CLL trawl this site for facts

3. Find out what stage you are at and get a copy of your tests and blood results

4. If CLL welcome to the club you may not have wanted to join

5. As questions arise ask the consultant, check they are a CLL specialist, or ask the nurse specialist you should be assigned to

6. Finall...don't panic, life will go on, there are treatments and most of us will not need treatment for years

UK Marc

[AdrianUK in reply to UK-Sparky]

Thanks Mark. I've had an unusual presentation in that I was suddenly struck down with extreme fatigue and weakness, tachycardia, and a nasty pneumonia that hasn't resolved after three weeks of treatment so far. Lymphocytes around 20 and look suspicious under the microscope. Really hoping most of my symptoms are pneumonia related not CLL even if I have CLL. But dealing with my sudden loss of health has been challenging to say the least.

[baq724]

First of all, try to remain calm....if you are in fact diagnosed, you need to ask or seek out a specialist who only deals with CLL. They will be able to give you the best care and will consult with your local hematologist. Many advancements have been made on treatments for CLL and more and more each day it is becoming something that patients can live with even though there is no cure....yet. Some 30-40% never need treatment. Stay off of google...:lots of outdated statistics and information there. Feel free to ask any questions you have here. Many many knowledgeable people are here.

[Ballyhoo77]

Let's hope that it's not but if it is you will probably be in W.W for a long time. And there is so many new treatments, I think the cure is just around the corner. Wishing you the very best.

[AdrianUK]

I think what's worrying me most is that I've had such an extreme weakness and fatigue response to my recent illness over the last three weeks that it seems over the top for a pneumonia. Maybe it isn't. Maybe all my current symptoms are pneumonia related. But when I read about fatigue people experience and not being able to work etc it's alarming to me. And then I think back to the last couple of years before getting sick and realise that I have been slowing down a little bit for me. I used to work rediculous hours and then want to do loads of other stuff afterwards (I wrote two published books for example whilst also having a fulltime job). But over the last couple of years I've just dialed back on all that extra stuff and found work enough for me! So maybe gone from being hyper active to being normal. So with the retrospectoscope I find myself thinking have I actually been mildly fatigued for a while? Did this pneumonia happen as a result of undiagnosed CLL. Is my extreme exhaustion right now All due to the infection? How much will I recover if they get the infection under control? Why am I not improvIng quickly enough for my liking? And of course the fear that grips me if I let it is do I have a really aggressive form of CLL that has laid me waste! Sorry for this stream of consciousness? Can anyone relate to any of that?

[MilliePerth in reply to AdrianUK]

I think we can all relate to your fears and what you are saying Adrian. It is most definitely a journey and it is so hard not to try to put the cart ahead of the horse. Try as best you can to follow all the wonderful advice that has been written to you. Once you know more, you can find out the best questions to ask, should you need treatment. We have found counseling really helpful and this site. The thing we have learnt is that each person is unique and whatever lays ahead, you an individual too. Definitely find the best CLL specialist you can access. Take care. One of the good things about this site, is that you are never alone. Keep posting. Let us all know how you get on.

[Newdawn Administrator in reply to AdrianUK]

Hi Adrian.

I was about to look for written information for you relating to CLL (and will certainly do so if it would help) but as a writer and academic, I'd be amazed if you hadn't already been researching these matters. Unfortunately Dr. Google is useful but merciless in the hands of the fearful so don't be guided too closely by information on there unless it's from reputable sources. There a wealth of info on here to assist you should you receive a CLL diagnosis.

I'm sorry the CLL helpline isn't working but afraid I have no idea why.

This is my take on what you're saying. You've had a hard few years and are obviously depleted and exhausted generally. I'm not sure how long your ALC (absolute lymphocyte count) has been monitored but 20 is admittedly high. However, pneumonia could possibly account for the massive hike. Your WBC and C-reactive protein (indicating inflammation and infection) will be through the roof. I had severe pneumonia and sepsis last year and it drains the life blood out of you so don't be surprised to be totally exhausted.

I don't want to pre-empt the outcome of your results today/tomorrow (not sure which country you are in) but simply want to say there's plenty of advice and support on here should you receive a CLL diagnosis.

Please come back and let us know and the support of the community will be waiting for you.

Hope all goes well,

Newdawn

[duffymcgrif]

I was age 67 when diagnosed with CLL. Was in hospital with bad case of bronchitis and possible heart problems (ended not true there). During "routine" blood work, was found I could possible have CLL. Bone morrow test confirmed. Nothing changed for a year, after testing blood every 3 months. Then boom. Bottom fell out. Started out with Rituxan, but it quit working and now on Imbruvica. This sight is wonderful. People on here are going through the same things and sure have helped me. Keep checking this sight for help and answers and then address your Doctor. Hang in there. Your not alone.

[AdrianUK in reply to duffymcgrif]

Thanks everyone. I already feel that I am not alone. Yesterday I was indeed confirmed to have the diagnosis. I'm stage A. But my biggest concern at the moment is now to shift this pneumonia which (presumably because of the CLL) my body just isn't fighting off.

Actually my CRP isn't raised and I had almost no fever despite really quite severe symptoms. Do some other people on here find that their body doesn't really produce a fever or inflammatory response when it should?

Anyone know of any specific advice for doctors treating pneumonia in CLL? I've already come to realise that I'm going to have to educate doctors I meet regularly.

[AussieNeil Partner Administrator in reply to AdrianUK]

Lack of a fever response can indeed be an issue for some of us in being recognised as being seriously ill. CLL messes with our body temperature regulation.

It's also worth remembering that with neutropenic sepsis (potentially deadly very quickly), it is possible to have a low body temperature..