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[9876]

hi I am new and a little in shock, diagnosed 2 weeks ago, after having a routine blood test back in May the gp called me back to repeat it as my white blood count slightly high, second test still slightly high so refered me to heamotology, asked doctor at time, could it be anything serious which she replied no, waited nearly four months for appointment at hospital, wasn't worried, so went alone, barely sat down when Dr said I think you have a form of leukimia called cll,talk about shock, she took more blood and I went two weeks ago , when it was confirmed, she also has taken more blood for a fish test? And I have to go back in two weeks for those results, don't really understand all this and having been searching the internet when I came across this site, I am in my middle 50's , my white blood count is 19 ,with my lymphatics being10, Dr said rest of my blood count are in the normal range. Scared of the future and at a loss what to ask at next visit

[AussieNeil Administrator]

Welcome 9876,

Even though you didn't want to be in this situation, you'll find understanding support and much to reassure you on this site. I was in my early 50's when I went through what you are going through now. After the month delay between the first suspicious blood test showing falling immunity and the second to confirm that the change wasn't transient, I was diagnosed with stage IV CLL/SLL within 2 weeks and I still haven't had treatment. A large proportion of us never do need treatment. Your haematologist will probably tell you what stage you are at your next appointment (and a higher stage number isn't as bad as it is with other cancers, because of the chronic, slow growing nature of this cancer). You'll also be tracked by regular appointments to assess the rate at which your CLL is changing and it seems fairly stable from what you've said. The number to follow in your blood tests (if you wish to) is your Absolute Lymphocyte Count (ALC) - what you called your lymphatics. It is very good news that your other blood counts are in the normal range (mine weren't).

FISH testing is not always done, but is useful as it will show if you have one of the more difficult varieties of CLL that may need treatment earlier. If you get a 'Normal' FISH result, that just means that the genetic basis behind your CLL doesn't fall in the limited categories included in the FISH panel.

Have a read through the pinned posts and via the site search for topics of interest to you and work out what questions you want answered at your next specialist appointment. Ask away here on questions you can't find answers to and to finalise your list of questions for your specialist - and take someone with you next visit!

Neil

PS Pinned posts/questions, which cover the important topics and commonly asked questions, can be found here: healthunlocked.com/cllsuppo...

[pitbull]

Hi 9876,

I don't have much to offer above what Neil has said but I will welcome you to the site even though you would rather not be a member. As said this is a friendly group of people who all understand and have been through what you are experiencing now. We all support each other and exchange information.

I was diagnosed on Valentines day 2013 and like you had a non urgent appointment with a haemotologist after 3 months. Numerous tests later and lots of questions I am now in a routine of appointments where I have my bloods checked and have a chat with my consultant. My last appointment last month resulted in him telling me he didn't want to see me for a year unless things went wrong. My initial ALC was 36 they are now 46 and other bloods are reasonable though not normal.

I do lead a relatively normal life with this and have vowed to not let it beat me, read up but don't frighten yourself, as Neil said, some people never neeed treatment and advances in research is moving on at quite a pace.

May I suggest you join the CLLSA cllsupport.org.uk/ as there is lots of useful information there. They also hold regular seminars around the country during the year which are well worth attending to meet others affected and get medical views, I have been to 2 and they are very informative.

Macmillans is also another good resource for help and support.

Good luck hope all your markers are good ones

Kirk

[Oleboyredw-uk]

Welcome 9876,

Interesting Id, wish I'd came up with that one!

Neil has pretty much covered it all. My view is CLLSA, MacMillan and here are you best starting points for internet information.

One word of caution, if/when you start reading about treatments be careful as you will find different drugs and approaches for different countries, if in doubt check back here as there are people here from Australia, Canada, UK and USA with experience as patients, carers and professionals,

i'm sorry you've arrived here, however, you are welcome,

Rob

[ygtgo]

Ask him to explain what happens next ...

a) in regards to your examination/tests and

b) in regards to what advice he can give to help you with any symptoms of CLL that you might face.

The haemotologist will probably want to have regular tests to see if there is any pattern in the blood counts this is standard practice - for me it was every 3 months for the first couple of years, then every 6 months, and for the last 4 or 5 years it has been yearly.

Any minor symptoms will be dealt with through your GP ... but ask if there is a contact in the Haematology Dept that you can use, if you feel that you need attention between your Hospital appointments.

Ask if he has any literature or online sites ... that he would recommend.

Let us know how you get on ... you will find that the people on here totally understand, and are only too willing to help if they can.

[Hidden]

Welcome 9876 to this community where you will find support and understanding as you can see from the previous replies. Here there is knowledge when you need it, but in these very early days, just coping with a diagnosis you did not expect is a bit hard to deal with.

Plenty of good advice in the links Neil, Kirk and Rob gave. I think I will add that this site is up to date, and surfing for more information on the web may turn up old or incorrect information which will not help and could make you worry more.

Hard to do, but maybe limit your enquiring to short sessions, or you could fry your brain with the amount of technical information available on this site, which may not apply to you, and certainly not at this early stage.

We are, as Rob said sorry you find yourself here, but glad you found this community of people who have gone through what you are experiencing now.

Best wishes

Bubnjay

[Hidden]

Following on from ygtgo's good advice at the consult, suggest you ask for a print out of results, which may not mean much now, but will be helpful in the future as you understand more about the illness we share.

Bubnjay

[cacherjac]

Hi 9876,

welcome, for a group that never wanted to get together in the first place, this group are so helpful and supportive, it has amazed me.

I was only diagnosed in a similar way to you after routine blood tests prior to surgery. That was end august this year and ive been through every emotion since, even wanted to give away my house to save writing a will! I realise now that was a huge over reaction out of sheer panic.

please do read and learn but stick to recognised sites, like this and macmillan, I scared myself to death reading everything I can find then found a lot was very old and out of date, and other stuff just innacurrate.

Remember too, this site includes all countries and treatment is very different in usa to uk.

got to go to work now, will check in in you later.jacs

[Newdawn Administrator]

Hi 9876,

I want to add my warm welcome to you. We may have CLL but we also have the support of each other and there's isn't a single person who hasn't experienced the fear and bewilderment you're feeling at the moment...and it's emotionally brutal! I remember the feelings so well from my dx 30 months ago and I was so grateful for the support and advice from fellow CLL'ers.

It's tempting to immediately add links which are technical in detail but at diagnosis, I'm not sure I could have fully absorbed them because it's a new world of complex jargon and like Bub says, can 'fry your brain' if you try to absorb masses at once. But slowly they'll start to make sense.

I'm not sure if you're from the States as FISH testing is rarely offered at a first appointment in the UK. It's a detailed test to profile the chromosomal make up of your unique CLL (we all have variations on a theme) and it can give the medics a snap shot picture of prognostic factors and perhaps what kind of treatment would suit for the future. But that's a simplistic explanation and it can change over time. The other thing that doesn't change is whether it's mutated or unmutated...the former being a better prognostic outcome generally. This article explains;

cll-nhl.com/2014/04/mutated...

There's lots of very useful introductory links for newly diagnosed on this site which will be much more current and less scary than some of the information on the Internet.

The important thing is that you go at your own pace, decide who you want to disclose this to because that has implications and get support and advice whenever you need it. I'm not sure if you have a partner/family, but this will be a tough time for them too.

But your figures are not at scary levels 9876. Your other blood results are within normal limits and it sounds like you're feeling well in yourself. This condition is more of a 'life sentence' than a 'death sentence' and there's no reason to feel immediate fear. Take a deep breath and steady yourself, you've had a massive shock! You're ok, have CLL at a time when it's very much on the research and treatment radar and as Neil said, some CLL'ers never require treatment.

Ask your doctor for results of your blood results so you can bring them back and learn what they mean at home in your own time. This chart explains normal blood levels;

cllsupport.org.uk/uybresult...

Hoping your consult goes well. Let us know how you get on and feel free to bring any questions back to the site. There's always someone keen to help on here.

Warm best wishes,

Newdawn

[stunned]

Welcome to the CLL family, a family who will not only help and support you but pick you up when you having an off day and celebrate in any good news.

Everything that has already been said above is so so true BUT......

Very little help is ever offered by the medical team looking after your CLL for your mental health. Being dx with CLL can cause so many mental issues, anxiety, depression, worry, stress and they need addressing if you feel you are struggling to cope with your emotions and those of your loved ones.

You don't have to worry alone and there are so many of us who have experienced mental and emotional issues associated with our CLL.

So we are here whenever you need to talk, ask questions or just rant about anything at all.

And we have all ranted about one thing or another.

Best wishes Anne x

[9876]

Thank you all for your kind words and support, wrote original txt late last night when to many thoughts enter my head and feeling overwhelmed, cold light of day and feeling much more positive especially after all the replies, I do think I was frying my brain with too much information and have been scaring myself to death reading everything, still haven't told many people as not ready to face their reactions, it was bad enough having to tell my children and comfort/ reassure them that wasn't popping my clogs any time soon, I live in London uk and since reading different sites it does seem unusual that I was given the fish test as routine( might need help understanding the results when I receive them). The Dr did say I was at the very first stage and I have no enlarged spleen or swollen lymph glands,( wasn't really taking in a lot that day) too shocked over results,was told to carry on my life as normal . I am glad I have found somewhere to talk about cll

[saintjohn]

Hi 9876

Welcome to the club.As you can see from the replies above,you will get all the support and help you could wish for in here.In some way's the information and the understanding/caring you'll get is far more reassuring than what you'll probably get from your medical team,They know how to treat us, but forget that being told you have a form of cancer is one of the most frightening and difficult thing's you'll probably ever have to deal with,Thanks to the wonderful people in here your sanity will remain when thing's get tough,because having their support and knowledge will help you through any dark moment's you might encounter.

regards

John x

[9876 in reply to saintjohn]

Thanks John, must admit was taken aback as to how clinical and matter of fact the heamotologist was in telling me the news, just part of her routine day to her , but getting my head round all this new world and glad I have found this community

[silverbirch]

hi 9876

i am also a new member to this group as well although it is my husband that is the CLL patient and we can also relate to what you said about the hematologist being so matter of fact about the diagnosis........it took us three visits to the hematology dept before my husband got a proper diagnosis...

i hope you continue to get your head around your new situation and you have made one positive start by joining this group.

caz

[jangreen]

Hi as you are in London Uk are you seeing a cll specialist or your local hospital? Best wishes and hope this site has been as useful to you as it has been to me.

[9876 in reply to jangreen]

Hi, I am at my local hospital, don't know wether to be referred to a cll specialist at this early stage, what would the benefits be?its all so new

[AussieNeil Administrator in reply to 9876]

9876, first off, you should be getting better care because you are at least seeing a haematologist. Quite a few CLL patients have to make do with just seeing an oncologist (hard tumour but not necessarily blood cancer expertise, though there are some oncologist/haematologists). You'll do better yet if you see a haematologist with specific expertise/experience in CLL according to a Mayo Clinic study done a year or so ago.

If you are at a low stage and your CLL turns out to be boringly stable or slowly progressing, you might be fine with your current, convenient arrangement. You can always ask for a second opinion at key decision points (not satisfied that your concerns are being met, treatment recommended, etc).

Neil